Mental Health Care of Deaf People: A Culturally Affirmative Approach

Mental Health Care of Deaf People A Culturally Affirmative Approach

Mental Health Care of Deaf People A Culturally Affirmative Approach

Edited by

Neil S. Glickman Westborough State Hospital Assumption College

Sanjay Gulati Harvard Medical School The American School for the Deaf Westborough State Hospital

2003

LAWRENCE ERLBAUM ASSOCIATES, PUBLISHERS Mahwah, New Jersey London

This edition published in the Taylor & Francis e-Library, 2008. “To purchase your own copy of this or any of Taylor & Francis or Routledge’s collection of thousands of eBooks please go to www.eBookstore.tandf.co.uk.” Senior Consulting Editor: Editorial Assistant: Cover Design: Textbook Production Manager: Text and Cover Printer:

Susan Milmoe Kristen Depken Kathryn Houghtaling Lacey Paul Smolenski Sheridan Books, Inc.

Most illustrations on CD provided by Michael Krajnak. This book was typeset in 10/12 pt. Palatino The heads were typeset in Palatino

Copyright © 2003 by Lawrence Erlbaum Associates, Inc. All rights reserved. No part of this book may be reproduced in any form, by photostat, microform, retrieval system, or any other means, without prior written permission of the publisher. Lawrence Erlbaum Associates, Inc., Publishers 10 Industrial Avenue Mahwah, New Jersey 07430 Library of Congress Cataloging-in-Publication Data Mental health care of deaf people : a culturally affirmative approach / editors, Neil S. Glickman, Sanjay Gulati. p. cm. Includes bibliographical references and index. ISBN 0-8058-4469-4 (alk. paper) 1. Deaf—Mental health services—United States. 2. Deafness—Social aspects. I. Glickman, Neil S. II. Gulati, Sanjay. RC451.4.D4 M44 2003 362.2’087’2—dc21 2002029414 CIP

ISBN 1-4106-0757-7 Master e-book ISBN

Books published by Lawrence Erlbaum Associates are printed on acidfree paper, and their bindings are chosen for strength and durability.

Contents

List of Contributors

xii

Preface

ix

Prologue: My Story

xxi

Jan DeVinney

1

Culturally Affirmative Mental Health Treatment for Deaf People: What it Looks Like and Why it is Essential

1

Neil Glickman

2

Psychiatric Care of Culturally Deaf People

33

Sanjay Gulati

3

Psychological Evaluation of Deaf Children

109

Terrell Clark

4

Culturally Affirmative Inpatient Treatment With Psychologically Unsophisticated Deaf People

145

Neil Glickman

5

Sensory Strategies for Self-Regulation: Nonlinguistic Body-Based Treatment for Deaf Psychiatric Patients

203

Diane Trikakis, Nancy Curci, and Helen Strom v

vi

6

CONTENTS

Culturally Affirmative Residential Treatment Services for Deaf Children With Emotional and Behavioral Disorders

239

Judy Vreeland and Jim Tourangeau

7

Culturally Affirmative Substance Abuse Treatment for Deaf People: Approaches, Materials, and Administrative Considerations

261

Debra Guthmann and Katherine A. Sandberg

8

Toward Culturally Affirmative Assessment and Treatment of Deaf People With Sexual Offending Behaviors

305

Susan Lemere

9

Does God have a Cochlear Implant?

327

Michael A. Harvey

Epilogue: When the Therapist Is Deaf

347

Sanjay Gulati

Appendix: Contents of the Accompanying CD Skill Card Illustrator: Michael Krajnak

373

Author Index

417

Subject Index

423

List of Contributors

ILLUSTRATIONS: Michael Krajnak, BA Westborough State Hospital CONTRIBUTORS Terrell Clark, PhD Boston Center for Deaf and Hard of Hearing Children Nancy Day Curci, MA, OT/L Westborough State Hospital Jan DeVinney, MS Maine Bureau of Rehabilitation Services Deborah Guthmann, EdD Fairview University Medical Center Michael A. Harvey, PhD, ABPP Private Practice, Framingham, Massachusetts Susan Lemere, LICSW Staffier & Associates Katherine A. Sandberg, BS, LADC Fairview University Medical Center Helen Strom, OTR/L Westborough State Hospital Jim Tourangeau, MS The Learning Center for Deaf Children vii

viii Diane Trikakis, OTR/L Westborough State Hospital Judy Vreeland, MA Walden School

LIST OF CONTRIBUTORS

Preface Neil Glickman Westborough State Hospital Assumption College Sanjay Gulati Harvard Medical School The American School for the Deaf Westborough State Hospital

This book is concerned with the practical work of creating specialty mental health services for deaf people. Our main focus is on those deaf people who do not see themselves as disabled, but rather as a linguistic and cultural minority. The literature most relevant to our enterprise is therefore that of cross-cultural psychology rather than of disability psychology (Glickman, 1996b) . We do not address the needs of late-deafened or hard-of-hearing people in any great depth, because they almost always maintain a cultural identity as hearing people—there is as yet no “hard-of-hearing culture.” However, many of the ideas developed here are applicable to hard-of-hearing people and to those who became deaf early in life and were raised “orally,” with English as their primary language. We believe that clinicians familiar with cultural deafness are more comfortable and more capable of working with people with every type of hearing loss. Our contributors do not view deafness as a disability. Therefore, they do not explore the kind of question implicit in the disability model: how does one adjust to and accommodate a disability. Instead, they ask how to provide mental health treatment that is actually relevant and helpful to a group of people who too often have been patronized or mistreated in the “hearing” institutions—schools, social services, and health care—that claimed to care for them.

ix

x

PREFACE

The “cultural” view of deafness has been 40 years in the making,1 propelled by the linguistic discovery that sign languages are languages (Pollard, 1992, 1996), by the general failure of oral educational methods, and by the struggle for minority civil rights. Our contributors build on the pioneering work of a generation of deaf and hearing clinicians and advocates. Our clinical predecessors include Edna Levine and Helmer Myklebust, who published influential early books on the “psychology of deafness” in 1960 (Vernon, 1995). The pioneers with deaf children were Hilde Schlesinger and Kay Meadow. Their 1972 work Sound and Sign (Schlesinger & Meadow, 1972), along with Eugene Mindel and McCay Vernon’s 1971 work They Grow in Silence (Mindel & Vernon, 1971) influenced a generation of mental health professionals to see deafness differently. Dr. Schlesinger’s clinic, the University of California Center on Deafness, gathered an extraordinary collection of researchers and clinicians whose many achievements included a seminal book; Mental Health Assessment of Deaf Clients: A Practical Manual, although now 15 years old, is in no way out of date (Elliott, Glass, & Evans, 1987). The first psychiatric inpatient facilities for deaf people were established at Rockland Psychiatric Center in New York (key figures there were Franz Kallman, John Rainer, and Kenneth Altschuler), and St. Elizabeth Hospital in Washington, D.C. (Luther Robinson). McCay Vernon (Vernon, 1990) and more recently Robert Pollard (University of Rochester Medical Center and Deaf Wellness Center) have advanced the understanding of culturally appropriate psychological assessment of deaf people. Excellent clinical work and research along culturally affirmative lines now comes from a variety of centers. Linguists, psycholinguists, and anthropologists have become fascinated by deafness, and their findings inspire educators and mental health clinicians. As part of the deaf civil right revolution, deaf people themselves have gained access to previously denied education. Influential early deaf role models and teachers included Larry Stewart, Glenn Anderson, Allen Sussman, and Barbara Brauer. The work of these and other leaders and specialty mental health programs is reflected in an important document, Standards of care for the delivery of mental health services to deaf and hard of hearing persons (Myers, 1995). The growth of our subspecialty is also evident in the establishment of Gallaudet University’s Conference on Deafness and Mental Health in 1998, and in the proliferation of regional conferences and local mental health associations, such as the Massachusetts Mental Health Providers for the Deaf and Hard of Hearing. WHAT DO WE MEAN BY “CULTURAL AFFIRMATION?” A culturally affirmative program provides opportunities for cultural involvement and growth for the patient who desires it. Cultural affirmation should not be mistaken for cultural promotion: It does not push a particular 1

Really, the remaking. The idea that deaf people have their own language and way of being has been considered off and on for centuries.

PREFACE

xi

cultural orientation on those who do not want it. Instead it stands in opposition to the standard medical or “pathological” model, where deafness is seen as a disability for which deaf people are to be pitied or from which they should be “cured.” The relationship of the attitude of cultural affirmation to other views of deafness can be understood through the following diagram: Cultural Cultural Cultural Cultural Cultural L L L L Promotion Affirmation Sensitivity Insensitivity Rejection Starting at the far right, cultural rejection or denial is the attitude held by those who deny the importance of sign language or contact with deaf adults for young deaf people, those who see deafness only as illness or an obstacle to be overcome. The fact that one rejects the idea of Deaf culture does not mean one cannot be a kind, well-intentioned person. But a mental health professional with this attitude is unlikely be trusted by culturally Deaf people. Cultural insensitivity is the position of the average mental health program in regard to deafness—an attitude of simple ignorance, without malice. The clients of a therapist with this attitude, for example, might say, “I had to teach her everything about deafness.” Early in the treatment, the therapist might have asked basic questions: “What’s a TTY?” or “But why can’t you lip-read?” Cultural insensitivity is also shown when programs attempt to serve deaf people without educating themselves about deafness. Next, cultural sensitivity implies some knowledge of deaf people’s special needs and abilities, such as knowing to provide an interpreter for a client who uses sign language. People develop cultural sensitivity through open-minded interaction with members of a community willing to share their experience and perspective. Skipping nowto the far left of the diagram, cultural promotion is a task for Deaf theater and arts, for political advocates, and for bilingual schools. It is the life project of many Deaf people. But in a mental health setting, cultural promotion carries risks. It can be disrespectful of a client’s actual degree of cultural identification; a client might feel more or less culturally Deaf. It can inappropriately focus attention on the client’s identity instead of his mental health needs. It can imply that the client is not acceptable the way he is. When clinicians carry a political agenda of any sort, it will interfere with their ability to listen and empathize with any particular client. Our chosen approach, cultural affirmation, goes beyond cultural sensitivity because it includes having cultural competence, relevant self-awareness, and special knowledge and skills (Sue, Arredondo, & McDavis, 1992). But it does not go so far as cultural promotion because our goals are promoting clients’ health, success, and happiness, not “consciousness raising” or fostering political change. A client might discover positive aspects of Deaf identity in an affirmative program. But we must respect our clients’ opinions and provide them the freedom to seek their own solutions to the problems of deaf identity and politics.

xii

PREFACE

Culturally affirmative mental health programs have been established since the 1980s through Deaf community advocacy and the growing appreciation on the part of mental health providers that culturally Deaf people, like other cultural and linguistic minorities, often fare poorly in the mental health system. Cultural affirmation differs considerably from the minimum legal standard mandated by the Americans with Disabilities Act and other laws, which require that services designed for hearing people be made accessible to deaf people. In practice, this most often means simply hiring a sign language interpreter for some portion of the clients’ service. Laws do not require modifying programs in any essential way or establishing specific Deaf-centered programs. Every culturally affirmative program faces the challenge that what is optimal for one client may not be for another. Imagine three new patients arriving at the Mental Health Unit for Deaf Persons at Westborough State Hospital (Deaf Unit), in Westborough, Massachusetts. (Both editors and several contributors are affiliated with this program.) The communication specialist determines that the first client, who has suffered nearly complete deprivation of language in childhood, requires communication in a pure American Sign Language (ASL), supplemented with gesture and mime. Thereafter, the team strives to use pure ASL with him, and arranges for him to have special ASL tutoring. The second client communicates comfortably in Pidgin Signed English (PSE), using a mixture of English and ASL. She might feel confused and intimidated if everyone tried to communicate in pure ASL. The team strives to match her need for PSE. The third client is a nonsigning, orally deaf person. When he was referred, we explained that our unit provides a signing milieu. He had the choice of going to a “hearing” hospital, but he chose our program because he knew deafness would be seen as normal here. For him, the team must use English primarily while still maintaining a signing environment for others—not an easy task. The point is that although we accept and nurture Deaf culture and ASL, we serve each unique deaf person as best we can. Cultural affirmation is an attitude, not a straitjacket. BUT IS DEAFNESS A CULTURE? Some people take issue with the concept of a deaf culture. Certainly it is true that signing deaf people share the majority of their values with the hearing people of their geographic region: They watch the same television shows, do most of the same things with friends, and want the same good jobs. Many “culturally Deaf” people actually spend the majority of their time with hearing people. But there is a striking discontinuity of opinion and perspective that seems to us to justify the use of the word culture for a certain group of deaf people. Most obviously, culturally Deaf people use sign language and experience it as a primary language. They value sign language first and the ability to interact with nonsigners second. Most hearing

PREFACE

xiii

people see things quite differently, valuing a deaf person’s ability to speak even a little more highly than that same person’s ability to communicate well in sign. Essentially, most hearing people are “deaf” to sign language. Furthermore, there is a visual “way of being” that goes with not hearing. In broad generalization, this includes being exquisitely attuned to body language (try hiding your feelings from a deaf person), excelling at mime and drama, and being visually perceptive. A visually perceptive hearing man, Leonardo da Vinci, long ago noticed the eloquence and expressiveness of deaf people’s use of their bodies and recommended that artists study them (Rée. 1999). There are other features typical of culturally deaf Americans, such as interpersonal directness and the striking use of humor. Suggested readings that expand on this topic can be found at the end of chapter 2 in this volume. Finally, and most important, Deaf people consider themselves a cultural group. Can hearing people question them? Deaf culture would largely disappear with the disappearance of the language difference, although elements of it would remain as parts of the larger culture, such as baseball signs and football huddles. When the entire population of several towns in Martha’s Vineyard were bilingual in English and Martha’s Vineyard Sign Language, in the 19th century, there was only a single, bilingual culture (Groce, 1985). Similarly, if deafness is one day “cured” through the perfection of cochlear implants and the identification of all the genes for genetic deafness, resulting in the abortion of deaf fetuses or genetic treatments for deafness, deaf culture will cease to exist. (The fact that many hearing people consider such abortions acceptable whereas most Deaf people would consider them eugenic is another discontinuity of opinion that seems to justify the notion of Deaf culture.) Deaf culture is unique among human cultures—it arises from a language barrier and a physical status. It is different too in being passed on more often from peers and nonrelated parents, rather than from the deaf child’s own parents, who are most often hearing. By a strict anthropological definition, deaf culture might more precisely be described as a subculture. This small distinction seems irrelevant to our purposes. We suggest that the skeptical reader talk with some culturally Deaf people and decide this issue for himself. TO WHOM DOES THIS BOOK APPLY? Although many of the chapters in this volume describe specialized programs for signing Deaf people, cultural affirmation does not depend on the client’s having a certain type or depth of cultural identity (Glickman, 1996a). It provides a relevant perspective, we believe, for mental health treatment of all deaf people. The major case studies presented in the prologue and in chapter 9, for example, are of a late-deafened adult and child. There is no doubt that a large group of deaf people, the majority if one includes late-deafened people, do experience their deafness as a terrible loss

xiv

PREFACE

and tragedy. This group of deaf people often has no affiliation with signing deaf people and no desire for such an affiliation. When counseling these deaf persons, helping them adjust to and cope with what they perceive to be an enormous misfortune is a relevant clinical theme. But even for these clients, a culturally affirmative mental health clinician might work differently. A relevant parallel might be what happens when a homosexual person seeks mental health treatment. A counselor who appreciates that gay and lesbian people can lead healthy, productive lives can offer a perspective that validates whatever identity and lifestyle the patient has or develops, without prejudice or discomfort. Similarly, a counselor who knows about deafness feels more comfortable in working with a hardof-hearing person, a late-deafened person, or an orally raised deaf person. The culturally competent counselor understands the entire range of communication, identity, social, and other issues that might arise peripherally in the treatment of anyone with hearing loss, even those who are culturally hearing. Just knowing that deafness can feel normal radically changes such a therapist’s perspective on a client’s hearing loss. See, for example, the work of contributor Michael Harvey in helping late-deafened people move from seeing their hearing loss as a deficit to understanding it as a difference to be accepted (Harvey, 1998). The title of this book: Mental Health Care of Deaf People: A Culturally Affirmative Approach reflects our belief that our model has some applicability to all deaf persons. The title is also meant to acknowledge the existence of a cultural model of deafness, its implications for work with all deaf people, and its growing espousal by a new international community of mental health providers. One issue that we do not tackle is the issue of deaf people with multiple cultural identifications. Espousing Deaf culture does not mean someone is not also Japanese, Haitian, or native American. References for additional reading in this area can be found at the end of chapter 2. Another specialized area that we leave untouched, sadly, is deaf-blindness. WHAT’S IN THIS BOOK? Most of this book’s chapters describe specific culturally affirmative programs, or treatment approaches for deaf clients with specific needs. All address some dimension of the triad of attitude, knowledge, and skills that characterizes culturally affirmative work with minority persons (Glickman, 1996b; Sue, Arredardo, & McDavis, 1992). We open with “My Story,” a first-person account of mental health care gone seriously awry. Jan DeVinney, a late-deafened woman who is currently the director of the Division on Deafness at the Bureau of Rehabilitation Services for the state of Maine, was hospitalized for depression at the Maine Medical Center in 1996. She eventually sued the hospital under the Americans with Disabilities Act. Her suit was joined by state and federal authorities, resulting in the hospital’s agreeing to institute a detailed policy

PREFACE

xv

for better serving deaf people, a policy that will now serve as a national model for hearing hospitals serving deaf people. Sanjay Gulati and Neil Glickman served as expert witnesses in her case, which vividly illustrates the need for specialized services for deaf people. She is the only client whose real name and actual identifying details appear in this book; all others have been heavily disguised. What should a specialized program for deaf people look like? In chapter 1, “Culturally Affirmative Mental Health Treatment for Deaf People: What it Looks Like and Why it is Essential,” Neil Glickman distinguishes culturally affirmative mental health treatment from the lower standard of “accessible” treatment. He challenges the assumption that simply providing an interpreter creates full accessibility to mental health services for a deaf client, showing that even having a “deafness expert” on staff does not solve the problem. He goes on to describe what a complete culturally affirmative program looks like, using Westborough State Hospital’s Deaf Unit as the primary example. In chapter 2, “Psychiatric Care of Culturally Deaf People,” Sanjay Gulati provides a primer for psychiatric work with culturally deaf people. He presents essential information about deafness from the fields of linguistics, anthropology, and education. He describes common clinical issues and practical aspects such as using an interpreter. He also answers the most common question that hearing psychiatrists ask: “Do deaf people hear voices?” In chapter 3, “Psychological Evaluation of Deaf Children,” Terrell Clark, the director of the Boston Center for Deaf and Hard of Hearing Children, at Children’s Hospital, Boston, covers the choice and application of psychological tests for deaf children, illustrated with numerous case examples. A 4-year-old immigrant child presents with no exposure to sign language or deaf culture. Because of her extensive knowledge and skills in working with deaf children, Dr. Clark could evaluate this child in a manner that is culturally affirmative because it recognized positively the capacities of the child as a deaf person, including the potential for future involvement with both deaf and hearing communities. As she puts it, “culturally affirmative psychological evaluations of deaf children are performed by applying specialized skills and knowledge, appreciating the context of the individual child, and genuinely respecting the culture, language, experiences, and values of Deaf people.” The editors regret that we were unable to persuade Robert Pollard to take time from his many current projects to contribute a parallel chapter concerning the evaluation of deaf adults. Fortunately, Dr. Pollard’s work is widely available in his own writings. Chapters 4 through 8 describe specialized areas of culturally affirmative care. The premise of these chapters is that deaf persons in nonspecialized programs do not receive treatment interventions designed to meet their special needs and that nothing short of this level of adaptation and specialization will reach them. In chapter 4, “Culturally Affirmative Inpatient Treatment With Psychologically Unsophisticated Deaf People,” Neil Glickman describes work with

xvi

PREFACE

one of the most significant subpopulations among deaf persons referred for mental health care, those often referred to as “low functioning.” He describes how the team at Westborough State Hospital has refashioned treatment interventions to work with this group, whom we prefer to call psychologically unsophisticated. Like other chapters from Westborough, this chapter includes the remarkable artwork of Michael Krajnak, a Deaf man who is currently (2003) the communication specialist on the Deaf Unit. Michael creates visual materials that help us explain difficult concepts using minimal English. Chapter 5, “Sensory Strategies for Self-Regulation: Nonlinguistic BodyBased Treatment for Deaf Psychiatric Patients,” concerns the role of occupational therapy at the Deaf Unit at Westborough. The authors are Diane Trikakis, Nancy Day Curci, (present and former Deaf Unit occupational therapists), and their supervisor, Helen Strom. They describe their success in adapting Sensory Movement Interventions (SMI), a standard occupational therapy appoach, for use with deaf clients. SMI is minimally dependent on language. It teaches patients to soothe themselves when they are anxious or upset and to increase their level of alertness when sluggish or depressed. The staff of the Deaf Unit has embraced these ideas as enthusiastically as the patients, using them to improve work performance and take better care of ourselves. We take pleasure in presenting this work to the larger mental health and deafness community. Chapter 6 is “Culturally Affirmative Residential Treatment Services for Deaf Children With Emotional and Behavioral Disorders.” Walden School is a therapeutic residential and day school within The Learning Center for Deaf Children in Framingham, Massachusetts. TLC pioneered bilingual–bicultural education in the United States, and Walden School shares its culturally affirmative viewpoint. Judy Vreeland, the director of Walden School, and Jim Tourangeau, TLC’s dean of students, describe the many challenges to running such a program. Their case examples illustrate such work at its best. The Minnesota Chemical Dependency Program at Fairview University Medical Center pioneered culturally affirmative substance abuse treatment. In chapter 7, “Culturally Affirmative Substance Abuse Treatment for Deaf People: Approaches, Materials, and Administrative Considerations,” Debra Guthmann and Katherine Sandberg follow a representative deaf client through their program, describing the specialized assessment and treatment approaches he receives. They consider the administrative issues in creating such a program. (Administrative issues in creating culturally affirmative programs are also considered in chaps. 1 and 6.) They generously provide materials from their program for the reader’s use. Further materials are available from their program, 1-800-282-3323 V/TTY. Chapter 8, “Toward Culturally Affirmative Assessment and Treatment of Deaf Persons With Sexual Offending Behaviors,” addresses the issue of sexual offending among deaf clients. The author, Susan Lemere is a former Deaf Unit social worker who specializes in both substance abuse and sexual

PREFACE

xvii

offender treatment with deaf people. Difficulty with sexual boundaries can be seen as a particularly challenging and dangerous subset of social difficulties. Susan is a hearing second-language learner of sign. Her work, like all treatment provided by hearing persons on the Deaf Unit, is done in collaboration with Deaf professional and paraprofessional staff. Through this cross-cultural collaboration, we seek to bring both clinical and communication/cultural expertise. Susan’s chapter presents her and the Deaf Unit’s fascinating new work in this area. Michael Harvey, a psychologist who has pioneered culturally affirmative work, presents a difficult case in chapter 9, “Does God Have a Cochlear Implant?” His clients, a hearing, biracial couple struggle with whether to seek cochlear implantation for their son, who was born hearing and became deaf at age 6. Which identity should this child have? Who should decide? Is he naturally deaf because he now doesn’t hear, or is he natively hearing because he was born that way? The case material is enhanced through comparison with racial identity issues. Dr. Harvey’s daydreams regarding his clients’ struggle over the implant nicely illustrate the difference between cultural affirmation and cultural promotion. We close with a celebration of the varied voices of Deaf clinicians. In “When the Therapist is Deaf,” Sanjay Gulati explores cultural affirmation as explained by deaf therapists in a series of personal interviews. We hope to leave the reader with a sense of the vitality and intelligence that empowered deaf people bring to their work. SOME NOTES ON NOMENCLATURE The use of Deaf for culturally Deaf and deaf for audiologically deaf is now standard in the field of deafness. Another recent solution, used by Lane et al., is to capitalize the entire word when intending the cultural meaning: DEAF (Lane, Hoffmeister, & Bahan, 1996). We have chosen the first option, using the capitalized Deaf only where the cultural aspect of deafness is being specifically emphasized, and the lowercase otherwise. Throughout the text, American Sign Language is transcribed in English “gloss” using fully capitalization, in the manner that has become standard in deafness. For example, STORE I GO represents the ASL sentence “I am going to the store.” Such glosses are reductive (the three-dimensional spatial nature of sign and its facial grammar and body language are reduced to a single dimension), but serve adequately for readers familiar with ASL. Those unfamiliar with ASL should not assume that ASL is ungrammatical because the phrase would be ungrammatical in English. ASL’s grammar is as strict as that of any other language, only the rules are different. With regard to the gender of pronouns, we have chosen to avoid the awkward constructions “he or she” and “his or her” by alternating or assigning gender randomly.

xviii

PREFACE

Finally, because it is known as a TTY in American Sign Language, we have chosen to retain the older term “TTY” (teletypewriter) in preference to the newer “TDD” (teletype device for the deaf). Similarly, we have preferred “lip-reading” in most instances to the academic word “speechreading.” THE APPENDIX AND COMPACT DISC The text is accompanied by a compact disc, the contents and use of which are presented in the appendix. It contains the communication and substance abuse assessments, and the sample drug treatment tools developed by the Minnesota Chemical Dependency Program and described in chapter 7. It also contains many of the psychosocial skill cards described in chapter 4 and others described in the Appendix. All these tools have become indispensable on the Deaf Unit. We hope readers will use and adapt these materials for different settings, including work with hearing clients who have limited verbal or conceptual abilities, and we invite readers’ feedback. WHO ARE THE EDITORS? Neil Glickman is cofounder and current unit clinical director of the Mental Health Unit for Deaf Persons. The Deaf Unit is part of the Massachusetts Department of Mental Health, and is located at Westborough State Hospital in Westborough, Massachusetts. It is the only inpatient unit of its kind in New England. Dr. Glickman is adjunct faculty at the Institute for Social and Rehabilitative Services at Assumption College in Worcester, Massachusetts. A graduate of Gallaudet University’s masters program in rehabilitation counseling and the University of Massachusetts, Amherst’s program in counseling psychology, he is a licensed psychologist and certified rehabilitation counselor. With Michael Harvey, PhD, he edited Culturally Affirmative Psychotherapy with Deaf Persons, published by Lawrence Erlbaum Associates in 1996. Dr. Glickman is a hearing, second-language user of ASL Sanjay Gulati is a child psychiatrist who works full time in deafness in a variety of settings: an outpatient service (Cambridge Hospital, Cambridge), on the Deaf Unit (where he is now a consultant), at a psychoeducational evaluation clinic (the Boston Center for Deaf and Hard of Hearing Children, Children’s Hospital, Boston), and at the American School for the Deaf. In addition, he chairs the Group for the Advancement of Psychiatry’s (GAP) Committee on Disabilities and teaches medical students, residents, and fellows in child psychiatry at Harvard. His research interests include the behavioral consequences of language deprivation and, with GAP, the experiences of deaf medical students under the ADA. Dr. Gulati’s work in deafness arose from his own experience of progressive hearing loss. After completing his medical training in 1992, he interviewed with Hilde Schlesinger for a position at the University of California Center on Deafness in San Francisco. Over hot cocoa and chocolates at a local “chocolate bar”—

PREFACE

xix

easily the most enjoyable interview in his life—Dr. Schlesinger explained that “to understand deaf adults you need to understand how deaf children develop,” and advised that he train further as a child and adolescent psychiatrist instead of taking the job. He took her wise advice, completing his training at Harvard before beginning his career in deafness. ACKNOWLEDGMENTS Neil Glickman thanks the staff of the Westborough State Hospital Deaf Unit, whose creativity, talent, and dedication constantly inspire him. These staff members include Sanjay Gulati, Bruce Hurter, and Philip Candilis, psychiatrists; Susan Salinas, Susan Lemere, Terry Morrell, and Greg Fisher, social workers; Diane Trikakis and Nancy Day Curci, occupational therapists; Michael Krajnak and Charles Garabrant, communication specialists; Wendy Petrarca, Susan Jones, and Russell Ross, interpreters; Joann Cremins, Jan Nute, Greg Shuler, John Scannell, Afua Danso, Donna Peacott, Teckler Chikomo, Jean Granger, and Rose Mascari, nurses; Omar Olazabal, Fatima Silvestre, Debra Middleton, Sam Appiah, Bev Angeles, Deborah Abelha, Clarence McKenzie, Laura Martin, Kwame Amoah, William Clark, Brenda Perry, Robert Duff, Sara Dugas, Alicia Jones, and Susana Diaz, mental health workers; and Stacey DeRienzo, medical records clerk. The Deaf Unit could not survive and thrive without the active support of Westborough State Hospital and Department of Mental Health administration including Steve Scheibel, Dan Lambert, Jyotikaben Patel, Denise Rab-Wilson, Theodore Kirousis, Barbara Lou Fenby, Lynn Hoffman, Mary Ellen Foti and Commissioner Mary Lou Sudders. It’s a delight to work for an agency in which the hearing administrators “get it” when it comes to the need for culturally affirmative mental health treatment for deaf persons. Neil wishes to thank the clients of the Deaf Unit. It has been said that one learns counseling from one’s clients. Neil thinks this is especially true with culturally different clients and with clients like John, described in chapter 4, who are “psychologically unsophisticated.” Neil also thanks Sunjay Gularti, Michael Harvey and McCay Vernon for their close readings of the text, and Sherry Zitter for her helpful suggestions to his chapters. Michael Harvey has been a mentor and friend for over 15 years and his influence is felt throughout this work. Neil thanks his life partner Steven Riel for his love, encouragement, and constant support. Sanjay Gulati thanks Westborough State Hospital (medical director Jyotikaben Patel) and Cambridge Hospital (John Wechter) for providing writing time, Terrell Clark for ten years of teaching him about deafness, and mentors Timothy Dugan, MD and Robert Ziegler, MD, who made his career possible. He thanks those who read and commented on the drafts of various chapters: psychologist and mentor Terrell Clark, PhD; psychiatrists Craig Buchholz, MD, David Gendron, MD, and David Pepper, MD; educator and

xx

PREFACE

employer Ray Stevens, PhD; Deborah Barber; and Harvard Medical School students Chris Prichard and Shannon McDonald. He is deeply indebted, professionally and personally, to those who have welcomed him into the Deaf world. He thanks Neil Glickman for tolerating his Aesop’s hare style of working, and for serving as a model of creativity and thoughtfulness. Finally, he thanks wife and daughter, Maureen and Ilina, for so lovingly supporting this project. Both editors thank our gracious and intelligent editor at LEA, Susan Milmoe, as well as other talented LEA production staff including Paul Smolenski, Art Lizza, and Erika Kica. REFERENCES Elliott, H., Glass, L., & Evans, J. W. (Eds.). (1987). Mental health assessment of deaf clients: A practical manual. London: Taylor & Francis. Glickman, N. (1996a). The development of culturally Deaf identities. In N. Glickman & M. Harvey (Eds.), Culturally affirmative psychotherapy with deaf persons. Mahwah, NJ: Lawrence Erlbaum Associates. Glickman, N. (1996b). What is culturally affirmative psychotherapy? In N. Glickman & M. Harvey (Eds.), Culturally affirmative psychotherapy with deaf persons. Mahwah, NJ: Lawrence Erlbaum Associates. Glickman, N., & Harvey, M. (Eds.). (1996). Culturally affirmative psychotherapy with deaf persons. Mahwah, NJ: Lawrence Erlbaum Associates. Groce, N. E. (1985). Everyone here spoke sign language. Cambridge, MA: Harvard University Press. Harvey, M. (1998). Odyssey of hearing loss: Tales of Triumph. San Diego, CA: Dawn Sign Press. Lane, H., Hoffmeister, R., & Bahan, B. (1996). A journey into the Deaf-world. San Diego, CA: Dawn Sign Press. Mindel, E. D., & Vernon, M. (1971). They grow in silence. Silver Spring, MD: National Association for the Deaf Press. Myers, R. (1995). Standards of care for the delivery of mental health services to deaf and hard of hearing persons. Washington, DC: National Association of the Deaf. Pollard, R. Q. (1992). 100 years in psychology and deafness: A centennial retrospective. Journal of the American Deafness & Rehabilitation Association, 26(3), 32–46. Pollard, R. Q. (1996). Professional psychology and deaf people: The emergence of a discipline. American Psychologist, 51(4), 389–396. Rée, M. (1999). I see a voice: Deafness, language, and the senses: A philosophical history. New York: Metropolitan Books. Schlesinger, H. S., & Meadow, K. P. (1972). Sound and sign: Childhood deafness and mental health. Berkeley: California University Press. Sue, D. W., Arredondo, P., & McDavis, R. (1992). Multicultural counseling competencies and standards: A call to the profession. Journal of Counseling and Development, 70(4), 477–486. Vernon, M. (1990). The psychology of deafness. New York: Longman. Vernon, M. (1995). An historical perspective on psychology and deafness. JADARA, 29(2), 8–13.

Prologue: My Story Jan DeVinney Bureau of Rehabilitation Services, Augusta, Maine

It was a dark and stormy night—no, actually it was a lovely late summer evening in 1996—when I was hospitalized on the psychiatric ward of the Maine Medical Center in Portland, Maine. Because their services were inaccessible to me as a deaf person, my stay there was a nightmare. After leaving, I sued the hospital under the Americans with Disabilities Act, and won a consent decree in which the hospital agreed to make many improvements in their services. Here is my story. I am a late-deafened woman, a mental health professional, and the married mother of two children. I hardly had room in my life at the time for a catastrophe. By day, I coordinated a community support program for deaf people with major mental illnesses (Maine’s first), and attended classes toward a masters degree in rehabilitation counseling. By night, I became a carpenter, working on our home. For several weeks prior to my hospitalization, I had been installing doors, cabinets, countertops, casings, and trim so my family could move from the basement to the living quarters of our new home. In between, I tried to deal with a serious problem: the recent loss of the last of my hearing. Despite our attending family therapy, my husband and sons were having great difficulty adapting to the increased difficulty of communicating with me. That summer day, my work was temporarily calm. My clients were housed, fed, employed, and well stocked with their medications. It was Friday, and a rare quiet afternoon awaited me. Over a glass of wine I had a good talk with a friend outside, then settled down in front of the TV with my husband. He answered the phone. Learning that one of our sons had collapsed while watching a school football game, he dashed out. I paced and worried, alone in the house, not knowing if our son was dead or alive. Had I still been hearing, I would have tried to get more information, or at least could have called a friend to hear a supportive voice. Now that I was deaf, I felt trapped and alone. xxi

xxii

PROLOGUE

They arrived home more than an hour later. I was relieved to see my son unhurt, but needed to know what had happened. Neither my son nor my husband would make the effort to communicate with me. Embarrassed, or maybe excited to call his friends and tell them the story, I remember my son standing motionless in my bedroom, telephone in hand. I snapped inside, snatched the telephone from his hand and screamed at him, “you see what it’s like being totally cut off from communication!” I was clearly responding to something larger than the evening’s events. This was hardly the first time that my family had been unwilling or unable to communicate with me. Four years earlier, I had experienced an episode of Major Depression. A few months before the football game, fearing that it was returning, I had restarted my antidepressant medications. For several weeks, I had been eating and sleeping poorly, and had suffered from periods of confusion. I had begun to feel increasingly overwhelmed, and just that week I had dropped my classes for the semester. The incident with my son left me feeling that I had become incompetent to care for my own child in a crisis. As I thought it over, a long list of the things that I had now become unable to do scrolled before my eyes. “Face it,” I thought, “life just isn’t worth living now that I’m deaf.” Sitting in my workshop smoking one cigarette after another, I felt completely cut off from my family and from the rest of the world. “I just can’t do this anymore,” I thought. “Everyone will be better off without me. I’ve just been pretending that my deafness is no big deal. But it’s a huge deal, a huge problem. How I hate myself for going deaf!” Realizing finally that I needed help, I went back in the house to the TTY, and tried to call the crisis hotline. Although they were supposed to be deafaccessible, they hung up on me repeatedly. Finally, I got through to them by using the state’s relay service. The phone counselor I talked to was clueless, responding to my despair with the odd comment that my job seemed to be my first priority. I sat, crying desperately, drowning in the feeling of isolation created by my deafness. I became more possessed by the thought of suicide. There was some old scotch in the cupboard, and some pills in the medicine cabinet. I could finish the job with the running blade of my table saw. My agency had just fashioned a crisis plan for our deaf clients, which called for emergency evaluations to take place at the Maine Medical Center (MMC). It was clear that now I, the program coordinator, was in crisis! I grabbed my medications, my favorite pillow, some cigarettes, and my insurance card, and drove to the hospital. Entering the emergency room, I told the nurse that I was deaf and was having a nervous breakdown. The old-fashioned phrase seemed to describe how I was feeling perfectly. She nodded, and took my name and insurance information. One by one, the nurse called the other patients’ names, leading them into the emergency room. I had understandable speech, and was a good lipreader. I was able to make some sense of sounds through my hearing aids. I

PROLOGUE

xxiii

knew people often did not realize that I was profoundly deaf, so I reminded the nurse that I would not hear my name, and stayed close to the reception desk. I felt exposed there amidst the Friday night hustle and bustle of the state’s busiest emergency room. I wished I could move to a quiet corner. After escorting a few more patients past me, the nurse walked by again with no one in tow. “My turn?” I guessed. Annoyed, she led me to a curtained cubicle in the noisy emergency room. Hearing aids amplify everything, whether speech or background noise, and in the noisy emergency room I could not understand anything at all. It was after midnight. I curled up and dozed off on the bed. A doctor woke me, and tried to question me. “I can’t hear,” I protested, but he kept on talking. “Can we move to a quieter place to talk?” I asked. “Sorry, you need to stay here,” he replied. What was he thinking? I gave up and rambled on, guessing at his questions. He left and I drifted off to sleep. A nurse woke me and led me to another room. I hoped that this would be a quiet place where lip-reading would be easier. The new room was windowless, and had only one dim light fixture high in the ceiling. The bed was attached to the wall with large bolts. A screaming woman was wheeled by in five-point restraints. She was surrounded by people in lab coats and police uniforms. A guard appeared outside my door. I noticed that the room was empty of anything sharp or loose that might be used as a weapon. “This must be the place for crazy people,” I thought. “I’ve become one! How can this be happening to me?” I was struck by the irony that it was the purpose of my job to help my eight deaf clients avoid the very situation in which I now found myself. At 5 a.m., a young woman appeared, a Filipino psychiatry resident with a strong accent. Between my deafness, my mental state, and her accent, I couldn’t understand her at all. I sobbed. I have since been asked why I did not request a sign language interpreter at that moment. I was new to being profoundly deaf, and had never previously needed to use an interpreter in a medical setting. I was also used to struggling to hear, and could often function fairly well in one on one conversations. Finally, I was depressed and exhausted, and wanted someone to care for me rather than needing to advocate continuously for myself. Having professional experience on the other side of the mental status exam, I guessed away at the psychiatrist’s questions. She took notes. When I said I could not understand her, she moved closer, until she was literally “in my face.” I did not feel understood or cared for by her. Unbelievably, she said something about the possibility of “fixing” my deafness with a cochlear implant, as if she were prepared to perform the surgery then and there. “Someone please help me,” I thought. “I can’t hear and I’m losing my mind!” The doctor left, and two escorts appeared. We took the elevator to the 6th floor, and passed through a locked door. I must be on P6, I realized, the locked psychiatric ward. A kind nurse conducted another intake interview.

xxiv

PROLOGUE

When I told her that I could not handle being completely deaf and that my life did not feel worth living, she answered that it was time to stop taking care of everyone else, and to let others take care of me. She promised that they would help me. She noted my deafness and my use of American Sign Language in the chart. It was 6 a.m. Outside, dawn was breaking. The nurse led me to my room. With its large quantity of my new roommate’s personal effects, it looked like a combination of an ordinary hospital room and a college dorm room. There was heavy metal mesh over the windows. I lay down and slept deeply until noon. I awoke with a start, having forgotten where I was. A nurse came in with a pad of paper and wrote down her name. Written communication! I requested a TTY to call my husband and to tell him what had happened. I hadn’t taken the time before leaving home to leave him a note. (It turned out that he had assumed I’d gone to a friend’s house.) Instead of a TTY, she brought me an amplified phone. “No,” I said. “I really need a TTY.” I had given up on amplified phones just a few months before, when the frustration of trying to hear had finally outweighed the pleasure and convenience. Becoming unable to hear on the telephone had been a major contributor to my social isolation, and had undoubtedly increased my risk of recurrent depression. The nurse came back soon with the oldest TTY I have ever seen. It was broken. I became angry. She offered to call my husband for me. Meanwhile, they searched the hospital again, and eventually located a more modern TTY. But the comedy of errors was not over: The new TTY was missing its adapter. I launched a verbal tirade about the obstacles I faced due to my deafness, which seemed to be just as bad here—where I was supposed to be understood and cared for—as they were outside. “The ward is not set up for deaf patients,” they said. “It should be,” I replied. “There are laws that require it!” Contacted by the nurses, my husband arrived. He was concerned and bewildered, not yet realizing how serious my depression had suddenly become. I told him about the TTY problem. He helped me make a fuss. First they found an adapter that didn’t fit, then, 3 hours later, one that did. They set up the TTY in the unit’s main conference room. I asked my husband to call my boss, a friend, and my sister. I especially wanted my friend to get in touch with one of my professors, Reid, and explain why I had dropped my classes. After my husband left, I retreated to my room with a jigsaw puzzle. The ward was empty. No one had told me what to expect from the hospital. I didn’t even know how the meals worked. Other patients were eating in the day room. Unable to chat with them, I got a tray of food and took it to my room, where I ate the food cold, once more feeling desperately alone. Although I probably needed hospitalization, I decided that I could not stand the communication inaccessibility and insensitivity to my deafness on P6. I requested to be released. I was a “voluntary” rather than a commit-

PROLOGUE

xxv

ted patient, and had the legal right to leave. However, they explained that if I left “against medical advice,” my insurance company wouldn’t cover my stay. In other words, I was legally voluntary, but financially involuntary, and had to stay. No one had yet mentioned an interpreter. I expected one to arrive any minute. Surely they knew that deaf people use interpreters to talk with hearing people. A nurse came to my room to invite me to the nightly “wrap-up” group. “Will there be an interpreter?” I asked. “No,” she replied. With no way to follow the conversation, I declined to join the group. The nurse’s invitation and my refusal were repeated like clockwork each evening after that—they never did find an interpreter for that group. I needed to call my son to reassure him that my hospitalization was not his fault, and to tell him I loved him. The door of the conference room was locked. I asked the ward receptionist to let me in, but she said that only “my” nurse could do that. My nurse was busy with wrap-up group. I lost my temper, and threw a pencil. Hearing patients could make and receive telephone calls 24 hours a day, I objected, but my access to the outside world was going to be limited to making outgoing calls only from a stupid locked conference room! Reduced once more to tears, I ran back to my room. My roommates watched as I lay on the bed and turned my face to the wall. I was a prisoner. Later in my stay, they did make a schedule for me to use the conference room when they didn’t need it. However, I was never able to receive a single TTY call while on the unit. I ate another meal alone in my room. I started a giant jigsaw puzzle of the Golden Gate Bridge and began a journal. No energy. Battles to do. No accessible TTY. Closed captioning on the TV? I doubt it. Educating them. Last night the nurse told me I would learn this weekend to accept help … Wrong! I have to care for myself as usual … I’m getting more and more isolated with less and less energy to help myself, as well as less desire to try.

A nurse brought in a medication to help me sleep. I cried myself to sleep, and awoke the next morning still feeling exhausted. I found my breakfast tray and set off for my room. This time I was stopped and told to join the other patients in the day room. “I can’t hear anyone, and don’t want to watch how easy communication is for hearing people!” I answered. I ate, cried, worked on my puzzle, which seemed to be missing a few pieces, and wrote furiously in my new journal. At least the blank pages seemed to understand. The journal helped me then, and it helped me again later, when I needed to remember the details of my hospitalization for my lawsuit. To my surprise, my professor Reid showed up! I had only wanted to send him a message. I was embarrassed at first, then genuinely happy to see him. Lacking a private place to talk, we set up chairs in the hallway. This conversation was the only actual therapy I got in the hospital. Reid does not sign. He knew me and was patient, but it still wasn’t easy to communicate. At

xxvi

PROLOGUE

one point, when he raised his voice above the din, another patient promptly joined the conversation. Reid sent her away politely but firmly. I told Reid how things were for me. I explained that at school I had always worn armor, striving to show myself as perfectly capable. I wanted to be seen as having had gone deaf and “risen above it” by attending classes with interpreters. Inside, however, I had slowly become a depressed and beaten creature. Reid was compassionate, and gave me some straightforward advice that started me on the long road back to the world of the fully alive. After 2 days, I was allowed to go outside three times a day for “fresh air passes” lasting 15 minutes. I could smoke again! At the end of my second fresh air pass, I took a different elevator back up to the ward, and ended up at the far end of a hallway. I rang the doorbell several times, but nothing happened. I was afraid that my 15 minutes would run out and I would lose my new privilege. A janitor came by and pointed at a speaker mounted on the ceiling. Apparently, they were talking to me by intercom from inside the ward, having forgotten that I was deaf! That night, after my third fresh air pass, there was yet another incident. No one had told me that when returning to the ward at night I should check with security at the front desk. I breezed past the desk, nodding, and was startled a moment later when the two security officers stopped me from behind, demanding to know what my business was. Other patients talked and learned the ropes from one other, but made little effort to communicate with me. I reached out to only one, a man whose room was across the hall. Like me, he was a mental health professional. I tried to ask him how it felt being a patient instead of a professional. He answered me in a few sentences, none of which I understood. I did the old head nod and smile, then walked away as fast as I could. I avoided him the rest of the time since he was one of those people I could not understand at all. Monday finally arrived. I looked forward to meeting my doctors, creating a treatment plan, and—I hoped—beginning my recovery. Despite all my complaints over the weekend, there was no interpreter for this crucial meeting. Once more, I guessed my way through an interview. The team assigned me to various therapy groups. I demanded, none too politely, that they provide interpreters. At an occupational therapy group the leader simply told me I didn’t need an interpreter. I bit my tongue, saving my energy for other battles. While the group members discussed their goals, I sat like an idiot, with no idea what was going on. After the introductions, I worked on a simple craft project. They were condescending. “Such nice work,” they said, “How well you work independently … so creative. You should take up a hobby working with your hands.” I seethed, but didn’t have the energy to lash out. Was it my deafness or my depression that made it impossible for them to imagine that I had just designed and built my own home, and was every bit as educated as they? My outbursts got me assigned to an anger management group. But there was no interpreter! I told them plainly that for me, sitting around role playing aggressive, assertive, and passive behavior was “bullshit.” “I am angry

PROLOGUE

xxvii

because my civil rights as a disabled person are being violated!” I explained. They responded with a homework assignment: some exercises to help me learn to accept what I could not change. One evening a woman walked in and signed, “Hi.” Excited and relieved, I signed while speaking, “You must be the interpreter.” She repeated my sign. “That’s how you sign interpreter?” From my next question, she learned the sign for “psychiatrist.” Disturbed, I inquired about her training and learned that she was a hospital volunteer who had taken some sign language classes. She was the hospital’s answer to all my requests for an interpreter! Mental health interpreting is among the most demanding type of interpreting, and they had sent me someone unable to sign! I asked her to go back and tell them that she was not competent to interpret. If I complained myself, I feared the staff would just see more evidence that I was a difficult patient. The woman offered to call her sign language teacher—a Deaf man whom I happened to know quite well—to interpret for me. I asked her how one deaf person could possibly interpret for another. “Oh yeah,” she replied. MMC did eventually provide some interpreting time, but their staff never really “got it.” They seemed unable to get their brains around the fact that I could speak but could not hear. I needed advocacy support. I knew the state’s Director of Deaf Services for the Department of Mental Health, and asked my husband to call her. She was unable to get back to me due to the TTY set-up, which did not permit me to take incoming calls. I asked for the hospital’s ADA coordinator. No one knew who that was, or whether they even had one. One nurse thought I wanted the American Dental Association. When I yelled about violation of my civil rights, one staff member said, “Civil rights? You’re white!” One day, I noticed a card taped to a lamp near the medication desk. I became excited as I read, “Advocate for the Deaf.” “Help is on the way!” I thought. The phone number was long distance. The way the TTY was connected, I didn’t know how to make a long distance call. No one could tell me where the card had come from, or whether someone had already spoken with the advocate. It turned out that they had tried to get her help with arranging interpreting. I never did meet her while hospitalized, but we met much later, and we are now close friends. Even when I did have an interpreter, I often found the treatment I received on P6 inadequate. In a medication education group, for example, I volunteered that it could be dangerous to suddenly stop taking an SSRI (Selective Serotonin Re-uptake Inhibitor) antidepressant. I had stopped taking mine just before being hospitalized because of insomnia and night sweats, which I suspected were medication side effects. The group leader contradicted me, incorrectly stating that SSRI’s did not cause night sweats, and suggested that I might be experiencing menopause. I certainly wanted to hear that at the ripe old age of 40! By my third day in the hospital, I finally figured out that patients were expected to request their own medications every day. I didn’t even know

xxviii

PROLOGUE

the medication schedule. Since this procedure was used to see if patients were competent to manage their medications, they must have concluded that I was not. I took to shouting my litany of civil rights violations to everyone within earshot, until I realized I really was beginning to sound crazy. Through my journal writing I gradually realized that I needed to take time to grieve my hearing loss. Losing my hearing had affected every facet of my life. As a late-deafened person, I did not have the sense of identity that members of the Deaf community feel. I also realized that being angry with staff was outward-directed, and therefore easy and safe. The grieving that I needed to do was internal and therefore terrifying. Far from being a safe and supportive place to grieve and heal, the hospital had worsened my problems through their staff members’ denial, ignorance, and minimization. I grieve their hurtful reactions to this day. The treatment team on P6 diagnosed me with an Adjustment Disorder. They believed that I had become acutely suicidal in an overreaction to my son’s collapse at the football game. They overlooked my progressive deafness, my history of a depressive episode, and the other stresses in my life. They did see that the communication barrier in my family had contributed to my reaction. They addressed this issue by inviting my husband and teenage sons for family meetings, for which they provided an interpreter. (Evidently they thought that I needed an interpreter to communicate with my family, but not with them!) My kids heard again what they had already heard in family counseling the previous year: the importance of using sign language at home and including me in conversations. After two of these family sessions and a 4-hour pass to go home, my managed care company refused to cover a longer stay. Their decision was based on my diagnosis of Adjustment Disorder, which is less serious than Major Depression because it does not necessarily require medication treatment and does not carry a high risk of suicide. I was discharged, supposedly cured. The day after my discharge I suffered the worst anxiety I have felt in my entire life. I was scared of being alone, still depressed, and still a danger to myself. I didn’t know where I would find help. They told me to find a therapist who could sign—something they hadn’t thought important in the hospital. I was supposed to call the hospital social worker the next morning, but had never talked to this person and had no idea how to contact him by telephone, much less by TTY. I also needed to find a psychiatrist for antidepressants, but had not been told how to do so. My husband called the hospital for me. He was able to obtain a prescription for an antianxiety medication, which helped. He found out that there was a 4-month wait for a psychiatrist there. Would I be alive in 4 months? He called back, and pleaded with them to find someone sooner. The next day they called to suggest a psychiatrist new to the state. Unfortunately, he was a close friend of MMC’s chief of psychiatry. I had no choice but to work with him. This man knew nothing about deafness or acquired deafness. I al-

PROLOGUE

xxix

ways felt guarded talking with him about my hospitalization (and later about the lawsuit) for fear he would terminate me due to his conflict of interest. But he did know his medications. In a long intake interview, I told him which medications had worked for me in the past. He readily restarted them. After a few weeks of adjusting the dose, my depression finally began to lift. For therapy, I went back to a therapist whom I had seen off and on in the past, although she did not sign and was therefore no longer an easy person for me to work with. Although I felt better and had my life somewhat back in order, I was unable let go of the anger—the boiling rage—that I continued to feel toward MMC. I had gone there expecting understanding and expert care. Instead, I had found the barriers around my deafness multiplied, and I had experienced condescension and stigma. The professionals had been ignorant of deafness. When I had complained, they had labeled me a crazy mental patient. I had been forced to advocate for myself continuously, at a time when I felt weakest and least able to advocate. I had not received any useful treatment there. To add insult to injury, I had been misdiagnosed, resulting in a premature discharge that left me at continued risk to myself. Later, when I was independently evaluated as part of my lawsuit, three professionals determined that in addition to having had a major depression, I had developed posttraumatic stress disorder as a result of my hospitalization. I remain astonished by the degree of the hospital’s minimization of the problems I faced due to my acquired deafness. I myself had minimized the impact of my deafness for years. In fact, I have learned since that as many as 80% of people who become deaf become clinically depressed, a higher percentage than that for any other acquired disability, including blindness, paraplegia, and even quadriplegia. The loss of communication, that which makes us human, is simply devastating. (Deaf people who grow up signing, of course, feel normal because they have communication.) If I could not get basic accommodations, I wondered, how could other deaf people get them, those who could not speak, who could not rely on written communication, who did not know their rights? How many deaf people had the hospital discriminated against in the 23 years since the Rehabilitation Act of 1973, or in the 6 years since the even stronger Americans with Disabilities Act (ADA)? Many of my clients might need hospitalization; they would probably receive even worse treatment than I had. At work, I began to feel I needed to protect my clients from the professional “hearing world.” When my beeper went off, I would hit the ceiling, having lost my confidence that I could handle the next crisis. In the end, I never returned full time to my previous position, and I eventually changed from clinical to administrative work. I was permanently scarred by my experience. As I looked back and worried that my clients would go through what I had, the idea that I should do something about it took hold in my mind. A month after discharge, I began investigating the possibility of a lawsuit. I wanted to force MMC to admit their ignorance regarding deaf people and

xxx

PROLOGUE

change their policies. I also wanted an apology for how I had been treated. The first discrimination lawyer contacted turned me down with a form letter. I wondered if he might have thought that working with a deaf person would require interpreters and be expensive,1 or if he didn’t want to deal with a mental health issue. After that, a friend, Jon Connick, the director of the Maine Center on Deafness, referred me to a lawyer who sat on his board of directors. My husband and I met with Deirdre Smith the following week. She signed while speaking and was easy for me to understand. She seemed interested in my case, and requested permission to review my hospital records. The records supported what I had told her: Three days without an interpreter, the ridiculously unqualified “interpreter,” and the TTY locked inaccessibly in the conference room. There was clear evidence of my complaints and my requests—“patient is demanding an interpreter … patient continues to complain about lack of civil rights here on the unit … patient demanding use of TTY … patient upset over inability to find a quiet place to meet with staff and visitors”—but no sense that these requests might be valid. One nurse thought that I had become enraged due to a “breach of confidentiality.” I still have no idea what she meant. Reading my records was a powerful experience. I had felt minimized while there, but to see it in black and white, how they had discounted everything I said and blamed me for my reactions to their actions, was almost too much. I saw the checklists that each nursing shift had completed. Almost every one recorded that I had been “angry,” “anxious,” “argumentative,” or “agitated.” According to the chart, I was a woman overwhelmed with the “interior decorating of her home,” “the stress of her job at the deaf program,” and “her son getting hurt.” There was no mention of the other stresses in my life, and, most important, no empathic understanding of the isolation or the trauma of my progressive deafness. They had completely missed the point. “No wonder there was no follow-up treatment,” I thought. “No wonder there were no medications.” According to Deirdre, it would be difficult to prove malpractice, but it should be possible to show that the hospital had failed to comply with three laws: the Rehabilitation Act of 1973, the Americans with Disabilities Act (ADA), and the Maine Human Rights Act. We gave her a $750 retainer for costs associated with the case. She would be paid further by contingency fee, one third of anything we won. I learned that one could not sue for monetary damages under the ADA, that there was a $10,000 limit for damages under the Rehabilitation Act, and that anything I did win would be taxed. But I wasn’t after money. I hoped to end the case with the satisfaction of knowing that MMC was wrong and have a few thousand dollars in my pocket. I 1 Editors’ note: This type of corrosive uncertainty about whether or not one is being discriminated against is one of the most challenging aspects of life for any member of a minority group.

PROLOGUE

xxxi

wanted the hospital to comply with the laws. Most of all, I wanted to ensure that what had happened to me would never happen to another deaf person. Our first legal action was filing a formal complaint with the Maine Human Rights Commission to sue under the Maine Human Rights Act. (We were beginning with a state case and could sue only under this state statute.) In August, 1997, the National Association of the Deaf (NAD) joined my lawsuit as co-counsel, adding a lawyer, Marc Charmantz, and creating a team. I was offered a new job with the Maine Department of Mental Health, Mental Retardation and Substance Abuse Services (DMHMRSAS) in the Office of Deaf Services. Before starting I took a month off, during which I slept, did jigsaw puzzles, and tried to stay optimistic. I stuck with my new outpatient depression treatment: antidepressants every day, therapist once a week, and psychiatrist once a month. One day I asked my lawyer what my lawsuit might be worth in monetary terms. “Probably between two and three hundred thousand dollars,” she replied. I was stunned. I had not begun the lawsuit to win money. However, the thought of paying off my mortgage, of not having to worry about my sons’ college education, or of having a little extra for special things, was very exciting. So exciting, in fact, that I immediately charged a family vacation to Mexico, two rooms worth of new furniture, and a handful of “small ticket” items. This turned out to be a big mistake. A warning to the reader: Never bank on litigation! After 6 months, we received our “right to sue” letter, and things sped up. We discussed expert witnesses. We subpoenaed 10 years worth of doctors’ and therapists’ records. A sad thing happened: My therapist told me she could no longer work with me due to a conflict of interest. She had seen me through my first major depressive episode. She knew my battles and my victories, but could no longer stay by my side. I was devastated. In seeking a new therapist, I faced a dilemma common among deaf people, particularly those in the mental health field. I needed a therapist who could sign, or a skilled, nonsigning therapist whom I could see with an interpreter. But the few signing therapists and all the local interpreters were friends or colleagues. I eventually decided that I would not feel comfortable working with any interpreter, despite their code of ethics. I therefore chose a signing colleague, someone with whom I shared clients. Jana signed fluently and knew about late-deafness. I didn’t need to teach her. She guided me through the next year of hell. Without her, I don’t know how I would have kept going. Three months later, the United States Department of Justice (DOJ), expressed interest in joining my lawsuit. They wanted a test case for Title III of the ADA, regarding compliance in emergency and medical settings. I was very nervous during my interview with their attorney, Jim Moore, a tall and serious, but pleasant man whom we met in an office straight out of “L.A. Law.” He listened to my story and reviewed my records. I was thrilled when he filed for the DOJ to intervene as co-plaintiff. It felt like validation

xxxii

PROLOGUE

that MMC had in fact broken the law. My lawsuit was now entitled Janet DeVinney and the United States of America v. Maine Medical Center. Big stuff, it made the nightly news in Portland and newspapers around the state. The process of “discovery” came next. I learned more about myself than I cared to know. MMC insisted on referring to me as a hard-of-hearing woman. They wanted to show that I did not need interpreters for therapy. Not until they received the records from my otolaryngologist did they finally concede that, with a 105 decibel (dB) bilateral hearing loss, I was in fact deaf; 90dB is the usual cutoff for profound deafness. I had the right to interpreters and TTYs in the hospital. During November and December 1997, my life was not my own. Fortunately, my supervisor felt that I could achieve as much through the lawsuit as at the office, and let me take the time I needed for endless meetings and evaluations. My 3 days of deposition were conveniently scheduled on the 2 days before Thanksgiving and the day before Christmas Eve. MMC’s lawyer grilled me, reviewing my therapists’ records, my doctors’ records, and my hospitalization, asking about my marriage, my kids, my knowledge of the policies of other hospitals with regard to deaf and hard of hearing people … on and on. It was awful. I broke down at one point. I felt as if I were the one on trial. I had to remind myself that it wasn’t my fault how I had been treated. My old hospital journal saw me through the deposition, as it had now been 14 months since my hospitalization. In it, I had documented every detail of my experience, so it was not too hard to memorize chronologically the important events of those 5 days. I still got thrown by a few questions of the “are you sure it was Monday afternoon, not Monday before lunch?” kind, but was much more secure than I would have been without it. Deirdre and Jim coached me to answer the questions I was unsure of with, “I really can’t recall,” or “to the best of my knowledge … ” I was supposed to answer each question with a simple yes or no, which wasn’t easy when I wanted to add details or was feeling defensive. Unlike what I had seen in TV depositions, my lawyers could not object when something was going wrong, or when the opposing lawyer was too hard on me. I had to answer the questions, regardless. Lawyers are not supposed to press a witness too hard during the discovery phase, in which they are establishing facts that may come up later in a trial, but I felt very pressed. My lawyers deposed the psychiatrist who had overseen my care, the chief psychiatrist, and the vice president of nursing. The vice president was asked to explain the institution’s procedures for accommodating deaf and hard of hearing patients. Her responses were illuminating—aside from some old policies somewhere in their handbook, she made it clear that no one at MMC had any idea what to do when a deaf patient arrived on their doorstep. The two psychiatrists’ depositions were also interesting in that they still really didn’t get it. They persisted in the assumption that I could understand what was said to me and what was going on around me. They

PROLOGUE

xxxiii

claimed to be unaware of my inability to participate in groups without an interpreter, about the TTY issue, and about several other battles. It was very difficult listening to them explain my hospitalization as being due to nothing more than my son’s fainting. They would have learned differently had the lawsuit continued and some nursing staff had been deposed. I did not feel that my lawyers pressed the witnesses as hard as MMC’s lawyers had pressed me. In addition to my own providers, we needed “expert witnesses” to testify that I was, in fact, depressed and deaf, and that I needed accommodations. My lawyer wanted me to fly to New York City, take a cab into Manhattan, hop on a bus to New Jersey, take a bus and a cab back to New York, and then fly home. I had left New York 17 years before precisely because it had too many people moving too quickly for me. How could I navigate now, deaf and depressed? Fortunately they understood, and came up with a simpler plan. My husband and I drove to Connecticut for a psychiatric evaluation, which was held in our hotel room. The communication expert flew to Maine and saw me at home. This 5-hour evaluation measured my comprehension of spoken and signed communication and my knowledge of English and ASL. The DOJ flew me to San Diego for a second psychiatric evaluation, which lasted a full day. My husband came along, and we had a wonderful time. We had married in California, and had lived there for 4 years, long ago— this was our first time returning as a couple. It was pleasant to leave Maine on a cold, December morning and arrive in warm, sunny southern California later the same day. I met two well-known experts in deafness and late-deafness, people whose work I had studied and quoted in graduate school. After returning, I had a second communication evaluation, in New Hampshire, and was finally done. Despite my curiosity, and willingness to pay for the write-ups, I was only provided the results of one of these evaluations. Looking back, this should have been an early hint that my lawsuit had outgrown me, and that I was becoming a “case” to the lawyers rather than a person. In January of 1998, the DOJ gave the hospital a list of their expectations for policy, practice, and procedural changes. The hospital’s response was a joke. They claimed that they “always” accommodated deaf and hard of hearing patients fully. The DOJ countered with the first draft of a “consent decree,” an agreement by the hospital to make changes in its policies. The thought of having a consent decree with my name on it felt great. The four lawyers worked on the details over the next 4 months. At first, they would send me a draft of every little change, until I finally asked them to just figure it out themselves and then show it to me. I didn’t find the legal language battles enjoyable. Seeing how the lawyers were piling up billable hours bothered me even more. Each time they did request my input, I had just 24 hours to respond. It was intimidating. The NAD and the DOJ wanted their consent decree, their model policy for the nation to see and use. My lawyer wanted the case settled

xxxiv

PROLOGUE

as soon as possible, as it was becoming very expensive for her firm—without a trial, there would be only a small monetary gain. Who was watching out for me? It felt as if the lawyers had taken my lawsuit away from me. In April of 1998, I was given the choice of settling for my name on the consent decree and a small amount of money, or going to trial, with the possibility of either greater gain or greater losses. As usual, I had 24 hours to decide. I wanted the settlement amount spelled out in the consent decree, so people would know I had not benefitted financially from the lawsuit. I also wanted an apology from MMC, or at least an admission of wrongdoing. They refused both. I said I wanted to go to trial. Suddenly, my lawyers became doubtful about the strength of my case. They worried that we could lose a court battle. Maybe I had no longer been sufficiently depressed by the time I was seen in San Diego, or maybe my lip-reading skills were too good and would hurt my case. If I lost, I would be responsible for the costs of the trial for all the lawyers involved. I would lose my home, which I had dreamed of designing and building since I was building tree forts. My home was my safe place to run from the world. My garden had kept me going through my depression. Planting hundreds of flower bulbs had been my way of saying that I planned to be there the next spring. I had walked outside every day that winter, awaiting the first signs of life under the Maine snow and ice. I could not risk losing my home, and saw no choice but to settle. Through this whole ordeal, my husband had tried in his own way to be supportive. When I cried that I just couldn’t go on with it, he would say, “so drop the lawsuit.” I did often think of just walking away from the whole thing. But then I would ask myself, “In 5 years, how will you feel if you don’t follow through with it?” and keep on going. It hasn’t been 5 years yet, so I still can’t answer whether it was worth it. I wish someone else had done this long ago, that the test case didn’t have to have been me. At times, I think I should have pushed on with a trial. Then I try to remember the shape I was in at the time, and that the hospital could have argued that nothing negative happened to me as a result of my hospitalization. After all, I was still married, I was closer to finishing my master’s degree, and I had a better job. They could claim to have cured me. My own strength of character could have been used against me. Jana, my new therapist helped me with my depression, with the traumatic experience of being hospitalized, and with the new awful feeling of having chosen to “settle.” The tension from the lawsuit showed itself when I briefly became angrier and again felt suicidal. I asked my lawyer if anything happened to me, would my family still get the money. It was a stupid thing to do, raising a red flag like that. I was told I would be rehospitalized if I didn’t “contract for safety.” So, in April 1998, I accepted the settlement that the lawyers had arranged. I got my name on the consent decree and enough money, after taxes, to pay off the credit card bills I had run up when I thought I was about

PROLOGUE

xxxv

to strike it rich. Hearing that the hospital had an annual operating budget of 300 million dollars, I wanted some of it. I wanted that 2 or 3 hundred thousand dollars that I had been told my case was worth. I wanted an apology. I wished I had something more to show for my efforts. The consent decree was celebrated with a press conference, to which, somehow, the lawyers did not invite me. Nevertheless, I was a media star for a day. I was interviewed by three television stations and the Portland newspaper. The hospital made a big deal out of not having to apologize to me because they “had done nothing wrong.” But of course the 38 pages of changes they were now agreeing made it clear that they had. Among other things, they agreed to: • ascertain at intake whether a patient is deaf, • promptly provide a qualified sign-language interpreter and/or other communication aids for their full range of medical services, • provide television closed captioning, • request interpreters within 1 hour of an unscheduled emergency visit, • provide these communication services for deaf family members, friends, and companions of MMC patients, • provide amplified telephones, TTY pay phones, TTY room phones, and dedicated incoming lines, • add closed captioning to all TV advertisements related to MMC, • obtain pictograph forms and flash cards for patients who are not literate, • post signs throughout the hospital advertising the availability of interpreters and other accommodations, • sponsor an annual grand rounds presentation pertaining to deaf issues during Deaf Awareness Week, • produce or purchase a video on accommodating deaf/hard-ofhearing patients, • mandate and provide in-service training for all employees, starting with ER staff, • create deaf/hard of hearing patient satisfaction surveys, • supply compliance reports to DOJ, NAD, my attorney, and me, • hire an “ADA Communication Services Coordinator,” • reach out to the local Deaf community, explaining the services provided by MMC, • survey deaf patients regarding their degree of satisfaction with the hospital’s services, • make payments to me, my lawyer, NAD and DOJ. When it was all over, I took 10 weeks off. I honestly can’t say what I did during that time, but I was able to complete my therapy and discontinue medications, so some kind of healing must have taken place. Many hearing people called or wrote to congratulate me on winning my suit. It was 3 months before a deaf person congratulated or thanked me. Someone said it

xxxvi

PROLOGUE

was not a Deaf thing to do, which I don’t understand. However, I do hear stories from deaf people about how much better things are at the hospital now, particularly in regard to interpreters, TTYs, and the checklist now used to help patients request the accommodations they need. In the first year under the consent decree, the amount of interpreting performed at MMC more than doubled. Knowing that helps a lot. Based on my experience, I can give this advice: If you want to pursue a suit, do it to change things, not for money. You only hear about huge monetary settlements in the news because, like airplane crashes, they are so rare. Airplanes land safely and lawsuits are settled without going to trial every day of the week. Be realistic about what your suit might accomplish. A lawsuit requires time, hard work, tears, invasion of privacy, and the risk of financial ruin—it’s not much like television. Anyone going through a lawsuit needs support throughout the process, from friends, family, and competent professionals. It is unfortunate that in our society, lawsuits are sometimes the only way to stand up and change things. I admit that I’m still angry about the whole thing. I find it painful to think back on my hospitalization and lawsuit. I put off writing this chapter for months. Finally, I had a 3-day weekend, cried, slept, poured a glass of wine, and got it all down. I encourage you to read the consent decree itself, and to use it as a model for hospitals in your own state, or a warning to them. The more good that comes out of my bad experiences, the better.

1 Culturally Affirmative Mental Health Treatment for Deaf People: What it Looks Like and Why it is Essential Neil Glickman Westborough State Hospital Assumption College

PERSONAL INTRODUCTION: CROSS-CULTURAL LEGITIMACY I am a psychologist who administers an inpatient psychiatric unit for deaf people. I’ve made a career of touting culturally affirmative mental health treatment for deaf people. I am constantly thinking about the cross-cultural dynamics between deaf and hearing people, and I have done everything in my power to shape my program so that it lives up to the ideals I advocate. But I face an obstacle in talking about this issue, at least with a deaf audience: I am hearing. Over the years, deaf people have challenged me with questions like these: What makes you an expert on deaf people, or even on psychotherapy with deaf people? You’ve written some articles and edited a book? Hearing people have been writing about deaf people for years, usually presenting us as incompetent and inadequate. You run a mental health program for deaf people? Almost all mental health programs for deaf people are run by hearing people. Most of them are grossly insensitive to our viewpoints. If your program is so ‘culturally affirmative,’ why isn’t it run by a deaf person? If you are so pro-deaf, why do you sign in Pidgin Sign English? Why are most of your staff hearing? Who are you, as a hearing person, to even suggest what ‘culturally affirmative’ mental health treatment is? You can’t see your hearing biases. You are still a hearing person exercising authority over deaf people.

These questions challenge my “cross-cultural legitimacy” (Pollard, 1996), the degree to which a culturally different community accepts one as a 1

2

GLICKMAN

helper. For example, if you don’t sign at all, promote oral education of deaf children, and encourage hearing parents to seek cochlear implants for their deaf children, you will not have cross-cultural legitimacy with the Deaf community. They will not accept you as a helper. Indeed, they may even see you as an enemy. You can’t give yourself legitimacy to work with a community to which you do not belong. All the academic credentials in the world mean nothing. The community decides whether you are trustworthy and whether you understand them. Establishing cross-cultural legitimacy is the greatest challenge any hearing clinician faces in working with deaf people. Consider the challenge for me as a hearing program administrator: I must hire, promote, discipline, and terminate staff as well as establish policies that are clinically sound, fiscally prudent, responsive to constraints on available resources, and acceptable to the Deaf community. Yet if a mental health program seeks to serve a minority community, it must achieve cross-cultural legitimacy or the intended clientele will reject it. In addition to the notion of legitimacy, cross-cultural theory gives us the concept of “ally.” German Christians who hid Jews during the Nazi era were their allies. White abolitionists who fought to end slavery, and the White civil rights workers who fought to end segregation were allies of African American people. Members of PFLAG (Parents and Friends of Lesbians and Gays) are allies of gay men and lesbian women. My response to questions about my legitimacy is that, while I do have a position of authority with regard to some deaf people, I strive to live, not as an expert, but as an ally. I accept that the final judges of my cross-cultural legitimacy will be deaf people. I present a model of culturally affirmative inpatient treatment of deaf persons in that spirit. I hope that both deaf and hearing people use it, critique it, and improve on it. WHY IS CULTURALLY AFFIRMATIVE MENTAL HEALTH TREATMENT NECESSARY? If you are hearing and if you are awake, if you seriously attend to what deaf people say, then you know that the mental health problems that some deaf people develop can not be separated from the abusive ways they have been treated by hearing people. Some of these abusive responses to deaf people include: • Controlling deaf schools and other programs that serve deaf people. • Forbidding sign language in deaf schools and programs, and corrupting sign language into unnatural imitations of English. • Focusing obsessively on speech and speech reading to the exclusion of academic subjects. • Imposing hearing aids on students who do not want them. • Forcing surgical procedures on deaf children who cannot consent.

1.

CULTURALLY AFFIRMATIVE TREATMENT

3

• Mainstreaming deaf children, resulting in isolation from peers and deaf adults. • Delaying 20 years from the recognition of sign languages as true languages to accepting them broadly for instructing deaf children (1960–1980). • Drawing erroneous and damning conclusions from inappropriate psychological testing. • Diagnosing deaf people as mentally retarded, autistic, or schizophrenic, and allowing them to languish in institutions. • Holding a medical conception of what it means to be deaf—deafness as a pathology, a handicap, and a tragedy—and therefore believing that deaf people need to be “fixed.” • Believing that deaf people are disabled not just in being unable to hear, but intellectually, emotionally, and morally. • Promoting the idea of the psychology of deafness, that deaf people are unintelligent, egocentric, concrete, irresponsible, impulsive, immature, paranoid, and so on. • Actively discriminating against deaf people in hiring and promotions. • Showing paternalism, pity, and contempt toward deaf people. • Excluding of the Deaf community from decision making on key matters, such as educational policies and medical procedures that pertain to deaf people. But the absolute core of oppression of deaf people, as I have come to understand from their stories, is: • Disempowering them around communication, resulting in communication isolation. Hearing mental health professionals who do not have full knowledge of the deaf experience, self-awareness, and an appropriate set of skills may actually repeat these forms of oppression in their treatment. This is well illustrated in the story of Janet DeVinney, whose experience opened this book. Ms. DeVinney was working toward a graduate degree in psychosocial rehabilitation, and needed a brief inpatient treatment for depression. As a mental health professional herself, she knew the mental health system and her rights as a deaf person under the Americans with Disability Act (ADA) and other laws. She had strong signing skills. As a late-deafened person, she also had fluent English and comprehensible speech. She was in a strong position to advocate for herself. Some middle-class or well-educated deaf people like Ms. DeVinney would not want to be treated in a specialized deaf program such as ours, however much they want and need sign language for treatment. Some might have concerns about confidentiality. Ms. DeVinney, for example, might have worried about being hospitalized with her own clients. Others might worry

4

GLICKMAN

about finding peers at their level of functioning. Ms. DeVinney, however, was not offered a choice. She was hospitalized in a hearing facility that was completely unprepared to help her. Ms. DeVinney’s depression, as she saw it, was largely due to the pain of struggling with hearing people, including her own family, around communication. Her communication isolation was repeated in the treatment setting. How could she articulate her experience to people who were repeating the same mistreatment that brought her to that point? To add insult to injury, her providers saw her depression and anger as something purely internal, and denied their part in it. Rather than responsibly attempting to make their treatment environment more accessible, they did things like referring her to an anger management group without an interpreter. They encouraged her to assert herself, but treated her as unreasonable when she asserted her need for an interpreter. In the end, she got qualified interpreting for exactly three therapy sessions. The treatment environment retraumatized her; she was later diagnosed with Posttraumatic Stress Disorder caused by her hospital experiences. Ms. DeVinney’s experience of psychiatric inpatient treatment is typical for deaf people admitted to hearing units. I know this because I take referrals from them. Many deaf people have a more difficult time than Ms. DeVinney because they lack the education and intellectual sophistication to advocate for themselves or because they are more seriously mentally ill. Ms. DeVinney was not linguistically impaired or psychotic. She was not given psychological testing that drew incorrect conclusions drawn about her mental capacity and diagnosis. She had strong “premorbid” functioning, and no history of the developmental and behavioral difficulties common in most of our patients. For a deaf person presenting for help in a hearing psychiatric facility, she presented a “best case scenario.” Consider, for instance, the case of a 30-year-old man I call Ed, who was transferred to our unit from a hearing psychiatric unit. Ed had grown up in a third world country. Because no one in his life had used a formal sign language, he had no language system of any sort. He communicated entirely through gesture and “home signs.” (Fortunately, this situation is now rarely seen in the United States.) Ed had enormous deficits in developmental skills. His ability to manage his emotions in almost any social situation was poor. He was a large man. To get what he wanted, he would gesture dramatically, vocalize loudly, and raise his fists. Sometime in Ed’s past (no records are available, and he certainly couldn’t tell us), a doctor prescribed Haldol, presumably believing him to be psychotic. His family dutifully continued it for years. When he arrived in this country, the prescription was renewed. Ed experienced painful muscle cramps as a side effect of Haldol, and often refused it. His family began crushing it and hiding it in his food. He became “paranoid,” refusing to eat unless he saw the food being prepared. He became angry with his parents and sometimes threatened them. Finally, they called the police

1.

CULTURALLY AFFIRMATIVE TREATMENT

5

who, with a force of some six men, subdued him and brought him to a hearing hospital, a facility renowned for medical excellence. There he was strapped in restraints for days because he was big and scary and nobody could communicate him. While in restraints, he was given an injection of—Haldol. We were apprehensive about Ed being transferred to our unit, but our fears were unjustified. We were not put off by his lack of formal language skills, as we were used to finding creative ways to communicate with our clients. Our deaf staff members in particular were remarkable in their ability to communicate with Ed through gesture and drawing. Simply being on our unit, where people seriously attempted to communicate with him, Ed’s behavior improved dramatically. It quickly became clear that he was not psychotic but did have Obsessive-Compulsive Disorder (OCD). He spent 3 or 4 hours a day in the bathroom washing his hands and face. We stopped the Haldol, started teaching him sign, started him at the sheltered workshop, and eventually got through his “paranoia” and convinced him to try an appropriate medication for his OCD. The experiences of most deaf people in hearing psychiatric facilities lie somewhere between those of Ms. DeVinney and Ed. Most facilities will attempt to provide some interpreting services, perhaps for meetings with the psychiatrist or social worker, but the larger treatment milieu, including group therapy and interactions with nursing staff, will remain inaccessible. They will own one TTY (teletypewriter) and may even be able to locate it when needed. One or two of their staff may know some sign (although this becomes more a curse than a blessing if these staff are elevated into “deafness experts”). Their clinicians will likely have no knowledge of the biological, developmental, social, and cultural implications of deafness, no sense of what is normal for deaf people, and no appreciation of their biases as hearing people. Misdiagnosis will be common. The deaf patient will have no deaf peers, and staff may have no sense of the difficulty in integrating deaf persons in hearing groups, even when an interpreter is present. The resulting experience for the deaf person is isolation and frustration at best, misdiagnosis, mistreatment, and retraumatization at worst. Oppression can occur in our facility too. An example is illustrative: When regular staff are out sick at Westborough State Hospital, staff from other units may be assigned to “float,” or cover for them. Many of the nurses and mental health workers who float to our unit would rather not be there. They are uncomfortable working with deaf patients, and often even more uncomfortable working with deaf staff. The nurse is always in charge of the milieu, even when she is supervising regular staff who know the patients better than she does, and who can communicate with them. One day a nurse I’ll call Julie floated down to our unit. Our staff know how she feels about being assigned to us: She grumbles that she hates it. Julie only looks at our deaf staff when ordering them to do something. She refuses interpreters, saying that “deaf people understand me fine.”

6

GLICKMAN

One evening, a patient was feeling agitated. Julie told her, in spoken English, “go to your room or the quiet room.” Later this client assaulted someone and had to be physically restrained. Two deaf mental health workers (MHWs) were working that shift, including one of the most competent staff members on our unit, a leader who sits on our executive committee. Julie felt he was buckling the restraint belt too slowly, and motioned for him to leave the room. She wanted a hearing float to take over. There was an interpreter present, and the MHW signed that he knew what he was doing. He had performed this procedure many times. She motioned again for him to leave the room, telling the interpreter, “I know what he wants but he is too slow and is wasting my time.” Julie then had the other deaf mental health worker, a woman, leave the room too. Her rationale was that there were enough male staff there. So the two deaf staff members, the only people present who actually knew the person being restrained and could communicate directly with her, were ordered out while hearing floats took over. The only person the deaf mental health workers could turn to that evening was the nursing supervisor. But the nursing supervisor that evening was also infamous among our deaf staff. She too complained about the hassles of dealing with deaf people. When she came down to “trip” the unit, she would ignore deaf staff and ask hearing staff how things were. She refused to write or to sign. The deaf staff rightly perceived that she valued input from the hearing people but not from them. Needless to say, the offended deaf mental health workers did not choose to complain to her. Julie firmly believed that in an emergency hearing people should run the show. When we addressed this with her, she argued that her primary concern was safety. She felt that the situation had been unsafe because deaf staff could not communicate quickly with hearing nonsigners. (Notice how she blamed the deaf people for the communication problem.) We had heard this argument when we first hired deaf people. We heard it again when our deaf staff sought opportunities for overtime on the hearing units. Now we were hearing that they were not safe to manage a crisis on their own unit. We told her that 15 years of experience showed there was no truth to her claim. Deaf and hearing people can work together smoothly, even in emergencies. In fact it is more unsafe having no deaf people there. At the very least Julie was rude, insensitive, and unprofessional. The nursing supervisor supported Julie’s actions that evening. She could not fathom how Julie’s behavior reflected prejudice. She told me I was prejudiced against hearing people. The deaf mental health workers involved in this incident were traumatized by it. Really, they were retraumatized. They had experienced hearing people discounting, undermining, rejecting, or ignoring them all their lives. Now it had happened even in a “safe” place. The psychological fallout of this incident was enormous. Our staff spent days processing it and recovering from it. Julie and her supervisor couldn’t even see the problem.

1.

CULTURALLY AFFIRMATIVE TREATMENT

7

How could a deaf person stay sane and healthy in an environment that was so ignorant and invalidating? Sadly, all this occurred in an environment supposedly designed to be culturally affirmative. But at least on our unit, abuses could be named and challenged. The unit leadership were able to validate the deaf staff members’ perception of oppression, and we fought for them. Deaf staff could talk safely about their experience. Without this, the deaf staff would have sat with their rage. They might even have been written up for having objected to leaving the room, or fired for insubordination. This is normal, daily reality for deaf people. Unless the environment is specially attuned, new abuses will always occur. Deaf people will be enraged and silenced. They will not be as productive in their work and their patients will suffer. Why are culturally affirmative mental health programs essential for deaf people? The answer goes well beyond the most obvious issue: the need for a signing environment. It goes beyond the need for deaf role models and for staff, deaf and hearing, who are sensitive to the deaf experience. It goes beyond the fact that working with deaf people requires special knowledge and skills as well as thinking about what it means, culturally and historically, to be hearing and deaf. We need to create culturally affirmative mental health programs so that the treatment setting does not repeat the same offenses that contributed to the deaf person’s problems. Can a hearing person understand what it means to go through life and be excluded from almost every conversation? What if, like many deaf children, he doesn’t have the language to make sense of these experiences? And what if, in each new situation, people assume he is not competent? People deny his potential to learn and become skilled. They don’t value his opinions. Each time he meets a new hearing person, he feels blamed, misunderstood, pitied, left out, and criticized by people who believe they are objective, fair, wise, and helpful. All of this gets re-enacted in each new setting, including in each new treatment setting, as Ms. DeVinney’s experience in our preface showed. So the deaf person, now in a psychiatric crisis, has to explain to yet another hearing person, who is behaving in exactly the same ignorant, uninformed and biased way, why he is angry or depressed or confused. Deaf people can’t begin to piece this all together, to give the right name to their experience, in an environment that repeats and then obscures the same trauma. They can’t develop trust, the foundation of mental health treatment, in an environment where people don’t speak their language, don’t understand their world, don’t validate their experiences, and don’t know that they don’t know. ACCESSIBILITY VERSUS CULTURAL AFFIRMATION I want to clarify the difference between accessible treatment, which is required by laws like the Americans with Disabilities Act, and culturally affirmative treatment, which is a higher standard not required by law. The ADA states

8

GLICKMAN

that “no qualified individual with a disability shall, by reason of such disability, be excluded from participation in or be denied the benefits of the services, programs or activities of a public entity, or be subjected to discrimination by any such entity.” The ADA prescribes “qualified interpreters and other effective methods of making aurally delivered materials available to individuals with hearing impairments” as the standard for providing “auxiliary aids and services.” (Americans with Disabilities Act, 1990). The key word here is effective. The provision of qualified interpreters is suggested as one way of insuring effective communication with deaf persons. Thus, the ADA does not require that services be designed by and for deaf persons, only that effective means of communication be used to create inclusion. The vast majority of mental health services targeted at deaf people strive for accessibility, not cultural affirmation. That is, they strive for the minimum standard required by law. If we examine the consent decree that resulted from Jan DeVinney’s lawsuit against Maine Medical Center (MMC), for example, we see that Maine Medical Center agreed to an impressive number of steps designed to make its services accessible. (See pp. xxxv in the Prologue of this volume for some examples.) MMC did not offer or agree to create services specifically tailored for deaf people. Although the implementation of “reasonable accommodation” is a significant victory for deaf people, this strategy has a number of limitations, especially in mental health programs, and especially when the clientele are less educated, illiterate, or psychologically unsophisticated. Ideally, deaf people should have a choice of specialized and accessible mental health services. Some deaf people prefer to be served in an accessible hearing setting. They might associate mostly with hearing people. They may have concerns about lack of confidentiality in Deaf programs. They might not want to be in the same treatment program as the “lower-functioning” deaf people that are more likely to be served in some identifiable Deaf programs. On the other hand, many high-functioning Deaf people also request treatment in our facility because the presence of a signing environment trumps any other concerns. Most often, mental health programs attempt to ensure effective communication and thus create accessibility for deaf people through one or two methods. The first method is to hire sign language interpreters. The second method is to hire a “deafness expert.” Each method meets the letter of the law but fails to create genuine inclusion. Let’s examine them both. DOES HIRING INTERPRETERS CREATE PROGRAM ACCESSIBILITY? The provision of an interpreter (even a qualified, certified interpreter) without other modifications to the communication dynamics, creates an “illusion of inclusion.” This is true even when all parties are fluent users of some language and fully understand the role of interpreters. In mental health settings,

1.

CULTURALLY AFFIRMATIVE TREATMENT

9

it is often the case that the deaf consumer may not be a fluent user of sign, and it is very possible that deaf and hearing alike do not understand how to use an interpreter. But those are only two small issues. Interpreters work best in situations when people of two language groups have nearly equal power and linguistic competence and can both understand and attend to the communication process. This occurs, for instance, in international politics or business. In the typical situation where a sign language interpreter is used, a lone deaf person sits in a sea of hearing people who are oblivious to the communication, language and power dynamics that are occurring. Consider what usually happens in such a meeting. Everyone talks at once. People interrupt each other, make asides, use slang and idiomatic language difficult to translate, and make references to a body of cultural information shared by the dominant group. People refer to a television show, a song, or a movie that hasn’t been captioned. People make jokes that are neither funny nor sensible in translation. They use professional jargon and acronyms. They laugh and tease. They use sarcasm and irony. The interpreter tries to keep up, sometimes with information he himself may not understand. The participants may become irritated if the interpreter attempts to slow the conversation or asks people to take turns talking. Or, consider what happens when a hearing clinician interviews a deaf client who happens to be psychologically unsophisticated or cognitively and linguistically limited. The hearing clinician uses words or ideas that the deaf person doesn’t understand. A psychiatrist may ask, “Is there any history of mental illness in your family?” The deaf person doesn’t understand the abstract concept of mental illness and has little knowledge of family history, never having had good communication within the family. An internist might need to review a list of 25 diseases, and is accustomed to getting a quick yes or no response. The interpreter can fingerspell the disease names, knowing full well that the patient doesn’t know most of these “big words,” or explain to the doctor that they will have to go one by one, slowly, explaining each disease to the patient. In the first case, true communication doesn’t occur. In the second, the doctor, whose time is tightly scheduled, becomes frustrated and impatient. A psychologist might ask a patient the meaning of an English proverb, not appreciating how idioms and proverbs are language bound. The psychologist continues, “Do you hear voices?” and the patient responds, “No, I’m deaf.” “Do you hear voices inside your head when no one is around? Do you hear things that other people do not hear?” The interpreter translates this, but the deaf patient is confused. How could he hear things that hearing people do not hear? Many deaf persons seen in mental health settings do not have intact sign or spoken-language systems. Hearing clinicians working with deaf people for the first time generally have no reference for what it means to be an adult who never acquired a full language. They can’t relate or make sense of this except perhaps to draw erroneous conclusions about mental retardation, a mood disorder, or psychosis. The language-impaired client signs with a

10

GLICKMAN

limited vocabulary and disorganized grammar, posing enormous interpreting challenges. The task of assessing for a thought disorder in a language-impaired deaf person is beyond the competency of any clinician not specially trained. The interpreter cannot draw conclusions for the clinician about the presence of a thought disorder (although the clinician may ask the interpreter to do so). The presence of an interpreter simply cannot compensate for the clinician’s lack of experience and normative frame. Typically, clinicians in this situation feel deskilled and look desperately to the interpreter to take away the language problem and explain what is happening both linguistically and psychiatrically (Schlesinger, 1972). Interpreters are the only people present in these situations who actually know what information isn’t getting communicated. They are the only people present who appreciate the vast gaps in world knowledge and conceptual frameworks that separate the hearing majority from many deaf patients. They can’t possibly overcome these vast gaps in experience and perspectives simply by interpreting, yet everyone expects that they can and will. A bold interpreter may attempt to interrupt to explain a communication difficulty. People may attempt for a moment to slow down, but the problems reappears soon as they fall back into their habitual style of communicating. The deaf people don’t know what they are missing and blame the interpreter when they don’t get all the information. In addition, given the time lag between spoken and interpreted comments, it takes an enormously assertive and empowered deaf person to interrupt and get a word in edgewise. If the hearing person has high status and the deaf person has low status, it is a rare deaf person who can in any way attempt to manage communication. Deaf people are quite expert at pretending to understand, and hearing people, uncomfortable with the communication problems, are usually all too willing to accept the deaf person’s “empty nod” at face value. What’s the experience of a linguistically competent signing deaf participant in an important meeting with hearing colleagues? This person probably had to fight to get an interpreter present. She is already aware that her hearing colleagues are annoyed at having their usual pattern of communication disrupted. This is especially true if there are issues around paying the interpreter, or if the meeting was scheduled around the interpreter’s availability. She may have gotten messages like, “you lip-read fine,” or “I’ll tell you what’s going on later,” or “this isn’t important. I’ll let you know when something important happens.” She may be thankful and relieved to have an interpreter present, but also self-conscious about it. She may be grateful for even partial inclusion. Given these dynamics, she is hardly in a position to complain that she is unable to participate fully. The deaf participant is supposed to be appreciative, and given the alternative of no accessibility, may in fact feel appreciative. But the same experience of communication isolation, of getting bits and pieces of the conversation, of not truly understanding what is meant, may well occur

1.

CULTURALLY AFFIRMATIVE TREATMENT

11

even with the interpreter present. How can the deaf person object that she is still being excluded without risking alienating her hearing colleagues? After all, they’ve provided an interpreter. Boy, she is pushy! What else could she want? In these situations, it is a gross illusion to imagine that provision of an interpreter has solved the communication problem and created communication inclusion for the deaf person. What is often repeated in situations where an interpreter is present is, in fact, the same old trauma of disempowerment around communication and communication isolation. Only now it is subtler and much harder to acknowledge. “You got an interpreter. So what’s your problem?” These are all problems that occur when the interpreter is actually present. When a deaf person is hospitalized, there is no interpreter present most of the time. There may be one for a scheduled meeting with a psychiatrist but not for community meeting, medication education with the nurse, or communicating with other patients over meals. When hospitals call me to transfer a deaf patient who was admitted to their setting, I hear over and over that they could not obtain interpreters even for their “important” meetings. The deaf patient may have waited days for one scheduled meeting with an interpreter. In Massachusetts at the time of this writing, the Department of Public Health’s strategy for accessing substance-abuse services for deaf people relies on a few interpreters to cover the entire state. The DPH withdrew support for creating special expertise to serve deaf people in specified substance-abuse programs and instead declared that by hiring interpreters they were meeting their legal responsibilities to create accessible treatment. The predictable result has been limited interpreter availability and programs that are “clueless” when confronted with a deaf consumer. This was before a state budget crisis resulted in cutbacks even to these inadequate services. DOES TRAINING OR HIRING A “DEAFNESS EXPERT” CREATE ACCESSIBILITY? A “deafness expert” is born when a mental health program discovers the need to serve deaf people, which it meets by hiring a single signing clinician or by sending a staff person for sign language training. Expecting anyone, after just a few months of classes, to serve deaf clients is unfair to the “expert” and profoundly insulting to the clients. One would like to imagine that administrators would not be so insensitive to the language needs of non-English speaking hearing clients, but in fact this type of mistreatment of minority language groups happens routinely. Hearing people typically underestimate what is involved in learning to sign. Programs with a unionized labor force can face additional obstacles if the union opposes hiring staff with specialized skills because they would like their members to have the right to learn new skills on the job. Similarly, administrators may be re-

12

GLICKMAN

luctant to pay higher salaries to recruit staff with specialized language skills. The idea that people will learn language skills on the job has probably destroyed more efforts to serve linguistic minorities, including deaf people, than any other. Unless the program already has a large deaf caseload, it will prefer hiring a “flexible” clinician who can work with deaf and hearing people. This inevitably means a hearing person. The administrator who does the hiring is typically ignorant about sign language and Deaf culture and therefore unqualified to judge an applicant’s cultural sensitivity and signing skill. So anyone who claims to be skilled can be hired. This person then will be expected to handle any and all deaf clients for the agency. I know these issues from inside, having worked myself as a “deafness expert” in a vocational rehabilitation agency and several outpatient mental health centers. My signing skills have gotten me jobs, and gave me an edge in applying to a competitive doctoral program. They have helped me to get on insurance panels in my private practice. Hearing people who claim to be able to sign often experience these kinds of financial and material privileges. Indeed, while reading a book that purports to help mental health clinicians break into closed insurance panels, I came across the following advice: The skill most frequently needed is the ability to conduct therapy in a foreign language or in sign language. Although facility in a foreign language is not a skill that is easily acquired, if the therapist already has this skill it should be exploited. One language that some feel is relatively easily learned is sign language. And sign language is frequently needed by managed care companies. Should the reader wish to develop a skill in sign language, it could well open some doors. But before undertaking such an effort, the best policy would be to check first with the managed care companies the reader wishes to join to ensure that this effort would pay off in acceptance on the preferred provider panel. (Poynter, 1994)

Besides presenting the erroneous impression that sign language is “relatively easily learned,” the attitude reflected here helps us understand why deaf people may distrust hearing mental health providers—it centers on the financial needs of the therapist, not on the needs of clients. At our hospital, we got approval to pay more for entry-level direct care positions on our unit because we needed bilingual skills. Once we advertised our higher-paying positions, there was a flurry of interest among hearing direct-care workers seeking promotion. Over the years, I’ve had many hearing people anxious for a promotion request a position on our unit, promising they will learn sign language. I’ve had union stewards argue with me that their hearing constituents should have the opportunity for these promotions. My response is always the same: First learn sign language, then come and talk to me. Nearly all of the time, these people have no real interest in learning ASL or working with deaf people. This quickly becomes apparent when they are asked to work to demonstrate their commitment.

1.

CULTURALLY AFFIRMATIVE TREATMENT

13

When a mental health agency discovers the need to serve deaf people, it usually looks for a quick, painless way to do so. Hiring someone who signs or having a staff member learn some sign language may be the first thing the program’s administrators think of. Unfortunately, they do not realize what is involved in learning ASL, or understand that they are working in a cross-cultural context, requiring cross-cultural legitimacy with the Deaf community. On the other hand, they do understand perfectly well that if they hired a deaf person, more would be required of them than they might wish to contend with. For instance, they’d have to think about accommodations for that person, and who knows where that might lead? Indeed, I’ve seen hearing administrators in a vocational rehabilitation agency, whose professional belief system was centered on the importance of hiring “handicapped” people, balk at the prospect of hiring a deaf counselor, even when the counselor’s case load was to be composed entirely of deaf people! I’ve seen a hearing person, after just one sign language class, instantly become an agency’s “deafness expert.” This is what the mandate for ensuring effective communication may look like in practice. Pity the poor “deafness expert.” He is expected to serve deaf people of every age, and to be skilled in the treatment of every psychiatric condition. The deafness expert is expected to communicate easily with every deaf person referred. In addition, because of the lack of a continuum of culturally appropriate mental health and substance-abuse care for deaf people, an outpatient deafness expert might be expected to serve clients who need a more intense level of care, or who need a different kind of treatment, such as addiction work or a sexual offender group. No hearing clinician working with English speaking clients faces similar expectations of being all things to all people. These expectations can’t be met. Like the sign language interpreter who can’t overcome the confused communication dynamics of a fast-paced meeting, the deafness expert is set up to fail. Yet he may be reluctant to admit that he cannot communicate well with all his deaf clients because he was hired with the expectation that he would. He may have difficulty acknowledging that after three sign language classes and 1½ years of agency-funded training, he is still a beginner. His supervisors may not want to hear that ASL is every bit as challenging to learn as any other language—it’s not something one just “picks up.” The deafness expert may have difficulty justifying an expense like an interpreter for family therapy sessions. The clinic thought they had created accessibility by hiring the deafness expert. Now they learn they have additional expenses and modifications beyond that. And they certainly don’t want to hear that the deafness expert needs the assistance of a Certified Deaf Interpreter (CDI) in addition to a sign language interpreter to communicate with some of his clients. A seasoned clinician who has authority within a mental health setting and who has a great deal of clinical experience with deaf people might be able to explain these issues and dynamics to her administration and get support. A new clinician hired into an agency that has no previous experi-

14

GLICKMAN

ence working with deaf people probably cannot. Instead, the clinician is likely to try to please everyone, with predictably poor results. If the agency found it easier to hire a hearing person who signs than to accommodate a deaf person, there may have been deaf candidates who didn’t get the job. Then instead of creating access, the program has just begun by directly offending the local Deaf community, making it very difficult for their newly hired clinician to establish cross-cultural legitimacy. When a mental health program is serious about creating accessibility and is informed about what this truly involves, it may be able to serve some deaf consumers, especially those who are educated, who are assertive about their rights, and who affiliate comfortably with hearing people. But mental health settings that want to serve the entire Deaf community must have a higher standard than mere accessibility, whatever may be required by law. Mental health programs are designed to heal. Healing requires honestly grappling with the power and communication dynamics between deaf and hearing people, and having special knowledge and skills. To be truly effective, these programs need to be designed “from the ground up” by and for deaf people. THE MENTAL HEALTH UNIT FOR DEAF PERSONS AT WESTBOROUGH STATE HOSPITAL The Mental Health Unit for Deaf Persons (“Deaf Unit” for short) is a 10-bed acute-care psychiatric unit in Westborough, Massachusetts. It was established in 1987 on the recommendation of a task force involving mental health clinicians and Deaf community activists. In Massachusetts, it did not take a lawsuit to create this program. The unit was established at a time when a receptive, liberal governor responded to political mobilization in both the provider and consumer communities. The unit was created along with the Massachusetts Commission for the Deaf and Hard of Hearing, the expansion of programs for independent living skills centers, and the creation of telephone relay services. The Deaf Unit is the only program of its kind in New England. It serves adolescents and adults, mainly from Massachusetts, but occasionally from neighboring states. The Deaf Unit is designed as a treatment center for acute psychiatric illness, not a “warehouse” for those with chronic mental illness. I was one of two co-directors of the unit from 1987 to 1989 (Sherry Zitter, LICSW was the other), and I returned as unit director in 1996. The Deaf Unit is housed in a state psychiatric hospital, and is administered by the hospital, a facility that had no previous experience serving deaf people. The hospital administration in turn reports to the administration of the local catchment area of the Department of Mental Health. Thus, although the Unit serves only deaf people, it is dependent on the good will and financial support of many hearing administrators who have no particular expertise in working with deaf people. Although officially chartered as a culturally affirmative mental health program, the Deaf Unit still has to exist in the real world, subject to ever-changing fiscal and political realities.

1.

CULTURALLY AFFIRMATIVE TREATMENT

15

From a culturally Deaf perspective, there is much to criticize about our program. Four of the five unit directors to date have been hearing. Deaf people have never made up more than one third of the staff. We have hired staff at times who had no signing abilities. We have had some staff who are insensitive to the deaf experience. Partly, this is because Westborough State Hospital is a unionized, civil service work environment in which we do not always have full control over hiring and promotion. Like the hospital and area administrators, the union leaders have varied in their sensitivity to the needs of deaf patients and staff. Nor can we always find staff who are qualified in their respective disciplines as well as in ASL or, even better, qualified and deaf. Readers should not imagine that the barriers to creating culturally affirmative programming in our setting are any fewer than elsewhere. But as a program that seeks explicitly to be culturally affirmative, and that is formally chartered to be culturally affirmative, we do 7 things consistent with our culturally affirmative mission: 1. Culturally Affirmative Programs Serve Only Deaf People, Usually From a Large Geographic Area The Deaf Unit, although housed in a hearing psychiatric hospital and administered by a mental health agency with no particular expertise in deafness, serves only deaf people. Because signing deaf people are a low-incidence population, we necessarily serve a wide geographic area. Thus, our unit is a statewide program with capacity to serve clients from outside Massachusetts when beds are available. We also are unique in Massachusetts in serving both adolescents (14 years of age and older) and adults on the same unit. This has both advantages and disadvantages, but because the state chose to support only one specialized unit, we were granted permission to mix these age groups. When our unit opened, we made an enormous effort not to hire existing hospital staff into our program. This was challenging because, in order to recruit signing staff, we offered better pay for direct-service positions than the rest of the hospital. Fortunately, the main union steward at that time was a person of unusual awareness and cultural sensitivity, and she supported our efforts to find staff who were competent signers. We got the staff we wanted, and we established the precedent of requiring sign language skills for most positions. We also alienated much of the existing hospital staff. To make matters worse, we then refused to send our patients to the hospital day-treatment programs, developing our own day-treatment groups instead. We told everyone that we wanted to be autonomous. Again, we got what we wanted, but at the cost of some bitterness and resentment. In later years, we have put energy into “mending fences.” Only after creating a distinct physical space and an autonomous treatment program did we begin seeking opportunities for our patients to join in hospital-wide events and activities, like swimming and hospital parties. Now, our patients work successfully in the hospital’s vocational workshop

16

GLICKMAN

and snack bar. They also attend AA meetings with their hearing peers. We are looking at ways to make the whole hospital deaf friendly, including the ultimate goal of hiring deaf people to work in hearing parts of the hospital. If I had to do it again, I would do it exactly the same way. I would create a deaf space first, then seek out opportunities for mainstreaming. Some initial alienation from the larger community was probably unavoidable. Developmentally, it was essential to establish autonomy before welcoming the option of limited integration. I’m aware of other deaf inpatient programs that never overcame the demand of unions, civil service, and management to hire and promote existing hospital employees for new deaf services. This is a fatal error because once the mainstreaming model is established, it perpetuates itself, and the deaf voice that is needed to change it can never materialize. Our decision to provide our own day-treatment programming, and indeed to provide a distinct deaf-treatment milieu, strikes some people as regressive. People often respond in the same way to deaf schools. They feel that mainstreaming, whether in education or in mental health treatment, creates inclusion and that segregation results in the ghetto-ization of deaf people. I know there are parts of the United States where mental health administrators will not even consider separate programming for this reason. It can be very difficult to persuade these hearing administrators that their feelings about integration are culturally hearing viewpoints that are not respectful of the experience and world view of most people born deaf. Separate deaf programs may be controversial for hearing people, but they are rarely so for signing deaf people. Mainstreaming, as deaf people commonly note, more often leads to isolation than inclusion. This is reflected powerfully in one ASL sign for “mainstreaming” in which, instead of the fingers from both hands folding together and blending, the five fingers of one hand “overpower” one finger from the other hand. In the pages that follow, I spell out the tremendous clinical advantages to creating separate deaf mental health programs. Consider a few points: How many deaf staff will typically choose to work in a hearing programs that strives only for accessibility? How well can the mentoring and training of deaf professionals occur in such a setting? Who decides whether these programs address the needs and experience of deaf patients adequately? Do these programs speak honestly to the daily realities of deaf people’s lives? The Deaf Unit was created at a brief period in time when there was a widespread statewide vision in Massachusetts of the need for specialized deaf services. There are specialized deaf schools, mental health and substance abuse programs, and other services throughout the country. They exist wherever the Deaf community has been strong enough to force hearing decision-makers to stop assuming they know what is best for “the deaf” but rather to open their minds and listen to deaf people.

1.

CULTURALLY AFFIRMATIVE TREATMENT

17

2. Culturally Affirmative Programs Strive to Hire Large Numbers of Competent Deaf Staff at all Levels of the Organization Nothing creates a deaf program like deaf staff. In trying to create a signing environment, respectful and empowering of deaf people, there is simply no substitute for hiring large numbers of deaf people. Needless to say, they should be employed at all levels, from administrative leadership to direct care. However, this is more easily said than done. There are many obstacles to hiring a large number of deaf staff, not the least of which is the difficulty finding people with the necessary credentials and skills. Deaf people face barriers in higher education that limit the number of qualified job applicants. This situation is improving, but for it to improve further there need to be more opportunities for deaf people to get professional training and mentoring. It is also necessary for young deaf people to have the chance to work at direct care so they can gain experience and make informed decisions about further training. Deaf programs can provide these opportunities, which in turn creates a larger group of qualified deaf candidates for advanced professional roles. Robert Pollard is a leader in training deaf psychologists, having created a rich mentoring experience for deaf psychology interns at the University of Rochester Medical Center in New York (Pollard, 1992, 1996). He argued that hearing people who work with deaf people in mental health have an ethical obligation to seek out ways to mentor deaf people into professional roles. His program trains deaf psychologists to work with both deaf and hearing people. When deaf staff are working regularly with hearing clients, we will have reached the goal of true accessibility and integration. Because most hearing people think of deafness as a disability rather than a cultural difference, they don’t easily see the advantage of hiring deaf people. Ignorance about sign language (“it’s easy to learn”) and about what is necessary for serving deaf patients (“just provide an interpreter”) gets in the way. Hearing people are forever raising concerns about safety in hiring deaf people. An administration that may go along with hiring a few deaf staff may resist hiring a large mass of deaf staff. The idea of creating a deaf-majority program can frighten and intimidate hearing people. They will object fast and furiously. They will argue that hearing candidates have more experience. Of course they have more experience when the whole world is open to them for training and work opportunities! These hearing objectors typically don’t appreciate the difference between a second language Pidgin Sign English user and a native ASL user, nor do they appreciate the other assets that deaf people can bring to a program to balance their relative lack of experience. The skills that deaf staff at the Deaf Unit have brought to managing crises have so impressed everyone that now hearing staff complain about safety when there are no deaf people present. In working with hospital and union leadership to elicit support for specialized programming, it is helpful to have articulate deaf people making

18

GLICKMAN

their own case. For hearing people who have never interacted as a peer with a signing deaf person, this alone can be a powerful experience. Most hearing people don’t want to appear prejudiced. Often, they need help understanding how the ideas they’ve learned about what deaf people allegedly can’t do are prejudice. In our facility, key hiring decisions are made collaboratively by discipline heads (the directors of nursing, psychology, social work, etc) and the unit director. The discipline heads vary in their sensitivity to the needs of deaf people. A unit director like myself needs to nurture his alliances with them, educating them about deaf people while respecting their competency in their own fields. As with the unions, when an alliance is made, the right people are usually hired. When the discipline heads and the unit director don’t agree, a split in leadership occurs that is destructive to the unit’s functioning. Somewhere in an organization there needs to be an empowered leader championing the cause of culturally affirmative treatment and developing the necessary organizational alliances and processes. As the percentage of deaf staff in a program increases, the dynamics between deaf and hearing persons change. Deaf staff start speaking out about poor communication and cultural insensitivity. Hearing staff find they must sign all the time. They can’t get away with “forgetting to sign” or with “lazy signing.” A mood shift occurs with deaf patients and staff taking increasing ownership of the program, seeing it as something they are invested in, as opposed to just a job. When visitors come to our unit, patients compete to determine who will give the tour. This is their program. The therapeutic value of this feeling is priceless. As the deaf presence in an organization increases, there may be hearing staff members who cannot tolerate having empowered deaf colleagues. But for the most part, morale rises and the program becomes a more exciting place to work. Staff sense that something important and special is developing. The hearing people find themselves changing. In a deaf-centered environment, they find they need to develop new skills and sensitivities, and they have to learn to share power. As the Deaf Unit, with its critical mass of deaf staff, became an established part of Westborough State Hospital, the attitudes in the larger hospital community changed too. Deaf people are now found all around the hospital. Many hearing staff have begun to appreciate the language and cultural competency that deaf staff bring. The union stewards now have deaf constituents they must represent. Because there are many models of effective communicators present, hearing people begin to appreciate what they don’t know and can’t do. Administrators now show pride in our special program. But without the ongoing, serious commitment to hiring large numbers of deaf staff, hearing ignorance about deaf people would certainly have dominated. It is unfortunate that hearing people generally have to be pushed, often kicking and screaming, into creating a deaf-centered program, but such is the reaction of the majority to the empowerment of a minority.

1.

CULTURALLY AFFIRMATIVE TREATMENT

19

3. Culturally Affirmative Programs Need Genuine Communication Excellence The communication challenges involved in working with mentally ill deaf people are daunting. To begin with, there is enormous variation in the skill with which deaf people communicate in sign and spoken languages. Although this is not readily apparent to a nonnative sign user, many of the patients in programs like ours are sign language impaired. They have limited sign vocabulary. They use ASL grammatical features inconsistently or poorly. They omit references to subject and object and do not sequence times logically. They mix standard signs, initialized English signs, home signs, gestures, and local slang. They do not know how to adapt their communication style to audience and setting. Their baseline sign communication is impoverished, and their spoken and written language skills are even more so. All this is before perhaps acquiring a thought disorder that further distorts language patterns. Communicating well with these persons requires sign communication skills that go beyond the sign language skill of second-language sign learners, whether hearing or deaf. The nuances, of course, are visible only to those with an exceptional level of ASL sophistication. I remember an instance when all of our Deaf Unit staff, including several native signers, were having difficulty understanding a new patient. We were discussing this when an employee with 3 weeks of sign language training announced confidently that he had no trouble communicating with this patient. This reminded me of the proverb, “a little learning is a dangerous thing.” In addition to two full time interpreters, our Deaf Unit employs a communication specialist. When the unit first opened in 1987, the two hearing unit directors were able to argue that we needed a deaf communication specialist to give the unit cross-cultural legitimacy, facilitating our hiring of other deaf staff. The communication specialist is a linguistically trained, college educated, native user of ASL. Hearing staff with decent Pidgin Sign English skills commonly misjudge their communication abilities. So do deaf staff who may think they use ASL when they don’t, or who may think they can match a patient’s communication style when they can’t. Just as hearing speakers of English may speak in a confused, rambling way, so deaf signers can sign in a confused, rambling way. When people are not communicating clearly, but think they are, there needs to be a credible expert who can point this out, and to model genuine communication excellence. Language skills bear heavily on diagnosis and treatment. Mental health programs for deaf people can’t afford to be sloppy in this crucial area. On our unit, the communication specialist has many other roles too: • training both hearing and deaf staff in American Sign Language through a series of regular classes,

20

GLICKMAN

• performing communication evaluations of patients, which advise the treatment team of the most effective communication mode for each one, • working when needed as a certified deaf interpreter (CDI),1 • advocating for culturally affirmative policies and procedures, • supporting patient education in special circumstances, such as forensic evaluations, when a patient needs to learn basic legal concepts, • creating visual therapy tools. Our current communication specialist, Michael Krajnak, is artistically talented, and has developed visually oriented therapy tools. He created most of the illustrations in this text and in the accompanying compact disc. There is a therapeutic role for the communication specialist too. The following is an example: Apatient had an extensive history of childhood abuse and neglect. As a result, she had developed some serious interpersonal problems. She was chronically angry, demanding, critical, and blaming of other people. She saw every instance in which she didn’t immediately get what she wanted as further victimization. She had become grossly entitled, expecting her every wish to be promptly addressed, crying discrimination and prejudice whenever that didn’t happen. She accepted no responsibility for changing herself. Although she had begun as a victim, this patient had now become a victimizer. Within a very short time on the Deaf Unit, the entire staff, deaf and hearing, were fed up with her. Few wanted to help her. This, of course, reinforced her sense of herself as a victim. One day, this patient cornered a nurse and threatened to assault her because the nurse had set some limits on her screaming. She gestured angrily, swore, and raised her fist, then moved to attack the nurse. Staff intervened and physically restrained the patient. The patient could not see how her behavior justified her being restrained. Our staff had tried to show her that she was creating the circumstances of her own rejection by others. We tried to show her that she was turning even natural allies like mental health staff against her. When we confronted her about her raised fist, threatening signs, and angry looks, she replied that she wasn’t threatening. She was just expressing her feelings in a culturally Deaf way. Fortunately, our communication specialist, whose culturally Deaf “credentials” were beyond dispute, could challenge her. He told her this was baloney, and he demonstrated for her how a culturally deaf person would show anger. No hearing person, no matter how skilled a signer, could have done that. No hearing person would have been credible in her eyes. She needed to hear from a culturally competent deaf person that she had become her 1

A CDI re-interprets ASL into visual-gestural language. Sometimes a CDI might work as “relay interpreter” along with an ordinary sign language interpreter (who would voice for hearing people and sign for the CDI). At other times the CDI might simply observe the communication flow and assist when asked, or interrupt when needed.

1.

CULTURALLY AFFIRMATIVE TREATMENT

21

own worst enemy. Because the message came from him, this patient was able to understand better how her behavior was perceived by others. This kind of treatment problem occurs frequently in work with Deaf people. We need credible experts to reach deaf patients who are confusing bad behavior with Deaf culture. We also need credible deaf experts to help patients trust us and not see us as the enemy, just oppressing them as many of the other hearing people in their lives have. A “good hearing signer” will often not have the language skills to work well with many deaf patients. Even some “good deaf signers” do not have these skills. Because it is difficult to find both exceptional communication sophistication and exceptional clinical skill in any one person, we often do “cotherapy,” with the signing clinician working alongside a native ASL user. Often our communication specialist works in this role of cotherapist, not leading the therapy but ensuring a standard of communication excellence. These cotherapy teams, often composed of deaf and hearing colleagues, have other therapeutic uses. They establish a model of deaf and hearing people working as equals and they interrupt the deaf-hearing transference patterns that, when they can’t be interpreted or understood, interfere with the treatment. For instance, some deaf patients have enormous rage toward hearing people that they project onto their hearing therapist. Other deaf patients think hearing people are smarter and better, so that deaf staff must be incompetent. With psychologically sophisticated deaf patients, one can discuss these dynamics and try to help them develop insight. One can use the therapeutic relationship to help the deaf patient “work through” these issues. But this is not a realistic strategy with many of our psychologically unsophisticated patients (see chap. 4, this volume). A deaf/hearing cotherapy often diffuses these cross-cultural transference projections and helps ensure both effective communication and staying in a problem-solving, skillbuilding treatment mode. They also provide actors for the important therapeutic technique of role playing. 4. Culturally Deaf Programs Create an Affirmative Physical Environment On the Deaf Unit, we provide TTYs with dedicated phone lines for staff and patients. The doorbell, telephone, and fire alarm are hooked to flashing lights. Patients’ bedrooms have extra light switches outside that are flicked instead of knocking. The walls are decorated with the work of deaf artists like Chuck Baird and with images of famous deaf people—a statue of Alice Cogswell wrapped in a Deaf Power banner, a portrait of Laurent Clerc. Staff and patients have decorated further by donating their own drawings, paintings, and tapestries. A bulletin board has Deaf community news and a running sign language game. There are Deaf community newspapers and magazines on the tables. ASL handshapes and signs are stenciled on the walls. A staff picture board connects our faces to our names and roles. There

22

GLICKMAN

are visual displays concerning health topics such as diabetes, healthy eating, and the dangers of cigarette smoking. Railings and a contrasting blue wall stripe help guide visually impaired deaf patients. In the typical “accessible” hearing facility, modification of the physical environment is limited to purchasing one TTY. Because these programs don’t regularly serve deaf people, most staff will be unfamiliar with how to operate it. I remember “interpreting” (see discussion of communication policy below) a phone conversation for a deaf colleague with a hearing professional in another agency that claimed to be accessible to deaf people. The deaf colleague suggested that the person use his TTY so they could talk directly instead of having me interpret. The caller asked us to wait while he rummaged through a closet. After several minutes he located his TTY, and my colleague got on ours, allowing me to watch the conversation. Once on the TTY, it was clear that the caller knew nothing about TTY conversational etiquette. My deaf colleague and I burst into hysterics when, fumbling for a way to signal that he was done typing, the caller typed “over,” as if he were using a 2-way radio, instead of “GA” for “go ahead.” Having a TTY does not make a program accessible by phone even when staff do know where to find it and how to use it. Having a TTY without a dedicated phone line for it leaves the unsolved problem of how a deaf patient receives an incoming call without depending on hearing persons as intermediaries. Recall from the prologue of this volume that Ms. DeVinney’s TTY was at first locked in a conference room where only “her nurse” could get it for her. 5. Deaf People Manage the Communication Dynamics Communication is an emotionally loaded issue for deaf people. If communication isolation represents the typical experience of deaf people in a “hearing world,” then culturally affirmative treatment environments offer an opportunity for healing and empowerment through the means with which communication is managed. When we opened the Deaf Unit in 1987, we naïvely imagined we would create a fully signing environment. Everyone would sign in ASL all the time. A much more realistic goal, we soon came to realize, was a bilingual environment where ASL and English were respected and used as languages of equal merit. Until Deaf programs are able to hire only staff who sign fluently, the practical administrative concern is how to manage a bilingual (in some cases, multilingual) environment between groups of historically unequal power. This translates into how to empower deaf people to manage the communication dynamics. Perhaps the key area that distinguishes a culturally affirmative program is our conscious, intentional focus on communication dynamics. We do not assume that effective communication is occurring because an interpreter is present or because some of us sign. Instead, we not only ask the deaf staff to evaluate the communication, we actually ask them to direct it.

1.

CULTURALLY AFFIRMATIVE TREATMENT

23

Our Deaf Unit has carefully thought out communication policies and procedures, which we continuously revise. We expect our staff to follow these policies as a condition of employment. Our most important policy is that deaf people manage how we communicate at mixed deaf/hearing meetings. The deaf people present decide whether hearing people should sign for themselves or use an interpreter. Our group conversations are routinely interrupted when communication breaks down. These interruptions, although bothersome, are actually a sign we are doing well, because they reflect the fact that our deaf staff feel empowered to challenge poor communication dynamics. By contrast, in the typical “accessible” program, the lone deaf person will offer an “empty nod” and not truly participate. Our late-deafened consultant psychiatrist, Sanjay Gulati, a confessed practitioner of the empty nod, comments: It’s hard to describe the feeling of relief and comfort involved in joining a meeting at Westborough. I know that if I didn’t understand something, I can say so, and the meeting will pause respectfully while I catch up. The participants will then become more attentive to communication, instead of dismissive or confused as would happen elsewhere.

Our deaf staff introduced the practice of using a “communication ball” in interpreted meetings to mark who is speaking and ensure only one person speaks at a time. The person wishing to speak raises his or her hand, and waits for the ball before speaking. This practice ensures that each participant has the group’s full attention for every comment. In particular, the interpreter(s) can keep up without difficulty. It is remarkable how enthusiastically our patients embraced this practice. Even when everyone in a group signs, we often still use a communication ball (a Koosh™ ball works well) because it fosters carefulness about communication that is in dramatic contrast to what deaf people typically experience. We don’t assume that deaf people are necessarily good signers. Deaf patients can and do request the assistance of an interpreter or the communication specialist even if their therapist signs, even if their therapist signs and is deaf. Indeed, our deaf staff often seek the assistance of the communication specialist. They find it a relief to be able to acknowledge that they also need help in communicating well with some of our patients. On our unit the deaf staff, empowered to set the communication rules, set up guidelines that not every deaf person would agree with. In other settings, such as some schools, deaf staff prefer that people sign for themselves at all times. That’s fine also. The point is that the deaf staff do the deciding. Sometimes patients are also empowered to make these decisions. For instance, a patient is invited to a treatment team meeting, and the hearing staff ask the patient whether they should sign for themselves or use the interpreter. We do this not merely out of politeness but because we recognize that there are powerful elements of healing embedded in the issue of the

24

GLICKMAN

management of communication. Needless to say, these kinds of subtleties are well beyond the conceptual framework of staff in a hearing program that is proud merely to have secured an hour of interpreting. Our communication policies address other important issues. One issue is who is authorized to interpret. The usual practice in programs without expertise in working with deaf people is that whoever signs is asked to interpret. On our unit, only the interpreters and the communication specialist can interpret. Others can “help with communication,” a practice that gives us flexibility while respecting the expertise involved in communication and the distinct role of the interpreter. Our communication guidelines do not mandate rigid political correctness. We haven’t outlawed, for instance, speaking while signing (“simultaneous communication”), or using Signed English, or writing. At times, staff do whatever it takes to communicate. Creativity and flexibility are the norm. In hearing programs, by contrast, communication is taken for granted, and few hearing staff have the skills of adapting communication when there is no common language. 6. A Culturally Affirmative Program Works Mindfully with Deaf/Hearing Cross-Cultural Transference, Countertransference as well as Cultural Biases Most clinicians understand the Freudian concepts of transference and countertransference. People transfer onto new people the internalized image they have developed about primary caregivers. A person with a harsh, rejecting father might be inclined to perceive male authority figures as harsh and rejecting. If a child is physically or sexually abused by a primary caretaker, that child will likely have difficulty trusting others because of the transferential expectation that others will behave in the same way as the abusing caretaker. Cross-cultural transference dynamics between hearing and deaf people occur both between staff and patients and among staff members. They occur between a hearing supervisor and a deaf supervisee and between a hearing program administrator and the client community. They occur regardless of whether the people involved are aware of them. Transference occurs with groups as well as with individuals. Black people may project onto individual White people their internalized image of White people as a group. Black people may develop stereotypes about White people (and vice-versa) based on early life experiences with White people or group ideology. An individual White person with good intentions may still be experienced by an individual Black person, because of racial transference, as hostile. Similarly, individual deaf people who have come to expect hearing people to behave in certain oppressive, prejudicial ways may transfer this expectation onto new hearing people, such as a wellmeaning therapist.

1.

CULTURALLY AFFIRMATIVE TREATMENT

25

As a hearing director of a deaf mental health program, I’ve at times become the object of deaf people’s transferential feelings about hearing people. At times, deaf patients and staff transfer onto me expectations that I act like a “great White father,” magically solving all their problems. I’m supposed to create a perfect treatment and work environment. Of course, I too want to create this perfect environment, and like many hearing professionals who work with deaf people, I have had rescue and savior fantasies about my role with the Deaf community. Thus transference works both ways. A typical “savior” projects feelings of weakness onto others, and then insists on helping them rather than acknowledging his own weaknesses. The naive hearing person’s eagerness to help can easily be a reflection of a deeper need to control or to create relationships in which the helper is defined as healthy, altruistic, and morally correct. Hearing people may need deaf people to need them, and deaf people may need hearing people to save them, unhealthy dynamics that can corrupt supervisory as well as psychotherapeutic relationships if the people involved are not aware of them. My illusions about my supposed “beneficence,” however, are also confronted by deaf people’s transferential rage. When I fail to live up to their expectations to be the perfectly beneficent rescuer, I can become the most evil oppressor. This might occur with a patient when the treatment team sets some behavioral limits. I’m the “boss” of the Deaf Unit, so I’m the ultimate person to blame for this “unfair” treatment. It might occur with staff when I hold them accountable for work performance or don’t hire or promote a candidate that other staff preferred. In the unfortunate instances when we have had to terminate the employment of a deaf staff member, it can be easy for that staff person and his or her friends to interpret this as oppression. In addition to unconscious transference dynamics, cross-cultural supervision is vulnerable to more overt biases and prejudices. Cross-cultural supervision is especially tricky when the supervisor is from the dominant group and the supervisee from the minority group. A recent text on clinical supervision (Bernard & Goodyear, 1998) brought much needed attention to racial, gender, sexual orientation, and power issues as they can play out in supervision. Shulman (Shulman, 1982) presented a model of supervision as the skill of balancing support for staff with the demand that they do their jobs. The support function involves teaching, mentoring, and developing the supervisee’s skills. The demand function involves holding staff accountable to work performance standards. Supervisors err when they provide too much demand and not enough support (the harsh, critical supervisor whom staff resent) or too much support and not enough demand (the nice supervisor who can’t get people to do their work). In a hearing supervisor–deaf supervisee context, the hearing supervisor who is culturally unaware may show prejudicial biases against deaf people. These biases might place undue emphasis on a supervisee’s speech and English skills, such when someone remarks, intending a compliment, “you speak so well.” I once observed an audiologist telling our culturally Deaf

26

GLICKMAN

communication specialist about the “exciting” advances in cochlear implant technology, assuming, as hearing people typically do, that he was as excited as she. He played along with her, pretending to be enthusiastic, and the two of us had a good laugh about it later. Hearing people might also show biases in their assumptions about what a deaf employee can and cannot do. Because it is uncomfortable for hearing people to deal with the communication barriers and because they have been socialized into understanding deafness as a disability, the bias may be reflected in ignoring, avoiding or discounting the deaf employee. Julie, the nurse I described earlier, showed this kind of bias, as did the nursing supervisor who defended her. So have other supervisors who, because they can’t understand sign, can’t appreciate the skillful interventions deaf staff perform with patients. Majority clinicians who have not been cross-culturally trained inevitably repeat the offenses historically inflicted on the minority group. I see this even in some of the hearing staff on our unit, who should know better. They will talk without signing in the presence of deaf patients and staff. They will argue that they are being discriminated against when deaf people don’t speak or when qualified deaf people are given leadership roles. They will try to take over situations where deaf people are involved. They will expect deaf people to speak and assume they can lip-read or could hear “if they really wanted to.” They will attend to and favor the hearing people in a given situation. They will assume deaf people are incapable. They will disregard the communication rules set up by their deaf colleagues and assume deaf people must accommodate to them and not they to deaf people. Hearing supervisors who have been newly introduced to Deaf culture and don’t want to appear oppressive, or who are in an “immersion” stage of identity development (Glickman, 1993a) in which they automatically see deaf people as experts on serving deaf people, may make the opposite kind of mistake. They may be reluctant to confront the deaf employee about work performance problems. When the deaf employee cries “prejudice” and “discrimination,” these supervisors become self-doubting. This can also be the experience of well-meaning teachers and college professors who are working with a deaf student who is not doing the required academic work and who is vocal about perceived discrimination. Some minority persons abuse the ideas of prejudice and discrimination when they are held accountable to work or academic performance standards. The crossculturally unskilled supervisor or teacher can easily become disempowered when this occurs. From a psychodynamic standpoint, these cross-cultural transferential and counter-transferential expectations create opportunities for growth and “working through” of past abuses. When hearing clinicians are aware of the cross-cultural dynamics and don’t act according to expectations, deaf people have opportunities to see hearing people, and themselves, in new ways. Receiving affirmation and support from an “oppressor” can be more powerful than receiving it from within your own community. A heterosex-

1.

CULTURALLY AFFIRMATIVE TREATMENT

27

ual male colleague of mine told me the story of a lesbian client who preferred to work in psychotherapy with an “enlightened” heterosexual male. “It’s easy to find a lesbian therapist who will affirm my identity,” she told him, “but if I want to work through my issues with my father, I need to talk to a straight man.” On the other hand, if hearing people confirm expectations that they are insensitive, controlling, and patronizing, deaf people will respond with anger, depression, and with more militant behavior. If deaf people working and receiving treatment in a mental health treatment setting experience disempowerment and communication isolation yet again, this may cause some degree of retraumatization. Similarly, if the heterosexual male therapist shows the same homophobic attitudes as the lesbian client’s father, the opportunity for growth is lost. The client may become rooted even more deeply in rage and despair. In a mental health environment that works with minority people, one needs to have staff who “get it,” who understand nondefensively about oppression and prejudice. The more such people are present, the more deaf patients and staff will assert themselves, placing their experiences with hearing people on the table. Sometimes this is rocky. Arguments and cross-cultural misunderstandings occur. Power struggles happen. One can no more avoid these issues in a cross-cultural treatment setting than one can avoid transference issues in psychotherapy. The healing occurs when the cross-cultural transference issues are handled well. An example: A deaf mental health worker worked overtime on the evening shift. There he observed a hearing nurse, a beginning signer with only three months’ experience on the unit, verbally direct an agitated deaf patient to his room for a time out. He approached the patient to try to de-escalate the situation, but the nurse gestured him back. She believed the patient should be left alone in time out until he calmed down. The deaf mental health worker complied, angrily. The next day he complained that the hearing nurse had made the patient worse by expecting him to read her lips, that the patient hadn’t appeared threatening to him, and that the nurse had insulted him by having him back off as if he had no expertise. From his deaf point of view, she had acted oppressively toward both the patient and him. The nurse had a different perspective. She explained that the mental health worker hadn’t been there during the previous half hour when she was alone, trying to de-escalate the patient. She said that she has a good rapport with this patient, something others knew to be true, and that even without knowledge of sign language, she knew what a raised fist and an angry expression meant. She felt that the mental health worker had intervened inappropriately. “You don’t try to reason with a threatening, explosive individual,” she said. “Instead, you move them to a time out until they are calm enough to reason with.” These two talented and valued staff members were now adversaries. Each asked me to discipline the other. I needed to help them understand the

28

GLICKMAN

incident as normal and expected conflict in a cross-cultural situation. First, I brought them together, with an interpreter, and helped them to hear each other. Each had good points. The nurse was correct in saying that the deaf mental health worker had missed the patient’s threatening behavior, and should have been out on the floor earlier, not in the nurses’ station. She was also right that we do not reason with people who are out of control. The mental health worker was right in saying he could understand the patient better than she and that her attempts to communicate might have made matters worse. She explained that when she had gestured for the mental health worker to move back she had merely intended that he leave the patient in his bedroom until he was calmer. She had still wanted him involved, but hadn’t had the sign language skills to explain her reasoning. He had seen her as not respecting his skills and felt deeply offended. After the incident, he had left her a blunt note, which she took as insubordinate and hostile. But he was merely being direct in the way that deaf people often are; he thought he was engaging her in a process of problem solving. I told them that conflict like this always happens in a cross-cultural situation, and I helped them to see what had happened as not personal, but cultural. This neutral explanation lessened their animosity and put them back in a collaborative relationship with each other … until the next conflict, which we knew must happen. Part of the program manager’s job is to help staff see themselves in cross-cultural context. This will not happen, of course, if administrators are working from the medical-pathological model of deafness. It will certainly not happen, with either staff or patients, if the program staff are not even aware that deaf/hearing conflicts are as complicated as those between any other majority and minority groups. 7. A Culturally Affirmative Program Approaches Psychotherapy Differently This is a controversial topic: Must the psychotherapy method itself be adjusted for work with deaf people? To argue that deaf persons do better with a particular kind of treatment may evoke the days when deaf people were thought to be concrete thinkers who would be poor candidates for insight oriented therapy, and needed behavioral treatment. Discussing tailoring psychotherapy to Deaf culture may strike some as paternalistic or even racist. Yet in the literature on cross-cultural therapy, there is a tradition of thinking about counseling and psychotherapy in relationship to class, ethnicity, and culture. Whenever one talks about a group of people, say deaf people, one risks stereotyping and one neglects the issue of individual differences among that group of people. No generalization about deaf people and psychotherapy will be universally true, no matter how sensitive and informed it may be. Allen Sussman, the pioneering Deaf psychologist at Gallaudet University, has been in the forefront criticizing hearing clinicians who jump to con-

1.

CULTURALLY AFFIRMATIVE TREATMENT

29

clusions about the alleged limitations of deaf people. He rightly pointed out that these hearing clinicians often lack the communication skills and cultural sensitivity to make judgments about deaf people (Sussman, 1998; Sussman & Brauer, 1999). He and others argued that one cannot generalize about deaf people who show the same range of intelligence, verbal skills, and psychological sophistication as hearing people. This is certainly true. Yet it is also well established in the literature on psychotherapy with culturally different minorities to discuss the issue of match between psychotherapeutic method and culture. Ivey, D’Andrea, Ivey, and Simek-Morgan’s textbook on theories of counseling and psychotherapy using a multicultural perspective is filled with examples of how culturally skilled psychotherapists adjust counseling methods to fit particular cultural groups (Ivey, D’Andrea, Ivey, & Simek-Morgan, 2002). A few examples: For some cultural groups, an action-oriented problem-solving approach resonates better than an introspective one. Rules about eye contact, greetings, and other rituals, social distance, appropriate self-disclosure, use of time, and boundaries regarding personal involvement with clients vary considerably. Different cultural groups have different “indigenous” modes of helping and healing that can be drawn on in psychotherapy. Different groups have different culturally relevant stories and metaphors to draw on. Definitions of family and individual boundaries within families vary considerably. Religious traditions can be both resources for helping and barriers to helping. There are many ways that culturally skilled counselors adjust counseling approaches with members of different communities and, done skillfully, this does not lead to stereotyping but to a richer counseling experience. I’ve addressed this question in detail elsewhere (Glickman, 1993b) but anyone who doubts that cultural variables impact on counseling with deaf people should consider some sample relevant questions: • Do culturally Deaf people use different norms regarding eye contact, touching, pointing, appropriate social distances, and conversational etiquette? • Do hearing and Deaf people interpret facial expressions and other forms of nonverbal communication differently? • Do different languages influence not just the content that is discussed but the manner in which concepts are conceptualized and the style of conversational discourse? • Does Deaf culture influence norms for emotional self-expression and self-disclosure? • Do deaf and hearing people use physical space, including lighting and seating arrangements, differently? • Do culturally Deaf people hold any different values from culturally hearing people? • Do deaf people have common experiences with the notion of “helping” that may influence their perceptions of professional helpers?

30

GLICKMAN

• Are there particular stories or metaphors that resonate with culturally Deaf people and therefore may be resources in counseling? • What resources for helping and healing may be available in the Deaf community and culture? The issue of adapting treatment is even more clear when working with the subset of deaf people we most frequently see in inpatient settings. In chapter 4, I describe these “psychologically unsophisticated” persons and present a model of treatment designed to engage and resonate with them. In non-specialized hearing programs, these questions about adapting treatment will not even be asked. These programs seek to mainstream deaf people, usually by including an interpreter. A feature of culturally affirmative mental health programs, as I mentioned earlier, is the provision of deafonly treatment groups. Even if people believe fervently in mainstreaming as a positive social value, the fact remains that sending many deaf people into hearing treatment settings often fails. Wishing mainstreaming to work will not make it work. Yet the reasons why mainstreaming often fails are not apparent to hearing clinicians who do not use ASL, do not appreciate Deaf/hearing cultural difference, and do not appreciate the biases and transference responses they bring to this work. CONCLUSIONS: CROSS-CULTURAL LEGITIMACY Many hearing people have the experience that when they first begin to learn sign, deaf people are welcoming and encouraging. However, if they develop pretensions of “helping the deaf,” the same deaf people are far less warm. Deaf people, like all oppressed minorities, have good reasons to be cautious and even hostile when unqualified hearing people gain positions of responsibility in the Deaf world. Still, a large number of hearing people truly want to do this right. These people invest enormous time and energy into learning ASL and establishing relationships with deaf people. They strive to be sensitive to and supportive of Deaf culture, sometimes so much so that they may even romanticize the Deaf community and overlook the limitations of individual deaf people. They embrace the notion that deaf and hearing people can work together as equals and agree with the agenda of empowering deaf people to make this possible. They constantly ask themselves the question, “what right do I have to work with deaf people?” And when a deaf person challenges their legitimacy, they take the challenge seriously. These process needs cannot be avoided. If you are going to work cross-culturally or with disadvantaged people, and you are not one of them, the minority culture people will not usually accept you unless you’ve done your homework to demonstrate that you are an ally. To work with minority people well, majority people have to change. We need special knowledge and skills. We need to understand the advantages and biases that go

1.

CULTURALLY AFFIRMATIVE TREATMENT

31

along with being in the hearing majority. If we work at it long enough and well enough, we begin to establish cross-cultural legitimacy. Not all hearing people survive the process of cross-cultural encounter with deaf people. Some hearing people “burn out” on working with deaf people. We feel unappreciated. We begin to agree that maybe we shouldn’t be here. We began working with deaf people with naïve fantasies of being a rescuer and liberator only to discover that many deaf people don’t want our help or value our contributions. This too is part of the process. I think it should be recognized that although deaf people face enormous discrimination and prejudice in the workplace, even in deaf schools and other deaf programs, the opposite phenomenon also occurs. Deaf programs can be so hungry to hire deaf people that they hire unqualified deaf people. And although unqualified hearing people do poor work, the wrong deaf person can be even more destructive because he is presumed to be competent, knowledgeable, and sensitive by virtue of being deaf. These people can claim to have special skills they in fact don’t have, and when challenged to perform better can hide behind their deafness. Ultimately, the Deaf community is not well served by having inadequately skilled deaf people with destructive attitudes hired for positions of authority or service. There are days when I ask myself why I continue to do this work. I’m especially prone to question myself after being the recipient yet again of a deaf person’s transferential rage at the hearing world. Like many hearing people, I got into this work as a way to work through my own identity issues. Twenty years later, I hope I stay in the field for the right reasons: the sincere belief that, although hearing, I have something valuable to offer. Hearing people can establish cross-cultural legitimacy and can become real allies for deaf people. But hearing people who do this work need to develop cross-cultural competencies like language skills as well as the skills of valuing and working within world views that are different than our own. The core issue between deaf and hearing people is now, and has always been, one of power. Can we move from being experts on deaf people to allies of deaf people? We can—many of us have—but not without a lot of painful soul searching, and not without giving up some power. The first barrier to establishing culturally affirmative mental health programs is to understand how much more there is to this work than just providing an interpreter. Second is the energetic advocacy needed to make things happen. Social relations between Deaf and hearing people are every bit as complex as those between any minority and majority group. The treatment issues, need for cultural self-awareness, fund of knowledge, and specialized skills are every bit as challenging. Perhaps what makes this work even more difficult is that, unlike with racial and ethnic minorities, the majority persons often don’t even understand they are working cross-culturally. They work automatically from a medical– pathological and disability model, which is itself a part of the oppression that deaf people face. They don’t realize that they are looking at deafness

32

GLICKMAN

with an ideological bias that prevents them from fully comprehending the mental health treatment issues. If hearing people want to work with deaf people, we don’t need to change them. We need to change ourselves, beginning with how we think about what it means to be hearing or deaf. Then we need to learn how to have a new kind of relationship with deaf people based on equality, mutuality, and collaboration. Finally, we need to ground our means of helping, our techniques and therapeutic approaches, in positive aspects of the deaf experience. This new kind of relationship and work with deaf people is what we mean by culturally affirmative treatment. REFERENCES Americans with Disabilities Act, (1990). Bernard, J. M., & Goodyear, R. K. (1998). Fundamentals of Clinical Supervision (2nd ed.). Needham Heights, MA: Allyn & Bacon. Glickman, N. (1993a). The development of culturally Deaf identities. In N. Glickman & M. Harvey (Eds.), Culturally affirmative psychotherapy with deaf persons. Mahwah, NJ: Lawrence Erlbaum Associates. Glickman, N. (1993b). What is culturally affirmative psychotherapy? In N. Glickman & M. Harvey (Eds.), Culturally affirmative psychotherapy with deaf persons. Mahwah, NJ: Lawrence Erlbaum Associates. Ivey, A., D’Andrea, M., Ivey, M. B., & Simek-Morgan, L. (2002). Theories of Counseling and psychotherapy: A multicultural perspective (5th ed.). Boston: Allyn & Bacon. Pollard, R. Q. (1992). Cross-cultural ethics in the conduct of deafness research. Rehabilitation Psychology, 37(2), 87–101. Pollard, R. Q. (1996). Professional psychology and deaf people: The emergence of a discipline. American Psychologist, 51(4), 389–396. Poynter, W. (1994). The Preferred Provider’s Handbook. New York City: Brunner/ Mazel. Schlesinger, H. S., & Meadow, K. P. (1972). Sound and sign: Childhood deafness and mental health. Berkeley: California University Press. Shulman, L. (1982). Skills of supervision and staff management. Itasca, IL: F. E. Peacock. Sussman, A. (1998). Keynote Address. Paper presented at the First World Conference on Mental Health and Deafness, Gallaudet University, Washington, DC. Sussman, A., & Brauer, B. (1999). On being a psychotherapist with deaf clients. In I. W. Leigh (Ed.), Psychotherapy with deaf clients from diverse groups. Washington, DC: Gallaudet University Press.

2 Psychiatric Care of Culturally Deaf People Sanjay Gulati Harvard Medical School The American School for the Deaf Westborough State Hospital

Primum non nocere. (“First, do no harm.”) —Hippocrates

If you are not deaf yourself, and know no deaf people, you might begin where I did, years ago, in my understanding of deafness. I imagined that the worst of losing my hearing would be the loss of auditory pleasures—children’s voices, late Beethoven, loons calling at night across a northern lake. I was ignorant of any distinction between people born deaf and those who became deaf later in life. I assumed that deaf people led hard lives and must desperately want to hear and to speak. I assumed that sign languages had been invented for them by hearing people, and must be pale substitutes for spoken languages. Between the ages of 10 and 30, I lost most of my hearing, five decibels a year for 20 years. As I began to read about deafness and to meet deaf people, I learned how completely wrong my old assumptions were. Beethoven continued to compose even after he became deaf, but as his “talking books” make clear, he never got over the loss of easy conversation (Solomon, 1977). Helen Keller observed that blindness cuts one off from things, deafness from people. My personal experience confirmed this: Deafness is less a problem of hearing than a problem of communicating and connecting with others. For those like me who lost hearing after learning a spoken language, the problem is how to use the spoken language that we can no longer hear. For us, deafness can indeed be, in Samuel Johnson’s phrase, “one of the most desperate of human calamities.” We late-deafened people are prone to a devastating isolation as the social world recedes behind a thick glass pane. Even the closest friendships routinely fail to survive one partner’s becoming deaf. By contrast, those who lose sight sometimes experience a deepen33

34

GULATI

ing in their relationships and their connection with life. Jorge Luis Borges wrote “Blindness is a way of life, a way of life that is not entirely unfortunate” (Borges, 1995). Jonathan Hull’s first marriage did not survive his becoming blind, but he achieved a spiritual state as a blind man that had eluded him while sighted (Hull, 1990). Helen Keller had no doubt that blindness is easier than deafness. The fact that most hearing–sighted people assume differently suggests that we underestimate the importance of language in our lives. What of children who are born deaf, or who become deaf before learning spoken language? The “prelingually” deaf face the problem of how to acquire language in the first place, any language. Infants have an instinct to learn language, but the environment must provide an actual human tongue. A deaf child’s parents are unlikely to sign. She cannot hear their spoken language. And she faces a ticking clock; the human capacity to acquire a first language is not infinitely flexible. When a critical period ends, it will be impossible for her to master any language. Language deprivation is so uncommon among hearing people that every case becomes famous, from Victor, the “wild boy of Aveyron” in 18th century France to “Genie,” who was locked in a room by her disturbed parents in 20th century California (Rymer, 1993). It is almost impossible to prevent a hearing child from acquiring spoken language. By contrast, language deprivation is cruelly common among deaf people, even those surrounded by caring adults. One-sixth of a sample of British children whose early schooling forbade sign language developed profound language deprivation—essentially, an acquired form of mental retardation—right before their parents’ and teachers’ eyes (Gregory, Bishop, & Sheldon, 1995). Thus, in the worst case, early deafness can be devastating. It can also mean almost nothing. The phrase prelingually deaf supposes the child had no early access to language.1 When a deaf child is born to a signing family, his language development is normal or even slightly precocious. His parents look forward to seeing his small hands make their first signs just as hearing parents look forward to hearing their child’s first words. His eventual language fluency is identical to that of hearing children from hearing families. Sign languages are natural phenomena, appearing wherever and whenever deaf people have had sustained contact with one another. But isn’t sign language universal? No—and why would it be? The subtle implication of this common question is that sign languages are artificial and imposed. Instead, just like spoken languages, they are natural and simply emerge. England and the United States share a spoken language, but British Sign Language and American Sign Language are mutually incomprehensible. Just like spoken languages, sign languages can serve to bind community and carry elements of common culture (Fischer & Lane, 1993). Since the 1

“Prelingual,” “language,” and “linguistics”—the English “tongue” has inherited the ancient misapprehension that all language is spoken from old French and Latin.

2.

PSYCHIATRIC CARE

35

1960s, adopting the rhetoric of multiculturalism and the civil rights movement, signing deaf people in the United States have identified themselves as a language minority, the culturally Deaf. In startling contrast to the typical lay view—the view I was taught in medical school—they argue that deafness is an integral part of their identities rather than a pathological condition or handicap. They see hearing as variable human trait like height, and see the barriers deaf people face in the “hearing world” the way tall people see low doorframes; they locate the problem in society’s unwillingness to accommodate them rather than as a defect within themselves. To the hearing person, to whom talking and listening come as easily as breathing, it may seem obvious that deafness is a handicap and that deaf people should want to speak and to hear—to be “normal.” And some deaf people would agree; it would be a mistake to assume that all deaf people hold the cultural view.2 More subtly, however, it may seem obvious that what seems obvious to hearing people is terribly important—that hearing people can know what it is to be deaf, and have the right to decide what deaf people should want or should be. This “paternalism” might arise from the psychological process by which we infantilize disabilities or from the main problem for hearing people being what to do with a deaf child. Cultural deafness is less often passed from parent to child than from deaf adults and deaf peers to the deaf children of hearing parents. Who is to decide the deaf child’s identity—deaf adults, who know all about deafness but are strangers to the family, or the child’s own parents, to whom deafness is alien? This ethical puzzle is not easily solved. In Europe, historically, the paternalistic approach led to horrendous mistreatment of deaf people (Lane 1984, 1992, 1993; Rée, 1999). For centuries, deaf children were routinely abandoned, abused, or killed. Deaf adults were forbidden to marry, own property, or exercise other legal rights. Methods for teaching deaf children were at times harsh or unusual. A prominent German method, for example, involved associating sounds with flavors applied to the tongue. The occasional sharp observer took notice of sign languages and communities of deaf people, but very few hearing people ever learned a sign language or explored life within these communities. There was a universal assumption that gestures were inferior to spoken words. It was the middle of the 18th century, before a hearing educator, the Abbé de L’Epée, first took the extraordinary step of learning how the deaf children he wanted to educate talked among themselves. In his 1979 poem Deaf School, Ted Hughes described deaf children as “monkey-nimble,” with “the faces of little animals” (Hughes, 1983). To deaf people, the lips of hearing people gibber meaninglessly. To the hearing poet, 2 In fact, many culturally Deaf people have nothing against speaking and lip reading, and work at it assiduously. Their arguments against spoken language are usually better understood as arguments for sign language. They don’t want a focus on English to obscure the deeper importance of a fluent first language. In this they have strong support from linguists and brain researchers, as will be detailed further on.

36

GULATI

the deaf children’s hands flew about equally meaninglessly. Language is what makes us human. The poet, unable to perceive the children’s language, could not see them as human. The hearing can be blind to the deaf. Science cannot answer which view of deafness—cultural or pathological—is correct. Deaf people can validly argue that genes for deafness are a natural part of the human genetic pool. Hearing people can argue that these genes constitute defects, and should be eliminated. In one important sense, however, the view of most hearing people does not matter. Millions of people worldwide, including a half-million or more Americans, identify themselves as culturally deaf. I believe that physicians seeking to care for them are simply obligated to accept their view of themselves. This chapter attempts to summarize what I have learned in 7 years of psychiatric work in deafness. My main focus is cultural deafness, but much of the information presented here should be relevant to working with any deaf patient (see the preface for more on this issue). Although written primarily for psychiatrists, this chapter should also be useful to primary care physicians and other mental health professionals. The first half provides essential background from the fields of linguistics, education, and ethnography. These non-medical sciences have much to say about deafness. The second half is clinical, covering common presenting syndromes and situations, and practical aspects of clinical work. I conclude with a list of suggested readings. Deaf people can and do suffer from the same mental illnesses as hearing people. A psychiatrist for deaf people starts with the usual everyday psychiatric skills. Some specialized knowledge is needed, too, but the most important additional requirement in my opinion is cultivating an attitude of curiosity, humility, and respect toward deaf people. The search for cross-cultural competence never ends. Although reading this chapter will not by itself make the reader competent to treat deaf patients, I hope that it may serve as a step along the way. MY BIASES By this point, I imagine the reader sighing, “This chapter is just chock full of opinion.” You’re right. I am not sure that I can write neutrally about deafness. I know too much from personal experience and have seen too much professionally to stay pleasantly objective, above the fray. I’d like to think that my biases are the products of a dispassionate reading of the available literature and a scientific level of observation … but that being unlikely, I should disclose my more fervent opinions at the outset. Foremost, I believe that every deaf child has the right to a fluent first language. This seems to me a human right on the order of the right to walk; the unfolding of language capacity is our species’ birthright. When professionals (teachers, audiologists, physicians) or parents overzealously pursue teaching spoken language to a child who is not succeeding

2.

PSYCHIATRIC CARE

37

in learning it, they place her language fluency at risk. Often they do this from simple ignorance of language deprivation—after all, almost no advocate of “oral” methods, “inclusion” of deaf children in hearing classrooms, or cochlear implantation knows how to sign. Unable to appreciate either its particular beauty or its normalcy as a true language, they can all too easily see deaf children as Ted Hughes did, through a monolingual lens. Or perhaps they misunderstand how language is acquired, assuming that depriving the child of sign, which she takes to like a seal to water, will “force” her to use English. In fact, as I discuss below, linguistic research suggests precisely the opposite: Learning a first language apparently enhances the learning of others. The view that “it’s a hearing world,” which places integrating the child with hearing people above ensuring language fluency seems untenable to me, and at times barbaric. It’s a deaf world too, and always has been. We don’t focus the education of blind children on landscape painting and “looking skills,” or encourage them to give up their canes. We don’t mock motor-disabled children as “ambulatory failures.” Yet residential schools for the deaf are filled with the “oral failures” who did not develop the “listening skills” their parents’ and teachers’ had hoped for, and are left with permanently damaged language ability. Can one make it through life without fluent language? “Me Tarzan. You Jane?” My belief that attaining language fluency is more important than which language the child becomes fluent in also leads to concerns about cochlear implantation. I accept the cochlear implantation of consenting deaf teenagers and adults as a valid and reasonable procedure. Most of the deaf people who seek implantation were late-deafened, and already primary users of English. For them, the implant restores something they had lost. However, I think that the implantation of young children, particularly when combined with inadequate rehabilitation or instructions not to use sign language, creates an under-appreciated and enormous risk of language deprivation. I see cochlear implantation in some ways as a cosmetic surgery, based on the belief that one language is more beautiful or important than another. I wish that cochlear implant teams took responsibility, not simply for a child’s hearing level, but for her entire eventual attainment of language. I’d measure her progress in both English and sign (if she still had exposure to sign after the surgery), and consider the implant successful, or at least not harmful, to the extent that she attained fluency in either language. If the speech and hearing rehabilitation required by the implant started to cause her overall language to fall behind normal, then I’d declare the implant a failure, even if it has incrementally increased her “sound awareness” or her spoken language. Seeing delayed language development as a medical emergency, the way we would see delayed motor development, I’d then have the fluency-focused implant team turn its energies to encouraging the parents to sign.

38

GULATI

One day there will be a perfect cochlear implant, and deaf children will simply be made hearing. Perhaps before that time, the identification and abortion or genetic treatment of genetically deaf children will already have eradicated cultural deafness. (The first such abortion has already taken place.) The view of culturally deaf adults, that being deaf is a perfectly valid way to be human and doesn’t need to be “fixed,” will have been washed aside with the languages, beliefs, and practices of several thousand other indigenous cultures. Deaf people’s love of their beautiful language will have been steamrollered by hearing people’s love of theirs. I have nothing against cochlear implantation per se, or against surgeons, engineers. My family is packed with both. I’m not a Luddite. But I believe that other areas of science besides medicine—linguistics, anthropology, and psychology—have something to say on these issues, and the history of hearing people’s treatment of deaf people should not be ignored or forgotten as new technologies appear. But what of the difficulties that minority language users face? From the culturally Deaf perspective, deaf people face inequality and prejudice like any other minority group. But members of a minority group have a culture, a language, and essentially normal lives. Language-damaged people have none of these things. I acknowledge the issues of identity and belonging that the Deaf community raises when advocating sign language and Deaf culture for every deaf child. Deaf children absorb sign language like sponges, and do indeed seem natural and comfortable with their deafness. But I personally feel greater concern with fluency itself than with whether the child uses signed or spoken language. I cannot choose between the beauty of the words of Robert Hass, my favorite hearing poet, and the signs of Clayton Valli, my favorite Deaf one. Some deaf children, perhaps because they have enough residual hearing, had a period of normal hearing before becoming deaf, were fitted with a cochlear implant that worked for them, or just have good brains for language, do acquire fluent spoken language. If they then grow into adults comfortable with an identity as “hearing impaired” I cannot question their success. I have several such people as friends. They speak with what others take to be a foreign accent and are experts at managing spoken communication in various settings. They consider themselves to be well-adjusted to a disability, and are happy that they share their parents’ language and culture. But not every deaf child can duplicate this type of success. A final bias, on the issue of disability: A paraplegic anthropologist wrote, “disability is defined by society and given meaning by culture; it is a social malady” (Murphy, 1990). Normal is a slippery concept that doesn’t hold up well under scrutiny. I feel more normal now, with a 100dB hearing loss and immersed in sign language than I did 20 years ago struggling to hear college lecturers. At that time I had a 20dB hearing loss that was officially in the range of “normal.” A blind man climbs Mount Everest. Most sighted people do not have his strength, skill, or judgement, but the reductive concept of nor-

2.

PSYCHIATRIC CARE

39

mal suggests that somehow, simply because they are sighted, they could (Greenfield, 2001). Despite moments when I have strongly experienced a feeling of loss, my “disability” has not been a negative experience for me overall, just as Borges’ and Hull’s blindness was not for them. Disability can make us alive to reality, unable to take things for granted as “normal” people do. See for example Robert Murphy’s The Body Silent (Murphy, 1990), Jonathan Hull’s aforementioned Touching the Rock (Hull, 1990), and Rachel Remen’s essays, such as “The Container,” (Remen, 1996). A colleague and mentor, Ray Stevens of the American School for the Deaf, brings some clarity to this issue: My simple definition of a handicap is a condition that prevents you from doing something you want to do … Helen Keller was able to do what she wanted to do; she simply did those things in ways different from the ways most other people would have done them. She lived a more complete life than many of us who were born without so-called handicaps. A great many deaf people have demonstrated beyond doubt that deafness is not a handicap. By discarding the handicap label and assuming a minority cultural status, they have redefined themselves as competent members of a minority group and not as incompetent members of a majority group … Americans who have all five senses, paying bills on a Buick and foolishly spending money on wasted nights in bars and days at the race track are viewed as normal. On the other hand, being deaf or blind or both, riding in a wheelchair, or missing a limb automatically defines one as being handicapped. All of us are handicapped and successful to one degree or another. (Stevens, 1992)

LANGUAGE ACQUISITION AND LANGUAGE DEPRIVATION A Few Facts About Sign Languages American Sign Language arose in the 19th century as a creole, a language made from others, between the French Sign Language imported by Laurent Clerc and Thomas Gallaudet and indigenous American signing, particularly that used by both deaf and hearing people on Martha’s Vineyard. The history of this island confounds modern stereotypes about deaf people’s place in society (Groce, 1985). The English settlers had brought with them a recessive gene for deafness, and possibly an indigenous sign language. Because of intermarriage on the isolated island, nearly a quarter of the population of several towns eventually were deaf. Everyone signed. Deaf and hearing people alike, for example, signed between fishing boats, because signing is visible farther than shouting is audible.3 Some deaf students left the island for their education at the newly formed American School for the Deaf, returning home as both the most highly educated and the most cosmopolitan members of their community. The community was so thoroughly bilingual that it was 3 Modern surf kayakers, divers, and pilots also use visual communication. In Africa, highly developed visual communication systems have been found among hunters.

40

GULATI

difficult for the last surviving members of the community even to recall who was deaf and who hearing (Sacks, 1991). Thus, a social convention—bilingualism—made a “handicap” disappear. (Before the reader dismisses bilingualism as an impractical solution to deafness, consider that the large majority of the world’s population is fluent in two or more spoken languages. In the United States, monolingualism might carry special significance as a symbol of cultural assimilation.) After English, Spanish, and Italian, ASL is the fourth most widely used language in the United States. ASL shares various grammatical features with Navaho, Japanese, Thai, and Hungarian (Siple, 1997), but almost none with English. One ASL sentence structure, for example, places the time sense at the beginning of the sentence, followed by the subject, object, and finally the verb. Signs are subject to far more modification than English words, giving the language a completely different, dynamic and dramatic, texture. The recognition that sign languages are in fact languages began in 1960 with the work of the linguist William Stokoe, work so revolutionary that he was initially ridiculed even at Gallaudet University where he worked. Stokoe demonstrated that ASL has a visual phonology, which is an arbitrary set of acceptable hand shapes that parallels a spoken language’s phonology, or arbitrary set of acceptable sounds. Every sign language also has a spatial grammar (Emmorey & Reilly, 1995), a way of using the signing space to create meaning. In ASL, for example, one can place pronouns at different locations in space. A class of verbs such as GIVE then move from one location to another, indicating in this case who gave to whom. (Following the usual convention, the capitalized word GIVE is a “gloss,” or rough English equivalents of the ASL sign.) Forty years of intensive linguistic study have revealed extraordinary depths to how sign languages create and communicate meaning. All naturally occurring languages, signed or spoken, are equal in expressive power and rate of data transmission (Klima & Bellugi, 1979). All appear to conform to the rules of a “universal grammar” proposed by MIT linguist Noam Chomsky (Lillo-Martin, 1997). Spoken language is essentially a linear stream of sounds; ignoring inflections and accompanying gesture, not an entirely fair procedure (McNeill, 1992)—spoken language is one dimensional. Sign languages, by contrast, employ two hands, facial expression, and body movements—they are multidimensional. Yet the brain seems indifferent to these differences. Deaf people do not only talk in sign language. They dream in it, think in it, and even hallucinate in it. Sign Language Acquisition All children who have had adequate exposure to any of the world’s natural languages, spoken or signed, show similar linguistic milestones. Signing deaf children babble with their hands (Bonvillian & Siedlicki, 1996; Petitto & Marenette, 1991). Like hearing children, who make some sounds more easily and often than others—“goo goo ga ga”—deaf babies have preferred

2.

PSYCHIATRIC CARE

41

visual phonemes such as the handshape used in the signs MOTHER and FATHER (Siedlicki & Bonvillian, 1997) or the one used in MILK. For a period of time, young deaf children confuse “I” and “my,” just as hearing children do. Tenses, plurals, and basic sentence structures appear in a predictable order, at predictable ages, as do errors such as “she catched,” which temporarily replaces “she caught” when the child suddenly grasps the past-tense rule, and overgeneralizes it. There is one slight difference between the early development of signed and spoken language: sign language can appear a few months sooner (Folven & Bonvillian, 1991). My own daughter imitated the “I love you” hand-shape at 4 months of age, made her first meaningful sign (“LIGHT ON”) at 6 months, and began to communicate in earnest at 10 months, all before she had spoken a single word. (The first spoken word usually appears between 11 and 14 months.) Linguists speculate that sign acquisition precedes spoken language acquisition because it is easier for infants to articulate the hands than their vocal tracts and because signing parents can help them to form the hand shapes. Deaf or hearing, signed or spoken, an extraordinary amount of language acquisition normally takes place in a baby’s first days and months (Morford & Mayberry, 2000). Hearing children exposed to sign languages, of course, learn them equally fast, and there is evidence that they then show accelerated spoken language development. Think how curious this is: Learning sign, despite its grammatical dissimilarity to English, somehow enhances the acquisition of English. A linguist might say that the sign language “turned on” Chomsky’s “Language Acquisition Device,” which was then primed to learn other languages sooner. (The voice of opinion, which has kept quiet for a few pages, can now ask: What does this fact suggest about the strategy of the oralist or cochlear implanter who forbids ASL, hoping to force the child to use English? And the cynical Deaf person can note that in the United States competitive hearing parents are busily teaching sign language to their hearing children to enhance their English while deaf children are being deprived of it to enhance theirs.) Where do sign languages come from? This question was answered in dramatic fashion in Nicaragua, when researchers observed the birth of Idioma de Signos Nicaragense (ISN) a brand new human language. In the 1970s, deaf children from around the country had their first opportunity to interact with one another at a pair of newly established schools for the deaf. Each deaf child arrived with unique “home signs,” meaningful but idiosyncratic gestures that develop spontaneously in any isolated deaf child’s home. In the new schools, the children shared and standardized their homesigns, creating an ungrammatical pidgin form of communication. The next step was entirely unexpected: The youngest children exposed to the pidgin spontaneously created a new, regularized, true grammar, with tenses, plurals, conjugations, rules for question formation—the features of every known human language (Osborne, 1999). Finally, other students

42

GULATI

were able to learn the new language from the youngest ones, succeeding better the younger they were. Teenage students learned disconnected words and phrases, but never mastered the new grammar. Noam Chomsky ignited a linguistic revolution with the observation that children normally deduce grammatical rules from too little input, implying that they are born with some hard-wired, a priori knowledge of language. The creation of ISN supports his theory: When the input lacks grammar, children will create a perfectly sound grammar of their own—a capacity that adults lose (Pinker, 1994). This example illustrates all the important linguistic concepts required to understand deaf children: the importance of truly grammatical language, the special significance of having a native language, and the existence of a critical period within which that native language must be acquired.4 Isolated deaf children create home signs. Hearing twins have long been known to create home signs. A family of five deaf children once had a rich signed system, but no one knows if it was a language (Rée, 1999). No one knows the minimum number of children who must be involved to create a new human language. The Critical Period Nine of 10 deaf children are born to hearing parents. Until recently, most were first diagnosed between 18 and 24 months of age, because they hadn’t begun to speak. (The average age of diagnosis has fallen as a result of newborn screening programs and greater awareness among pediatricians.) Many parents report suspecting that their child was deaf as early as 6 or 9 months of age, but being unable to obtain audiologic confirmation for a year or more. Deaf children often pass hearing tests by reading the facial expressions and expectations of those around them. (I recall raising my hand when the other children did, despite the silence in my headphones.) A common tale is that “the pediatrician banged something behind his head, and he turned, so we thought he was fine.” Thus, most deaf and hard of hearing children begin life with some degree of language deprivation. It is easy to assume that because young children’s drive to acquire language is so strong, they will rapidly catch up in their language development once they have access to usable language. (By “usable” language, I mean a language in which the child demonstrates a normal rate of language acquisition. This might be sign language, a spoken language heard for the first time through newly fitted hearing aids, or an ar4 Furthermore, ISN shared features such as facial grammar and spatial grammar with all other known natural sign languages, suggesting that there is also visual-spatial universal grammar—a way in which the brain is naturally fitted to visual language. This accords well with deaf people’s feeling that sign languages are more “natural” than artificial sign systems, which is discussed further on.

2.

PSYCHIATRIC CARE

43

tificial system such as Cued Speech or Signed English.) And, in fact, children exposed early to rich usable language environments can do quite well, learning more than a year’s worth of language in each of their early years. However, linguistic research has identified a “critical period” within which children must be exposed to a usable language if they are to learn it fluently (Lenneberg, 1967). The grammar of deaf adults who learned ASL in late childhood in one study was four standard deviations below the mean. Those who had first exposure in adolescence were six standard deviations below the mean (Mayberry & Eichen, 1991). Adults with more than 30 years of experience with ASL still show variable mastery dependent on their age of first exposure (Newport, 1990). Opinions among linguists on when the critical period ends vary from age 5 (Newport, 1991) to 9. Anecdotal evidence from teachers and clinicians who work with deaf children suggests that the window may begin to close as early as age 3. Deaf people can often accurately judge when another deaf person was first exposed to sign language. Within the Deaf community, first language exposure after about age 6 is generally considered to result in nonfluent ASL. The multidisciplinary team with whom I work at Children’s Hospital, Boston, becomes very concerned about the future language development of a child who has little or no language by 4 years of age. It seems reasonable to imagine that the critical period varies from child to child and that it does not have absolute boundaries. This might explain the great difficulty of predicting a child’s eventual language success based on the degree of hearing alone. Language Deprivation The existence of the critical period implies the greatest single developmental risk to deaf children: Those with first exposure to usable language after very early childhood develop permanent cognitive damage and permanent language deficits. Almost all emotional and social development, and almost all vocational and academic success depends on language. This is the reason for my obsession with language fluency: Deaf people with profound language deprivation present with functional mental retardation, “senseless and incapable of reason” as Aristotle put it (Gannon, 1991). Those with milder language deprivation still show global defects in their functioning. In the early 1970s researcher Susan Gregory interviewed the hearing parents of 122 young deaf British children. Eighteen years later, with new colleagues, she reinterviewed most of the original sample, this time including the grown children. She and her colleagues published the results in a pair of books that I shall refer to together as the ‘British study’ (Gregory, 1995; Gregory et al., 1995), and from which the unattributed quotes in the following sections derive. The British study provides perhaps the most comprehensive view of deaf people’s lives that is available.

44

GULATI

When the study began “communication was seen by professionals, and consequently parents, as synonymous with speech … none of the parents were even thinking about signing with their children, let alone actually doing it.” In some schools teachers forbade or punished signing. But, as was typical of oral programs, they tolerated serious academic delays: “the deaf children just [sat] there, sort of nodding and … not really learning anything.” The language results of the British study were referred to earlier, but are important enough to deserve repeating: one in six orally raised children, with no evident brain damage, had profound language deprivation. That is, despite years of focused education, they had acquired almost no language, spoken or signed. A mother described her 22-year-old son: “He can’t really sign … but he loves his tummy. If he wants a biscuit or anything like that he’ll do it (rub his stomach) or if he wants to go for a walk he’ll (points at door).” Despite careful attempts to match their language skills and to rephrase questions, an additional one half of the sample were unable to answer simple questions about their own lives. Only a third were able to communicate with the researchers without difficulty. These results vividly illustrate both the failure of oralism as a general educational technique for profoundly deaf children and the permanent damage that can result from its inappropriate use. Most of the children in the British study sought out sign language as they got older. Like the Nicaraguan teenagers and like the wild boy of Aveyron, their ability to acquire it fluently was hampered by their lack of a fluent first language. I prefer the term language deprivation to language delay, which suggests, erroneously, that the child will necessarily catch up, or communication disorder, because it places responsibility for the child’s language problem where it lies: with the depriving environment. Despite its severe consequences for individual functioning, the DSM-IV has no formal category for language deprivation. The category of Mixed Expressive and Receptive Language Disorder (315.31) requires that the language disorder be in excess of that which would be created by environmental deprivation. That leaves only the diagnosis of Communication Disorder Not Otherwise Specified (307.9), which I use regularly in my clinical work, along with a description of the nature of the patient’s early language experience. The risk of language deprivation is well known in the Deaf community but is rarely appreciated by hearing people. People without language can’t explain what they’re missing, or fight for better treatment. People with language can’t explain how they got it, and have little appreciation for how complex their achievement is. “We tend to assume that our linguistic knowledge must be very simple, because its acquisition cost us no pains” (Rée, 1999). Consider, for example, the extraordinary difficulty that computer programmers have had teaching computers the relatively simple linguistic task of transcribing speech.

2.

PSYCHIATRIC CARE

45

Sign Language and the Brain By the age of 1, children are more readily able to perceive sounds from the spoken language(s) around them than those of foreign languages. Late language learners become unable to perceive or reproduce subtle differences, and therefore speak with foreign accents (Mayberry & Fischer, 1989; Neville et al., 1997). (Late learners of sign language also have “foreign accents.”) A recent functional MRI study shows that late learners of ASL completely fail to activate the right angular gyrus (Newman et al., 2002). In other words, children exposed to sign language early have different brains than those exposed later. The bulk of natively acquired language, signed or spoken, is stored in the left hemisphere, but sign languages also make some use the right hemisphere: Early learners of sign language who sustain left hemisphere damage can lose the use of space for the grammatical purposes of sign, but retain it for nonlanguage functions such as describing the locations of objects in a room. Right-hemisphere damage can cause the opposite effect (Emmorey, Corina, & Bellugi, 1995; Poizner, Klima, & Bellugi, 1990). The acquisition of a fluent first language appears to be essential to the capacity to learn a second language. Thus, a group of school-aged children whose deaf parents had provided them early exposure to ASL showed English abilities almost equal to those of hearing children, whereas a group with late ASL exposure but intensive English exposure had worse English (Lock, 1996). This finding is in good agreement with 30 year old research that suggested that the deaf children of illiterate but signing deaf parents had better English than those of well-educated hearing parents who attended oral schools where sign language was not permitted. When it first appeared, this research was poorly received by many hearing parents and oral educators, who could not accept that Deaf parents might have any advantage in raising deaf children. Language and Thought Historically, it required two millennia to distinguish thought from speech. The leap from the general recognition that deaf people used gestures meaningfully to the realization that their gestural systems were in fact languages required two more centuries. A further century was required to show that most deaf children could not be forced to acquire spoken language fluently, even with a relentless focus on speech drills and English lessons. These are hard issues to get one’s mind around. The nature of the problem itself contributes immensely to the difficulty of understanding it; hearing and deaf people, unable to communicate with one another, rarely have the opportunity to share their knowledge and experiences. What is the link between language and thought? Why should language deprivation cause cognitive deficits? Why don’t language-deprived deaf

46

GULATI

people excel at nonverbal intellectual tasks? I have never seen a convincing explanation of this phenomenon. It has been demonstrated that the brain does not think in language, but uses some sort of internal code of its own (Pinker, 1994). See also Jackendoff, 1992 and Nelson, 1996. Apparently the development of this internal thinking language, or mentalese, depends on exposure to a grammatical language. One candidate for the missing link between language and thought is Berkeley linguist George Lakoff’s expanded concept of metaphor. Lakoff points out that we seem unable to think without using metaphor. He provides lists of common metaphors. For example, we conceive of thinking itself in visual terms (“I see”), physical terms (“I get it”), digestive terms (“I ruminated”), and so on. His list is exhaustive—by the end of it, it’s clear that we don’t have any nonmetaphorical way to think about thinking, or perhaps to think about anything (Lakoff & Johnson, 1999). What’s up when the temperature goes up? The simple word up in this context carries a highly sophisticated concept of a number line. Perhaps language promotes metaphor, which is abstract, which promotes more abstract language, in an ongoing interplay that links abstract thinking to language capacity. News from linguistics and cognitive sciences travels slowly. In a recent popular book about philosophy, the urbane professor Francis Savater, writing about life without language, returns to the famous and half-mythical wild boy of Aveyron to find a case of a human deprived of language, so that he can consider its relation to thought. He needn’t have traveled so far. The “forbidden experiment” (Shattuck, 1980) of human language deprivation has been performed repeatedly in deaf people, and its awful results are already known. EDUCATING DEAF CHILDREN Pity the Parents The issue of how best to educate deaf children has been fraught with controversy for 300 years. One possible reason is the unstated and untested assumption that there is a single “best” technique. Another is the difficult question of how much language a given child already had when he became deaf. It has only recently been recognized that almost all language is learned very early in life. The tradition of considering children who become deaf before age 3 in the same “prelingually deaf” category as those who were born deaf has created massive confusion. In fact, a 3-year-old has already acquired 90% of her language’s grammar. Her language will continue to grow in vocabulary and complexity for another decade and more, but the really important machinery is already in place. Such a child becomes deaf, and then responds superbly to oral interventions, becoming a fluent user of English. Of course—she already knew the language. But she, her parents, and her teachers pride themselves on her accomplishment, and tell other

2.

PSYCHIATRIC CARE

47

parents. “See, she did it, so your deaf child can too!” Most children born deaf could never duplicate her accomplishment. Cases in point include newspaper reporter Henry Kisor (Kisor, 1990), author David Wright (Wright, 1969), and even Helen Keller, who likely already had the concept of water when Annie Sullivan spelled it into her hand, having heard normally as an infant, before illness made her deaf and blind. The notion that “one size fits all” has done inestimable damage in the debates about educating deaf children. Not only do children become deaf at different ages and to varying degrees, but they may also have inborn differences in their ability to acquire language based on limited input. One severely hard-of-hearing child wears hearing aids and becomes a fluent English user, “passing” for hearing her entire life. Another, with an identical audiogram, can make no sense of spoken language. Fingers point: The parents didn’t drill hard enough, the teachers were lazy, this or that special school should have been tried instead. But the possibility of a difference in the children’s aptitude is rarely considered. This issue arises again with cochlear implantation. One child hears “Daffy Duck on helium” (as a friend with an implant describes the sound) and learns English. Another does not. Cochlear implant outcome studies are notorious for the variability of their results. The hearing parents of deaf children are in an almost unbearably difficult position. At the same time that they are noticing their child is deaf, making efforts to confirm it, finally learning the diagnosis, and then beginning to worry and grieve, they must deal with ticking clock of their child’s language needs and the contradictory advice of the advocates of various educational approaches. Discover your child is deaf. Follow the suggestions of audiologist, pediatrician, and otologist—have her fitted with hearing aids, or try a cochlear implant and oral schooling. Perhaps she does well. But perhaps after a few years she hasn’t developed adequate language. She becomes demoralized, and develops behavior problems. You’re ready to “give up and try sign language.” Transferred to a school for the deaf, she struggles to make sense of the new language. She will never become completely fluent in English or sign. After high school she attends a 2-year intensive remedial program in English, and makes modest progress. She never makes it to a 4-year college. You did the best you could, and followed the advice of the “experts.” No one mentioned that this approach might harm your child—you only wanted her to speak and lip-read. On the other hand, discover your child is deaf. Meet an early intervention specialist who recommends sign language. Attend classes and learn to sign to the best of your ability. Send the child to a deaf school. Your child now has a fluent first language, and is working on English through reading and writing—but the family situation is hardly perfect. His school is far away, and he is exhausted from the hours spent on a bus. He has no friends in his neighborhood. His grandparents can’t sign, but he wants to communicate with them.

48

GULATI

He begins to sign faster than anyone hearing can keep up with. Eventually he becomes closer to deaf friends and adults than he is to you. You feel you have lost him to an alien culture. Deep inside, although you always signed with him, you still wish he had developed better speech. Ideally, perhaps, a complete spectrum of educational choices would be available for every child. Independent testing at regular intervals would measure the child’s progress in language acquisition (signed and spoken), academic achievement, and social/emotional development. The child’s parents would be given considerable information and support as they evaluated programs and made educational choices. They would meet the graduates of each type of education, and to talk with their parents. They would be counseled if needed around the grief and confusion of having a “different” child, the family issues raised by deafness, and the fact that almost no outcome feels perfect to the hearing parents of a deaf child. The present state of affairs is nowhere near the ideal. Parents are bombarded with contradictory advice (Ritter-Brinton & Stewart, 1992) and rarely helped to understand their children’s needs and potential (Mann & Solange, 1989). Language testing, which should be the gold standard for whether a program is effective for a given child, does occur triennially as required by special education law, but is rarely performed by adequately skilled or independent evaluators. And even when it is, a child can lose a lot of ground in 3 years. Despite the federal requirement for “free and appropriate” education and for individualized educational planning, the options available for a given child are usually constrained by the available expertise and reigning philosophy of the local school district. One town or county mainstreams deaf children in the local school with a sign language interpreter. The next town over uses “Total Communication.” A third pushes “Cued Speech” and discourages sign. A quarter of the parents in one study received no information about educational options, and half were apparently told of only one (Bernstein & Martin, 1992). Almost every day parents tell me, “If only we’d known what was going on practically next door, things might have been so much better for our child.” Parents who do educate themselves and decide they do not want what they have been offered must fight their local educational system. This is time consuming, and requires taking an adversarial stance against the child’s teachers and school, a task few parents relish. Sometimes parents simply move the entire family in order to meet the needs of one child. The Learning Center for Deaf Children, for example, has attracted numerous parents to the Framingham, Massachusetts, area, seeking bilingual–bicultural schooling for their deaf children. Over time, of course, this places an unfair burden on the communities that support good programs. A year of deaf education, no matter what the approach, costs tens of thousands of dollars. A year in a therapeutic residential program can cost $200,000.

2.

PSYCHIATRIC CARE

49

The Education Wars: Oral Versus Manual Communication The sign language-based educational method of the Abbé de L’Epée worked well. His graduates toured Europe, where audiences quizzed them on philosophical and religious issues, and marveled at their abstract reasoning and knowledge. Deaf people had not previously been known to have such potential. One graduate became a celebrity when he regained his aristocratic title and inheritance by testifying in court through an interpreter. This represented a major victory for the legal rights of the deaf. At the beginning of the 19th century, another graduate, Laurent Clerc, and a young hearing American, Thomas Hopkins Gallaudet, brought the sign language method to America. Gallaudet had been asked by a Hartford, Connecticut surgeon to find a method to educate his deaf daughter, Alice Cogswell. In 1817 they founded the American School for the Deaf, now located in West Hartford, Connecticut. (In front of the school stands a statue labeled “friend and benefactor,” showing Gallaudet teaching young Alice her name.) The signing method spread rapidly through the United States. Deaf children acquired sign language and met peers and deaf adult role models in centralized residential schools. They learned trades, and after graduating had high employment rates. Many culturally deaf people see the mid-19th century as their golden age. De L’Epée’s method had competitors throughout Europe, where there had already been two centuries of attempts to teach deaf children speech and lip-reading. Almost immediately, tensions developed between advocates of the two approaches. The “manualists” won a significant victory when a Swiss panel declared the signing method superior. Oralists fought back, winning a far more wide-reaching victory: In 1880, in Milan, a conference of overwhelmingly oralist educators proclaimed that sign languages should be banned from schools for the deaf. Edward Miner Gallaudet, Thomas’ son and the founder of Gallaudet University, was one of only a handful of signers present, and one of the few Americans, although the United States was educating far more deaf children at that time than Europe. Not one deaf person was present, either to serve as an example or to voice an opinion (Rée, 1999).5 For nearly a century thereafter, oralism dominated in both Europe and America. The deaf schools fired their deaf teachers and staff. Oralist teachers began to forbid and often to punish the use of sign language (Baynton, 1996). Employment rates fell. Prominent oralists such as Alex5 Philosopher and historian Michael Rée documented two fascinating trends in the history of deaf education in Europe. First, most teachers, including de L’Epée, were motivated by the desire to instruct deaf children in religion. Second, countering the view of gestures as uncouth and animal-like, there was a romantic view of sign languages that saw them as more universal and natural than spoken languages, and as exotic. He also noted that at the conference in Milan there was an element of ethnic bias, in which signing was compared with the supposedly vulgar gestures of Italians.

50

GULATI

ander Graham Bell promoted eugenics, fearing the formation of a “deaf variety of the human race” should deaf people marry and procreate. (Bell’s father had developed a precursor to modern Cued Speech. Bell’s mother and wife were hard of hearing; his invention of the telephone was the byproduct of an attempt to invent a hearing aid.) ASL survived the early 20th century in the hallways and dormitory rooms of residential schools, and in multigenerational deaf families. In countries without a history of education through sign language, such as Germany, any native signing essentially disappeared. (A friend, interested in becoming a sign language interpreter in Germany, reported that she could find classes only in American Sign Language.) Oralism lost prominence in the 1970s due to: (a) the gradual recognition of its inability to provide understandable speech or reasonable academic achievement to the average deaf child; (b) the recognition of sign languages as true languages rather than simply gestural systems; and (c) the rise of the Deaf rights movement, which argued that depriving deaf children of language they could use was improper and cruel (Berent, 1996a; Berent, 1996b; Geers & Schick, 1988; Gregory, 1995; Gregory et al., 1995; Gregory & Hindley, 1996; Schlesinger, 1988). An acquaintance of mine in her late 50s, the daughter of deaf parents and graduate of a famous oral school, tells of her teachers sneaking into the dorms to learn sign language from their students. She taught her peers, and they used sign language whenever adults were not present. “They said the school was oral,” she says. “They were supposed to make mouth movements to tell us everything, but we knew to watch for the little gestures that would give it all away. They’d twitch their eyebrows or point with their eyes—I don’t know if they knew they were doing this. But that’s how we’d know the right answer” (Anonymous, 2000, personal communication). Many deaf people have bitter memories of oralism, particularly the enforced speech drills that replaced large chunks of the academic curriculum, the physical punishments ranging from being hit to wearing a dunce cap, the difficulty of communicating with oral peers, and the constant sense of being expected to succeed at something that was nearly impossible to do. Others are more positive, thankful for the focus on English and appreciative of the enormous efforts the teachers took on their behalf. Oralism failed as a general philosophy for the education of deaf students, but it certainly did not fail every student. The difficulty of teaching a profoundly deaf child a first language through oral methods is easily imagined: Turn down the television volume, or imagine yourself trying to learn to hear and speak a foreign language by observing a class through a one-way mirror. You have an advantage over the deaf child, in that you already know what language is so you have some idea what it is you’re trying to learn. I have nothing against oralism when it succeeds for a given child. Pure oralism is a viable method for teaching many children with moderate to se-

2.

PSYCHIATRIC CARE

51

vere hearing losses, or the occasional child with profound deafness, especially if late-deafened, and some children with cochlear implants (those whose language is developing on schedule). Although modern oralists have, for the most part, absorbed the lessons of the past, children in oral programs are still sometimes allowed to fall years behind in language and academics before the program acknowledges failure. (See, for example Nicholas, Geers, & Kozak, 1994). This is a matter of values. Oralists prefer a speaking child, even a badly speaking one, to a signing one, even a fluently signing one. Nothing in deafness is absolute. Occasional profoundly and prelingually deaf children do well with an oral approach. At the very beginning of the “oral–manual” debate, for example, the primary deaf advocate of oralism was a congenitally deaf man, whereas the primary deaf advocate of sign language was a late-deafened one (Rée, 1999). Total Communication Deaf children as young as 12 or 13 months have learned to use a sign that represents a relevant object … after a single exposure to it. Through lip reading and audition, a thousand repetitions might be necessary to learn the same word, and (still) the child might not be able to express it orally. (Davis, 1991)

The oralists were hampered in teaching lip-reading by the fact that less than half of speech is understandable through lip-reading.6 They were hampered in teaching speech by the extreme precision of spoken language, in which millisecond differences make crucial distinctions, for example between the letters p and b. They were hampered in teaching reading and writing by the intimate connection between speech and literacy. As oralism lost ground, educators sought to teach English by combining it with visible gesture. Cued Speech is a hybrid of oral and visual communication, in which a small set of hand gestures removes all ambiguity lip-reading. Like signing deaf people, those using “cue” require an interpreter, but their parents do not need to learn sign language; instead, they cue while speaking English. Other systems used signs, often borrowed from ASL, for English words, presented in English word order, with artificial endings to represent English parts of speech such as “-ing” or “-ed.” These methods are known collectively as Manually Coded English (MCE). The philosophy of Total Communication, developed in the 1970s, originally meant using any communicative mode that worked (e.g., ASL at some times and English at others). E.M. Gallaudet himself had suggested the 6

Contrary to the popular conception, deaf people have been found to be little better at lip-reading than hearing people (Campbell, 1997). The best lip-readers are likely to be late-deafened people, who can use their prior knowledge of spoken language to make better guesses while lip-reading.

52

GULATI

“combined approach” or “mixed method” as a compromise idea at the famous Milan conference where sign was outlawed. In practice, Total Communication has come to mean signing in an MCE while speaking. In the United States and Great Britain, total communication has been the de facto educational experience of many deaf children since the 1970s, and studies clearly show its superiority to the oral approach for most profoundly deaf children , (Goppold, 1988; Prinz et al., 1996; Williams, 1993). MCE may improve English skill over oral methods, but deaf children still show severe spoken-language grammar and vocabulary deficits relative to hearing peers (Geers & Schick, 1988). Mapping a linear spoken language into space is difficult and slow. Young children automatically streamline MCE into more natural forms (Gee & Mounty, 1991; Supalla, 1991). Very few deaf adults actually use an MCE to communicate. Even hearing teachers trained to use MCE rarely use it with absolute consistency. The reason for this is simple—ASL, like all other signed languages, is as efficient as spoken language in communicating ideas (the amount of information transmitted per unit time scarcely varies from language to language worldwide). MCEs are about half as fast, thus halving the amount one can say or understand in a given period of time. Furthermore, MCEs rely on artificial gestural elements to represent English grammatical features (“-ing” and “-ed,” for example). These elements often use difficult handshapes that young children cannot easily master. (Late deafened adults, however, can find it very useful.) Signed or spoken, the concept of mapping one language onto another is dubious (Mayberry, 1992). Linguist Ray Jackendoff wrote “to get a sense of what Manual English might feel like to an ASL speaker, imagine ‘Spoken Exact German,’ in which English words are used in German word order and with German inflections … In this language, “The man didn’t give the book to the woman” would be rendered something like “The-masculinenominative man has the-feminine-dative woman the-neuter-accusative book not given” (Jackendoff, 1994). The inventors of the various MCEs, which are given names that generate cute acronyms like SEE and LUV, seem never to have considered whether such language grafting made linguistic sense. An English construction like “Have you been running …” uses the verbs have and be as auxiliaries. ASL has no generic sign for being, and the ASL sign have means to possess—it is not used as an auxiliary. ASL distinguishes between running a business, running, a runny nose, and a run in a stocking, while English does not. It is entirely unclear that children can learn English verb auxiliaries and other idiosyncrasies through unrelated ASL signs. Often, when using an MCE, teachers whose first language is spoken will speak clearly but fail to adequately accompany their speech with signs. Children without good input of either language do not enjoy school, and fall academically and linguistically behind.

2.

53

PSYCHIATRIC CARE

Case Example The author observed a class taught by a talented Deaf teacher who had good speech skills. The children’s IEP specified Total Communication, at the request of the parents of three students in the class. The teacher signed while speaking in English, laboriously but accurately. A dozen times during the hour, however, the children misunderstood her—they were following the sign and ignoring her lips, and got confused when an ASL word was used in an English way. One student became terrified when he misunderstood a discussion of World War II, thinking a new war had broken out in Europe. The teacher patiently stopped and corrected the errors. Immediately after class, the teacher took a break outside. The students voluntarily followed, and struck up a far richer ASL conversation about the war. They learned and shared more in this informal 10 minutes than they had in the previous hour. Their comfort in ASL and in seeing themselves as Deaf like their teacher was obvious in their brightened faces and physical closeness with her. But what to tell the parents, who just want to be sure that their children speak? Bilingual/Bicultural Education In 1975, a Swedish linguist observed that hearing parents of deaf children seemed more anxious than deaf parents. She wondered if the deaf parents might have specific skills that hearing parents could learn. Her observation led to further inquiry that eventually resulted in Sweden’s officially adopting bilingual/bicultural education. After learning fluent Swedish Sign Language (SSL) as their first language, Swedish children learn Swedish beginning at reading age, when it becomes accessible through print (Davies, 1991). Deaf adults in Sweden have a central role in the educational process, teaching SSL to teachers and parents (Mahshie, 1995) and serving as role models for children. Other countries, such as Denmark and Brazil, have also formally adopted this philosophy. Hearing children learn to write by mapping written words onto their nearly complete knowledge of spoken language. Without this prior knowledge, deaf children struggle to make sense of writing. In bilingual programs, the written language is taught as a foreign language through the medium of the fluent sign the child already knows. The teacher, for example, can show the English word for cat along with the ASL sign. Surrounded by peers and teachers who are fluent in a high-quality signed language, children rapidly acquire a fluent first language through which they can make strong academic progress. They are protected against language deprivation. In addition, deaf children can be assured of developing comfort with themselves as deaf, and of having positive experiences with deaf adults, who are hired for throughout the program. Hearing parents of children

54

GULATI

in bilingual programs have the opportunity—as envisioned by the Swedish inventors—of learning from deaf parents. (Some parents at The Learning Center for Deaf Children, a Massachusetts bilingual program featured in chap. 6, have experimented with inviting Deaf adults to live with them temporarily to teach language and the creation of a visual environment). With their children’s school personnel and friends all signing, parents feel supported in learning sign language (and guilty if they don’t) and become much better signers than parents of students in other types of programs. Bilingual programs are appearing gradually throughout the United States (Lee, 1998). However, such programs require greater resources (in particular, a large number of fluent and talented staff), and can require children to be educated residentially or at some distance from home. It is not yet possible to assess their results in terms of teaching English, but it is known that deaf adults who are fluent in ASL have higher levels of English skill than those who are not. The positive effects of ASL, Deaf identity, and Deaf pride in such schools are abundantly clear. Mainstreaming and Inclusion “Going to school was like drowning in ice water,” from (Harvey, 1998). “Immersed in a hearing, English-speaking environment, the deaf child frequently drowns in the mainstream” (Lane, 1995a). “The fact that schools are auditory-verbal environments is underappreciated” (Behrman, Kliegman, & Jenson, 2000).

Educational approaches such as bilingual/bicultural education and Total Communication may have the strongest support from linguistic research, but they require that deaf students be taught by specialized teachers in specialized schools. Public Law 94-142, the Education for All Handicapped Children Act (1975), enacted to end the educational segregation of physically disabled and mentally retarded students, requires education in the “least restrictive” environment. This is usually taken to mean the local school. Approximately three fourths of American deaf children are now mainstreamed, sometimes together with other deaf children in a “collaborative” or “consolidated” program (Schildroth & Hotto, 1994). The philosophy of inclusion has numerous potential benefits for both disabled students and for peers, who might otherwise never have contact with “difference” (Lehr & Brown, 1996). For deaf children, however, the Deaf community has argued that, unable to talk to teachers and peers except through an interpreter, and without deaf role models and peers, the local school is a more restrictive setting than at a school for the deaf. As a

2.

PSYCHIATRIC CARE

55

result, many Deaf parents prefer to send their deaf children to residential schools (Holden-Pitt, 1997). Studies of mainstreamed children have identified severe problems with loneliness, low self-esteem (Mertens, 1989), restriction of extracurricular activities, bullying and misunderstanding by hearing students (Coryell, Holcomb, & Scherer, 1992; Hindley & Bond, 1993), poor quality interpreting, and exhaustion from using an interpreter all day (Urban, 1989). See also Leigh and Stinson, 1991. Mainstreaming places a high burden of surviving the school experience with a “difference” from peers. In my experience, it works best for children who are confident, outgoing, and intelligent. Many of the children in the British study had been teased or bullied by their hearing peers. All those with the poorest self esteem had been bullied in this way, in addition to having had parents who vehemently rejected their deafness and sign language (Gregory, 1995). On the other hand, local public schools keep children close to home and may offer higher academic standards than residential schools, which, may not, for example, have advanced placement classes or gifted-student programs. Students who do succeed at mainstreaming are more likely to attend college. Interestingly, they tend to choose colleges for the deaf rather than to continue being mainstreamed (Kasen, Ouellette, & Cohen, 1990). The parents in the British study expressed a negative overall opinion of mainstreaming, which is known in Great Britain as integration. By the time of the follow-up (after their children had completed their education), “one third … of the families completely disapproved of integration … only 12% … gave their unqualified approval” (Gregory, 1995). Ethnographer Susan Foster noted that “students who use ASL but do not have interpreters in the classroom are naturally at a great disadvantage. Speechreading under ordinary classroom conditions, however, is also fraught with problems. The classic situation is one in which the teacher continues talking while turning away from the lecture.” She also noted that the delay caused by receiving information through an interpreter hampers sign language using students’ ability to participate in group discussions and to answer teachers’ questions. Furthermore, “a poor interpreter can dampen a deaf student’s motivation to participate in classroom discussion” (Foster, 1998). Mainstreamed students who rely successfully on interpreters during the school day are on their own when class is over. As one deaf woman puts it, “You can’t discuss Aristotle over beers after class by reading lips” (Carpenter, 2001, personal communication). Early Intervention Children in the United States who are found to be deaf receive early intervention up to age 3. Early intervention programs vary widely in content and quality. For profoundly deaf children, the parent–infant programs provided

56

GULATI

by deaf schools are often of higher quality. Every early intervention program depends crucially on the skills and the philosophy of its providers. The typical early intervention program for profoundly deaf children includes at least a few hours per week of sign language exposure. Parents of deaf children are usually encouraged to take sign language classes and to create a “visually accessible” environment for their children. Naturally, even the most committed hearing parent may be unable to provide an environment as rich in visual language and meaning as that which many deaf parents can provide. It is difficult to write this, not wanting to hurt the feelings of hearing parents, many of whom go to extraordinary lengths for the sake of their deaf children, but it would be unfair to deaf people not to acknowledge their special sensitivity to the communication needs of deaf children. Residential Schooling Residential schools were established throughout the United States in the 19th century on the model of the American School for the Deaf. Subsequently most converted first to oralism, and then to Total Communication. With the advent of mainstreaming, many residential schools have shrunk or closed. Formerly the bastions of Deaf culture and the places where ASL stayed alive during its prohibition, the residential schools now serve fewer “normal deaf” and fewer hard-of-hearing students. Instead, they often serve students who cannot be mainstreamed due to cognitive, linguistic, behavioral, or medical complications, or those who have not succeeded with mainstreaming or other forms of education. The American School for the Deaf, for example, which served 500 students at its peak around 1970, now has 225, of whom 35 are in the social-emotional (therapeutic) residential program. Residential schools provide their students deaf peers and role models. They sponsor Deaf athletics (a major part of Deaf culture—both the football huddle and baseball signs originated with Deaf people.) On the negative side, they may have weaker academic programs than mainstreamed schools (which have greater resources), and can require long commutes or living in a dorm far from home. Finally, there has been a series of sexual abuse scandals in American residential schools. Collaborative programs, in which regional schools provide services to deaf children from a wide area (for example, several towns, or an entire county), can preserve many of the advantages of residential schools: Deaf staff, deaf peers, and teachers who are experienced with deaf children. At the same time, they offer the advantages of mainstreaming: Their students live closer to home, have access to programs such as advanced placement, and learn how to get along with hearing peers. For many students such programs offer the best of both worlds.

2.

PSYCHIATRIC CARE

57

GROWING UP DEAF Hearing Parents With Deaf Children “Parents do not want anything to be wrong with their children.” (Quin, 1996)

I often interview hearing parents who have raised deaf children. Asked to recall the moment that they realized that their child was deaf, these mothers and fathers often burst into tears decades after the event (Kampfe, 1989a). “It was as if he died,” one said. “I thought he would never be normal or happy.” By contrast, when one Deaf person discovers that another has children, one of the first questions is, “Is your child deaf?” If the answer is yes, the questioner is often pleased. The same baby, born deaf, causes anguish if born into one family and celebration, or at least equanimity, if born into another. Even when it is strongly recommended to them, very few hearing parents become fluent in American Sign Language (Meyers & Bartee, 1992). This may be in part because their child will learn it so much more easily than they, and because they fear losing their deaf child to the alien Deaf culture. In my own practice, fewer than 10% of all parents are fluent signers, and only half have intermediate or better sign language skills. Many deaf adults remain angry and unforgiving of parents who “could never accept me as I was,” “never got over having a deaf child,” or never learned sign language. Very frequently, one parent signs better than the other, who may scarcely know a single sign. The nonsigning parent’s entire relationship with the deaf child is then mediated by the signing partner, who must act as an unpaid interpreter. The interpreting parent often feels burdened by the responsibility and pleased with the specialness of his or her relationship with the deaf child. Frequently, this interpreting role goes beyond language interpretation into global world interpretation. When this occurs, the child is at risk for dependency on the signing parent, which can lead later to extraordinary levels of conflict, particularly in late adolescence when the child is trying to separate, find an identity, and move into the wider world. Siblings often have good signing abilities, but are sometimes use them reluctantly. Grandparents, separated, or divorced parents who live at some distance, and other relatives rarely learn any sign. Deaf adolescents sometimes report that their parents began signing when they brought Deaf friends home from school. With their child’s friends, the parents can no longer rely on the limited signing, home sign, or lip-reading to which they might have been accustomed. Few families, even when they can afford it, hire interpreters for parties, family reunions, church, weddings, or other family events. (In Massachusetts, the going rate for private interpreters is $40 an hour with a 2-hour minimum.) Occasionally, hearing children and other adults in the child’s home neighborhood will learn some sign and be-

58

GULATI

come important in the child’s life. Such children, like the hearing children of deaf parents, often go on to become interpreters or to work with deaf people in other capacities. Deaf children often evolve clever ways of communicating nonverbally with playmates in order to participate in neighborhood play. As they get older, however, the communication barrier becomes increasingly difficult to scale, and they become vulnerable to isolation and bullying. Some children, particularly hard of hearing children, develop a bossy personality to compensate. This can be understood by considering that if the child is making the rules and ordering peers around, it reduces the need to follow the conversation between peers. Hearing parents have been found to be more controlling and negative when interacting with deaf children than with hearing children (Brinich, 1980; Musselman & Churchill, 1993). Hearing mothers show fewer communicative acts with their deaf children than their hearing children, and their children produce fewer communicative acts in return (Spencer, 1993b). The degree of control may lessen as the children age, but conversational asymmetry continues (Nohara, MacKay, & Trehub, 1995). (A similar pattern is seen in classrooms with hearing teachers [Wood, 1991].) Put together, these facts all too often mean that a deaf child’s home environment is communication-inaccessible, language-deprived, and socially isolated. “Ironically, events traditionally associated with family camaraderie and closeness are frequently the most difficult for deaf people” (Foster, 1998). In the longitudinal British study, “many of the deaf people interviewed said their worst memories were of conversations around the dinner table … the fast paced and overlapping nature of these spoken exchanges made them almost impossible to follow through speechreading” (Gregory et al., 1995). Growing up in such an environment, it should not be surprising that many deaf young people show serious deficits in world knowledge. It is not uncommon to meet deaf children who cannot describe the family tree (this is particularly true when there have been divorces and remarriages), do not know a baby sibling’s name, or cannot explain what their parents do for work. One child in the British study finally realized at the age 20 that the world was not black and white in his parents’ day—only the photographs were (Gregory et al., 1995). When they reach young adulthood, a significant number of young deaf people form strong bonds with one another, improve their sign language skill (this often happens at college), and strengthen their identities as members of the Deaf Community. Occasionally there is a ritual rejection of the philosophy and expectations with which they were raised, usually in the direction of a more Deaf identity (e.g., flushing hearing aids down the toilet and refusing to use speech). Such students are essentially rejecting their parents’ view of their own best interests. Forty percent of the raised deaf children in the British study eventually chose to acquire some British Sign Language (BSL). Those who remained

2.

59

PSYCHIATRIC CARE

oral mainly had moderate or mild hearing losses, but half of them chose to learn BSL anyway because they wanted to communicate with other deaf people (Gregory et al., 1995). Between their poor hearing and their poor speech, oral children have the greatest difficulty in connecting with other oral children. The desire to connect and communicate easily with others who have similar experiences is no doubt the major driving force behind the existence of deaf cultures. The British study documented the problems the young deaf people encountered in their dealings with the world at large. Unfortunately “the medical profession was often singled out as lacking awareness.” One 22year-old said “the doctor is frightened to talk to me on my own.”Even in adolescence parents often communicated to physicians for their children, leaving them embarrassed and uninformed. Many parents in the British study, however, were surprised how well their children turned out. They reported feeling enriched by the experience of having had a deaf child, yet “almost all still thought in terms of the hearing person that might have been, a notion that was alien to the deaf young people.” They expressed sadness about those parts of their own hearing culture, such as nursery rhymes or church experiences that they had been unable to share with their children. Although they faced overt discrimination and were often underemployed, the children were as likely to hold jobs as their hearing peers. They voted, drove, and “traveled all over the country to meet up with people, and belonged to a vast network of relationships.” The bulk of them said they were happy with their lives. Parents who are attempting to communicate in English must struggle with the need to gain the child’s attention (Baker & van den Bogaerde, 1996), to repeat sentences, and to understand their child’s distorted speech (Schlesinger, 1988). Their interactions with their child may be dominated by teaching and correcting speech (Zalewska, 1989). Deaf children don’t hear; trying to attract their attention constantly to something outside their experience is potentially a very frustrating proposition. Case Example A 15-year-old from a rural area lives with her parents and brother. Her family members sign poorly. She attends a public school program with an uncertified interpreter for all her classes. She has few friends, and feels “different” and “strange” at school. She is often teased about all the things she does not understand, and usually eats and spends recess alone, but she is never seriously bullied, threatened, or hurt. Her parents are committed to their rural lifestyle, and their traditional values argue against sending their daughter to a residential school. She says she hates herself, and wishes she were hearing “because I could talk to my parents and would have a much better life.” Her teachers urge her to consider attending a Deaf col-

60

GULATI

lege such as the National Technical Institute for the Deaf (NTID) in Rochester. This case illustrates a child whose personality was not up to the challenges of mainstreaming, and who will have significant work to do to overcome her problems with self-esteem and identity. Case Example An adolescent boy is mainstreamed in his local public school with a full-time interpreter. The interpreter functions as tutor and teacher’s aide, explaining material to him. His peers see him as “different,” but are respectful and do not tease him. However, due to modified grading and reliance on the interpreter’s skills, it is not evident that he is academically behind his classmates—several grade levels behind in fact. His parents are intermediate signers. Everyone—teachers, interpreter, classmates, and the boy himself—believes he is a fluent signer. However, when seen at our psychoeducational clinic, he is found to be several years behind in sign language skill. His parents refuse to accept recommendations that he be placed in a program with signing peers and deaf teachers. He will become aware of his deficits only when he arrives at a deaf college, and is unable to keep up with the signing and conceptual abilities of his more fluent peers. Case Example Having become bored in a bilingual residential program, a 14-year-old ninth grader transfers to a highly regarded mainstreamed program. There, she is heavily involved with drama and athletics, and gets nearly straight As. She is elected class treasurer. She chooses to attend Gallaudet, with the goal of becoming a psychologist. Her parents sign well, but she just as often lip-reads. They describe her as a “normal teen.” Deaf Parents When “handicapped” is written across the eyes of the parents, the extended family, school personnel, and society in general, deaf children grow up to be handicapped. When success and failure are not seen as continuums and when deaf people are categorized as failures, the deaf child has little chance of growing up to be a competent, self-sustaining adult. The majority of those who escape the stereotyping are children of deaf parents. (Stevens, 1992)

Deaf children with deaf parents appear to benefit from: • A fluent first language learned within the critical period, including an attuned form of motherese, i.e. parental language designed to facilitate a child’s language development (Reilly & Bellugi, 1996).

2.

61

PSYCHIATRIC CARE

• Normal social and emotional interaction with their parents through sign language. • Normal cognitive development and world knowledge acquisition through that language. • Knowledge about how to manage in life as a deaf person. • A feeling of belonging in the Deaf community. Numerous studies since the 1960s have demonstrated that deaf children whose parents are also deaf show advantages in cognitive development, self-esteem, academic achievement, and language skills, and English literacy compared with the deaf children of hearing parents (Charlson, Strong, & Gold, 1992; Davis, 1991; Geers & Schick, 1988; Gregory & Barlow, 1989; Harris, Clibbens, Chasin, & Tibbitts, 1989; Jankowski, 1997; Kampfe, 1989b; Lock, 1996; Yachnik, 1986). The literacy findings are especially striking considering that the deaf parents in these studies were less literate than the hearing parents—yet their children were more literate. In addition to precocious language, so-called deaf-of-deaf children also show extraordinary visual perceptiveness, highly developed dramatic, mimetic, and poetic abilities, and strong identities as culturally Deaf. Many leaders of the Deaf community are deaf-of-deaf. Deaf children often seem magnetically drawn to deaf adults, and sometimes have to be dragged away, sometimes kicking and screaming, when it is time to leave; this, of course, can be a hurtful experience for hearing parents. On the other hand, deaf parents are at risk of being victims of discrimination, poor education, childhood abuse, childhood isolation, and neglect, and they may lack support and services that they might need. If they suffered harsh parenting growing up, perhaps as a result of the communication barrier with their parents, they may re-enact this with their children. It is not uncommon for relatives, guardians ad litem, and judges to believe that deaf people are incapable of raising children, and to worry about hearing children’s spoken language development. There is almost no real risk of this—hearing children of deaf parents have adequate opportunities in school and with friends to acquire spoken language even if all the adults in their immediate family are deaf. Observing Deaf parents with their children can be a delightful experience. Deaf “motherese,” expressive signing carefully directed within the child’s visual field, fosters sign language development, while a host of parenting techniques establish a comfortable and stimulating environment for the deaf child. Case Example A single mother of three is referred by the Department of Social Services. Her eldest child, who is 8, has been reported to be seen alone, baby-sitting his infant sister. Asked about this, the mother says, “I was stressed and

62

GULATI

needed some time to calm down.” Over a period of 1 year of family therapy and attendance at parenting groups offered by a local agency, she shows some improvement but continues to neglect her children. She protests that “this is how I was raised. My mother knew what she was doing!” She distrusts the DSS worker, who almost always appears without an interpreter, and often communicates with her by TTY, sometimes explaining complicated procedural subjects or visitation schedules. The DSS worker ignores the therapist’s advice that the deaf mother is functionally illiterate. The mother is repeatedly rude to the DSS worker, insulting her and refusing to answer the door. She loses custody of her children. In court, the judge chides DSS for not using an interpreter. A deaf-of-deaf man recalls inviting a deaf college friend to his family’s home for Thanksgiving. At the dinner table the deaf family engaged in a lively discussion of the events of the day and of Deaf athletics. Suddenly someone noticed that the visitor was in tears. “What’s wrong?” they asked. “That’s the first time I had any idea what it was like for my hearing family at the dinner table,” he explained. SYNDROMES AND SITUATIONS This section covers a variety of specific clinical syndromes and situations that constitute the “bread and butter” of psychiatric work in deafness. Language Deprivation: Clinical Presentation The acquisition of a fluent first language is essential to normal emotional, cognitive, social, and occupational functioning. The human suffering created by language deprivation is profound, and is all the more heart-breaking because it is entirely preventable. Most Deaf people have firsthand knowledge of language deprivation, having seen it all around them. For many hearing people, however, and in the general psychiatric literature, the nature and severity of this condition is generally unrecognized. Those who have it suffer alone and rely on others to advocate for their needs. In its most severe forms, most often seen in immigrants from rural places where no sign language exposure was possible during childhood, the patient is essentially without language. He may have home sign, meaningful gestures that may have some grammatical features but do not constitute a whole language (Morford & Goldin-Meadow, 1997). He may also have “visual-gestural” communication—a facility with mime that permits some degree of communication. To varying degrees, he may have non-verbal knowledge of concrete matters, such as how to cross a street at the right time.

2.

PSYCHIATRIC CARE

63

The languageless person is deprived of the rich shared abstractions of culture. The thousand questions children ask all have gone unanswered, leaving a person for whom the world is nearly devoid of meaning. Concrete, observable events can be absorbed and, to some extent, understood. To varying degrees, the language-deprived person has lost the child’s intense curiosity. Profoundly language-deprived deaf people whom I have treated show severe problems such as self-abuse, illegal sexual behaviors, and an inability to work productively or live independently. One waits in vain for such a patient to “say something.” The experience of being with one can feel like not being with a human being at all; language is that central to what we are. Less severe forms of language deprivation can occur at any time and place due to parental denial of the child’s language problem, educational neglect, or overly zealous auditory/verbal/oral focus. Some degree of language deprivation is so common among deaf psychiatric patients as to constitute the norm, particularly among inpatients. A patient with moderate or mild language deprivation has some language capacity (signed or spoken), but it is below what is expected by chronological age. As a very general guideline, children with first exposure before age 3 will sign close to fluently. Those with first exposure in early childhood may have mild deficits. First exposure in later childhood leads to significant deficits, but conversation is still possible. Those with first exposure after age 8 or 9 have difficulty conversing. These generalizations are highly imprecise, because the eventual degree of language ability depends not only on how far into the critical period the first exposure took place, but also on the quality and extent of that exposure. For example, many children are exposed to a poor quality of signing for only a few hours a week when they are at their maximum capacity (ages 1 to 3) for acquiring language. Those with mild to severe language deprivation can, to varying degrees: 1. Show verbal and cognitive deficits despite sometimes normal performance IQ, 2. Become overwhelmed, confused, or obsessed with the complexities of abstract world demands, such as medical, financial, legal or psychiatric, 3. Appear to have a thought disorder, 4. Appear lethargic or demented despite presumably normal intelligence, 5. Lack insight into psychological processes, 6. Lack social rules (e.g., about normal sexual behavior), 7. Have very poor world knowledge, such as lack of knowledge of personal health care, resulting in increased susceptibility to illnesses, and potentially worsening their course, 8. Show a wide variety of emotional and social deficits that result in a markedly reduced quality of life,

64

GULATI

9. Be unable to answer basic questions about their own lives. In addition to lacking information, they may have difficulty with time sense, narrative sequence, and cause and effect. Among the most difficult situations that arise in the mental health care of deaf people are those requiring the remedial teaching of the social rules that are often lacking in those with language deprivation: how close to others to stand, how to express anger without scaring people, how to take turns, and how to care about another’s point of view. Presumably, lacking language, these patients were unable to comprehend notions of right and wrong. Clinicians who work in deafness struggle with this issue daily. Strategies that have been developed to address these problems at Westborough State Hospital are described in chapter 4 of this volume. Skilled Deaf workers can perform ASL evaluations that include recommendations for the best mode of communication with the patient, documentation of idiosyncratic signs, and recommendations for remediation. Communication ability can be documented in a standardized manner using the assessment tool described in chapter 7 and included in its appendix. Unfortunately, there is as yet no research-validated clinical tool for the assessment of American Sign Language skill. Such tools are in development, and should be available soon, making it possible to say whether an 8-year-old signing child actually has an 8-year-old’s language ability. The management of the adult with profound language deprivation includes: • Securing intensive pure sign language education for the affected person and his or her family, • Accessing services for the deaf, particularly social contacts for the deaf person. • Arranging for adequate supervision for safety, • Instruction in independent living skills, • Ensuring adequate legal protection (typically requiring carefully chosen guardianship). Children with language deprivation typically require a change in their educational programming. The general yardstick is that the child who is behind should be making at least 1 year’s language progress for each year of school. If the child is falling behind, then the school program is inadequate or the child has a language-learning disability. The child psychiatrist may participate as part of a team that performs a psycho-educational evaluation and makes recommendations for enhancing the child’s education. The slowness of bureaucratic educational systems is often agonizingly pitted against the inevitable closing of the critical window for language acquisition in these cases.

2.

PSYCHIATRIC CARE

65

Case Example: Total Language Deprivation Nan was born deaf in a developing country and had no childhood exposure to sign language or to formal education. She had a series of psychiatric hospitalizations due to wandering away from home, agitation, and aggression toward local children. In the hospital Nan presented as a petite woman, sitting and smiling. She made eye contact, and turned toward anyone who approached her. She had apparently been taught to write her name and appeared to understand that these written words were connected to her. However she did not know and could not learn anyone else’s names. There was no evidence that she understood that others had names. She showed no awareness of any complete alphabet. She was pleasantly compliant with ward routines, responding to gestures to move from place to place, to prepare for bed, or to eat. She took any medications offered to her. Seeing others talking she often began moving her lips rapidly, apparently in imitation, but with no linguistic content. Nan occupied herself during the day sitting either alone or with deaf peers, often watching television with no evident comprehension. She looked puzzled if there were dramatic events on the unit such as a fire alarm or a physical restraint. Attempts to communicate with her through drawings showed that she could recall visual details of places she had lived. Her startled reaction to a photograph of fireworks, combined with her presence when younger in a country that was at war, made us wonder if she had experienced war trauma. Hospitalized on the Deaf Unit, where she had intensive immersion in American Sign Language, Nan learned some ASL words and phrases. However, she developed no grammatical features such as tenses, plurals, or pronouns. One day, returning from a walk in which a thunderstorm had broken out, she startled us by smiling broadly and signing “rain, me, yes.” We took this to mean, “it rained on me and I loved it,” and speculated about the nature of her unusual smile. To what extent did having acquired a tiny amount of language now allow her to experience a social feeling of sharing a pleasurable experience with other human beings? Case Example: Moderate Language Deprivation Ron is a 24-year-old hotel worker who was first exposed to sign language at the age of 7. His sign language is usually clear but seems simplified, often lacking clauses, verb tenses, and the clear use of pronouns. He is reliable in obtaining psychiatric care for depression, but often comes to the clinic unannounced, hoping to be seen. (It is a Deaf cultural characteristic, a holdover perhaps from the days before TTYs, to “go there” and knock on the door, whether with friends or professionals.) His thinking is notably concrete, but he shows a creative use of tools such as a date book to organize his life.

66

GULATI

Psychological testing shows that his verbal IQ is 55, whereas his performance IQ is 108. He is unable to read, and deeply ashamed of this fact, as well as of his nonfluent knowledge of ASL. “I have low language,” he sighs. There is no evidence of brain damage in his medical history and no language disorder or mental retardation in his family history. He is satisfied with his job, and is a hard worker, but wishes he could work as a chef. He complains of a lack of friends, but does not attend Deaf community events because he is embarrassed by his inability to communicate fluently. He has no hobbies and no relationships outside his family, who are loving toward him. One sister signs well and takes responsibility for communicating family and world events to him. He complains of being unfulfilled and deeply lonely. One of the most moving experiences one can having in working in deafness is to observe the gentleness and skill with which deaf people with better language skills work with the “visual/gestural” communication of language-deprived patients, which they sometimes call low language. Deaf people in general exhibit an enormous range of communicative flexibility from mime to Pidgin Signed English (a signed combination of ASL and English) to pure ASL, often working very hard to make it easier for hearing people to understand them. By contrast, hearing people are rigid in their expectations of near-perfect fluency from one another. Case Example Ed, the profoundly language-deprived man described in chapter 1, is found to have Obsessive Compulsive Disorder, but has been treated in the past with antipsychotics, which caused dystonic reactions. He therefore refuses to take any medication. Working with him through mime and gesture, a Deaf staff member is able to determine that in addition to worrying about dystonia, he believes that the medication will cause his urine to darken (he communicated this by pointing at a yellowish wooden surface). The worker requests actual pills of the old and new medications, and graphically illustrates putting the old one in the trash and taking the new one instead. He and the patient examine some urine cups in order to ascertain that the patient’s urine is normally dark. There is an element in this interaction of the patient’s recognizing that the person working with him is deaf, increasing his trust. After a day-long intervention by the mental health worker, Ed agrees to try the new medication. COCHLEAR IMPLANTATION Introduction The issue of cochlear implantation is perhaps the most controversial current subject in the world of deafness: “Some hearing people see it as the de-

2.

PSYCHIATRIC CARE

67

vice that will eradicate deafness, while some deaf people see it as a device that will eradicate them” (Stevens, 1992). The controversy dramatically illustrates the differences between hearing and Deaf world views, and the state of relations between them. Twenty thousand implant procedures have already been performed in the United States (Feller, 1999). For these reasons, it is covered in particular detail here. The cochlear implantation of late-deafened teenagers and adults is uncontroversial and often a bona fide medical miracle. These people have previously learned a spoken language, and can make sense of the distorted sound quality; you can understand “Daffy Duck on helium” if you already know what Daffy Duck sounds like. These people are able to make an informed decision about implantation, considering the potential benefits, the risks of surgery, and the time and effort required for postsurgical training. After implantation, they can freely choose when to use their implant, perhaps choosing not to wear it when they feel tired or in settings where they feel embarrassed by the external device (a transducer attached magnetically to the head behind the ear, sometimes wired to a small box). For those in this group, about five in six gain some benefit in some augmentation of their lip-reading skills. Approximately 1 in 20 is able to hear without lip-reading. By contrast, culturally Deaf adults and teenagers rarely desire implantation. Those who do are more often curious than desperate, and do not have the expectation of becoming primary users of English or becoming culturally hearing. Typifying this attitude, an acquaintance in his 50s said, “I’m Deaf, but it would be interesting to see what all the fuss is about, though I think I’d get tired of it and turn it off. Who needs all that noise?” Young Deaf Children The controversy centers on the remaining group: young deaf children who have neither language, nor a cultural identity, nor the capacity for informed consent. The Deaf community raises two levels of argument against the use of implants in this population. The first is whether current implant technology actually works for those without a prior knowledge of spoken language, or whether the time spent in intensive rehabilitation, often deprived of sign language, might actually damage the child’s overall language development. “It’s like spending thousands of man-hours training a child with CP to walk (clumsily) when a power wheelchair will always be a more efficient way for her to get around—instead of spending that time developing other skills she could really excel at despite her physical limitations” (Carpenter, 2001, personal communication). This objection would be erased by a “perfect” implant, which simply made the deaf child hearing. The second level of argument is more radical, and rejects even the “perfect” implant: If deafness is a valid and equally rich way of being human, is found naturally in the human gene pool, and leads naturally to member-

68

GULATI

ship in a linguistic and cultural minority, then the attempt to change a normal deaf child into an imperfectly hearing one is simply wrong—akin, as many Deaf people put it, “to trying to make a black person white.” In the print literature, this view is most clearly explicated in the writings of Harlan Lane (Lane, 1995b) and Robert Crouch (Crouch, 1997). This line of argument has led to some Deaf people characterizing the implantation of young deaf children as cultural genocide. The abortion of otherwise healthy deaf fetuses, from this point of view, is eugenic—hardly what the average implant engineer and genetic counselor set out to do! Understanding Deaf Community Opposition: A Thought Experiment The radical Deaf position can be understood with the help of a thought experiment. Imagine a hypothetical medical condition in which some children were born able to hear and speak French fluently, but not English. If surgery were available that might give such children some ability to understand and speak English, would we promote it as an obvious good? It seems more likely that, knowing that there is a large, active, French-speaking community and that being restricted to the use of French in no way impedes human happiness, we would send them to bilingual schools and learn French in order to speak with them. We would take delight in their exquisite native mastery of French language and culture. Regarding English, we might be satisfied if they were able to learn some English as a second language, taught via their fluent first language. It is very unlikely that we would consider depriving them of French in order to encourage their use of English, or that we would be pleased if an implant were available that would give them a chance at learning some English while depriving them of the opportunity to have fluent, expressive French, learn about France, feel French, or meet French people. From a linguistic point of view, of course, ASL is no different from French. Does the Cochlear Implant Work for Deaf Children? A complete review of outcome studies is beyond the scope of this chapter, but these three studies, from well-regarded implant centers, demonstrate typical results: • A study at the University of Iowa showed a quarter of children not using the device, presumably because it provided no benefit, and the remainder showing some improvement over 5 years of rehabilitation in such closed set tasks as choosing the correct speech sound out of four choices. Five of the original 40 children showed an ability to correctly identify 4 out of 5 words (Fryauf-Bertschy, Tyler, Kelsay, Gantz, & Woodworth, 1997).

2.

PSYCHIATRIC CARE

69

• A study at the Central Institute for the Deaf (CID) in St. Louis, an oral school, found that 13 prelingually deaf children showed a spokenlanguage improvement over 3 years from the 50th percentile (for deaf children in their oral program) to about the 60th, based on samples of the children’s best utterances (Geers & Moog, 1994). • A study at the New York University School of Medicine reported the results for three of eight implanted children, showing “some open set word understanding,” which ranged from understanding 10% to 50% of words from a kindergarten-level word list (Cohen & Waltzman, 1996). In summary, despite the implication of media reports (the case of Caitlin, followed on 60 Minutes and elsewhere, has probably been the most influential) and the hopeful advertising of the manufacturers of cochlear implants, the current level of cochlear implant technology does not provide the average deaf child adequate hearing to be able to acquire spoken language. The breathless media portrayal of the implant as a “bionic ear” and the enthusiasm of the implant community are hardly supported by the published results. As one otolaryngologist put it, most children are essentially made severely instead of profoundly deaf (Rosen, 1990). One can infer from the usual implant program criterion that candidates must have less than 30% speech discrimination, that they are unwilling to promise much more than 30%—an amount that is completely inadequate for managing in the hearing world. This criterion, of course, appears inside a brochure with a picture of a child talking on the telephone on its front cover. Problems With Cochlear Implantation I’ve mentioned that my personal concern with cochlear implantation is the risk of iatrogenic language deprivation. Many children did not sign before being implanted, and many implant programs discourage or forbid sign language use after the procedure. Parents, hopeful that their child will become more hearing, also tend to sign less, and to focus on speech. Too often, the required intensive rehabilitation is not adequately planned, funded, or available. In any case, the rehabilitation setting is typically auditory–verbal rather than sign language–visual, and therefore does not support continued sign language. There is a general under-appreciation of the amount of work required of the child and family during rehabilitation. Even Caitlin emphasized that the implant was not a quick fix. “‘You don’t pop it in and suddenly hear,’ Caitlin said. ‘It’s a tool you have to learn to use, which takes years of intensive speech therapy and support from family members’” (Feller, 1999). Implant programs do not feel an ethical obligation to ensure a child’s overall language development. Most programs are convinced that “a little bit of hearing is a good thing,” and are satisfied if the child shows some sound awareness. Insurance issues add to the problem. The surgical

70

GULATI

procedure itself is “covered by most insurance companies as well as Medicaid and Medicare. The essential auditory and speech therapy require additional funding, which may not be covered by insurance” (Feller, 1999). Taken together, these considerations can lead to a child losing language abilities relative to peers (or not making the gains needed to catch up), and being pushed further into or past the critical period for language acquisition. It should be noted that implant programs vary widely in their appreciation for the issues considered here, and the degree of responsibility they feel for ultimate outcome (as opposed to simply seeing the surgery through). At Children’s Hospital in Boston, for example, children are actually less likely to be approved for implantation if they do not have strong sign language skills, and are encouraged to continue with sign language after implantation. Thus, the risks of damage to deaf identity, of feelings of failure if the implant does not succeed, and of language deprivation are all reduced. A Theory About the CI Controversy When otologists and audiologists mention the Deaf Community, American Sign Language, or opposition to cochlear implantation it is often with puzzlement or even anger that their good intentions might be questioned. Despite working with deaf people every day, very few of these professionals—particularly otologists—have any firsthand experience of deafness as a lived experience. Few have had the opportunity to observe deaf children in the classroom, with their families, or with their peers. Almost none can converse with them directly. Their expertise is in correcting hearing, not in understanding what it is to be deaf. I wonder whether the joy Deaf people feel in using a language that comes naturally to them is precisely the same joy that hearing people take in their spoken languages. ASL “works” for many deaf people in a way that English and other spoken languages do not. It “takes” in the brain like a plant in its native climate. English means a struggle to hear. ASL is right there for the already visually attentive deaf person to see. Paradoxically, deaf people’s passionate militancy against cochlear implants may be motivated by precisely the same love of fluent language that motivates those who promote cochlear implants. For all their belief in the importance of English, most who advocate it for deaf people fail to recognize how we as a society actually treat people who have imperfect English or who have trouble hearing—people with foreign accents, for example, or those who are hard of hearing. Hearing people do not like to speak up, to repeat, or to be misunderstood. They desire direct and reliable spoken communication that can be taken for granted. Is it any surprise that deaf people want the same thing? Both proponents and opponents are well-intentioned, and believe they speak in deaf children’s best interest. The fact that they reach opposite conclusions seems to beg exploration and explanation, but the cross-cultural

2.

PSYCHIATRIC CARE

71

nature of the controversy, in which most signing people believe one thing and most speaking people believe another, makes this exploration difficult. The controversy is then heightened by the power dynamics between a traditionally disempowered group now fighting for civil rights and a conservative medical establishment with a limited appreciation of the linguistic, cultural, and educational issues created by a relatively straightforward surgical procedure. Organic Illness To choose to see deafness as primarily a cultural rather than a medical concern does not require one to deny that deafness can have other biological correlates. When genetic, as it is perhaps half the time, deafness may be part of 1 of approximately 400 known syndromes such as Waardenburg Syndrome (white forelock, heterochromic irises, and wide-spaced eyes) or Usher’s Syndrome (with the potential for progressive blindness). There are about 70 additional nonsyndromic, or pure-deafness, genetic causes. The most common recessive nonsyndromic hereditary cause of deafness has recently been identified as the Cx26 gene, which codes for the protein connexin 26 (Rehm, 2000). Testing for Cx26 is now available, and has the potential to permit parents to reject otherwise healthy fetuses who may be deaf. (This consequence of the rapidly growing field of genetic testing is of great concern to the Deaf community.) Of course, connexin 26 testing can also be used by deaf or hearing couples who want to have a deaf child. A case of this type has recently stirred controversy, in Washington, D.C. The identification of genetic syndromes requires careful physical examination, family history, chromosomal testing, and coordination with neurology, genetics, and developmental specialists. Children’s Hospital in Boston maintains a computerized syndrome database that can seek syndromes matching a patient’s list of presenting symptoms. Nevertheless, it is common to be unable to identify a syndrome or familial pattern to explain a patient’s deafness. It is striking how often a careful family history reveals deaf or hard-of-hearing family members, yet the deaf person’s family continues to believe that the deafness was caused by something they did: “he fell from the ironing board when he was two, and that’s what caused it … but yes, his grandmother was deaf.” Approximately 1% of children have some degree of hearing loss, most often correctable with hearing aids and classroom interventions (this does not include transient hearing loss due to middle-ear infection, which can temporarily affect spoken-language development in chronic or severe cases). Perhaps one tenth of these have the severe-to-profound bilateral deafness that predisposes children to prefer sign language and be more likely to become culturally deaf. Deafness may be due to an acquired medical condition. The most common of these are infections: cytomegalovirus infection, meningitis, and ru-

72

GULATI

bella. Less common are trauma, auto-immune conditions, tumors, and such conditions as otosclerosis (a common condition that more often causes mild losses later in life) and lead poisoning. Important iatrogenic causes include exposure to ototoxic drugs such as the aminoglycosides and extraocorporeal membrane oxygen (ECMO) therapy. Rubella is rarely seen now in children, but is a frequent cause of hearing loss in adults; there is a “rubella hump” of children born in the early 1960s. Children with sequelae of CMV infection can show progressive hearing loss, requiring careful educational planning that takes this possibility into account. Typical psychiatric conditions in patients with infectious causes of hearing loss include learning disability, cognitive dysfunction or mental retardation, attentional problems, impulsivity/ aggression, and affective instability. Affective instability, impulsivity, and attentional problems that result from organic brain damage are variably responsive to symptomatic treatment (such as lithium for affective instability). Carefully monitored, organized, and documented trials of various classes of medications, titrated to appropriate doses, often lead to discovering a medication that happens to benefit a particular patient. Few culturally Deaf people are as interested in their audiogram or the cause of their hearing loss as most physicians are. They may not even be interested in their children’s audiograms (Challenging Case, 1999). Psychosis In diagnosing deaf patients, the easiest error to avoid is misdiagnosing functional psychosis. A patient might have an organic condition that causes behavior that may be interpreted as the bizarre behavior of a psychosis. A deaf patient in a hearing setting might appear aloof from hearing examiners due to past traumatic experiences with health care, poor quality interpreting, concerns about confidentiality, or fear of mental health care (the stigma surrounding mental illness is as strong in the Deaf community as in the hearing community.) Most important, cultural and linguistic differences can easily be misinterpreted as psychiatric symptoms. In diagnosing psychosis, it is safest to rely on unambiguous evidence such as religious delusions, spontaneous statements of hallucinations, documented bizarre behavior, and the presence of ideas of reference, particularly in patients with nonfluent language. It is essential to assemble the broadest base of information and the assistance of collateral contacts (see the sections in this chapter on cotherapy and information-gathering). Case Example A Deaf man in his 30s was evaluated at the request of his family doctor. He presented with an elaborate theory about “natural” treatments and the “natural” life. The psychiatrist suspected a psychosis but refrained from making the diagnosis until the fourth session, when the man provided un-

2.

73

PSYCHIATRIC CARE

ambiguous evidence of a paranoid delusion—being able to go outside only at certain hours of the day, and keeping an attack dog, due to a fear of being watched by “writers.” Interestingly, many deaf patients with psychosis report auditory hallucinations. This is perhaps not so surprising when one considers that most deaf people have some hearing, and do have a concept of sound. I am not aware of any cases of the report of auditory hallucinations in deaf patients who, say, lack cochleas. It is possible that the mechanism of psychosis is hard-wired to auditory or vocal areas of the brain, a hypothesis supported by subvocalization research. In my case series to date, one in three deaf schizophrenics and about one half of patients with psychotic affective disorders report visual hallucinations, as opposed to 1 in 10 hearing schizophrenics and very few hearing people with affective disorders. These visual hallucinations are typically experienced as a more vivid version of the normal deaf experience of seeing signed language in the mind’s eye when dreaming or thinking. One client reported, “I hear an angel and a devil. They are talking to me in sign. But they are not outside my head, they are inside.” One must be cautious in assuming that visual hallucinations in a deaf person automatically represent functional psychosis, and not completing a thorough work-up for the many possible organic causes. In addition to visual hallucinations, deaf patients often draw, gesture, write, or mime psychotic themes. Actually assessing the presence of hallucinations can be challenging. Deaf Unit communication specialist Michael Krajnak has developed visual tools that can help explain such concepts to language- or cognitively impaired deaf people. Case Example A deaf patient with Pervasive Developmental Disorder, NOS, appeared to regress from his usual level of function. His interest in a fantasy world with a made-up alphabet and a warrior theme became so intense as to prevent him from working or socializing. He made numerous drawings, in front of which he would perform rituals that some observers thought might be prayers. A previous interest in astronomy became a terrifying obsessions and he appears to be having visual hallucinations. The treatment team waited a period of weeks before feeling convinced that he was suffering from hallucinations. He responded to treatment with an antipsychotic, although his history of trauma, language deprivation, and PDD made precise diagnosis of his psychosis impossible. Affective Illness A Mental Status Examination performed by a hearing psychiatrist, with the assistance of an ASL interpreter, noted the patient to be “somewhat

74

GULATI

histrionic … with exaggerated gestures and facial expressions.” The psychiatrist therefore diagnosed mania. In fact, the patient was simply speaking emphatically in American Sign Language, which uses a range of facial expressions that might appear outside of the range of normal for hearing people. Unsurprisingly, given the standard of care for deaf patients in the hearing community, she had never provided informed consent for the medication that she had been prescribed, and had no idea what her diagnosis had been. Clearly, it is essential to learn what the range of normal is for deaf people before attempting to draw such a conclusion. Deaf culture values mime, drama, and emotional expressiveness. From the Deaf point of view, hearing people are wooden and inexpressive; from the hearing point of view, normal deaf people can appear vivid. Family history, and careful work with collaterals to document changes in mood over time, are especially helpful in diagnosing affective illness in deaf people. Those with even mild degrees of language deprivation can have great difficulty assembling the narrative of mood changes that hearing psychiatrists generally seek in order to diagnose mood disorders. Mood disorders may be underdiagnosed in deaf people (Shapira, DelBello, Goldsmith, Rosenberger, & Keck, 1999). Careful attention to interpretation is crucial when assessing affect. The English word depressed, carries with it the hearing folk psychology of depression, often including ideas such as clinical depression. Using the same word with a Deaf patient through an interpreter, one cannot assume that the entire English gestalt of the word has been transmitted. It is far better to ask multiple questions about feelings, using a visual metaphor if possible, or even asking the patient to draw a time line showing the course of feelings over time. This helps the psychiatrist avoid either overdiagnosing depression because the patient says “I feel seriously depressed,” or underdiagnosing it when the patient is not understanding the psychiatrist’s word in a broad diagnostic sense, but rather in the sense of “how do I feel this very moment?” Aggression It is my observation, supported by pilot research, that language deprivation correlates positively with disruptive behavior. It seems reasonable to think that language deprivation might cause disruptive behavior. A thought experiment can help to make this clear: When a child misbehaves, or is anxious, or wants to make her needs known, people in the environment typically respond first through language. Imagine that the child is to be taken for a doctor’s visit, and then for an ice cream treat. The child with language may be fearful of receiving an injection, but can be told how long the visit will last, why going to the doctor is important (perhaps she is receiving an immunization, and can understand that it will make her safer), and that

2.

PSYCHIATRIC CARE

75

ice cream will follow. The child without language is interrupted, dragged to a strange place, endures pain, is dragged away, and then is surprised to be given ice cream. No narrative ties the events together or gives them meaning. How much else is involved in this simple example? The first child experiences empathy, and perhaps empathizes with the parent who once had to go for the same injection. She experiences mastery over her feelings. She learns medical and world knowledge. She learns about parenting. Without language, life is deprived of meaning. Imagine growing up to the age of 6, 8, or 18, without being spoken to by your parents in a language you can understand. Parents use language to soothe, to make the world predictable, to teach about inner states and that others have inner states, to explain complex concepts, to teach traditions and culture, and to make the world less scary. A child with language deprivation can neither express his own feelings nor make use of all these supportive functions of language. Hence, it should not be surprising if behavioral expressions of feeling and of frustration arise. (See Hindley, 1994; Hindley, Hill, McGuigan, & Kitson, 1994). Unable to understand the environment or to alter it through language, the child seeks to express needs and feelings through behavior: tantrums, anxiety, fretfulness, self-soothing behaviors, private rituals, stereotypies, self-abuse, and aggression. The child with language can use a situation such as visiting the doctor to develop superego function, executive function, and trust in caregivers and authority. The child without language loses this opportunity, and therefore may be at risk of immaturity, poor self-control, and distrust of authority. This may be the origin of the “deaf personality” observed by psychiatrists in the early 20th century, when oral education was in the fore. Medications that address the presenting symptoms (e.g., anxiolytics, particularly beta-blockers, for aggression and selective serotonin reuptake inhibitors [SSRI’s] for obsessions) can be helpful for behaviorally disturbed deaf people. I move slowly from one class of medications to the next, rarely using more than two at a time, and preferring one whenever possible. It is essential to identify clear target symptoms and arrange for them to be carefully logged. Perhaps more important than medication is the establishment of a containing, sustaining environment with maximum language access, maximum treatment access (DBT, skills training, behavior treatment, and cognitive treatment can all work) and cultural affirmation. Behaviorally disturbed deaf people can make very satisfying gains when provided with these supports. The psychiatrist’s role is to diagnose the problem and then advocate for the correct potentially healing—and usually expensive—therapeutic environment. For younger people this may be a collaborative school program with greater resources than a local school or a therapeutic residential school program (see chap. 6, this volume). For adults, it may be a specialized unit such as the Mental Health Unit for Deaf People at Westborough State Hospital, supported housing, or a specialized day or work program.

76

GULATI

In the most severe cases, gaining the cooperation of the legal system, either through involving a probation officer or judge, can greatly increase the leverage behind treatment. Unfortunately jails do not feel obligated to supply interpreters for Deaf inmates (this is being challenged in lawsuits at this writing), which can reduce the clinician’s willingness to see the client jailed if needed. Essentially jail becomes solitary confinement for the Deaf patient who does not have good lip-reading or speech skills. Attention Deficit Disorder Attention Deficit Disorder (ADD) is all too easily overdiagnosed among deaf children, particularly those placed in a mainstreamed setting. The difficulty of staring at an interpreter, particularly if the interpreter is unskilled, leads easily to problems with attention and to boredom, which can present as impulsivity and motor overactivity. A teacher of the deaf who is supposed to be signing sometimes may not, or may not sign well. Hearing teachers especially can have difficulty following instructions to face the classroom and write material on the board. (The impulse to communicate visually is hard to get for people for whom the auditory channel predominates.) Hard-of-hearing children using hearing aids, FM systems, or cochlear implants struggle with the exhaustion from working to hear all day, and from using their entire attention span to understand words rather than ideas. Finally, educational tracking often inappropriately promotes children from grade to grade, sometimes as a result of modified grading that makes it possible for a deaf child to move to a level where actual accomplishment is impossible. In that case, inattentive behavior is normal. Thus, every putative diagnosis of ADD in a deaf child must be carefully examined to rule out environmental factors. A school visit and conversations with several informants (teachers, aides, etc.), particularly deaf informants (who are often highly attuned to where communication is breaking down for the deaf child) can be very helpful. Case Example A 7-year-old child is brought in by her hearing father for evaluation for ADD. The father is observed to be a poor signer, and doesn’t notice when his daughter tries repeatedly to get his attention. He describes her as impulsive, fidgety, and doing poorly in school. The child signs well, and says that her teacher signs very well. She engages in play with some shyness, but does not seem inattentive. She names subjects that she enjoyed in school, and seems sad and frustrated that she isn’t doing better there. The psychiatrist visits the classroom several times. He sees that the teacher, who is hearing, signs fluently. The teacher’s aide, who is involved primarily with two other deaf students, is Deaf, and also signs fluently. The student’s peers do not sign, but are accepting of her. The subject matter of the class is clearly inter-

2.

77

PSYCHIATRIC CARE

esting to the child. But she is in constant motion, and frequently distracted by her peers. A provisional diagnosis of ADD is made, and she is begun on medication. Two weeks later, the teacher mails a picture that the child has drawn showing herself with an enormous smiling face, in the act of taking her medication. One year later, her academic work is described by another teacher as “dazzling,” and she is seen as an emerging class leader. In order to tease out the difference between ADD, organically based inattention, and environmentally induced inattention, I often use a blind therapeutic trial of a stimulant medication. The medication is given with the knowledge of the parents, school nurse, and principal, but without that of the teacher and classroom aides. The child is asked not to mention the medication to the teacher until the trial is complete. Depending on the medication, the trial might last days, weeks, or a few months. At the end of the trial, the psychiatrist interviews the teachers and reads school reports to determine whether the student did better on medication. If there is a suspicion that a higher dosage of medication, requiring upward titration, may be required, then a longer, more elaborate blind trial can be carried out. Such trials serve to reassure everyone involved that medication is being used appropriately; there is significant concern in the Deaf community about overmedication of Deaf children. Abuse and Neglect: Post-Traumatic Stress Disorder The rates of physical abuse, sexual abuse, and/or neglect approach 90% in deaf patients hospitalized at the Deaf Unit at Westborough State Hospital. This extraordinary number emphasizes the vulnerability of deaf people to abuse (and may also say something about its deleterious effects). Sadly, particularly high rates of abuse have been found in some residential schools for the deaf, the very places where deaf children have the strongest opportunity to develop their identities and their pride as Deaf people. Clinicians must therefore maintain clinical vigilance for sequelae of abuse, and be ready to report suspected abuse when appropriate. A small sample of deaf adolescents from my practice, all of whom were abused prior to the acquisition of fluent language, show a range of unusual symptoms that have been very difficult to reach with ordinary forms of therapy. Their symptoms include bizarre visual hallucinations, body memories, and apparent dissociations. Useful therapies in these cases have been long-term, highly structured and supportive settings with full communication accessibility. Case Example Harold is a 15-year-old boy who was sexually abused prior to his first exposure to fluent sign language at age 9. He has had annual symptoms

78

GULATI

since then, at the time of year when he is believed to have been abused. He has visual hallucinations of “a dark, furry animal, a figure in a black tuxedo, and a face with black skin, from hell.” He has no known history of drug or alcohol use. Harold was born of a normal, uncomplicated, pregnancy, but had perinatal distress. The psychiatrist notes that “all of his memories seem to have strong components of touch, smell, color, or taste. Harold has persistent concerns with whether or not he is safe.” After a medical work-up is negative, Harold is diagnosed with Posttraumatic Stress Disorder, and responds to several years of intensive treatment in a therapeutic residential program. Case Example A 17-year-old deaf girl with daily flashbacks and nightmares reports, “I grew up with signed English. I was getting terrible grades, so I was moved to the deaf school. I hate it there, because I don’t understand the other kids. They make fun of me for my language. I was beaten by my mother growing up, and they came from the social services department, but they believed my mother—she lied! I never had an interpreter for any of that, so they didn’t get my side of the story … I don’t think I’m a good person, and I’m not proud of my deafness. I hate myself and often want to kill myself. I think I’m stupid and mentally retarded. I don’t know if I can finish school, but I don’t feel ready to work.” Case Example A woman in her 20s was sexually abused by a close relative who threatened to kill her younger brother if she did not comply. She has dissociative episodes in which she graphically replays the abuse. A Brief Note on Hard-of-Hearing and Nonculturally Deaf People This book focuses primarily on Deaf patients. Hard-of-hearing patients’ needs are quite different. Almost universally, such patients consider themselves to be disabled. The primary exceptions are those, often with a stable, congenital loss and tremendous support from home and school, who feel that they have successfully “overcome” their deafness. They may feel proud of having mastered spoken English, and sometimes look down on signing deaf people. Most such patients are empowered around communication issues, and are quite clear about their needs. Another group of hardof-hearing people who reject the notion of being disabled are those in denial of the severity and significance of their hearing loss. The most difficult aspect of my experience of gradually progressive hearing loss was accepting that I was in fact having difficulty hearing (Gulati, 1998), even after I got

2.

PSYCHIATRIC CARE

79

definite audiological confirmation. I then had further difficulty appreciating the wide impact of hearing loss in my life. The main groups of hard-of-hearing people are: 1. 2. 3. 4.

early hearing loss (interfering with language acquisition), adventitious or late-onset hearing loss in childhood or adulthood, the elderly, those with unilateral hearing loss.

Those with early hearing loss that interferes with, but does not prevent, normal language acquisition, are candidates for “oral/aural” or “auditory/verbal” education, and can make use of an array of electronic technology that expands by the day. Those with late-onset hearing loss benefit enormously from self-help groups such as Self Help for the Hard of Hearing (SHHH) and the Association of Late-Deafened Adults (ALDA). Late-onset hearing loss can be a devastating affliction. Adaptation depends on, to some extent, premorbid personality and the choice of strategies: “specific communication strategies and accommodations to deafness, rather than deafness per se, may contribute to the presence of psychological difficulties in some individuals” (Knutson & Lansing, 1990). Elderly hard-of-hearing people are at risk of severe and often unnecessary social isolation. I cannot explain the reluctance of many elderly people to wear hearing aids, and neither can the many expert audiologists whom I know, who work with them every day. Reluctance is far too gentle a word— monumental obstinacy would seem to describe better the common clinical experience. One can only assume that unlike younger people, older people are either more irritated by aids or less helped by them. The powerful effects of unilateral hearing loss are not to be underestimated (Oyler, Oyler, & Matkin, 1988). Lacking the ability to time the arrival of information and therefore distinguish sounds coming from different directions, the person with unilateral hearing loss experiences all sounds as existing, essentially, within the functioning ear. This often creates anxiety, easy startling, and confusion. Many hard-of-hearing people have no awareness of the Deaf community. For others, however the Deaf community carries powerful meanings. As mentioned previously, many people who were raised orally deaf accept the notion that a child who cannot succeed orally is an “oral failure,” and that using sign language represents “giving in” to the deafness. Nevertheless, many orally raised people eventually seek out the Deaf community, begin to sign, and find a comfortable mixed identity, not quite Deaf but not quite hearing either. Early deafness seem to be sufficient condition for creating a sense of culture, shared experience, and wholeness, but somehow being hard of hearing does not. Although hard-of-hearing people far outnumber deaf people,

80

GULATI

there are no “hard-of-hearing pride” marches, no “hard-of-hearing president now!” campaigns, and no slogans, “the hard-of-hearing can do anything except hear,” as there are for deafness. Hard-of-hearing/deaf English professor Brenda Jo Brueggemann wrote beautifully on this subject, interspersing personal narrative with thoughtful analysis. Having always “passed” as hearing, she “began coming out” as deaf at 30 years of age, taking her first sign language class: “I cried mightily on the first night at the sheer thrill of not having to sit in the chair at the front and center of the classroom so I could ‘hear’ the instructor—cried for the simple freedom of choosing my own seat” (p. 96). Yet her identity remained “hyphenated” even after she thoroughly explored Deaf culture: “When the conversation needs to be a little more social than pizza delivery operators generally crave, I do my part well … I talk. And talk … Better to seem a bit of a flapjaw and self-centered than, lordy, deaf and dumb. That would embarrass us both” (Brueggemann, 1999, p. 249). An Even Briefer Note on Multiple Cultures Membership in the Deaf community does not negate membership in other cultural communities. Throughout this book we advocate acquiring knowledge about the unique features of Deaf culture. Sadly, counter to our bias in favor of diversity, we have had to restrict our focus to mainstream Deaf culture. Work with multicultural deaf people, “Deaf Plus,” according to the title of an excellent book on the subject, is a book in itself, and we must direct the reader to the suggested readings to learn more. Multiple cultures add multiple complications for the mainstream clinician, but can multiply interest too. It may be necessary to add a spoken language interpreter to a family meeting, or to deal with a cultural belief that a disabled child reflects poorly on its parents. It may be necessary to find a sign language interpreter who can handle a dialect of ASL or a foreign sign language. The general principles are the same: take the extra time needed, take things one at a time, ensure respect for communication, and be ready to admit ignorance. THE CLINICAL SETTING Introduction Sit at a restaurant and sign to your companion. Invariably, the hearing people around you will unconsciously begin to gesture more dramatically as they speak. Conversely, place a deaf person in a hearing meeting, even with an interpreter, and that person will likely sign less expressively, and to reduce facial expressions. This phenomenon is perhaps at its most striking when deaf children are observed first with their families and then with deaf peers. Anyone who works in a setting where a number of deaf people are present knows

2.

PSYCHIATRIC CARE

81

the feeling of cultural and linguistic shifting that takes place when the percentage of deaf people in a room rises. The hearing psychiatrist creates a mini-environment in his office that will have the same facilitating or constraining effect on the deaf patient. (Even a deaf psychiatrist has to concern himself with this—see the epilogue to this volume.) (For issues of access to services, see Steinberg, 1991; Steinberg, Sullivan, & Lowe, 1998.) Interpreters Psychiatric care, more than any other branch of medicine, relies on language. Establishing rapport, gathering history, understanding the patient’s psychological life, obtaining informed consent for treatment, describing medication options, and providing psychotherapy are all linguistic tasks. Careful evaluation of subtle nuances of language, body language, and behavior are central to the psychiatrist’s art. Because so many deaf patients have damaged language skills, establishing good communication becomes the first and most important task of the culturally affirmative psychiatrist. Culturally Deaf patients look culturally Deaf—they show recognizable behavior patterns, facial expressions, and thinking style that can mislead the unprepared psychiatrist. In the clinical setting, it is therefore essential that a psychiatrist not fluent in the patient’s language and not knowledgeable about his culture accept the responsibility of ensuring skilled interpreting for every meeting with the patient. Relying on a partial knowledge of sign language is not appropriate. The only exception should be for an emergency or for a Deaf person with a high level of English skill who expresses a preference for written communication. Often, not wanting to cause trouble, Deaf people whose English skills are not comparable to their ASL skills will nevertheless say they can communicate in writing. In this situation, the psychiatrist can say, “I’d feel more comfortable with an interpreter than with writing.” Psychiatrists often feel that it should be someone else’s responsibility—the insurance company, the patient, the state agency that deals with the deaf—to arrange and pay for an interpreter. The Americans with Disabilities Act (ADA), however, requires that larger medical organizations take this responsibility and, as a practical matter, implies that individual practitioners and small groups should also. It is my view that the interpreter is serving the physician, helping to create an accessible environment that he or she is unable to provide alone. Hence, the responsibility for finding and scheduling the interpreter should rest with the physician, and should not be seen as the “patient’s problem.” At the same time, I believe that the cost of providing the interpreter should not fall entirely on the physician alone, because when it does, it can become expensive or even unprofitable for solo physicians to serve deaf patients. At this writing, there is no adequate solution for this problem, and each physician must make his own choices in this matter.

82

GULATI

All interpreters working in the psychiatric setting should be certified by the national registry, and should have extensive medical and psychiatric experience. Psychiatric and legal interpreting are perhaps the most challenging areas for interpreters, and are no place for inexperienced or uncertified interpreters. For children (whose ASL is more difficult to understand than adults’), patients with severely damaged language, or those with severe mental illnesses, an additional “Certified Deaf Interpreter” (CDI) may be necessary. A CDI is a Deaf person with extraordinary language fluency who can attempt to render the patient’s damaged language in American Sign Language, which the ASL interpreter can then translate into English. Nevertheless, “normal” conversation will still be challenging, often leaving the clinician with many gaps in knowledge about the patient’s internal state and understanding of the world. It is almost never appropriate for a family member to interpret a psychiatric contact. On the other hand, it can be very helpful to use family members as informants when piecing together a patient’s symptoms and history. Case Example A young deaf woman with language deprivation (first ASL exposure in her teens) and a psychotic disorder alleged that she was being sexually harassed. I did not feel competent to understand her allegations, given that she had both disordered thinking and disordered language. I therefore requested that a CDI join the session. After trying several different approaches, the CDI was able to establish with good certainty what had happened, and when. He did this by reference to the various holidays that had passed. The patient, whose language damage made recalling dates and sequencing events very difficult, was able to recall the parties and dinners that had accompanied each holiday, and to use that information to explain when the sexual harassment had occurred. The CDI used dramatic role play and highly simplified ASL to confirm what she had said. No such certainty could ever have been obtained by the average clinician working alone; the level of creativity that a skilled CDI brings to the act of communication is simply beyond the reach of most people. Unlike ordinary language interpreters in hospital settings, certified sign language interpreters and Certified Deaf Interpreters are highly trained, and follow a formal code of ethics. Their code dovetails well with psychiatrists’ ethical beliefs and boundary rules and therefore supports clinical mental health work. Essentially, the interpreter seeks to become an invisible conduit between patient and doctor. At first, this can feel awkward (for example, when the interpreter refuses to answer a direct question), but can readily be understood as reducing the possibility of transference to the interpreter, and enhancing the primacy of the relationship between doctor and patient. It is the physician’s responsibility to re-

2.

83

PSYCHIATRIC CARE

spect the interpreter’s code of ethics. This means avoiding asking the interpreter for information he may have about the patient from other settings, for an opinion on the patient’s language ability or mental state, or as a source of information about available deaf services. Some interpreters will choose to reveal such information, particularly in an emergency, but it is not appropriate for the physician to expect them to do so (The Committee on Disabilities, 1997). Most interpreters will hold a brief meeting with the physician before or after a session in order to discuss seating, lighting, and other general interpreting issues. Case Example For 6 months, an interpreter arrives and departs precisely on time for each therapy session that a psychiatrist, who is a beginning signer, holds with a fluent deaf man. Aside from a greeting and a good-bye, the interpreter makes no conversation with the physician. One day, the physician is paged urgently during a session, and responds using the office telephone. She is irritated when the interpreter signs her side of the telephone conversation for the patient. When she asks the interpreter about this, the interpreter explains that according to the code of ethics he is obligated to interpret all sounds that the deaf patient would experience if he were hearing, including phone conversations and environmental noises. He suggests that the psychiatrist should have left the room if she wanted privacy for her phone call. But he also notes that the patient had understood that the doctor’s phone conversation was private, and had respectfully looked away from the interpreter during the conversation. Nevertheless, the interpreter had continued signing. Many deaf patients feel traumatized in the area of communication, having endured very poor communication with previous physicians or authorities. This fact obligates physicians to be gentle, to take time to make sure that the patient is satisfied with communication, and even to be ready for initial hostility and mistrust around communication and cultural issues. Special Features of the Psychiatric Interview of Deaf Patients Obviously, there is considerable variation among the styles of different deaf people. Generalizations can only be guidelines. The following suggestions regarding clinical interviewing are made with this caveat in mind. Classic references concerning the assessment of deaf clients are Elliott, Glass, & Evans, 1987 and Pollard, 1998. ASL grammar includes raised eyebrows, shrugs, and upper-body movements. Ordinary ASL also includes strong demonstrations of facial expression and emotional expression. These should not be mistaken for tics, exaggerated emotions, mania, hypomania, histrionic behavior, or personal-

84

GULATI

ity disorder. ADeaf patient attempting to dramatize a situation may stand up and move from place to place while signing broadly—taking up a level of personal space that hearing people may associate with an actor on a stage. In addition, the story is likely to be told in full, with an expectation that it will be attended to. In a Deaf setting, such displays arouse smiles of pleasure, often with words of praise for the accuracy of the Deaf person’s mimetic portrayal of another person. (Be prepared for stingingly precise caricatures!) Often, in a Deaf setting, there is sympathy for the Deaf person’s attempts to make sense of a situation that was too complicated or too linguistically inaccessible to be understood. In a hearing setting, the same behavior might seem out of place and overdramatic, and the need to tell the story in full might seem self-involved, or disrespectful of the treatment team or clinician’s time constraints. The story might seem confused because of the Deaf person’s cultural assumption that the basic facts and context should be known to the listeners— this feature cannot be overemphasized, as it often leads to hearing people perceiving the deaf person as less skilled at communication and less competent than he actually is. Placed in a Deaf cultural milieu, such a patient is seen and valued quite differently. Serial 7s, serial 3s, or spelling world backwards are unreliable as tests of concentration or memory. For one thing, math and English spelling all too easily remind deaf patients of negative classroom experiences. I prefer to substitute asking the patient to list the days of the week in reverse order or to rely on digit span, which is a fairly reliable and nonthreatening test. All but the most language deprived deaf patients are aware of the numbers 1 to 9 and the days of the week. An enjoyable, Deaf-friendly measure of creativity is to use a traditional Deaf-cultural word game, such as naming all the signs one can think of that use a particular handshape, or creating sentences in which all the signs use just one handshape. These games are the rough equivalent of asking a hearing patient to list words that start with a certain letter or include a certain sound, or to create rhymes. Another consideration is that a patient’s lack of world knowledge or personal health knowledge can lead to poor self-care, making medical problems, which can sometimes reach advanced stages due to lack of care, more likely. Additionally, deaf patients’ previous medical care with family physicians and emergency rooms may have been compromised by poor accommodation of the patients’ communication needs. Solid medical evaluation and health education are therefore essential to the care of many deaf patients. Many moderate- to higher-functioning patients feel very comfortable on the Internet, and can make use of information that is available there (Deaf people were early and enthusiastic users of e-mail and the other functions of the internet). All deaf patients benefit from visual information such as diagrams, careful explanations of medical words, and being given enough time to ask questions. Deaf patients usually respond well to visual tools and visual assessments. I frequently use lines with hatch marks to allow patients to rate how

2.

PSYCHIATRIC CARE

85

they feel in different situations (Fig. 2.1). Self-portraits, family portraits, the Draw-A-Person Test, and the Person-House-Tree Test can be extremely useful. It is not uncommon for deaf children’s self portraits to be extremely evocative. A typical family drawing, when the child is signing and the parents are not, shows the parents without arms, and sometimes the child without a mouth. Figure 2.2 shows a drawing of this type. Hearing aids, cochlear implants, and family constellations are often dramatically illustrated also. For instance, a child who was running the show in his family drew himself in the sky, towering over his parents and siblings. Another child who felt profoundly isolated drew himself on one page and the rest of his family on another. HAPPY—————-X————————————————————-SAD FIG. 2.1

Information Gathering and Documentation Information gathering is a crucial aspect of seeing Deaf patients. Due to lack of interpreters in the past, fear of physicians and surrendering control to an accompanying hearing person who asks all the questions, lack of health knowledge, or language problems, many Deaf patients have difficulty describing their past medical and psychiatric histories. Relying on their memories is a risky practice. In addition to the usual comprehensive review of old psychiatric records, other pertinent information includes: 1. Complete educational records, including preschool and early intervention programs, 2. Reports of psycho-educational tests and academic tests, 3. Audiologic evaluations, which can show if the patient’s hearing level has changed over time, affecting the patient’s ability to use spoken versus signed language, 4. Results of language testing, both spoken and signed, 5. An extensive family history that includes possible genetic disorders, 6. Prenatal and early developmental history, 7. Information about the signing ability of family members, including extended family, and important others in the patient’s life, 8. Aclear history of the type and quality of language exposure at each age. It is essential in evaluating a language-deprived patient to gather information from reliable sources about the exact type of education that the patient had at each age from diagnosis forward. Of particular interest is the age at first sign language exposure and the quality and type of exposure the person had along the way. This history can be thought of as a time line.

86

GULATI

FIG. 2.2

Family portrait by signing deaf child.

For example, this patient has mild language deprivation: “The patient was first diagnosed at age 2, after not developing any spoken language, and had one hour of sign language a week during early intervention. Initial placement was in a mainstreamed preschool program with a hearing teacher, who signed while speaking. At age 6 she was transferred to a residential school program. She is now considered generally fluent, although with some grammatical deficits and difficulty with written English and finger spelling.” Psychiatric reports on deaf patients should include an account of the writer’s level of cultural competence, the extent to which interpreters were used, and the potential uncertainties introduced by the cultural divide between psychiatrist and patient. It is most respectful to use the nomenclature preferred by the majority of Deaf people: When capitalized, the word Deaf signifies cultural deafness. When it is not capitalized, it is a neutral adjective. Hearing impaired should be avoided because some deaf people find it derogatory, although others, particularly the late-deafened, are comfortable with it. Deaf and dumb and deaf-mute should never be used, as they are now considered offensive by most deaf people (The Committee on Disabilities, 1997; Moore & Levitan, 1993). The patient’s spoken language should be referred to as lip reading, speech reading, spoken language and speech, rather than language alone.

2.

PSYCHIATRIC CARE

87

TREATMENT Culturally Affirmative Treatment The first step in providing care to a culturally deaf person is creating an environment in treatment and promoting an environment in the school and home that is communication accessible and culturally affirmative. When these goals cannot be completely met, intention and attitude go a long way. For example, a family can attend sign language classes regularly, meet with other parents of deaf children, make an effort to meet and know deaf adults, and attend Deaf cultural events. None of these activities will make them into fluent signers or attune them perfectly to deaf culture, but the deaf child will feel respected and loved. Similarly, a mainstream school program can be willing to honestly assess its own effectiveness in teaching a deaf child, perhaps replacing an educational interpreter whose skills are inadequate, hiring a teacher of the deaf, having a deaf aide or tutor, and teaching sign language to the hearing peers. (The Scandinavian educational system provides an excellent model in this regard; teachers voluntarily submitted to sign language evaluations, and if unable to do well enough, left their positions. See the section on bilingual education discussed previously.) A residential program for mentally retarded deaf people can promote a basketball league and take its clients to Deaf community events, even if all its staff can’t be fluent signers. Before the 1970s, when the movement for Deaf civil rights brought Deaf people’s views widespread attention, psychiatric thinking about deafness took a pathological view. In the psychoanalytic literature, for example, deafness, even congenital deafness, was assumed always to represent a loss to the individual. This view is hard to sustain after actual experience with congenitally deaf people, who tend to describe their deafness as intrinsic to their being, like eye or skin color, and who rarely seek “treatment” for their deafness such as cochlear implantation. Can one lose what one never had? Other psychiatrists theorized that deafness is a form of sensory deprivation, and might cause paranoia and worsen psychosis. There has been no research support for this idea or for the idea that there is an immature and impulsive “deaf personality,” a natural consequence of early deafness. However, deaf children who are deprived of usable communication, and therefore normal developmental experiences, do show emotional, social, cognitive, behavioral, and personality disturbances. The medical approach of pathologizing deaf people, combined with the inability of most physicians to sign and their lack of exposure to healthy Deaf people, has led to serious medical errors. For example, numerous deaf children have been incorrectly diagnosed as mentally retarded and then institutionalized, sometimes for decades, without language access. Deaf people are often incorrectly diagnosed as psychotic when their language, behavior, or beliefs are misunderstood, or with ADD in classrooms that do

88

GULATI

not meet their educational needs. On the other hand, due to inaccessibility and to the mistrust some Deaf people feel toward the mental health system, Deaf people too easily fall through the cracks, and serious disorders can go undiagnosed and untreated (Steinberg, 1991). Given the especially broad range of skills and needs that deaf patients bring to treatment, every treatment modality must be carefully evaluated for its effectiveness for the given patient. For example, there is little point using an insight-oriented therapy in the early treatment of a young person struggling with an explosive disorder. After medications and behavioral planning have ended the explosiveness, however, the patient might benefit from such a therapy to help mourn losses and prepare to move forward to a higher level of functioning. There are more psychologically unsophisticated deaf people than there should be, due to language deprivation, vulnerability to childhood trauma and neglect, and other obstacles deaf children face in developing normally. Their treatment is discussed in depth in chapter 4. Characteristics of Deaf culture (such as interpersonal bluntness) can be incorporated into every treatment (see the epilogue). The positive power of Deaf cultural identity as a healing force should not be underestimated, as illustrated in the following example: Case Example A 19-year-old Deaf man was being educated in a mainstreamed setting. Although calm at school, where his communication needs were generally met, he had great difficulty at home, where his father was unable to sign with him, and his parents had not yet grieved or recognized his significant cognitive deficits. When he would explode at home, he would often gain his father’s attention in the form of physical holding and restraint. Hospitalized after a rare episode of aggression at school, the patient learned from Deaf staff of the existence of Deaf residential schools, and set his mind on completing his education in one. Staff told him he had a right to fight for this, but that he shouldn’t be too hopeful, given his local education system’s reluctance to fund out-of-area placements. He stood firm, and endured a 1-year battle that ended in victory at a mediation hearing. In front of the judge the young man used clearer language and sharper thinking to explain his reasons for wanting to attend the Deaf school than any of us knew he was capable of. By the end of the hearing, the judge was in tears. The following sections highlight major treatment issues with deaf patients. Behavioral Planning Behavioral planning is useful for patients who have language deprivation, organic brain damage, or a history of experiencing inconsistent or unrea-

2.

PSYCHIATRIC CARE

89

sonable limits. It is also useful with “normal deaf” children and adolescents whose environment is not fully communicative (e.g., parents who don’t sign well). In that situation, the behavior plan serves as a simplified, clear structure for house rules and behaviors that can function even when communication is minimal. In an inpatient setting, behavior plans are usually created collaboratively, with one discipline (often psychology or nursing) having responsibility for writing out the plan. The entire team then attempts to apply the plan consistently. Usually, this first effort fails in some way, requiring staff to consider countertransference responses or to evaluate the extent that the patient splits staff or attempts to “wiggle out” of the plan. The plan gets rewritten and modified; if everyone keeps their focus, the eventual success rate can be quite good. (See the section in chap. 4, however, which points out that behavior plans can only motivate a patient to use skills she already has. Clients also need to be taught new skills.) In outpatient work with children and adolescents, well-made behavior plans can be very useful (my success rate over the past 3 years is about 80%). Many parents feel a need to be especially gentle with their deaf children, especially if the child is developmentally delayed in some way and therefore seems like a younger child. This softness can translate into an out-of-control child. I usually spend four to six sessions preparing the family to start the plan. The typical preparation (assembled eclectically from a host of readings, supervisors and colleagues over the years, and refined to match the needs of many families with deaf children) contains the following elements: 1. Children want to do well, to feel mastery over their own behavior, and to win the approval of surrounding adults. 2. Children experience limits quite differently from punishment. “Imagine that you were learning to drive on a winding road. Would you learn more quickly if the edge of the road was soft bushes or if it was a concrete barrier that might scratch your car? The concrete barrier is firm discipline and the road is good behavior—a firm limit helps children concentrate and learn good behavior faster.” 3. The behavioral plan belongs to the child. If capable, the child should write out the plan, and it should be posted in his or her room. 4. Using a behavior plan is as challenging for the parents as for the child. Parents need to be emotionally neutral in their application of the plan, and often need to work very hard to restrain impulses to nag, criticize, or remind the child, or in more serious cases to explode, physically threaten, or abuse the child. 5. The plan begins with the parents (and usually the school) brainstorming the most troublesome behaviors, and selecting from these a small set of target behaviors that are clearly observable and measurable. (For example, “good listening” is less easily measured than “not hitting.”)

90

GULATI

6. The plan does not attend to attitude, only to behaviors. I urge parents to be satisfied with behaviors. “It doesn’t matter if he’s grumpy when he gets up and makes the school bus on time. He gets a star if he does it.” 7. The number of target behaviors, choice of rewards, frequency of logging behaviors, and frequency of rewards are all flexibly determined based on the needs and capacities of the child and family, and the severity of the target symptoms. I avoid punitive and overly complex token economy plans. Many deaf children have already felt traumatically punished by even inadvertent communication traumas (“wait, wait, we’ll tell you what we’re talking about later”). Plans that are too complex can lead to disagreements and misunderstandings, making treatment more difficult. An ideal reward is a special activity with a parent or other family member (as long as this does not play into specialness or sibling rivalry). The patient has a large say in choosing the reward, but parents are told that they do not need to be extravagant, and have every right to explain the need for limited rewards if resources are slim. The patient also participates in the wording, and to some extent in the choice, of rules. This is often an issue with late adolescents, who feel they have a right to take advantage of the family’s computer, cars, and telephone, but need not reciprocate by following rules or doing chores in the house. I tell them bluntly, “it’s your parents’ house, and they have a right to set the rules. Yes, you’re old enough to make your own rules, and if you want to do that you can move out and support yourself.” This issue is intense for deaf teens because, first, they are often in high school and living at home until age 22 under special education law, and second, they have often developed the habit of relying on their parents excessively, which increases the tension everyone feels as they seek to detach. 8. Parents are the arbiters of whether a behavior has or has not occurred. However, the child has the right to object, and also to note if the parent violates the agreement to remain emotional and noninterfering in applying the plan. These complaints are brought back to the session, where the therapist’s attention to the child’s complaints (even if he does not agree with them) can send powerful messages to the entire family about respect, fairness, and reasonable expectations. Improvements typically appear after a 4- to 8-week period in which the parents must learn to use the plan and the child tests whether they intend to stick with it. After that point, the child can “graduate” to the next level of the plan, new target symptoms can be added, and the plan can continue in modified form for many months or even years. I recommend holding a small party to celebrate each small success. Patients with language or cognitive problems may benefit from behavior plans indefinitely. Frequent review of the plan’s effectiveness (which is best judged by objective behavioral logs) is essential.

2.

PSYCHIATRIC CARE

91

Medications In my experience, deaf patients of every age are too often over-medicated. (See the earlier discussions in regard to ADD and psychosis). I suggest the following approach: • General caution in the use of medications, particularly when the diagnosis is in doubt. It is not unusual for a change of educational setting, teacher, interpreter, appropriate therapy, or behavioral treatment suddenly to obviate the need for medication. Those who work with deaf children usually have fewer resources and options, resulting in an increased pressure on the physician to medicate in search of a solution to the problem. Fending off this pressure requires tact and a firm explanation that taking additional time to observe symptoms and feel sure of a diagnosis is in the patient’s long-term interest. • Selection of target symptoms and use of behavioral logs. • Careful evaluations on and off medications (with blind trials if possible). • More frequent appointments, appropriately interpreted (see The Clinical Setting, earlier in this chapter), attended by collateral informants, family members, and so on, to maximize the breadth of observational data. • Extensive collateral and historical information gathering. Deaf people in general are underdiagnosed and undertreated; ferreting out possible diagnoses can be quite worthwhile. • Appropriately modified informed consent. If the patient has a guardian, education is still very helpful, particularly in improving compliance and a feeling in the patient of not being coerced into treatment. For example, one might draw a chart showing the pills in the correct colors and the clock time at which each will be taken, or even show the patient the actual pills. • Thorough documentation, particularly of completed trials that were ineffective, which will save future clinicians the trouble of repeating a medication trial. Psychotherapy Psychotherapy with deaf children, adolescents, and adults who have normal cognition and strong language skills is similar to a hearing therapist’s work with hearing patients. There is an extra layer of issues related to the patient’s life experience as deaf, both the past developmental experience, and the current experience of employment, relationships, Deaf and hearing world contact, and so on. Patients bring an enormous variety of deafrelated issues to therapy, such as: • Deaf–hearing relationship issues, • Issues with assertiveness relative to accommodations at work,

92

GULATI

• Issues of degree of obligation to serve the Deaf community versus needing to care for oneself, • Issues of parenting hearing children, • Sexual, physical, and emotional abuse, • Identity issues, • Family of origin issues (“How do I let go of the way I grew up?”), • Professional advancement issues (“I don’t want to be a poster Deaf person. I want to be happy.”). There is also a place within minority-community thinking for tremendous aliveness and joy—perhaps members of a minority community do not have the luxury of complacency about their place in the world. As a general rule, the therapist’s hearing status, and the patient’s reaction to it, is a significant part of the therapy. Culturally affirmative psychotherapy is richly explored elsewhere: Culturally Affirmative Psychotherapy with Deaf Persons (Glickman & Harvey, 1996; see also Elliott, Glass, & Evans, 1987). This issue need not be discussed in detail here. Suffice it to say that patients with any degree of language or cognitive damage should be seen by signing therapists who are experienced in deafness, and that hearing therapists who work with an interpreter must wear their ignorance about deafness on their sleeves. However, there is a collaborative role for the psychiatrist as supervisor of nondeaf-related therapy issues that might arise when a signing, but perhaps less clinically experienced, therapist is working with a deaf patient. My own hearing loss and hearing aids are seen differently depending on the patient’s background. Younger children and those from residential school programs are nonplussed; they match their language to mine and leap enthusiastically into therapy. Older children, and those from mainstreamed settings who have had less contact with deaf adults, are often deeply moved and curious. Adults are usually pleased, but their reaction can vary depending on their self-concept as deaf people. This subject, of “intracultural” rather than “cross-cultural” work in deafness, is covered in detail in “When the Therapist is Deaf,” the epilogue of this volume. Working With Families Working with families with deaf members can be the most rewarding work in deafness. With hearing family members, culturally affirmative family therapy involves assisting the family in coming to terms with having a member of a linguistic and cultural community in their midst—and figuring out how best to respectfully accommodate that member while maintaining normal family structure. This issue may be the entire focus of a family therapy. Other typical issues that arise include: • Parents struggling with advocating for the educational needs of their deaf child, who need support and guidance through the special education maze.

2.

PSYCHIATRIC CARE

93

• Parents struggling with parenting a child with linguistic delay, cognitive delays, or other challenges (see Jamieson, 1994; Koester, 1992; Koester, 1995; Spencer & Meadow-Orlans, 1996). • A child who is frustrated and negatively experiencing parental control due to poor parental communication skills and lack of a visual environment (e.g., flashing doorbell, captioned television). • A child who is running the household due to his “specialness.” (One of the great advantages of the cultural approach to deafness is that it reduces the sense of specialness that often accrues to disability, perhaps as a reaction formation to parental guilt. A normal Deaf child can be told to go to his room just like anyone else.) • Parents struggling to let go of a controlling, negative style of parenting. • Parents struggling to set fair expectations, boundaries, and rules for their deaf child. (Children with a language delay, in particular, can have impulses toward independence that are not matched yet by their linguistic skills or world knowledge, leading to painful dilemmas for parents.) The psychiatrist, particularly the child psychiatrist, often has an interventionist role when working with parents who are having difficulty learning to sign. “There is abundant evidence that those deaf children who are most competent in social, cognitive, and language development are those who participate actively in linguistic interactions with their parents from an early age” (Vaccari & Marschark, 1997). Parents can be reassured with the results of a study that concluded that even limited parental signing may be adequate to promote language acquisition (Spencer, 1993a). Children’s language outcome in another study correlated strongly with their fathers’ attitudes toward deafness (Hadadian & Rose, 1991). The opinions of parents in the British study can also be usefully shared with parents of younger deaf children. With the benefit of hindsight, the British parents generally: • Felt cheated by the early advice not to sign with their children (recall that these children were severely to profoundly deaf, so that the oral approach was successful for only a few of them). They felt left out of their children’s new lives as Deaf young adults. • Emphasized communication first and foremost, whatever the medium, but saw the need for both sign language for easy, natural, and in-depth communication, and English literacy for contact with the hearing world. • Understood the advantages of special schooling with other deaf children (to prevent isolation, to develop a healthy identity as a deaf person, and for deep friendships) and of mainstreaming (i.e., there’s no one right answer for every family and every deaf child). • Expressed a need for emotional support from professionals along with medical information, for careful, unbiased, assessments preceding

94

GULATI

school placement, and for information about the choices available to them, rather than simply being told what to do. • Wanted help with grieving and acceptance, especially in giving up the fantasy of having a “normal” child. They wished that the professionals that worked with them had focused more on deaf people’s potential, and had showed more flexibility, empathy, and healthy ignorance when necessary (Gregory, 1995; Gregory et al., 1995). Case Example Eric is a 20-year-old high school junior referred for family and individual therapy. He smokes marijuana at home and at school, and has explosive arguments with his family. His parents are reluctant to call the police even when he is dangerous because of their social standing and their long history of seeing him as a special-needs child requiring extra attention and care. At the same time, they strongly disapprove of his behavior, and often think of asking him to leave their home. Eric responds with anger and fear to their frequent threats of eviction, or with an arrogant attitude based on “knowing they don’t mean it.” Over a period of 1 year, they are gradually able to establish house rules and a behavior plan. Sharing Care: Cotherapy and Teamwork A highly effective interview and treatment strategy for many deaf patients, particularly those with language, cognitive, or behavior problems, is to see the patient with the assistance of another provider, professional, or paraprofessional. Complicated cases require teamwork with members of the team often coming from multiple agencies and disciplines, and sometimes having different agendas for the client. The psychiatrist is well positioned to coordinate and to mediate. Case Example A mentally retarded deaf patient is always accompanied to his outpatient psychiatric appointment by a Deaf residential worker from his group home. This worker provides a summary of the patient’s symptoms, behaviors, performance at work, participation in social events, and family contacts in the past month. The patient observes this interaction, and adds comments (e.g., “Yes, that party was so much fun. I wore make-up, and danced!”) When the patient signs, the residential worker is available to add context that may be missing, to clarify references of name signs, and to model comfort in talking with the doctor. Sometimes, the residential worker is surprised by something the patient has saved to tell the doctor, or sees a different side of the patient during the interview. The psychiatrist’s interventions

2.

95

PSYCHIATRIC CARE

and attitudes help the residential worker stay nonjudgmental about a behavior plan issue. The residential worker’s style of working with the patient helps the psychiatrist understand how the patient thinks, and resolves a diagnostic issue. One of the greatest advantages of this approach is that it gives the patient the opportunity to observe the formal interaction between the authorities who are responsible for him. This allows the patient to be reinforced in knowing what others find important in his behavior, e.g., sexual inappropriateness; to feel less oppressed by authority, seeing its workings clearly; and to experience caring and support from a group, contributing to a sense of belonging. A patient who is on a behavior plan, for example, can feel proud as his accompanying provider describes the recent month’s improvement in behavior to the psychiatrist. Another form of cotherapy is to split a family case within an agency. Case Example A deaf mother presents with two hearing children who need treatment for Attention Deficit Disorder. The deaf clinician works with the mother individually and for parenting, and locates a hearing clinician who can diagnose and treat the children. Parenting skills sessions are held with both clinicians and a sign language interpreter present. When one clinician is hearing and one deaf, this has a powerful effect for hearing family members or outsiders such as employers. The cotherapists have the opportunity to model the respect for communication that the patient may need from family and others. Case Example A hearing family attends an inpatient unit family session regarding their hospitalized deaf son. There is an interpreter present. The family members are somewhat taken aback by the amount of time the two clinicians spend arranging lighting, taking turns, and, most of all, carefully explaining each point to the young deaf man. At first they feel flustered by the cotherapists’ use of a “communication ball”—an easily thrown ball that identifies the speaker and ensures turn-taking, allowing the deaf person always to know who is speaking and preventing people from interrupting or talking over one another. The patient responds to the level of communication access and respect with unexpectedly trenchant questions for his family, showing them a higher level of functioning than they had thought he was capable of. “I guess at home most of this just goes over his head,” one family member comments.

96

GULATI

The careful use of informants in and out of the session is almost essential to the care of patients with severe mental illness, language problems, or behavior disorders. The psychiatrist should be careful not to over-rely on untrained workers’ impressions of a patient’s mental function. On the other hand, the psychiatrist also should not discount what collateral observers, particularly deaf people and family members, have to say. The best work seems to occur in friendly, respectful collaboration, where each person, professional, family member, or friend contributes to establishing diagnosis and providing treatment. The hierarchical model in which some psychiatrists function is less successful in treating any but the highest functioning deaf patients. Creativity and Humor Really good work with behaviorally disturbed deaf people is creative and often humorous. Numerous examples of creative engagement with patients appear in the chapters of this book. Ray Stevens, the director of the program for socially and emotionally disturbed children at the American School for the Deaf, contributed the following examples: Case Example One day I was sitting in my office when Dean (a hard-of-hearing 18-year-old who had entered the program from jail) burst through the door screaming expletives about every staff member on the floor. He paced back and forth in front of me, yelling and signing “F-ing teachers, F-ing this, and F-ing that.” My self-preservation instincts told me not to get up so I simply leaned back in my chair, put my feet up on my desk, and sought his attention by signing, “Where? Where are the tickets?” It eventually registered with him that I was asking him something that didn’t make sense. He paused, looked at me, and said, “What tickets?” to which I replied, “The tickets for the show you are giving me. You forgot to sell me tickets for this show.” He stopped dead, cogitated, looked at me, sat down, and then said, “You always win. Are you smarter than me?” to which I replied, “I don’t know if I am smarter than you but if I use my intelligence and you use your emotions, I win.” After he calmed down, he went to in-house suspension for his outburst. Fourteen months later he graduated with a high school diploma and entered a junior college program. Case Example Bob, a profoundly deaf 18-year-old, was a gentle soul who wanted to graduate, get a job, and support his mother and grandmother. Unfortunately he was cursed with a bad temper and burdened with limited language skills. He had an intense desire to learn how to control his anger. His outbursts, al-

2.

PSYCHIATRIC CARE

97

though rare, were usually so violent that furniture, staff, and peers were not safe. The morning after one particularly bad episode I asked him to come to my office. As usual he entered apologetically, calmly, and ready to be engaged. Without introduction, I asked him if he knew what a short fuse was. He did not. From behind my filing cabinet I extracted an empty paper towel roll that I had asked a staff member to decorate like a large stick of dynamite. With the “stick of dynamite” I demonstrated how the length of the fuse determined how quickly it exploded. With the fabricated stick of dynamite sitting on the top of my head and the glass of water in my hand, I showed him that he had to learn how to pour the water on the fuse before the dynamite exploded. (I didn’t actually pour the water on my head, although I should have!) He signed “Neat,” laughed, hugged me, and promised that he would use this “image” (hands forming a ball on the right side of his forehead and then expanding into a large explosion as he watched) to control his temper in the future. Bob had a few more outbursts but never with the same intensity, and we always had a frame of reference for future discussions about his temper. With consistent feedback, good counseling, and a supportive staff, his anger management overcame his anger. A year later he graduated and is now working locally. He is engaged and will marry soon (Stevens, 2002, personal communication). Transference and Countertransference The most important transference reaction that the culturally hearing psychiatrist must master is the patient’s seeing the psychiatrist as a member of the oppressive majority culture. This can take many forms, including treatment noncompliance, angry outbursts based on experiences with other hearing people, a near-paranoia about the physician’s trustworthiness and integrity, a bullying, derisive stance—“you don’t know anything about deafness,” an unwillingness to give credit for the psychiatrist’s help, or even idealization and adulation. Handling such transference reactions requires keeping an even keel, being willing to put feelings on the table, and hanging onto one’s clinical expertise even while admitting ignorance of the full nature of deafness. Thirty years ago, pioneers Hilde Schlesinger and Kathryn Meadow noted that “professionals competent in dealing with other problems and handicaps seem to lose their competencies when they deal with deaf clients” (Schlesinger & Meadow, 1972, p. 213). Psychiatrists, like all physicians, are trained to seek certainty; we wish to establish diagnoses, and then tailor treatments to these diagnoses. This chapter has suggested carefully filtering clinical information through knowledge of deafness before making a diagnosis. Even with painstaking work, however, one is often left with clinical uncertainty. This does not need to make one feel less competent as a psychiatrist. It does far more harm than good to make a hurried diagnosis, to use a family member’s re-

98

GULATI

port as a substitute for a clinical interview, or to begin a medication without being sure of diagnosis. We should heed Hippocrates’ dictum: “I will not be ashamed to say ‘I know not.’” It is easy to become either overly enamored of the fascinating aspects of Deaf culture, to develop rescue fantasies toward deaf clients, or to become angrily dismissive of the whole impossible business of trying to provide help across cultural lines. These and similar issues are nicely addressed by Hoffmeister and Harvey, who asked, parodying the old idea of a “psychology of deafness,” “Is there a psychology of the hearing?” (Hoffmeister & Harvey, 1996). Their chapter is required reading for hearing people who work in deafness. A simple psychiatric emergency room visit can last hours longer with a Deaf patient, as everyone waits for the ASL interpreter to arrive. Then the patient carefully arranges seating so that the interpreter is well-lit, establishes communicative needs, digresses through Deaf-cultural pleasantries, and finally reaches the issue at hand. A psychiatrist doing this work can experience positive camaraderie with interpreters and others who often extend themselves to provide the care deaf people need. But the perseverance and patience required to ensure good care are often extraordinary. It is difficult to avoid the need to advocate for one’s patients. Whether this means convincing an insurance company to authorize additional days in the hospital, agitating to make sure one’s clinic is accessible and deaffriendly, making phone calls to locate a sign language interpreter, or convincing other clinical staff that the deaf patient cannot benefit from a highly valued group therapy, the psychiatrist can feel a heavy burden. All too often, insurance companies, administrators, and mental health peers are unable to appreciate the special needs and additional costs involved with caring for deaf patients. It can be very difficult to fend off the demand that diagnoses be made and medications be started within hours or days of arrival in an inpatient setting or within a handful of outpatient visits, before old records have arrived, adequate interpreted interviews have taken place, or collateral contacts have been properly interviewed. Institutional pressures are often intense. Physicians who frequently see deaf patients can find themselves blamed for their patients’ behavior, expected to respond instantly and at all hours to the needs of deaf patients anywhere in the region, and pressured to keep up productivity demands that are untenable given the amount of time these patients can require. I’ve been through this myself, and can only counsel stalwart advocacy to the best of one’s ability and seeking adequate support from colleagues, particularly those also in the field of deafness, to prevent overwhelming frustration and burn-out. The risk of burn-out is greatly increased when the physician is in a solo or small-group practice required to pay for interpreting, thus earning less for working more. More than one psychiatrist has begun to work in deafness only to give up in frustration. On the other hand, when the pressures can be mastered and the patients express their relief

2.

PSYCHIATRIC CARE

99

and gratitude at finally being treated well, I am unable to imagine anything more satisfying. SUGGESTED READINGS Deaf Culture and History The Mask of Benevolence: Disabling the Deaf Community (Lane, 1992) A Journey into the Deaf-World (Lane, Hoffmeister, & Bahan, 1996) Train Go Sorry (Cohen, 1994) Deaf Empowerment: Emergence, Struggle, and Rhetoric (Jankowski, 1997) When the Mind Hears: a History of the Deaf (Lane, 1984) Seeing Voices: A Journey into the World of the Deaf (Sacks, 1991) Cultural and Language Diversity and the Deaf Experience (Parasnis, 1998) I See a Voice (Rée, 1999)

American Sign Language Everyone Here Spoke Sign Language (Groce, 1985) The Signs of Language (Klima & Bellugi, 1979) Language in Motion (Schein & Stewart, 1995)

Linguistics The Language Instinct (Pinker, 1994) Patterns in the Mind (Jackendoff, 1994)

Language Deprivation A Man Without Words (Schaller, 1991)

Education & Psychology Psychological Perspectives on Deafness (Marschark & Clark, 1993) Psychological Perspectives on Deafness, Volume 2 (Marschark & Clark, 1998) A Case About Amy (Smith, 1996) For a Deaf Son (Tranchin, 1994)

Parenting Kid-Friendly Parenting With Deaf and Hard of Hearing Children (Medwid & Weston, 1995) You and Your Deaf Child: A Self-Help Guide for Parents of Deaf and Hard of Hearing Children (Adams, 1997) Raising and Educating a Deaf Child (Marschark, 1997) The Silent Garden: Raising Your Deaf Child (Ogden, 1996)

Clinical Work Culturally Affirmative Psychotherapy With Deaf Clients (Glickman & Harvey, 1996) Psychotherapy With Deaf and Hard of Hearing Persons (Harvey, 1989)

100

GULATI

Mental Health Assessment of Deaf Clients: A Practical Manual (Elliott Glass, & Evans, 1987) Psychotherapy With Deaf Clients From Diverse Groups (Leigh, 1999) Deaf Plus: A Multicultural Perspective (Christensen & Delgado, 2000)

CONCLUSION A late-deafened colleague, a therapist, wrote “so much of our work is centered around issues of loss. I think that having experienced loss, grieved it, and moved on with an enriched sense of self, I am able to bring this to my work: a belief that working through our losses is both possible and ultimately rewarding, that we find a richness at the end of it we never would have otherwise had. I’m not afraid to go through that with my clients.” I share her feelings. My work in deafness began as an attempt to make a virtue of necessity, as I lost my own hearing. Gradually, with the help of a number of extraordinarily supportive friends, colleagues, and institutions it has evolved into an absorbing career of clinical work, teaching, advocacy, and research. It is my profound hope that this chapter will contribute to more sensitive, competent psychiatric care by those who have not had my good fortune of landing, both professionally and personally, a little like Alice in Wonderland, in the extraordinary world of the Deaf. REFERENCES Adams, J. W. (1997). You and your deaf child: A self-help guide for parents of deaf and hard of hearing children (2nd ed.). Washington, DC: Gallaudet University Press. Baker, A. E., & van den Bogaerde, B. (1996). Language input and attentional behavior. In C. E. Johnson & J. H. V. Gilbert (Eds.), Children’s Language (Vol. 9, pp. 209–217). Mahwah, NJ: Lawrence Erlbaum Associates. Baynton, D. C. (1996). Forbidden signs: American culture and the campaign against sign language. Chicago: University of Chicago Press. Behrman, R. E., Kliegman, R. M., & Jenson, H. B. (Eds.). (2000). Nelson Textbook of Pediatrics (16th ed.). Philadelphia: Saunders. Berent, G. P. (1996a). The acquisition of English syntax by deaf learners. In W. C. Ritchie & T. K. Bhatia (Eds.), Handbook of second language acquisition (pp. 469– 508). San Diego, CA: Academic Press. Berent, G. P. (1996b). Learnability constraints on deaf learners’ acquisition of English wh- questions. Journal of Speech and Hearing Research, 39(3), 625–642. Bernstein, M. E., & Martin, J. (1992). Informing parents about educational options. How well are we doing? American Annals of the Deaf, 137(1), 31–39. Bonvillian, J. D., & Siedlicki, T. J. (1996). Young children’s acquisition of the location aspect of American Sign Language signs: Parental report findings. Journal of Communication Disorders, 29(1), 13–35. Borges, J. L. (1995). Blindness. In P. Lopate (Ed.), The art of the personal essay (pp. 377–386). New York: Anchor. Brinich, P. M. (1980). Childhood deafness and maternal control. Journal of Communication Disorders, 13, 75–81.

2.

PSYCHIATRIC CARE

101

Brueggemann, B. J. (1999). Lend me your ear: Rhetorical constructions of hearing loss. Washington, DC: Gallaudet University Press. Campbell, R. (1997). Read the lips: Speculations on the nature and role of lipreading in cognitive development of deaf children. In M. Marschark, P. Siple, D. Lillo-Martin, R. Campbell, & V. Everhart (Eds.), Relations of language and thought: The view from sign language and deaf children (pp. 110–146). New York: Oxford University Press. Challenging case: Parental request to withhold a hearing test in a newborn of deaf parents. (1999). Developmental and Behavioral Pediatrics, 20(3), 177. Charlson, E., Strong, M., & Gold, R. (1992). How successful deaf teenagers experience and cope with isolation. American Annals of the Deaf, 137(3), 261–270. Christensen, K., & Delgado, G. (Eds.). (2000). Deaf plus: A multicultural perspective. San Diego, CA: Dawn Sign Press. Cohen, L. H. (1994). Train go sorry. Boston: Houghton Mifflin. Cohen, N., & Waltzman, S. (1996). Cochlear implants in infants and young children. Seminars in hearing, 17(2), 215–221. The Committee on Disabilities. (1997). Issues to consider in Deaf and hard of hearing patients. American Family Physician, 56(8), 2057–2064. Coryell, J., Holcomb, T. K., & Scherer, M. (1992). Attitudes toward deafness. American Annals of the Deaf, 137(3), 299–302. Crouch, R. A. (1997). Letting the deaf be Deaf: Reconsidering the use of cochlear implants in prelingually deaf children. Hastings Center Report, 27(4), 14–21. Davies, S. N. (1991). The transition toward bilingual education of deaf children in Sweden and Denmark. Sign Language Studies, 71, 169–195. Davis, J. (1991). Signing and total communication. Paper presented at the 102nd Ross Conference on Pediatric Research, Tucson, AZ. Education for All Handicapped Children Act of 1975 (PL 94–142). Elliott, H., Glass, L., & Evans, J. W. (Eds.). (1987). Mental health assessment of deaf clients: A practical manual. London: Taylor & Francis Ltd. Emmorey, K., Corina, D., & Bellugi, U. (1995). Differential processing of topographic and referential functions of space. In K. Emmorey & J. Reilly (Eds.), Language, gesture, and space (pp. 43–62). Hillsdale, NJ: Lawrence Erlbaum Associates. Emmorey, K., & Reilly, I. (Eds.). (1995). Language, gesture, and space. Hillsdale, NJ: Lawrence Erlbaum Associates. Feller, L. C. (1999, August I). With implant, she doesn’t miss a beat. New York Times, Connecticut Weekly Desk. Fischer, R., & Lane, H. (Eds.). (1993). Looking back: A reader on the history of deaf communities and their sign languages (Vol. 20). Hamburg, Germany: Signum Press. Folven, R. J., & Bonvillian, J. D. (1991). The transition from nonreferential to referential language in children acquiring American Sign Language. Developmental Psychology, 27(5), 806–816. Foster, S. B. (1998). Communication experiences of deaf people: An ethnographic account. In I. Parasnis (Ed.), Cultural and language diversity and the deaf experience (pp. 117–135). Cambridge, UK: Cambridge University Press. Fryauf-Bertschy, H., Tyler, R. S., Kelsay, D. M. R., Gantz, B., & Woodworth, G. (1997). Cochlear implant use by prelingually deafened children: The influences of age at implant and length of device use. Journal of Speech, Language, and Hearing Research, 40(1), 183–199.

102

GULATI

Gannon, J. R. (1981). Deaf heritage: A narrative history of deaf America. Silver Spring, MD: National Association of the Deaf. Gee, J. P., & Mounty, J. L. (1991). Nativization, variability, and style shifting in the sign development of deaf children of hearing parents. In P. Siple & S. D. Fischer (Eds.), Theoretical issues in sign language research (Vol. 2: pp. 65–83). Chicago: University of Chicago Press. Geers, A., & Moog, J. (1994). Spoken language results: Vocabulary, syntax and communication. The Volta Review, 96(5), 131–148. Geers, A. E., & Schick, B. (1988, May). Acquisition of spoken and signed English by hearing-impaired children of hearing-impaired or hearing parents. Journal of Speech and Hearing Disorders, 53, 136–143. Glickman, N. S., & Harvey, M. (1996). Culturally affirmative psychotherapy with Deaf persons. Mahwah, NJ: Lawrence Erlbaum Associates. Goppold, L. (1988). Early intervention for preschool children: The longitudinal academic effects relative to program methodology, American Annals of the Deaf, 133(4), 285–288. Greenfield, K. T. (2001). Blind to failure. Time, 157, 52–63. Gregory, S. (1995) Deaf children and their families. Cambridge, UK: Cambridge University Press. Gregory, S., & Barlow, S. (1989). Interactions between deaf babies and their deaf and hearing mothers. In B. Woll (Ed.), Language development and sign language: Monograph I. London: Pinter Press. Gregory, S., Bishop, J., & Sheldon, L. (1995) Deaf young people and their families. Cambridge, UK: Cambridge University Press. Gregory, S., & Hindley, P. (1996). Annotation: Communication strategies for deaf children. Journal of Child Psychology and Psychiatry, 37(8), 895–905. Groce, N. E. (1985). Everyone here spoke sign language: Hereditary deafness on Martha’s Vineyard. Cambridge, MA: Harvard University Press. Gulati, S. (1998). The song of a thousand cicadas. Harvard Medical Alumni Bulletin, 71(3), 28–33. Hadadian, A., & Rose, S. (1991). An investigation of parents’ attitudes and the communication skills of their deaf children. American Annals of the Deaf, 136(3), 273–277. Harris, M., Clibbens, J., Chasin, J., & Tibbitts, R. (1989). The social context of early sign language development. First Language, 9(25, Pt. 1), 81–97. Harvey, M. (1989). Psychotherapy with deaf and hard-of-hearing persons: A systemic model. Hillsdale, NJ: Lawrence Erlbaum Associates. Harvey, M. (1998). Odyssey of hearing loss: Tales of triumph. San Diego, CA: Dawn Sign Press. Hindley, P. (1994). Signs of feeling: A prevalence study of psychiatric disorder in deaf and partially hearing children and adolescents. London: Royal National Institute for Deaf People. Hindley, P., & Bond, D. (1993). Interviewing deaf children: The interviewer effect. Journal of Child Psychology and Psychiatry, 34, 1461–1467. Hindley, P., Hill, P., McGuigan, S., & Kitson, N. (1994). Psychiatric disorders in deaf and hearing impaired children and young people: A prevalence study. Journal of Child Psychology and Psychiatry, 35, 917–934. Hoffmeister, R., & Harvey, M. (1996). Is there a psychology of the hearing? In N. S. Glickman & M. Harvey (Eds.), Culturally affirmative psychotherapy with Deaf persons (pp. 73–98). Mahwah, NJ: Lawrence Erlbaum Associates.

2.

PSYCHIATRIC CARE

103

Holden-Pitt, L. (1997). A look at residential school placement patterns for students from deaf- and hearing-parented families: A ten year perspective. American Annals of the Deaf, 142(2), 68–74. Hughes, T. (1983). Deaf school. In A. Allison, H. Barrows, C. Blake, A. Carr, A. Eastman, & J. Hubert English (Eds.), The Norton Anthology of Poetry (3rd ed., p. 1328). New York: Norton. Hull, J. M. (1990). Touching the rock. New York: Pantheon Books. Jackendoff, R. (1992). Languages of the mind: Essays on mental representation. Cambridge, MA: MIT Press. Jackendoff, R. (1994). Patterns in the mind. New York: Basic Books. Jamieson, J. R. (1994). Teaching as transaction: Vygotskian perspectives on deafness and mother–child interaction. Exceptional Children, 60(5), 434–449. Jankowski, K. A. (1997). Deaf empowerment: Emergence, struggle, and rhetoric. Washington, DC: Gallaudet University Press. Kampfe, C. M. (1989a). Parental reaction to a child’s hearing impairment. American Annals of the Deaf, 134(4), 255–259. Kampfe, C. M. (1989b ). Reading comprehension of deaf adolescent residential school students and its relationship to hearing mothers’ communication strategies and skills. American Annals of the Deaf, 134(5), 317–322. Kasen, S., Ouellette, R., & Cohen, P. (1990). Mainstreaming and postsecondary educational and employment status of a rubella cohort. American Annals of the Deaf, 135(1), 22–26. Kisor, H. (1990). What’s that pig outdoors? New York: Penguin Books. Klima, E., & Bellugi, U. (1979). The Signs of Language. Cambridge, MA: Harvard University Press. Knutson, J. F., & Lansing, C. R. (1990). The relationship between communication problems and psychological difficulties in persons with profound acquired hearing loss. Journal of Speech and Hearing Disorders, 55(4), 656–664. Koester, L. S. (1992). Intuitive parenting as a model for understanding parent– infant interactions when one partner is deaf. American Annals of the Deaf, 137(4), 362–369. Koester, L. S. (1995). Face-to-face interactions between hearing mothers and their deaf or hearing infants. Infant Behavior and Development, 18, 145–153. Lakoff, G., & Johnson, M. (1999). Philosophy in the flesh: The embodied mind and its challenge to Western thought. New York: Basic Books. Lane, H. (1984). When the mind hears. New York: Random House. Lane, H. (1992). The mask of benevolence. New York: Alfred A. Knopf. Lane, H. (1993). The medicalization of cultural Deafness in historical perspective. In R. Fischer & H. Lane (Eds.), Looking back: A reader on the history of deaf communities and their sign languages (Vol. 20, pp. 479–494). Hamburg, Germany: Signum Press. Lane, H. (1995a). The education of deaf children: Drowning in the mainstream and the sidestream. In J. M. Kauffman & D. P. Hallahan (Eds.), The illusion of full inclusion. Austin, TX: Pro-Ed. Lane, H. (1995b ). Letter to the editor. American Journal of Otology, 16(3), 393–399. Lane, H., Hoffmeister, R., & Bahan, B. (1996). A journey into the Deaf-world. San Diego, CA: Dawn Sign Press. Lee, F. R. (1998, March 5). New York to teach deaf in sign language, then English. New York Times.

104

GULATI

Lehr, D. H., & Brown, F. (Eds.). (1996). People with disabilities who challenge the system. Baltimore: Paul H. Brookes. Leigh, I. W. (Ed.). (1999). Psychotherapy with deaf clients from diverse groups. Washington, DC: Gallaudet University Press. Leigh, I. W., & Stinson, M. S. (1991). Social environments, self-perceptions, and identity of hearing-impaired adolescents. Volta Review, 93(5), 7–22. Lenneberg, E. (1967). Biological foundations of language. New York: Wiley. Lillo-Martin, D. (1997). In support of the Language Acquisition Device. In M. Marschark, P. Siple, D. Lillo-Martin, R. Campbell, & V. Everhart (Eds.), Relations of language and thought: The view from sign language and deaf children (pp. 153–162). New York: Oxford University Press. Lock, E. A. (1996). Critical period effects on the acquisition of English syntax by deaf individuals. Unpublished masters thesis, McGill University. Mahshie, S. N. (1995). Educating deaf children bilingually. Washington, DC: Gallaudet University Press. Mann, H. G., & Solange, S. S. (1989). Deaf patients [sic] and children: An innovative organization by and for deaf parents. Journal of the American Deafness & Rehabilitation Association, 23(1), 14–16. Marschark, M. (1997). Raising and educating a deaf child. New York/Oxford: Oxford University Press. Marschark, M., & Clark, M. D. (Eds.). (1993). Psychological perspectives on deafness. Mahwah, NJ: Lawrence Erlbaum Associates. Marschark, M., & Clark, M. D. (Eds.). (1998). Psychological perspectives on deafness. (Vol. 2). Mahwah, NJ: Lawrence Erlbaum Associates. Mayberry, R., & Fischer, S. (1989). Looking through the phonological shape to lexical meaning: The bottleneck of non-native sign language processing. Memory & Cognition, 17(6), 740–754. Mayberry , R. I. (1992). The cognitive development of deaf children: Recent insights. In S. J. Segalowitz & I. Rapin (Eds. ), Child Neuropsychology (Vol. 7, pp. 51–68). New York: Elsevier. Mayberry, R. I., & Eichen, E. B. (1991). The long-lasting advantage of learning sign language in childhood: Another look at the critical period for language development. Journal of Memory and Language, 30(4), 486–512. McNeill, D. (1992). Hand and mind: What gestures reveal about thought. Chicago: University of Chicago Press. Medwid, D., & Weston, D. C. (Eds.). (1995). Kid-friendly parenting with deaf and hard of hearing children. Washington, DC: Clerc Books, Gallaudet University Press. Mertens, D. M. (1989). Social experience of hearing-impaired high school youth. American Annals of the Deaf, 134(1), 15–19. Meyers, J. E., & Bartee, J. W. (1992). Improvements in the signing skills of hearing parents of deaf children. American Annals of the Deaf, 137(2), 257–260. Moore, M. S., & Levitan, L. (Eds.). (1993). For hearing people only. Rochester, NY: Deaf Life Press. Morford, J. P., & Goldin-Meadow, S. (1997). From here and now to there and then: The development of displaced reference in homesign and English. Child Development, 68(3), 410–435. Morford, J. P., & Mayberry, R. I. (2000). A reexamination of “early exposure” and its implications for language acquisition by eye. In C. Chamberlain, J. P.

2.

PSYCHIATRIC CARE

105

Morford, & R. I. Mayberry (Eds.), Language acquisition by eye, (pp. 111–127). Mahwah, NJ: Lawrence Erlbaum Associates. Murphy, R. F. (1990). The body silent. New York: Norton. Musselman, C., & Churchill, A. (1993). Maternal conversational control and the development of deaf children: A test of the stage hypothesis. First Language, 13(39, Part 3), 271–290. Nelson, K. (1996). Language in cognitive development: The emergence of the mediated mind. Cambridge, UK: Cambridge University Press. Neville, H. J., Coffey, S. A., Lawson, D. S., Fischer, A., Emmorey, K., & Bellugi, U. (1997). Neural systems mediating American Sign Language: Effects of sensory experience and age of acquisition. Brain & Language, 57(3), 285–308. Newman, A. J., Bavelier, D., Corina, D., Jezzard, P., Neville, H. J. (2002). A critical period for right hemisphere recruitment in American Sign Language processing. Nature Neuroscience, 5(1), 76–80. Newport, E. L. (1991). Contrasting conceptions of the critical period for language. In S. Carey & R. Gelman (Eds.), The epigenesis of mind: Essays on biology and cognition (pp. 111–130). Hillsdale, NJ: Lawrence Erlbaum Associates. Newport, E. L. (1990). Maturational constraints on language learning. Cognitive Science, 14, 11–28. Nicholas, J. G., Geers, A. E., & Kozak, V. (1994). Development of communicative function in young hearing-impaired and normally hearing children. Volta Review, 96(2), 113–135. Nohara, M., MacKay, S., & Trehub, S. (1995). Analyzing conversations between mothers and their hearing and deaf adolescents. Volta Review, 97(2), 123–134. Ogden, P. W. (1996). The silent garden: Raising your deaf child (2nd ed.). Washington, DC: Gallaudet University Press. Osbome, L. (1999, October 24). A linguistic big bang. The New York Times. Oyler, R., Oyler, A., & Matkin, N. (1988). Unilateral hearing loss: Demographics and educational impact. Lang Speech Hear Serv Schools, (19), 201. Parasnis, I. (Ed.). (1998). Cultural and language diversity and the deaf experience. Cambridge, UK: Cambridge University Press. Petitto, L. A., & Marenette, P. F. (1991). Babbling in the manual mode: Evidence for the ontogeny of language. Science, 251(5000), 1493–1496. Pinker, S. (1994). The language instinct: How the mind creates language. New York: Morrow. Poizner, H., Klima, E. S., & Bellugi, U. (1990). What the hands reveal about the brain. Cambridge, MA: MIT Press. Pollard, R. Q., Jr. (1998). Psychopathology. In M. Marschark & M. D. Clark (Eds.), Psychological perspectives on deafness (Vol. 2, pp. 171–198). Mahwah, NJ: Lawrence Erlbaum Associates. Prinz, P. M., Strong, M., Kuntze, M., Vincent, J., Friedman, J., Moyers, P. P., & Helman, E. (1996). A path to literacy through ASL and English for deaf children. In C. E. Johnson & J. H. V. Gilbert (Eds.), Children’s language (Vol. 9, pp. 235–251). Mahwah, NJ: Lawrence Erlbaum Associates. Quin, W. R. (1996). Understanding childhood deafness. London: Thorsons. Rée, M. (1999). I see a voice: Deafness, language, and the senses—A philosophical history. New York: Metropolitan Books. Rehm, H. (2000, November/December). The genetics of deafness: Connexin 26 testing. Volta Voices, 10–16.

106

GULATI

Reilly, J. S., & Bellugi, U. (1996). Competition on the face: Affect and language in ASL and motherese. Journal of Child Language, 23(1), 219–239. Remen, R. N. (1996). Kitchen table wisdom: Stories that heal. New York: Riverhead Books. Ritter-Brinton, K., & Stewart, D. (1992). Hearing parents and deaf children. Some perspectives on sign communication and service delivery. American Annals of the Deaf, 137(2), 85–91. Rosen, S. (1990). Cochlear implants: Some consensus at last? British Journal of Audiology, 24, 361–373. Rymer, R. (1993). Genie. New York: Harper Collins. Sacks, O. W. (1991). Seeing voices: A journey into the world of the deaf. (Rev. ed.). London: Picador. Schaller, S. (1991). A man without words. Berkeley: University of California Press. Schein, J. D., & Stewart, D. A. (1995). Language in motion: Exploring the nature of Sign. Washington, DC: Gallaudet University Press. Schildroth, A., & Hotto, S. A. (1994). Inclusion or exclusion? Deaf students and the inclusion movement. American Annals of the Deaf, 139(2),239–243. Schlesinger, H. (1988). Questions and answers in the development of deaf children. In M. Strong (Ed.), Language Learning and Deafness (pp. 261–291). Cambridge, UK: Cambridge University Press. Schlesinger, H. S., & Meadow, K. P. (1972). Sound and sign. Berkeley: University of California Press. Shapira, N. A., DelBello, M. P., Goldsmith, T. D., Rosenberger, B. M., & Keck, P. E. (1999). Evaluation of bipolar disorder in inpatients with prelingual deafness. American Journal of Psychiatry, 156(8), 1267–1269. Shattuck, R. (1980). The forbidden experiment: The story of the wild boy of Aveyron. New York: Farrar, Straus, & Giroux. Siedlecki, T. J., & Bonvillian, J. D. (1997). Young children’s acquisition of the handshape aspect of American Sign Language signs: Parental report findings. Applied Psycholinguistics, 18(1), 17–39. Siple, P. (1997). Universals, generalizability , and the acquisition of signed language. In M. Marschark, P. Siple, D. Lillo-Martin, R. Campbell, & V. Everhart (Eds. ), Relations of language and thought: The view from sign language and deaf children (pp. 24–61). New York: Oxford University Press. Smith, M. C., & Hasnip, J. H. (1991). The lessons of deafness: Deafness awareness and communication skills training with medical students. Medical Education, 25(4), 319–321. Smith, R. (1996). A case about Amy. Philadelphia: Temple University Press. Solomon, M. (1977). Beethoven. New York: Schirmer Books. Spencer, P. (1993a). The expressive communication of hearing mothers and deaf infants. American Annals of the Deaf, 138, 275–283. Spencer, P. E. (1993b). Communication behaviors of infants with hearing loss and their hearing mothers. Journal of Speech and Hearing Research, 36, 311–321. Spencer, P. E., & Meadow-Orlans, K. P. (1996). Play, language, and maternal responsiveness: A longitudinal study of deaf and hearing infants. Child Development, 67(6), 3176–3191. Steinberg, A. (1991). Issues in providing mental health services to hearing impaired persons. Hospital and Community Psychiatry, 42(4), 380–389.

2.

PSYCHIATRIC CARE

107

Steinberg, A. G., Sullivan, V. J., & Lowe, R. C. (1998). Cultural and linguistic barriers to mental health service access: The deaf consumer’s perspective. American Journal of Psychiatry, 155(7), 982–984. Stevens, R. (1992). A discourse on deafness: Handicap or condition of being? Unpublished manuscript. Supalla, S. J. (1991). Manually Coded English: The modality question in signed language development. In P. Siple & S. D. Fischer (Eds.), Theoretical issues in sign language research (Vol. 2, pp. 85–109). Chicago: University of Chicago Press. Tranchin, R. (1994). For a deaf son. Dallas/Fort Worth, TX: KERA. Urban, E. (1989). Childhood deafness: Compensatory deintegration of the self. Journal of Analytical Psychology, 34(2), 143–157. Vaccari, C., & Marschark, M. (1997). Communication between parents and deaf children: Implications for social–emotional development. Journal of Child Psychology & Psychiatry & Allied Disciplines, 38(7), 793–801. Williams, C. L. (1993). Learning to write: Social interaction among preschool auditory/oral and total communication children. Sign Language Studies, 80, 267–284. Wood, D. (1991). Communication and cognition: How the communication styles of hearing adults may hinder—rather than help—deaf learners. American Annals of the Deaf, 136(3), 247–251. Wright, D. (1969). Deafness: A personal account. London: Penguin. Yachnik, M. (1986). Self-esteem in deaf adolescents. American Annals of the Deaf, 131(4), 305–310. Zalewska, M. (1989). Non-verbal psychotherapy of deaf children. Journal of the American Deafness and Rehabilitation Association, 22(4), 65–71.

3 Psychological Evaluation of Deaf Children Terrell A. Clark Harvard Medical School Tufts University

The following pages offer a perspective on conducting psychological evaluations of deaf children. This chapter does not attempt to cover the breadth and complexity of pediatric psychology and deaf children. In particular, it does not deal with the wide gamut of children who have some degree of hearing loss—mild through moderately severe loss, unilateral loss, progressive loss, or adventitious loss. The focus of this chapter is the attitudes, knowledge base, specialized skills, and experiences clinicians apply in conducting psychological evaluations with deaf children in a manner that is culturally, linguistically, and personally affirmative. There are many facets to the lives and experiences of deaf children and their families. No singular view or approach applies to all children and all situations. Points raised in the chapter are illustrated with clinical case material. Sections of the chapter will: 1. Explore the notion of culturally affirmative psychological evaluation services in a context of child development, acknowledging that children may have formed no cultural identity and only a rudimentary personal identity, 2. Describe one particular clinic’s interdisciplinary team approach to conducting comprehensive evaluations of deaf children, 3. Discuss factors to consider in choosing and applying tests appropriately with deaf children, with elaboration on measures of cognitive and social-emotional functioning, 4. Raise considerations about working with hearing children whose parents are Deaf. 109

110

CLARK

1. THE NOTION OF CULTURAL AFFIRMATION WITH CHILDREN What does it mean to offer “culturally affirmative” psychological assessment of children who are deaf? Elsewhere in this volume, Dr. Glickman has described a model for provision of culturally affirmative psychiatric care for adults who are deaf. In considering issues related to children who are deaf, however, can we truly address “culturally affirmative” assessment? Because there is no way to anticipate if or when a particular deaf child may eventually develop, discover, or “declare” a Deaf cultural/linguistic affiliation, does such a model apply to children? One way to address this issue is to consider the child and family’s cultural affiliations. Another consideration is the attitudes, knowledge, and specialized skills required to do mental health work with individuals regardless of their stage of identity development (Glickman, 1996; Sue, Arredondo, & McDavis, 1992). Very young children, whether hearing or deaf, cannot have acquired a cultural identity—young children can barely articulate a personal identity, much less express a cultural identity. Children belong to a family first. Children’s roles, their place, their identity within the family unit take shape during their formative years. During the same period, young children begin to learn the value system of the parents and those of groups with whom the family associates. As children enter school, they begin to experience wider circles of social contacts, and behavioral expectations are reinforced by the “culture” of the school environment. Some deaf children are born to or raised within families who align personally and socially with Deaf friends and/or family members. Whether the child’s parents are deaf or hearing, if the child’s family members participate in social groups with Deaf adults and communicate preferentially through American Sign Language, then the family may be considered as participants in the Deaf community. The deaf child then may become quite naturally acculturated in the values, interpersonal styles, and the language characterizing those who are culturally Deaf. However, only a small proportion of school-aged children who are deaf have a parent who is Deaf or who associates regularly with close friends and/or family members who are Deaf. The vast majority (90%) of deaf children are born to parents who themselves are hearing, and many are educated in programs other than schools for the deaf. By what age might a child who is deaf be expected to even comprehend cultural distinctions among Deaf and hearing people? Developmentally, it is common for preschool-aged youngsters to recognize and distinguish communicative styles of adults and other children with whom they interact. Young children whose parents and siblings make an effort to sign when communicating may well recognize under what circumstances signing will be reciprocated. That recognition distinguishes signers from nonsigners, not Deaf from hearing; the distinction is one of communicative modality, not cultural identity. It may not be until middle childhood,

3.

PSYCHOLOGICAL EVALUATION

111

around 7 or 8 years of age, that a child can begin to comprehend distinctions that mark those who are culturally Deaf from those who are hearing. Cultural awareness, or the process of forming cultural affiliation, cannot even be expected of a youngster unless a process of acculturation has begun because of explicit and conscientious instruction or through ongoing contacts with Deaf adults and older students who are Deaf. Through such contacts, a youngster might learn of the history, values, patterns, mores, and styles of interaction shared by members of the Deaf community. Compelling anecdotal accounts of deaf children learning and discovering “ways of being Deaf” (Padden & Humphries, 1988) abound. Yet, unless deaf children have considerable experience with Deaf adults (from whom they might learn the language and the social conventions of Deaf culture), how can they possibly acquire a Deaf cultural identity? Case Example A 4-year-old boy with severe to profound bilateral hearing loss had not yet begun school. With his mother and younger sister, his family had immigrated to the northeastern United States from Latin America. His mother was admirably determined to obtain an education for her deaf son. She was unfamiliar with the dominant language of the community into which she settled with her two young children. She was unfamiliar with the rules and regulations governing provision of special education services and with possible educational approaches. Valiantly, she approached the local school district to enroll her son in school. The boy had only gestural and behavioral means of communication. He had no hearing aids. He had no sign language. He had no spoken language. He had no ability to discern spoken language through speechreading. His mother spoke one language. People in the school district spoke another. The school district offered immediate enrollment in a preschool class with other 4-year-olds, staffed by an early childhood teacher and a paraprofessional aide who could speak the mother’s primary language. The boy was deaf. All the other youngsters in the class were hearing. No one offered a school or class for deaf children. No one offered instruction in sign language or a trained teacher of the deaf. An advocate from a social service agency who was working with the mother on behalf of the children’s needs recommended an evaluation. As a hearing, American born, English speaking, fluently signing psychologist, I shared with this child no common language, common life experiences, or common heritage. Yet, having years of experience working with young children who are deaf, I could approach the assessment session prepared to interact with him through gestural and behavioral means. I had numerous evaluation tasks available that might appeal to his interests and capabilities. I could conduct an evaluation sensitive to the context of his life, sensitive to his communication needs, and sensitive to the skills and abili-

112

CLARK

ties that he might be able to demonstrate. On the basis of evaluation, I could offer recommendations for his family and school district that took into account his unique circumstances, his desperate need to acquire language, his mother’s hopes and aspirations, and the resources for deaf children and their families available in and around the family’s new community. To work effectively with this child, the psychologist must be able to meet the child and family “where they are at.” In working with a child who as yet has acquired no language, engaging through nonverbal techniques for communicating and interacting is essential. The psychologist must also have an array of assessment tools to employ that neither presume nor depend on verbal skills. Appreciating the implications of congenital deafness on child development, the psychologist with specialized knowledge and expertise can analyze assessment results and differentiate factors attributable to specifics in the child’s history, current status, and demonstrated skills. The psychologist can distinguish indications of potential and recommend directions for optimizing that potential. With knowledge of the breadth of resources specific to deaf children and their families, the experienced psychologist can assist in establishing connections crucial for the child and family. Adults who identify with the Deaf community hold culturally affirmative attitudes about the communicative, educational, and social needs of deaf children, including the view that learning through interaction with peers in specialized (signing) settings is a desirable and healthy choice. This perspective may strike an alien chord with some hearing educators and with some parents/families of deaf children. The psychologist who brings culturally affirmative attitudes to the process of working with deaf children and their families may suggest such a perspective, gently challenge preconceived notions, and offer options for consideration that reflect the value of nurturing distinctive linguistic/cultural affiliations among deaf children. Qualifications of the Psychologist The psychologist who is qualified to conduct evaluations with deaf children is one who is solidly and broadly trained in child development, in pediatric psychology, and in assessment, not only in theory but also in practice. A solid foundation in psychology is essential. Also essential is both training and experience in working with Deaf individuals. “Expert deafness professionals agree that competence in the deafness field, including competence in psychological assessments, implies sign language fluency and knowledge about deafness from audiological, developmental, educational, vocational, legal, social, and cultural perspectives (in addition to a solid background in mental health)” (Pollard, 1996). I would assert that the psychologists who are qualified to conduct evaluations with deaf children must be willing and able to meet each child’s linguis-

3.

PSYCHOLOGICAL EVALUATION

113

tic style and communicative needs (with flexibility according to the child’s preferred modality, linguistic framework, or educational experience). Psychologist Jeffrey Braden advised “… the best method for assuring task comprehension is for psychologists serving deaf and hard-of-hearing children to become fluent in language systems used by deaf people, and to use the subject’s native language when administering tests” (1992). In meeting and attempting to interact with individuals who are deaf, some people naturally adapt their communication style to the communicative behaviors of the deaf individual. Some deaf people prefer to communicate orally. Some signers communicate in a hybrid that incorporates many English language phrases, expressions, and vocabulary selections. Some communicate preferentially and primarily in American Sign Language (ASL). Some signers incorporate vivid visual images through mime and gesture interlaced with ASL. Some deaf people will use one mode when communicating with hearing people and another when engrossed conversationally with others who are deaf. Some deaf children may not have acquired a true or viable language, and yet may be earnest and creative communicators. The psychologist who works with deaf people must be respectful and skillful in all these communication modalities. There are adults who tend to place the onus for conformity to a particular communication style or methodology on the deaf child. That attitudinal practice is not appropriate for a psychologist who wants to work effectively with deaf children. The psychologist must be able to connect with the child and accept the responsibility for “making communication work” effectively. A psychologist who is eager to work with deaf children, one who is perhaps studying sign language but is not yet fluent, must be willing to employ the collaboration of a skilled ASL interpreter. A proficiently signing psychologist working with a young deaf child who has never seen sign language must be able to “switch gears” and employ other means of connecting with and communicating with the child. There are deaf children who preferentially talk, who are spoken-language communicators. That communication preference must be supported and respected. By the same token, some children who “talk” in school or at home may prefer to “sign” in the psychologist’s office; that preference too must be respected. The psychological evaluation with deaf children must be conducted in a “communicatively sensitive” manner. Conducting evaluations in a context and manner that is sensitive to and respectful of deaf children’s communication needs, developmental perspectives, and interaction/connections is essential and is part of what culturally affirmative assessment entails. 2. COMPREHENSIVE EVALUATION OF CHILDREN WHO ARE DEAF At the Children’s Hospital in Boston, I work in a unique, specialized clinical setting, the Boston Center for Deaf and Hard of Hearing Children (BCDC).

114

CLARK

Many years ago, audiologists at the hospital felt a need to obtain more comprehensive diagnostic information about young, deaf patients. Borrowing staff from elsewhere in the hospital, an interdisciplinary team of professionals from the divisions of hearing and speech, psychology, and medicine convened once each week to conduct evaluations as requested. Seeing only a few children each year initially, the number of referrals soon exceeded our capacity to schedule children for evaluations. The team grew to become a stable, interdisciplinary clinic. We have a combination of professionals, including permanent staff, trainees, and consultants, all of whom share the hospital’s four-pronged mission of providing excellence in clinical care, teaching and training, research, and community outreach. Several hundred appointments per year are now held in this clinic. It is within our dynamic and richly experienced team of professionals that I practice as a pediatric psychologist. BCDC is specially dedicated to working with children who have known hearing loss. Staffed by Deaf and hearing professionals who have both specific training/expertise and life experience directly applicable to working with deaf children and their families, the clinic atmosphere and focus of evaluation is most essentially an affirmative one. Working with children who are deaf in a setting where being deaf is not unique, is not unusual, and is in fact expected and genuinely accepted, contributes to an underlying sense of affirmation of the child and permits evaluation of psychological factors apart from, yet integral to, the child’s being deaf. Referrals to the clinic come from physicians, mental health professionals, school administrators, social service agencies, and parents. Frequently, referrals are made to obtain one or more of the following: • Routine triennial assessment in compliance with federal or state guidelines for provision of special educational services, • Description of the child’s level of cognitive function, • Manifestations of neurodevelopmental compromise possibly associated with the etiology of hearing loss (e.g., prematurity, meningitis, intrauterine viral infection, perinatal anoxia, genetic syndromes, etc.), • Evidence of or recommendations regarding intervention for psychopathology, • Baseline profile against which to compare rate and trajectory of developmental progress, • Descriptive and objective data on which to base decisions regarding instructional and communication methodology, • Documentation of achievement in reference to level of intellectual functioning and identification of educational aptitudes and interests. Not every member of the multidisciplinary team works with every child referred to the clinic. Various combinations of professional expertise may be appropriate for conducting a clinical evaluation with a particular child

3.

PSYCHOLOGICAL EVALUATION

115

in a particular situation. As a team, we convene a clinical case conference to pull together information and observations and findings from the assessments. From collectively sharing information, the team formulates diagnostic impressions and discusses recommendations. Members of the team who may not have seen the child can ask questions and make suggestions, enriching the final evaluation. The formulation and recommendations are then shared with the child’s parents, and documented in a comprehensive written report. Working as a member of a comprehensive, interdisciplinary diagnostic-clinical team, I can conduct psychological assessments singularly or may rely on colleagues to gather and contribute sufficient information about a child to paint a picture that both describes and informs. The comprehensive, interdisciplinary team evaluation of a deaf child includes relevant information from medical history and physical examination that includes: consideration of factors identified from medical history, physical exam, and lab tests. From the audiological assessment: • Age at onset of hearing loss and etiology of hearing loss, • Degree, configuration, and type of hearing loss, • Stability of hearing loss, • Functional, residual auditory acuity, • Utility of amplification. From the language and communication assessment (often conducted by two clinicians and in two languages): • Status of language development and proficiency, • Pragmatics and social use of language/communication, • Form, content, and use in signed language and in spoken or written language, • Speechreading ability, • Speech intelligibility, • Narrative, organizational skills, • Proficiency with English as a read and written language. From assessment of cognitive functioning: • Levelofintellectualfunctioningand generallevel of cognitivedevelopment, • Specific cognitive skill processes and characteristics of learning style (e.g., aspects of memory, problem solving, perceptual-motor, visuospatial, logical reasoning, verbal reasoning, numerical reasoning, spatial reasoning), • Familiarity with general information and knowledge of basic concepts. From assessment of social–emotional development and status: • Mood and affect, • Interactions and social style,

116

CLARK

• Self-concept, • Social reasoning, • Personality traits. • • • •

From assessment of educational achievement: Word recognition and encoding (spelling), Reading comprehension, Number skills and computational skills, Application of academic skills to tasks of daily living.

BACKGROUND (CONTEXT) + OBSERVATIONS + EVALUATION FINDINGS = FORMULATION è RECOMMENDATIONS To have an understanding of the context in which a child lives and relates to others, it is necessary to gather complete background information. On our team, background information may be accumulated by each team member separately and pooled together during the clinical case conference. For some children, it is more efficient and more appropriate to designate one team member to conduct an interview with the child’s parents and to review written reports and information that accompanied the child’s referral for evaluation. Either way, it is necessary to obtain and document a medical history, social history, and school history. From sources such as parents, other care providers, and educational records, it is important to gain a sense of the child’s adaptive skills. If there are reports from previous evaluations, these need to be obtained, read, and reviewed. On our interdisciplinary team, the audiologist takes a history, reviews records, and conducts an audiological evaluation. Relevant information about the cause of the child’s hearing loss, whether the loss is congenital or acquired, and the type of hearing loss may be obtained through taking a history and reviewing the records. During our case conference and subsequently in a written report, the audiologist explains the type, configuration, and degree of hearing loss. It is equally important to have information describing what auditory acuity and speech discrimination abilities the child may demonstrate, as well as what benefit (if any) the child may derive from amplification. For many children who are deaf, language learning is preferentially or necessarily visual, and sign language may be the primary language of instruction and conversation. Therefore, on our interdisciplinary team, we generally have two clinicians working in tandem who together conduct assessments of language and communication skills with deaf children. The clinical team combination includes a certified speech/language pathologist and an American Sign Language specialist. One clinician is hearing and the other Deaf. Both are proficient in two languages—ASL and English. The language and communication assessment seeks to describe the deaf child’s communicative competencies. Assessments the child’s level of language acquisition, competency and efficacy of communication skills, social

3.

PSYCHOLOGICAL EVALUATION

117

and pragmatic use of language are all areas included in the evaluation. Results of assessment yield information about the child’s language development status in both receptive (comprehension) and expressive abilities. The clinicians also document the child’s preferential mode(s) of communication. Even among deaf children who sign as their primary mode of communication, it is important to document efficacy of additional means of communication such as speech-reading, intelligibility of speech, and ability to use print and written language. The clinicians assess the child’s language form, the complexity and regularity of sentence structure and grammar the child employs. By videotape, the clinicians record the assessment session. Video recording deaf children has many advantages. The tapes capture features of social interaction (for analysis of pragmatic skills), details of ASL facial grammar and sign production (for analysis of expressive signed language), inflections of vocal production (for analysis of speech intelligibility), and examples of both spontaneous communication and response to direct questions and probes. Clinicians assess the child’s language form through analysis of language samples (whether signed, written, and/or spoken), through techniques of story re-tell and through sentence-elicitation tasks. Videotaping also preserves a language sample for future use. Assessment of vocabulary skills informs the language clinicians about the sophistication and breadth of content the deaf child might employ linguistically. Although picture identification tasks are common tools for assessing vocabulary, the clinicians also employ techniques such as generation of lists of vocabulary items to assess content. Assessing English language vocabulary might entail asking the child to offer synonyms (e.g., dog = hound, pup, canine, pooch, etc.) or name members of categories (e.g., things that have wheels, articles of clothing, vegetables, etc.). Assessing ASL vocabulary might entail asking the child to offer as many signs as possible involving a given handshape (e.g., “5” handshape è FATHER, FINE, ALL DONE, TREE, TRAFFIC, etc.) Children use language for a variety of purposes—to label, to request, to respond, to direct, to question, to joke, to relate remote events, to explain, to inform, to inquire, to describe, to conjecture, to contemplate. Deaf children who can name or label familiar people and/or objects, but who use language for few other purposes are obviously constrained in the breadth and complexity of notions about which they might communicate effectively in their use of language. The level of complexity of language that the child uses is invaluable in understanding the child’s general functioning (thinking, reasoning, interacting, and so forth). Our language clinicians thus assess and describe the deaf child’s form, content, and use of language (in signed language, in written language, and/or in spoken language). On our interdisciplinary team, a psychologist conducts assessments of the youngster’s cognitive and intellectual functioning. From referral infor-

118

CLARK

mation and interview information, the psychologist may gather a description of the child’s general cognitive development. Through individually administered tests, and through careful observation and analysis while conducting the assessment, the psychologist evaluates specific cognitive skill processes (e.g., memory, problem solving, perceptual-motor, visuospatial, logical reasoning, verbal reasoning, numerical reasoning, spatial reasoning). With school-aged students, the psychologist typically assesses the student’s knowledge of basic concepts and familiarity with general information. The profile that emerges indicates the child’s level of intellectual functioning and describes individual characteristics of learning style. Because of the interdisciplinary nature of our clinical team, it may be a psychologist who conducts assessment of the child’s psychosocial development and status. With a child psychiatrist on the team and a pediatrician (often a fellow in developmental pediatrics) trained in developmental and behavioral issues of childhood, a physician may collect this information, interview the child and parents, and contribute to the team’s understanding of social–emotional issues germane to case formulation. If projective testing is requested or deemed necessary, a clinical psychologist always conducts that portion of the evaluation. Sources of information considered in assessing social–emotional status include a review of life history along with behavioral observations of the child and of the child’s interactions with others. Through interviews and/ or questionnaires completed with parent(s), teacher(s), or other caregiver(s), the clinician gains additional valuable information and impressions. If the child and psychologist both share fluency in a language (signed or spoken), the psychologist can conduct a structured clinical interview. Depending on the linguistic facility of the child, it is possible to apply a variety of projective techniques. Children’s drawings may be interpreted projectively. Again, depending on language proficiency (signed, spoken, or written), projective techniques such as sentence completion, picture perception/narratives, and/or preferential sorting tasks and interpretations may be applicable. Questions about level of academic achievement or rate of educational progress often accompany referral of a deaf child for comprehensive evaluation. More often than not, much of the academic assessment has been or can be conducted by personnel in the student’s educational program. The clinical team may be asked to provide insight into basic learning capacity (level of intellectual functioning). The clinical team may consider a differential diagnosis of learning disorder or learning disability. The efficacy of instructional approaches employed with the student may need to be considered. On our clinical team, the psychologists and the language specialists contribute to such educational assessments. The assessments are conducted through individually administered tests and often through diagnostic teaching techniques. The clinicians assess the student’s demonstrated skills with word recognition and spelling, with reading comprehension, working with num-

3.

PSYCHOLOGICAL EVALUATION

119

bers and computational skills, and with practical application of academic skills to tasks of daily living. Case Example A tenth grader was referred for evaluation because he was floundering in high school. Throughout his elementary school and middle school years, he had routine, periodic assessments and seemed to be progressing well linguistically and academically. But since entering the high school division of his comprehensive school for the deaf, his grades had been inconsistent. He had earned some As and Bs. He also had numerous Ds and Fs. His parents wondered if he might have an undiagnosed learning disorder impeding his academic progress. In conducting our interdisciplinary evaluation, we obtained and reviewed records from his school. The pediatrician conducted separate interviews with the parents and with the teen, and performed a physical examination. The young man, who was followed regularly for audiological services, was not scheduled for hearing tests. Those records were obtained and reviewed by this team’s audiologist. The psychologist and language specialists administered formal assessments of cognitive function, linguistic function, and educational achievement. On physical exam, he was found to be generally in good health. He reported no problems with sleep or appetite. During his individual interview, however, he admitted to tensions between himself and his parents. Dynamics within families are often complex. Not to overly simplify the trends within this family, it seemed apparent that the adolescent felt inadequate to fulfill his parents’ expectations of him. Additionally, he did not find validation among his classmates for academic pursuits as much as for athletic talents. His admitted that his actions served to practically guarantee failure in school. He had failed to read assigned texts (although he demonstrated sufficient reading comprehension to handle the assignments), had failed to turn in homework, had procrastinated on long-term projects, and had sometimes failed to study for quizzes and tests. On academic testing, he demonstrated competencies in math and spelling commensurate with expectations for his grade level. His vocabulary skills and reading comprehension were areas of strength. He seemed keenly interested in current affairs and indicated that he read news magazines routinely. On cognitive testing and language assessment tasks, he demonstrated consistently strong performance and “high average” scores on “nonverbal” measures with at least “average” level performance on language-dependent measures. There was no evidence of compromise in learning abilities in his performance on any of the language, cognitive, or academic achievement testing. We discussed the results of our evaluation with the parents and their son in a “feedback” discussion. He learned of his considerable strengths and

120

CLARK

potential for the first time. We used charts, explained the meaning of numbers (such as percentiles, standard scores, and grade-level equivalencies), and used descriptive terms that would appear in the written report so that they would be more familiar to the family when they read the final evaluation report. For this teen, the revelation of his considerable potential and his obvious underachievement worked advantageously. Not immediately, but gradually, he resolved to “own up to” his “high average” IQ. With what he accepted as objective evidence, he became convinced of his strengths. In ways that all the parental harangue and cajoling could never attain, the assessment results helped convince him of his aptitude. 3. CHOOSING AND APPLYING PSYCHOLOGICAL TESTS WITH DEAF CHILDREN Factors to Consider in Selecting Tests and Conducting Assessment A central issue in evaluation is one of designing or implementing an assessment approach that is sensitive to the special issues of children who are deaf. Few tests have been rigorously designed and normed with a sufficient sample of deaf children, or submitted to the scrutiny of research to assure adequate reliability and validity as assessment measures for deaf children. Although a referral question may seek to know how a particular deaf child is functioning in comparison with deaf children in general, there are precious few measures that even purport to offer such assessment information. Rather, the psychologist must make an informed selection from among assessment tools and exercise clinical judgment in applying them with children and adolescents who are deaf. As Pollard (2002) described in his chapter on “Ethical Conduct in Research Involving Deaf People” the psychologist is wise to consider at least the following five issues in selecting and applying tools or instruments for use with deaf individuals: Purpose: What are the referral questions? What is the relevance of the content and construction of these tests to those questions and to what the test purports to measure? Instructions: What is the length and complexity of instructions? How will the instructions be conveyed? Item or task content: Might the content of items and nature of tasks introduce bias or error given the deaf child’s life experiences? Sensory abilities? Cultural orientation? Response modality: Is the necessary response modality consonant with the deaf child’s linguistic competencies? Physical capabilities? Communication modality?

3.

PSYCHOLOGICAL EVALUATION

121

Scoring: Against what normative reference group will the deaf child’s performance be compared? What does this measure contribute to assessing the child’s relative competencies and capabilities? These five elements should be applied in considering the appropriateness of any test or assessment technique for use with deaf children. Each element is therefore discussed in greater detail in the following text, along with selected illustrations from case material and with particular attention to instruments a psychologist might chose to employ in conducting assessment with deaf children. • The first element to consider is the purpose of the test. What does the test measure? Is administration of a given test likely to yield information truly relevant to addressing the referral questions that accompanied the request for evaluation? When deaf children are referred for psychological evaluation, there is undoubtedly a purpose desired of the evaluation. Frequently, those making a referral are asking for a description of the child’s level of cognitive function or if the child’s level of academic achievement is commensurate with expectations given the child’s demonstrated level of cognitive function. In those circumstances, administration of measures of intellectual functioning and cognitive development are indicated. In selecting intelligence tests for administration with deaf children, the psychologist must examine the test construct and carefully consider the essence of what the test purports to measure. Consider ways the test may approach reasoning, problem solving, flexibility of thinking skills, and/or developmental attainment of cognitive constructs. The psychologist may need to assess a wide range of specific cognitive skill processes (such as short-term memory, retrieval, problem solving, perceptual–motor, visuo-spatial, logical reasoning, verbal reasoning, numerical reasoning, and spatial reasoning). The psychologist can contribute to the assessment of the child’s informational base and academic achievement and/or of rate of learning, to evaluation of attentional qualities demonstrated by the child, and to the manifestation of social/emotional factors. The depth and breadth of assessment, the nature and design of tests utilized in the evaluation, what the tests presume to measure, and the types of instruments selected for administration all must be carefully considered and should relate to the referral questions. • The second element to consider is the nature of the task instructions. How will the examiner convey directions for task performance? Partially, the answer to this question resides in the answer to another question. What is the preferred and primary language of the child? If ASL is the primary language and signing the preferred modality of com-

122

CLARK

munication, then the assessment instructions need to be signed. Even if the examiner can sign fluently, the child may not comprehend directions sufficiently well to assure full understanding of task expectations. In translating instructions from spoken English to ASL, information inadvertently may be rendered more transparent or more obscure than intended in test design. The examiner must be cognizant of those possibilities. Acommon and useful tool in child assessment is the technique of analyzing children’s human figure drawings. A drawing activity is often introduced at the beginning of a test battery to put the child at ease and to establish rapport between the examiner and the child. Drawings may be useful as a screening tool, suggesting developmental maturity of visual– motor control, perceptual accuracy or distortions, and as indications of self-concept and temperament (Mondell & Clark, 1994). The child is given plain, white paper and a pencil with eraser or perhaps some crayons. The instructions might entail requesting that the child draw a picture of a “whole person” or of people “doing something together.” Signing or gesturing the instruction to “draw” a picture, and even indicating that the drawing should be of a person, may seem simple enough. To convey the notion of whole person, the psychologist may be tempted to indicate head, limbs, and torso by pointing or gesturing. Yet, from the perspective of developmental scoring systems (such as Goodenough-Harris, 1963 or Naglieri, 1988), inclusion of certain features and body parts directly affects scoring. In projective interpretation of drawings, such as the psychologist may consider with the House-Tree-Person test (Buck, 1992) or the Kinetic Family Drawing (Knoff, 1990) technique, omission or inclusion of details and indications of dynamic movement or of interaction among figures, may drastically alter the qualitative interpretation of the child’s drawing(s). Thus, even with such a seemingly simple assessment task and instructions, the amount of information that may be implicitly included or erroneously excluded because of how directions are conveyed becomes rather crucial. When working with deaf children, the examiner may have to provide instructions through gesture or demonstration of items. The written evaluation report should note whether accommodations were made and whether standardized administration of instructions were followed. Accommodations or alterations have to be considered in interpreting test protocols, because they may well have an effect on assessment outcomes. Accommodations should be mentioned in the report not only qualitatively, but also in terms of guiding recommendations. The design of some tests permit essentially “teaching” tasks with children, through demonstration or imitation or explanation, e.g., on subtests of the Kaufman Assessment Battery for Children (Kaufman & Kaufman, 1983). Some tests do not include sample or practice items. The psychologist may find it necessary to devise ways to provide demonstration and practice. Morgan and Vernon (1995) advised

3.

PSYCHOLOGICAL EVALUATION

123

“Several introductory trials and examples of the task should be given the child before actual testing begins” (p. 361). The deaf child who benefits from demonstration of assessment tasks and opportunities to practice with sample items, and goes on to successfully complete numerous items on a test shows true potential for learning that should be acknowledged and capitalized on instructionally. If “hands on” practice proved valuable in conducting the assessment, “hands on” instruction is likely to prove valuable in the design of lessons and teaching/learning tasks. If the deaf child can read well, some test instructions and items could be presented through print. However, the psychologist must be cautious in using print materials. A deaf student’s proficiency with English in print form may be less well developed than typically demonstrated by hearing contemporaries of similar age and grade level. Underlying literacy issues, the breadth of the deaf child’s general fund of information, and the adequacy of communication established between the psychologist and the deaf child are all potentially critical factors in conveying instructions appropriately. In his chapter on research design, Pollard admonished, “Never should instructions be assumed to be self-explanatory, especially if hearing individuals would have been provided with verbal instructions. This egregious error is commonly made when deaf individuals are given tasks that appear to be highly visual, such as the performance subtests of the Wechsler Adult Intelligence Scale–III (Wechsler, 1997). Mimed, demonstrated, written, ‘lip-read,’ or inadequately signed research task instructions should never substitute for the degree of task comprehension that hearing participants would experience in their preferred communication modality” (Pollard, 2002). • The third element to consider is the nature of the assessment task. Item or task content needs to be consonant with the life experiences of the deaf child. As Pollard cautioned (2002) in assessment of individuals who are deaf, one must consider the individual’s sensory abilities (e.g., hearing loss and visual acuity), fund of information, socialization experiences, and cultural affiliation in determining appropriateness of item or task content. Although selection and use of so-called “nonverbal tests” may reduce the risk and bias of assessment conducted in a particular language (e.g., standard English), which may not be the deaf child’s primary language, the assessment tasks may still tap “skills and knowledge that are typically learned through language” (Marschark, 1997). There are covert language demands inherent in many so-called “performance” or “nonverbal” assessment tasks. For example, the arrangement of pictures to illustrate a logical sequence of a story line or of cause–effect relationships inherently involves application of narrative, organizational skills whether the child arranging the pictures is asked to “tell” the story or “describe” the relationships.

124

CLARK

Resolving analogies, even when all information is presented visually (as in some items on the Progressive Matrices [1983], Leiter International Performance Scale [Leiter, 1979] and the Test of Nonverbal Intelligence [1997]) is definitely facilitated if the youngster analyzing the items can employ linguistically mediated reasoning to categorize and meld the elements of the analogous relationships. Although the deaf child may not have to explain why or how the selected response choice appeals to the resolution of the analogy presented, higher-level cognitive processes are demonstrated by children who have acquired and applied skills of logic and reasoning through language. “ASL is a rich and complex language that in no way limits conceptualization or conversation about abstract topics,” Valli & Lucas (1992) explained pointedly. With deaf children who have strong linguistic capabilities in ASL, it may be feasible to translate selected language-dependent measures and conduct assessment in the primary language of the child (ASL). The psychologist must exercise considerable caution in doing so, however. Not all concepts translate easily or readily. Some items may translate comfortably without compromising the essence of the item. Yet, some seemingly straightforward questions do not translate readily from one language into another. For example, hearing preschool-aged children might well be expected to be able to provide an answer to a question such as “What shines in the sky at night?” Likewise, through ASL, a young, preschool-aged deaf child may be perfectly capable of vividly and distinctively describing images of shimmering moonlight or twinkling starlight in the night sky and equally capable of distinguishing glowing candlelight and glaring headlights as not shining from above. Yet, a direct translation into ASL of the generic meaning of the English verb to shine (without a specific point from which the shining emanates) is not feasible. For many deaf children, educational experiences reinforce acquisition of information through memorization and repetition more than through inquiry and investigation. The kinds of thinking skills often assessed through verbal measures of intelligence and cognitive function may be less familiar to or “exercised” by deaf students. With deaf children and adolescents who demonstrate proficient language skills and a broad repertoire of vocabulary, it may be possible to utilize tests that would be considered measures of “verbal” reasoning skills and to translate items from one language (English) into the child’s language (ASL) or to present items in English (as a written language) through print. Analyzing results from such assessment, however, must take into account not only linguistic factors, but experiential and educational factors that may influence the individual deaf child’s approach to and style of thinking. On several nonverbal measures of cognitive function (such as the Test of Nonverbal Intelligence, the Leiter International Performance Scale, and Raven et al.’s Progressive Matrices) the conceptual notion of reasoning by analogy is approached through juxtaposition of geometric patterns or through rearrangement of pictures of objects that may be associated analogously with

3.

PSYCHOLOGICAL EVALUATION

125

one another. Nonverbal problems involving reasoning by analogy generally appeal to deaf children who are bright and who appreciate a cognitive challenge. On nonverbal tests, such items are not posed through language. Items are presented visually and no explanation of response selection is expected. The novelty of such problems can be observed visibly as energizing to some children. If administration of both nonverbal and verbal measures of reasoning by analogy is attempted with a deaf child, it is preferable to present the nonverbal assessment items first. Through use of visually presented materials and permitting nonverbal indications of response choices, the psychologist may determine whether the child comprehends the task expectation and can grasp the notion of reasoning by analogy. Even if a standard, nonverbal test of analogous reasoning is not administered, utilizing pictorially presented practice items is one technique that can be useful for launching into this type of reasoning problem. Although a deaf child may initially not comprehend what is expected if confronted merely with verbal items (as on the Similarities subtest of the Wechsler Scales ) and asked to reconcile how the concepts those words represent are related, showing the child pictures of objects and supporting the child in arranging sets of pictures of related objects by category can help illustrate task expectations. For example, given pictures of a soda can, a coffee cup, and a watering can, the child might well be able to group two of the items as containers for something to drink, or might reconcile all three as vessels for containing liquids. With such adaptations, and if the child has sufficient linguistic skill to comprehend the items from the Similarities subtest, it is often feasible to administer this so-called Verbal subtest from the Wechsler Scales to school-aged children who are deaf. Deaf students with reasonably well- developed sight reading skills often recognize the key words from the Similarities subtest of the WISC-III in printed form. Most of the items themselves are well within the experiential base of deaf youngsters (e.g., articles of clothing, types of foods, common appliances, units of measurement, and so forth). Some specific items may arguably not be within a deaf child’s range of experience. Also, this type of verbal reasoning may not be fostered in the educational and life experiences of many deaf students. Observed difficulty in handling this type of reasoning may thus indicate more about the deaf child’s experiences than about a given child’s cognitive potential or capacity. On the Wechlser Scales and other tests that contain similar subtests, short-term auditory sequential memory is measured through repetition of numbers in series of increasing length. One might presume that it is feasible to translate spoken numerals into manual presentation of the same series of numbers. Yet, administered with deaf children, the visual–manual presentation of numbers from the Digit Span subtest is not the same measure of short-term sequential memory for random digits that it is as an auditory– vocal measure administered with hearing children. There may be qualita-

126

CLARK

tive information that the psychologist can learn from and observe about a child’s approach to focusing on the visual presentation of a series of numbers and reproducing the sequence of numerals manually. Qualitative observations of the child’s degree of concentration, ability to sustain effort, encoding strategies, and retention skills may have some usefulness. However, normative scoring tables based on samples of hearing children cannot be presumed to apply to deaf children when such an adaptation of test administration is made. It is my clinical experience that, when possible, it is worthwhile to administer at least portions of the Verbal subtests of the Wechsler Scales with school-aged deaf students. Reporting diagnostic impressions through qualitative analysis of the child’s approach to and responses on items can contribute to describing features of the range of information with which the youngster is familiar and the approaches to problem solving and thinking the youngster demonstrates. Scoring, however, cannot be presumed valid when standardized procedures for administration are modified. The psychologist cannot report scores nor presume that scores could reflect the youngster’s “true potential.” In describing observations, the psychologist must be cautious and consider/acknowledge the deaf child’s experiential base, cultural orientation, preferred language, sensory capacities, and breadth of information. Case Example A 5-year-old who was profoundly deaf, and the youngest of a family of five including Deaf parents and two siblings who were also attending a School for the Deaf, was referred for cognitive assessment. Using subtests from the Wechsler Preschool and Primary Scale of Intelligence—Revised (WPPSI-R), the youngster was doing well in the one-to-one assessment session. Because administration of many of the items on the Verbal section is supplemented with pictures on this version of the Wechsler Scales, portions of those subtests were attempted. Early items on the Information subtest involve selecting one of six pictures that best illustrates an appropriate response to a verbally posed question. Not surprisingly, given the constellation of his family, this child had age-appropriate language skills in American Sign Language. He was easily able to converse through ASL, ask and answer questions, and even to contemplate and discuss “whys” and “wherefores.” One item on the subtest poses the question, “Which do we read?” The child was expected to scan, select, and point to one of six pictures on the stimulus page. This examiner posed the question through ASL. With great confidence, the 5-year-old pointed not to the drawing of a book, but to the drawing of a telephone. True enough! In the context of his life experience, with his parents and siblings using a TTY with the telephone, the telephone was indeed an instrument that he observed family members reading.

3.

PSYCHOLOGICAL EVALUATION

127

• The fourth element to consider in selecting tests that may (or may not) be appropriate for use in an evaluation with a deaf child is the response modality involved. Conventional wisdom is that so-called “nonverbal” tests do not place deaf students at a disadvantage. If the response to a test item involves manipulating blocks, marking on paper with pencil, arranging pictures in a sequential or preferential order, matching on the basis of color or shape without having to name the color or shape, then deaf children should be able to perform without hindrance. Indeed, such modes of response are relatively favorable for most deaf children. Even in administration of “nonverbal” measures where all information is presented visually and instructions can be conveyed readily, the manner of response expected of the deaf child needs to be considered with care. Some performance-type measures are scored both on the basis of accuracy of response and on speed of response. If timing is an element on which evaluation of performance is based, then conveying the information that the psychologist is using a stopwatch and that speed counts is critical. If the child does not know speed will count, the youngster may approach the task quite differently. Some children work with increased efficiency under timed conditions. Some demonstrate signs of anxiety. Others work with haste and reduced accuracy. Observing the child’s performance is the responsibility of the psychologist. Additionally, the examiner must ensure that the deaf child knows when to begin a task and to indicate reliably when the task is completed. Conscientiously making eye contact and nodding to one another is widely accepted as such acknowledgment. In conducting nonverbal cognitive assessments with deaf children, it is also important for the psychologist to know the child’s visual acuity and to assess for integrity of visual–perceptual and visual–motor abilities. “Nonverbal” measures tend to present information visually and to rely on perceptual, spatial, and organizational skills in task performance. Assessment tasks may involve visual–perceptual–motor components (as in copying and drawing tasks) or may be essentially “motor free” (as in pointing or sorting tasks). If a deaf child evidences deficits on measures of visual–perceptual or visual– motor abilities, then results obtained on nonverbal cognitive measures must be interpreted with extreme caution. Results may not reflect cognitive deficits as much as compromise of perceptual or motor skills. Common assessment measures for this domain include the Motor-Free Visual Perception Test- Revised (MVPT-R; Colarusso & Hammill, 1996), the Developmental Test of Visual-Motor Integration (VMI; Beery, 1997), Visual Motor Gestalt Test (the “Bender-Gestalt”; Bender, 1938), and the Developmental Scoring System for the Rey-Osterrieth Complex Figure (Bernstein & Waber, 1996). Although English-dependent test response requirements may be fraught with risk of bias or error when applied with deaf individuals, avoiding all measures that are language-dependent is not prudent. As psy-

128

CLARK

chologist Marc Marschark pointed out, “cognitive development refers to the increasing knowledge and mental abilities that are seen in children, as they get older. Over time, the mind grows both in its contents (that is, knowledge) and in the ability to understand, remember, and use those contents” (p. 151). He continued, “… as more complex thinking develops, mental abilities become increasingly interlinked and children are able to use them with increasing flexibility.” He added, “When I think of intelligence in deaf children, I think about their ability to take what they already know and apply it in new ways in new situations” Marschark (1997, p. 153). Indeed, as children grow and mature, their cognitive development, demonstrated level of intellectual functioning, and language proficiency are intertwined. Too often, I have seen professionals wrongfully assume that not employing any measures that are language-dependent is the preferred way to evaluate deaf children or, at the very least, a favor to the deaf child. I would assert, however, that to ignore or avoid language issues in the comprehensive assessment and psychological evaluation of children who are deaf is unconscionable. The responsibility of the qualified psychologist working with deaf children is to acknowledge language issues conscientiously: Through item analysis, note the language demands inherent in test items. Accommodate the child’s preferred and primary language(s). Compare the child’s performance on language-dependent items and those for which no verbal or linguistic response is expected or necessary. For school-aged students who have a fair degree of literacy, provision of print as a supplement for administration of verbally posed items is an appropriate accommodation. Subtest items can be printed in large font size with a handful of items per sheet. Plastic page protectors can preserve these pages for repeated use. As with any modifications and/or accommodations, the clinician should note not only deviations from standard administration of test items, but also whether application of a similar modification might be beneficial for the student in the school setting. For deaf students who are linguistically competent in both ASL and English, many assessment items can be presented through English words (presented in written form or possibly through the combination of amplification, speechreading, and fingerspelling). It is significant to note the modalities through which a deaf student understands verbally posed questions. If a student is stumped by a word in print (such as vehicle), but obviously understands the question containing the word and is able to offer a reasonable response when the item is translated to ASL (such as using the classifier for vehicle), that observation is significant. By the same token, a deaf student whose primary language is ASL and who demonstrates strong literacy skills in English (as a language of print) may recognize the word vehicle in print and the connotation of categorical inclusion that such a vocabulary item implies. Reading the question in print, rather than simply seeing the question translated into ASL, may color the complexity of re-

3.

PSYCHOLOGICAL EVALUATION

129

sponse that the student offers. In addition to thinking in terms of ordinary passenger cars, limousines, and taxis, the student who is sophisticated both in English and ASL might also think in terms of vans, lorries, diesel trucks, mopeds, motorcycles, and amphibious military vehicles as well. • The fifth element to consider is scoring. One aspect is the scoring method employed and another is the cohort against which the deaf child’s performance will be statistically compared. Very few test instruments have actually been standardized with a large normative sample of deaf children. Although valuable assessment information may be gained by utilizing tests that have not been normed on deaf children, the scores yielded must always be interpreted with caution when “hearing” normative scores are referenced for children who are deaf. Also, scoring methods must be appropriate in relation the child’s preferred communication modality, linguistic proficiency, sensory capacities, and cultural experiences. Brauer, Braden, Pollard, and Hardy-Braz (1998), in a chapter concerning the psychological assessment of Deaf people wrote, “As is the case for all culturally diverse groups, the interpretation of test scores is the most important consideration in the testing of the deaf population. Interpretation is the process of assigning meaning to assessment results.” (p. 310) One author explained, “This may or may not imply the need for deaf or hard-of-hearing test norms,” (Pollard, 2002). By way of illustration, he described the applicability of a screening tool for neurological impairment in which the task content and the scoring should be fair for hearing, deaf, or hard-of-hearing respondents, regardless of their preferred communication modality (if the instructions are adequately conveyed). Pollard pointed out, “Special norms should not be needed and, if developed, could obfuscate evidence of neuropathology that might exist if an individual were deaf because of factors that might also contribute to causing neuropsychological compromise ….” Such factors, of course, may be revealed in the individual’s medical history. Observation of strategies the child employs, the individual’s style of problem solving, sophistication of reasoning, ingenuity of thought, response to probes and cues—all of these contribute to the formulation of diagnostic impressions. In conducting intelligence testing, the psychologist must observe the youngster’s manner, style, behaviors, and responses. How the child executes items during administration of tests and how the child relates to the examiner are of critical diagnostic importance. So much of testing appears to be about numbers and scores. Age and grade equivalency scores, percentile ranks, and standardized scores (all of which are figured on the basis of tables of norms) have a place in the assessment process to be sure. Yet, scores alone are entirely insufficient to provide meaningful information through which to inform a formulation and offer useful recommendations.

130

CLARK

Selecting Instruments for Assessment of Cognitive and Social/Emotional Functioning of Deaf Children Assessment of intellectual functioning does not provide an absolute measure of cognitive “wherewithal.” Assessment measures compare one individual’s performance on a given set of items to a cohort or a supposedly representative sample of individuals who have taken the same test. Test items offer a sampling of the individual’s capabilities, approach to problem solving, learning style, and relative talents and deficits. An intelligence quotient (IQ) may provide a global estimate of cognitive ability, but it is the more rich clinical description and analysis of approach, style, and interpretation of an individual’s cognitive profile that the psychologist contributes to the evaluation process. With deaf children referred for psychological evaluation, quite frequently the referral question to be addressed pertains to whether the child has a cognitive disability. Conventional wisdom suggests that in assessing deaf children, the best way to separate intellectual ability from issues of language acquisition and linguistic proficiency is to use tests with reduced language demands or so-called “nonverbal tests” of intelligence (Braden, 1992). Brauer et al. (1998) distinguished two types of nonverbal tests. There are “performance tests that require children to manipulate objects.” (p. 306) These include items on the Performance section subtests of the Wechsler Scales and the psychomotor assessment tasks contained in the Extended Merrill-Palmer Scale, CID Preschool Performance Scale, and Mullen Scales of Early Learning. There are also “motor-free tests that do not allow children to manipulate objects” (p. 306) such as with Raven’s Progressive Matrices or the Test of Nonverbal Intelligence. The Wechsler Scales are probably the most popular of individually administered tests of intellectual functioning. There are three versions of the scales, one for young children (Wechsler Preschool and Primary Scale of Intelligence—third edition or WPPSI-III), one for school-aged children (Wechsler Intelligence Scale for Children—third edition or WISC-III), and a third for older teens and adults (Wechsler Adult Intelligence Scale—third edition or WAIS-III). Each version is composed of several subtests. The subtests cluster into those that rely heavily on verbal and linguistic skills (Verbal subtests) and those in which information is presented visually and individuals demonstrate reasoning and problem solving through manipulation of pictures, puzzles, and paper/pencil tasks (Performance subtests). The Performance section subtests of the Wechlser Scales are the most popular of all the tools used with deaf children to assess aspects of intelligence (Braden & Hannah, 1998). Two reliability studies have included samples of deaf children. One found good reliability for the Performance section subtests of the Wechsler Scales (Maller & Braden, 1993), and the other found a good correlation with other nonverbal IQ tests (Braden, 1992).

3.

PSYCHOLOGICAL EVALUATION

131

The Leiter International Performance Scale, the revised Leiter, and forms of Raven’s Progressive Matrices cover a narrower range of cognitive skills than the Wechsler Performance section subtests. Whenever possible, such measures should be used in conjunction with tests that tap a wider variety of skills. The Leiter may well be the instrument of choice with deaf children who have difficulty with frequent changes in directions and sets of tasks, as one encounters with some other tests. However, with very young children (under the age of five), the score a child earns may suggest ability commensurate with age-level expectations even when such levels of competency are not observed on other measures or in the context of daily learning activities. Very high or very low scores on the Leiter should be interpreted cautiously. To assign an IQ classification on the basis of one test is not advised. On Raven’s Matrices and the TONI-3, all task information is conveyed visually. No verbal or signed response is expected in indicating response choices. These tests lend themselves comfortably to assessment with deaf children. Either test used as a singular measure of cognitive functioning might best be viewed as a screening measure or as a broad indicator of level of intellectual functioning. Any measure of intellectual functioning is “best” used as one part of a multidimensional evaluation. If at all possible, corroborate results on one measure through administration of at least a second measure of cognitive function. Forty years ago, the respected psychologist McCay Vernon advised that “it is necessary to give at least two performance scales” (Vernon & Brown, 1964, p. 418) in assessing intelligence among deaf children. The practice is a sound one. The diagnostic information that a trained psychologist can gain from administering at least two nonverbal measures of cognitive function can be very valuable. If results are similar on the two measures, the complimentary results are mutually reinforcing. If results differ, then item analysis, task analysis, and process analysis may contribute to the formulation of a diagnostic profile of the individual’s capabilities. Contrary to conventional wisdom in assessing deaf children, I do not suggest relying exclusively on the Performance Scale subtests of the WISC-III. In circumstances when deaf children are placed in public school settings and expected to compete academically with hearing children, assessment using language-based measures is a particularly important consideration. Also, the so-called “Verbal” section subtests draw on aspects of abstract reasoning and mental manipulation of symbolic constructs not tapped by so-called “Performance” measures. Much of higher-level learning depends on flexibility of thought, abstract reasoning, generalization of concepts, application of symbols, and learning through language (whether signed, or written, or spoken language). Verbal tests of intelligence designed for and normed with hearing individuals are, however, never to be used to estimate or “measure” deaf individuals’ intelligence. Skilled administration and interpretation of a deaf student’s approach to so-called verbal items can yield rich descriptive information

132

CLARK

about the student’s capabilities without having to report scores per se. Also, results can help inform decisions with regards to school placement and educational options recommended for a particular deaf student. If the psychologist selects the Wechsler Scales for administration with a deaf student, administration of both the Performance cluster of subtests and the Verbal section subtests is suggested whenever that can be accomplished. In my clinical experience, children whose profile of scaled scores on the Verbal section subtests are as much as or more than two standard deviations discrepant from the profile of scaled scores on the Performance section subtests are at substantial risk for academic failure and feelings of social inadequacy in “mainstream” educational settings. Case Example A bright, charming, 15-year-old who was born deaf had attended a school for the deaf throughout her early school years. She communicated through a combination of ASL as well as signed and spoken English. She was active in figure skating and competitive swimming. Friendly and outgoing, the teen aspired to attend college and was anxious to participate more fully in the social circles of her home community. She and her parents contemplated the option of her attending the local public high school instead of continuing at the school for the deaf. Results of academic achievement conducted at her school indicated that in reading comprehension and composition skills in English, she was functioning at the level typically expected of hearing students in the middle school years (6th to 7th grade level). She demonstrated command of numerical reasoning and computation skills commensurate with expectations for ninth graders. She felt “superior” to some of her deaf classmates in terms of academic performance. Yet, in some portions of the curriculum and in comparison with age contemporaries in the public school, she was achieving considerably below grade-level expectations. Still, she and her parents wanted to consider the option and came for evaluation to obtain objective data to help inform their decision-making. Throughout administration of the Wechsler Scales, numerous cognitive strengths were evident. She understood task directions without any difficulty. She worked with good concentration and effort. On timed tasks, her responses were quick and accurate. She monitored her work well and self-corrected minor errors before indicating satisfaction with her performance on tasks. She was reflective in approaching novel problems and employed alternative strategies if an initial attempt to resolve a challenging item proved unsuccessful. She understood items from the Verbal subtests and answered questions with creditable responses. Yet, the subtest scaled scores she earned on the Verbal section subtests clustered at the low end of the “Average range” and below whereas on the Performance section

3.

PSYCHOLOGICAL EVALUATION

133

subtests, she earned scaled scores that clustered well above that range in the “High Average” to “Superior” range of function. On the Wechsler subtests, a scaled score of 10 is “average” and the standard deviation is ± 3. Thus, scaled scores above 7 and below 13 fall within the “average range.” This adolescent earned scaled scores of 13 to 17 on the Performance section subtests of the WISC-III. The raw scores obtained on Verbal subtests would correspond to scaled scores between 6 and 8. The sum of scaled scores on the Performance subtests yielded a PIQ of 128 (the mean being 100 and standard deviation being 15). The sum of scaled scores on the Verbal section (although not reported as an IQ) would yield a standard score that was some 40 points lower than the PIQ she earned. The teenager could rise to and certainly deserved an academically rigorous and challenging educational program. Her aspirations for attending college seemed realistic. Her parents and teachers certainly needed to support that aspiration and prepare for her doing so. In the school for the deaf, she excelled in comparison with other students her age and was socially popular. However, her experiential background differed from that of hearing teenagers. She admitted concerns that she might feel marginal in social situations at the local high school (as the only deaf student, as a “new” student, and perhaps viewed as one with “special” or unique needs). She realized that for nearly all instruction and interactions, she and her teachers and her classmates would necessarily rely on “triangular” communication (through an interpreter). Ultimately, this bright and vivacious teenager did transfer from the school for the deaf, but did not enroll in her local public high school. There was another educational option that seemed to suit her needs and capabilities that was within commuting distance from the family home. A number of deaf students were attending high school on a tuition basis in a specialized program within a large, comprehensive public high school. That program had an enrollment of between 30 and 40 deaf and hard-of-hearing students. Program staff included trained teachers of the deaf, educational interpreters, counselors, tutors, and administrative support personnel. In that program, this adolescent would have opportunities for mixing both with deaf students and hearing students. She could participate in selected academic courses and extracurricular activities in the “mainstream” of the public high school with the support of tutors and skilled interpreters. She could also take challenging courses in “self-contained” small class settings with instruction from teachers of the deaf and interaction with deaf classmates with whom she could communicate directly. On the basis of her profile, background, circumstances, and individual preferences, this alternative educational option seemed to address her academic, social, and linguistic capabilities most appropriately. In clinical notations made during assessment sessions, the psychologist records observations of attentional qualities and interactional style of the

134

CLARK

child. Descriptive information about the child’s presentation should always be included in the report of the child’s evaluation. Beyond qualitative observations, behavioral checklists and rating scales can be quite useful measures to include in assessment of developmental and psychosocial function. The Vineland Adaptive Behavior Scales (Sparrow, Balla, & Cicchetti, 1984) includes items for describing social skills, skills involved in activities of daily living, communication skills, and motor functions. Administration of the Vineland is through a semistructured interview with the child’s parents and/or care providers. Items on the motor skills domain and daily living skills domain are applicable for use with deaf children. However, the items included on the communication domain and social domain ratings are fraught with content and context issues that make their utilization largely inappropriate when applied in the assessment of deaf children. Although not normed with deaf children, tools such as the Behavioral Assessment Scale for Children (Reynolds & Kamphaus, 1992), the Child Behavior Checklist (Achenbach, 1991) and the Conners’ Rating Scale (Conners, 1989) can be applied in the evaluation process. These are behavioral checklists filled out by parents and by teachers. The recent revision of the Behavior Rating Inventory of Executive Function (Gioia, Isquith, Guy, & Kenworthy, 2000) has some normative data obtained on studies with deaf children. The CBCL, BASC, Conners’ Scales and BRIEF can be useful in assessment of features of a child’s attentional qualities, adjustment, activity level, and selfcontrol. The Meadow/Kendall Social-Emotional Assessment Inventories (with school-aged and preschool-aged forms) were designed specifically for use with deaf and hard of hearing students. The instrument can facilitate ratings of social/emotional adjustment and of self-image based on behavioral observations (Meadow-Orlans, 1983). Case Example Two little boys, each 3½ years of age, and each enrolled in preschool level programs at two different schools for the deaf, presented separately for evaluation. There were many similarities in their presentation. Each of the boys was congenitally deaf and born to parents who were themselves Deaf and graduates of schools for the deaf. Each boy had older siblings. The siblings were also deaf and, like so many Deaf children of Deaf parents, the older children were doing well linguistically, academically, and socially. However, neither of these toddlers seemed to be developing in a manner that might be expected for a young, deaf child with older Deaf siblings and Deaf parents. Presumably, each of the boys had the advantage of early and unencumbered access to visually conveyed language. American Sign Language was the primary language of each of their homes. In their preschools, ASL was the language of instruction. Both little boys, however, were referred for evaluation because of failure to acquire and develop language.

3.

PSYCHOLOGICAL EVALUATION

135

In the context of an interdisciplinary team approach to diagnostic assessment, each of these youngsters was scheduled to be seen by the developmental pediatrician, child psychiatrist, pediatric psychologist, and language specialists. Parents and school personnel were asked to complete questionnaires and rating scales to help describe the boys’ behavioral tendencies. The pediatrician took the medical history, conducted a physical exam, and interviewed the boys’ parents to obtain family, social, and developmental histories. The child psychiatrist participated with the pediatrician during part of the parental interviews and also saw each child individually. The psychologist conducted assessment of cognitive skills. The language specialists used a play-based assessment session to capture features of communication and interaction on videotape. The psychologist, child psychiatrist, pediatrician, and language specialists later reviewed the videotaped session and discussed observations of behavior, communication, interaction, and attentional qualities as a clinical team. There was nothing remarkable in either of the boys’ respective medical histories. They were each full-term infants delivered following uneventful pregnancies, as reported by their mothers and substantiated in their medical records. Like their parents and siblings, each of the boys presented with known, congenital, bilateral, sensorineural hearing loss of profound degree. Prior to the age of 3, neither boy had received any intervention services. At 3, the age at which preschool-level programming for deaf students commenced, each was enrolled at a school for the deaf. Their families lived close enough to the schools that each boy lived at home with his family. One child was attending the alma mater of his parents. The other boy had Deaf grandparents living nearby and was often cared for by members of the extended family. By observation, during their individual evaluation sessions, clinicians noted that each of the boys rarely initiated eye contact with any of the adults, including their parents. If eye contact was made, each of the boys sustained that gaze only briefly. Despite efforts to engage the boys in reciprocal play (such as taking turns rolling a ball back and forth), one of them actually never participated in turn-taking play and the other did not persist with the activity. One seemed to idly touch, pick up, and subsequently discard toys offered to him. Left to investigate objects in the room on his own, he sometimes reached for toys and played with them in a solitary manner. For example, he would run a toy truck over the rug and then pick up the truck and watch the wheels spin. The other boy showed a different pattern to his investigation of the room. He noticed objects that were apparently attractive to him not only on the floor and countertop, but also high up on shelves. He readily climbed up on chairs and tables in an attempt to reach the objects that he noticed. Whereas one child seemed to move about the room rather aimlessly, the other seemed swiftly purposeful and determined in his movements. Both remained at any given activity only for short periods of time and both could be described as “hyperactive.”

136

CLARK

Trying to engage one boy in formal, psychomotor assessment tasks proved extremely challenging. He did not sit at the table. He moved about the room, sometimes resting by sitting or laying on the floor. He could be enticed to pick up and briefly investigate objects. Left to his own devices, he did fit wooden geometric shapes into a form board, scribble on paper with markers, and drop beads into the opening of a plastic bottle. When toys were placed slightly out of his reach, and he noticed them, he would touch the examiner’s wrist and seemed to expect the examiner to assist in reaching for the toy. For some time he seemed captivated by the changing image of a screensaver on a desktop computer and by a rhythmically swaying pendulum on a decorative clock. Testing with the other youngster had a different “flavor.” With the furniture in the room carefully arranged to place the examiner at eye level and directly across the table from him, and with potentially attractive/distracting objects carefully tucked away in cupboards so as not to be visible, this other youngster did sit at the table and was engaged successfully for a formal assessment session. When assessment materials were revealed, he often reached for objects before their use could be demonstrated to him. Yet, he was attentive to the examiner during assessment tasks, at least briefly. Despite obvious impulsivity and limited attention span, on nonverbal measures of psychomotor competencies, he displayed age-appropriate psychomotor skills. Although their histories and initial presentations were remarkably similar, the formulations about and subsequent recommendations made for these two children were quite different. One boy was diagnosed with Pervasive Developmental Disorder or PDD (on the Autism spectrum of disorders) whereas the other youngster was diagnosed with Attention Deficit Hyperactivity Disorder or ADHD. Brauer et al (1998) asserted, “Of all assessment, the social–emotional assessment of deaf people is probably the most difficult” (p. 309). The authors also pointed out that “few tests in this area are nonverbal.” With very young children (like those just discussed) the psychologist relies more on clinical observation and behavioral descriptions supplied by those who know the child well than on formal assessment instruments of social/emotional function to form clinical/diagnostic impressions. There are some nonverbal assessment techniques—such as sorting picture cards depicting children engaged in a variety of singular and group activities and eliciting children’s drawings—that lend themselves to working with deaf children. Utility of and cautions about projective interpretation of children’s drawings has been discussed in the previous section. Projective tests are psychological tests that are based on the premise that “given a sufficiently ambiguous stimulus, a subject’s response will be the result of his or her own projected personality. Expressed another way, the picture reveals the nature of the artist; the story reveals the nature of the au-

3.

PSYCHOLOGICAL EVALUATION

137

thor; the percept reveals the nature of the perceiver. Thus, children, in their responses to ambiguous but standardized test stimuli, can reveal to the trained observer needs, concerns, coping styles, ability to integrate and tolerate affect, capacity to test reality, and perceptions of oneself and others” (Mondell & Clark, 1994). In a chapter titled “Psychopathology” (Pollard, 1998), Robert Pollard wrote about the use of the mental status exam (MSE) with deaf people. He wrote, “The MSE is an interview procedure often conducted by psychiatrists, psychologists, and other mental health professionals when assessing new patients. Although somewhat varied in its depth and methodology, the MSE generally involves questions and observations pertaining to a hierarchy of mental, emotional, and psychosocial functions, from matters as basic as awareness of one’s surroundings, to emotional features, to intelligence, to social judgment. Conducting the MSE with deaf persons usually requires special considerations” (p. 181). He advised that clinicians must be very cautious not to misattribute Deaf community sociocultural variations to problems in the more subjective areas tapped in the mental status exam. Indeed, the psychologist must be prudent and cautious in not overattributing pathology to the behavioral presentation of a deaf child. Behaviors that adults perceive as problematic may prompt referral of a deaf child for psychological evaluation. The young, deaf child who has precious little language with which to negotiate, or who has precious little access to language that is perceptible and understandable to the child may “act out” in an apparently aggressive, impulsive, or belligerent manner. Behavior rating scales are typically filled out by parents or by care providers and/or by teachers. Results of scoring on such scales may simply quantify observed/reported apparent aggression, impulsivity, or belligerence without offering any insight into underlying causes of such behavior. Behaviors that a textbook or rating scale might describe as “abnormal” or “dysfunctional” may indeed serve a very functional and adaptive purpose in the life of a deaf child. In the absence of shared language and effective communication among children at a playground, pushing other children in order to retain one’s turn on a swing set may be more functional for a deaf child than constantly capitulating to the behavioral assertions of other children. In the absence of sufficient language to explain or anticipate changes in schedules, rigidly adhering to routines may not be indicative of abnormal compulsive tendencies on a deaf child’s part. Rather, achieving a sense of predictability by insisting on control of circumstances may serve the child in gaining a sense of equilibrium out of seeming chaos. The tantrums of a child on entering a van may signify troubled memories associated with past incidences of physical restraint or abusive discipline experienced in transit and the tantrum-like behavior deserves to be evaluated thoroughly. Difficult behaviors may serve either functional or dysfunctional purposes. The incidence, the surrounding circumstances, and the qualitative

138

CLARK

contributors to observed behaviors all deserve careful consideration and evaluation. Brauer et al (1998) made the recommendation that psychologists “supplement traditional in vitro psychological assessment (e.g., in the psychologist’s office) with in vivo assessment (e.g., direct observations and interviews with people in relevant settings)” [p. 312]. Case Example An 8-year-old deaf girl was referred for evaluation with complaints of increasingly aggressive, demanding, out of control behavior exhibited both in the school setting and in her extended-day after-school program. The etiology of her profound hearing loss was an intrauterine viral infection. She had been examined by a pediatric neurologist and had documented abnormalities of brain structures (revealed on brain imaging studies) also attributed to the effects of prenatal exposure to the viral disease. By history and description, as well as by observation, her behavior was impulsive and poorly modulated. When excited, she flailed her arms and breathed rapidly. When upset, she dissolved in tears. When content, she tended to be overly demonstrative about her satisfaction. When frustrated, she rarely pursued tasks to completion. During the evaluation, considerable information about her level of cognitive functioning, style of learning, interests and abilities, and ratings of her behavioral features were obtained through formal assessment. She had quite sufficient linguistic facility in ASL to participate in a play-based, semistructured clinical interview with a clinician who was fluent in ASL. The documented encephalopathy accounted for her observed impulsivity and dysregulation. The reason for recent escalation in problematic behaviors was not revealed, however, until clinicians conducted observations of the girl in interactions with other children and collected more detail about the school and extended day programs. Educationally, she was enrolled in a small class of deaf students in a program for deaf and hard of hearing children located in a public school. Only a few deaf students stayed for the extended day program. In the afternoon, the deaf children were included with many hearing children in recreational activities. Comments from program staff consistently noted that the deaf girl “required structure.” It became evident that when she could anticipate events and activities, she complied with the schedule well. Sudden or unexpected changes or transitions “set her off.” If adults who were proficient signers provided explanations of schedules, rules, consequences, and behavioral expectations, the girl would attend to the explanations. She tried to clarify (through signing) her comprehension of what was explained. Often, repetition and reiteration and dialog were needed to assure mutual understanding. Yet, some of the adult staff members signed with limited proficiency. They did not engage with her in such dialogue. Except for her classmates and students in one other class at the school, the vast majority

3.

PSYCHOLOGICAL EVALUATION

139

of children in her school and the after-school program did not sign at all. It was with adults and children with whom interaction through language (her primary language being ASL) did not occur that incidents involving pushing, stomping, and screaming did occur. Inadequacy of meaningful communication access, coupled with the vulnerabilities of her neurobehavioral style, contributed to the presenting “problem.” 4. SPECIAL CONSIDERATIONS Re: CODAs A hearing child of parents who are Deaf is often referred to as a “child of deaf adults” or CODA. In families where one or both of the parents is Deaf, yet one or more of the children is hearing, a hearing child may well acquire Sign Language quite naturally as a first or primary language. The hearing child also learns spoken language from many sources including members of the immediate and extended family, in the neighborhood, through interactions with nursery school pals. The hearing child becomes bilingual in the dominant signed language of the home and in the dominant spoken language fostered by those connections. If there are developmental concerns about such a hearing child (whose parents are Deaf), referral for an evaluation might be appropriately addressed by clinicians who regularly see individuals who are deaf. Although the child is hearing, the parents may feel most comfortable dealing with clinicians who understand and respect the social, cultural, and linguistic context of the child and family. In our clinic at the Children’s Hospital, Boston, we routinely accept referrals for developmental or psychological evaluations of hearing children of Deaf parents. Advantages to this run from the mundane to the critical. Simply being able to transact ordinary tasks such as completing registration, validating a parking slip, and filling out paperwork with a clinic coordinator who can communicate fluently in ASL has its advantages. Beyond the benefits of parents and children feeling more at ease or comfortable, there are enormous qualitative and clinical advantages to consider in directing referrals of CODAs to clinicians who specialize in working with Deaf individuals. Parents share an account of the child’s history and provide background information through direct interaction with the physician or clinicians involved. Clinicians who communicate easily and fluently in both ASL and spoken English conduct their child’s language assessments and psychological assessments. A hearing child of Deaf parents who has had limited opportunities for interaction through spoken language may be delayed in acquisition and development of spoken language. That delay may be apparent to and of concern to family members, a pediatrician, a playgroup leader. Yet, as a hearing child raised in the context of the Deaf community, that child may have rich opportunities for interaction through signed language. Language assessment conducted by speech/language clinicians fluent in both signed

140

CLARK

and spoken language can address the bilingual capacity of the child. The hearing child may have perfectly age-appropriate command of ASL, and that needs to be documented and acknowledged. Or, there may be evidence of compromised development of language in either signed or spoken modalities. Although unfortunate, it is not uncommon for Deaf parents raising hearing children to devalue their own fluency with signing and to de-emphasize or discourage their hearing children’s use of signing for communication.1 Not being able to converse easily through spoken language themselves, the Deaf parents may then be inadvertently reducing the richness of their child’s language stimulation. A child raised under such circumstances may be found to be delayed not only in acquisition and development of spoken language, but also in sign language. Assessment with regard to issues of language and communication skills is one matter. Another consideration is the diagnostic sensitivity required in sorting out behavioral and social/emotional symptoms. One of the most common referral questions with which our clinicians grapple is the differential diagnosis of “problematic” behaviors. Might the boisterous, noisy, disruptive behavior of a rambunctious 4-year-old be a manifestation of underlying Attention-Deficit/Hyperactivity Disorder? Of inconsistently applied discipline from parents who are unaware of the racket the child makes when not in their sight? Of ineffectual enforcement of behavioral expectations? Of an emerging behavioral disorder that requires strident intervention? The possibilities are numerous. Sorting through the diagnostic process in order to offer a differential diagnosis and meaningful recommendations for the child and family is required. Case Example The well-educated, vocationally high achieving Deaf parents of two hearing children requested that one be seen for evaluation by a psychologist familiar with Deaf culture and fluent in ASL. The family physician failed to comprehend their request, which would have necessitated going outside the “provider list” of their managed-health care contract. Both hearing children attended the local public school. Of course, the physician recognized that the children were fluent in ASL, but also recognized that they were competent in spoken English and could see no purpose to having an evaluation conducted by a clinician fluent in ASL. The parents persisted and insisted on a referral to a provider experienced in working with individuals who are Deaf. Eventually the physician approved the referral “out of network.” 1

This is essentially the same behavior as when immigrants refuse to speak their devalued native language with their children, hoping to encourage their rapid acculturation. In both cases there is a misunderstanding about the child’s capacity to acquire multiple languages fluently and to be in no way harmed by exposure to additional languages.

3.

PSYCHOLOGICAL EVALUATION

141

In explaining their reasoning to this psychologist, they indicated that ease of communication for themselves was not the central issue driving their request. Rather, they had long harbored concerns about their hearing child’s seemingly peculiar style of interpersonal interaction. They were proud of the child’s extraordinary and uncanny ability to read—reading words well in excess of age-level expectations. Yet, they also felt the child was temperamental and overly fastidious. They perceived discomfort in their child when routines were upset and when there were crowds of people around. They described him as “a loner,” preferring his own solitary pursuit of interests to playing with neighborhood children or even familycentered leisure activities. The parental interview was conducted in depth and with ease because the psychologist and the parents could converse in a common language (ASL). On the basis of that interview, a collection of background information, and a thorough evaluation including formal testing, we diagnosed Asperger Syndrome. The parents were not familiar with the designation, but the description captivated them. The diagnostic criteria for this disorder described their child to a tee. Their long-standing concerns were validated. They were not “brushed off” with the dismissive presumption that the child’s behavioral traits could be chalked up to “the parents are deaf.” That was the true value of having the hearing child of Deaf parents seen in a clinical setting by a psychologist well-experienced with Deaf culture and language. CONCLUSION Psychologists learning to perform and/or conduct psychological assessments of deaf children have, as part of their training and experience, a vast territory to explore. In addition to a solid foundation in child development and psychology, the psychologist who works with deaf children must be willing and able to meet each child’s linguistic style and communicative needs. Appreciation of Deaf cultural and linguistic distinctions and respect for the perspectives and capabilities of Deaf people need to inform and infuse this work. Through the material presented in this chapter, I have tried to illustrate an attitudinal set and the special knowledge and skills that apply to performing evaluations with deaf children. Only a small proportion of deaf children are born to and/or raised within families who align personally and socially with Deaf friends and/or family members. Conscious declaration of a social and cultural identity may emerge around adolescence for deaf youngsters who have opportunities to form relationships with Deaf peers and Deaf adults. Even with deaf children and/or family members who feel no affiliation with the Deaf community, specialized skills on the part of the psychologist are necessary to work effectively with deaf children. There are essential factors to consider in choosing and applying tests appropriately with deaf children—including considerations of the purpose, instructions, item or task content, re-

142

CLARK

sponse modality, and scoring underlying selection and application of assessment instruments. Interpreting test results in the context of the deaf child’s experiential base, cultural orientation, preferred language, sensory capacities, and educational experiences is the responsibility of the psychologist. The psychologist’s interpretation of assessment results informs the diagnostic formulation and guides the recommendations that follow. Culturally affirmative psychological evaluations of deaf children are performed by applying specialized skills and knowledge, appreciating the context of the individual child, and genuinely respecting the culture, language, experiences, and values of Deaf people. ACKNOWLEDGMENTS Central points in the discussion of factors to consider in selecting and administering tests with deaf individuals were drawn from the writings of Robert Pollard, PhD, with his consent and collaboration. As a psychologist who writes and lectures widely on mental health and health care topics affecting deaf consumers and professionals, his expertise and perspective are of particular value to those of us who share this subspecialty field in psychology. Dr. Pollard, an associate professor of psychiatry (psychology) at the University of Rochester School of Medicine and Director of the Deaf Wellness Center, generously reviewed the organization and content of the chapter. As a predoctoral intern, Lauren Kopans read drafts of the work in progress. In training to become a psychologist who will work with deaf children, she contributed considerable clarity and provocative thoughtfulness in our discussions of the case material. In committing some of what I have learned from experience to paper, I also acknowledge a psychologist whom I hold in immense esteem—Richard Thompson, PhD. At a time when few Deaf people had earned advanced degrees, Dr. Thompson pioneered a path and later generously guided me in the beginning of my career. REFERENCES Achenbach, T. M., (1991). Child Behavior Checklist. Burlington: University of Vermont. Ball, R. S., Merrifield, P., & Stott, L. H. (1978). The extended Merrill-Palmer Scale instruction manual. Chicago: Stoelting. Beery, K. (1997). The Beery-Buktenica developmental test of Visual-Motor integration: Administration, scoring and teaching manual (4th ed.). Parsippany, NJ: Bender, L. (1938). A visual motor Gestalt Test and its clinical use. Albany, NY: American Orthopsychiatric Association. Bernstein, J., & Waber, D. (1996). Developmental Scoring System for the Rey-Osterrieth Complex Figure. Odessa, FL: Psychological Assessment Resources, Inc.

3.

PSYCHOLOGICAL EVALUATION

143

Braden, J. P. (1992). Intellectual assessment of deaf and hard of hearing people: A quantitative and qualitative research synthesis. School Psychology Review, 21, 82–94. Braden, J. P. (1992). Assessment of children who are deaf and hard of hearing. The School Psychologist (Division of School Psychology, APA), 46(2), 8–9, 14, 17. Braden, J. P., & Hannah, J. M. (1998). Assessment of hearing impaired and deaf children with the WISC-III. In D. Saklofsky & A. Prifitera (Eds.), Use of the WISC-III in clinical practice (pp. 175–201). New York: Houghton-Mifflin. Brauer, B., Braden, J., Pollard, R. Q., & Hardy-Braz, S. T. (1998). Deaf and Hard of Hearing People. 297–315. Brown, L., Sherbenou, R. J., & Johnsen, S. K. (1997). Test of nonverbal intelligence-3 manual. Odessa, FL: Psychological Assessment Resources. Brown, L., Sherbenou, R. J., & Johnsen, S. K. (1997). Test of nonverbal intelligence (3rd ed. TONI-3). Austin, TX: Pro-ed. Buck, J. (1992). The house-tree-person projective drawing technique: Manual and interpretive guide (Rev. ed.). Los Angeles, CA: Western Psychological Services. Colarusso, R. P., & Hammill, D. (1996). Motor-free visual perception test-revised: Manual. Novato, CA: Academic Therapy Publications. Conners, C. (1989). Conners’ Rating Scale. North Tonawanda, NY: Multi-Health Systems. Geers, A. E., & Lane, H. S. (1988). CID Preschool Performance Scale. Chicago: Stoelting. Gioia, G. A., Isquith, P. K., Guy, S. C., & Kenworthy, L. (2000). Behavior rating inventory of executive function. Odessa, FL: Psychological Assessment Resources. Glickman, N. (1996). What is culturally affirmative psychotherapy? In N. Glickman & M. Harvey (Eds.), Culturally affirmative psychotherapy with Deaf persons. Mahwah, NJ: Lawrence Erlbaum Associates. Goetziner, M. R., & Houchins, R. R. (1969). The 1947 coloured raven’s progressive matrices with deaf and hearing subjects. American Annals of the Deaf, 114, 95–101. Harris, D. B. (1963). Goodenough-Harris drawing test manual. Cleveland, OH: Psychological Corporation. Kaufman, A. S., & Kaufman, N. L. (1983). Kaufman assessment battery for children. Circle pines, MN: American Guidance Service. Knoff, H. M., & Prout, H. T. (1990). The kinetic drawing system for family and school: A handbook. Los Angeles: Western Psychological Services. Leiter, R. G. (1979). Leiter international performance scale: Instruction manual. Chicago: Stoelting. Maller, S. M., & Braden, J. P. (1993). The criterion validity of the WISC-III with deaf adolescents. In B. A. Bracken & R. S. McCallum (Eds.), Wechsler Intelligence for Children: Third edition. Journal of Psychoeducational Assessment. Advances in psycho-educational assessment (pp. 105–113). Brandon, VT: Clinical Psychology. Marschark, M. (1993). Psychological development of deaf children. New York: Oxford University Press. Marschark, M. (1997). Raising and educating a Deaf child. New York: Oxford University Press. Marschark, M., & Clark, M. D. (1998). Psychological perspectives on deafness. Mahwah, NJ: Lawrence Erlbaum Associates.

144

CLARK

Meadow-Orlans, K. P. (1983). Meadow/Kendall Social–Emotional Assessment Inventories. Washington DC: Gallaudet University Press. Mondell, S., & Clark, T. (1994). Psychological testing. In K. Robson (Ed.), Manual of clinical child and adolescent psychiatry (pp. 61–92). Washington, DC: American Psychiatric Press. Morgan, A., & Vernon, M. (1995). A guide to the diagnosis of learning disabilities in deaf and hard-of-hearing children and adults. American Annals of the Deaf, 139(3), 358–370. Mullen, E. M. (1995). Mullen scales of early learning, manual. Circle Pines, MN: American Guidance Service. Naglieri, J. A. (1988). Draw a person; Quantitative scoring system manual. New York: The Psychological Corporation. Padden, C., & Humphries, T. (1988). Deaf in America: Voices from a culture. Cambridge, MA: Harvard University Press. Pollard, R. Q. (2002). Ethical conduct in research involving deaf people. In V. A. Gutman (Ed.), Ethics in mental health and deafness (pp. 162–178). Washington, DC: Gallaudet University Press. Pollard, R. Q. (1996). Professional psychology and deaf people: The emergence of a discipline. American Psychologist, 51(4), 389–396. Pollard, R. Q. (1998). Psychopathology. In M. Marschark & D. Clark (Eds.). Psychological perspectives on deafness (Vol. 2, pp. 171–197). Mahwah, NJ: Lawrence Erlbaum Associates. Raven, J. C., Court, J. H., & Raven, J. (1983). Manual of Raven’s Progressive Matrices and vocabulary scales. London: Oxford Psychologists Press. Reynolds, C., & Kamphaus, R. (1992). Behavioral Assessment Scale for Children. Circle Pines, MN: American Guidance Service, Inc. Sparrow, S. S., Balla, D. A., & Cicchetti, D. V. (1984) Vineland adaptive behavior scales. Circle Pines, MN: American Guidance Service. Stutsman, R. (1931). Merrill-Palmer scale of mental tests. Chicago: Stoelting. Sue, D. W., Arredondo, P., & McDavis, R. (1992). Multicultural counseling competencies and standards: A call to the profession. Journal of Counseling and Development, 70(4), 477–486. Valli, C., & Lucas, C. (1992). Linguistics of American sign language: A resource test for ASL users. Washington, DC: Gallaudet University Press. Vernon, M., & Brown, D. (1964). A guide to psychological tests and testing procedures in the evaluation of deaf and hard-of-hearing children. Journal of Speech & Hearing Disorders, 29(4), 414–422. Wechsler, D. (1993). Wechsler intelligence scale for children (3rd ed.). San Antonio, TX: The Psychological Corporation. Wechsler, D. (1997). Wechsler adult intelligence scale (3rd ed.). San Antonio, TX: The Psychological Corporation. Wechsler, D. (2002). Wechsler preschool and primary scale of intelligence (3rd ed.). San Antonio, TX: The Psychological Corporation.

4 Culturally Affirmative Inpatient Treatment With Psychologically Unsophisticated Deaf People With instructions on the use of psychosocial skill cards Neil Glickman Westborough State Hospital Assumption College

INTRODUCTION: A DIFFICULT CLIENT John, 25 years old and deaf from birth, was referred for inpatient treatment after being subdued by the police at a bar, where he had been drunk, and was threatening to stab himself and others with a knife. John’s life history was tragic. After being beaten and abandoned in infancy by his drug-using mother, he passed through a series of foster homes, residential programs, and hospitals. Along the way, he experienced neglect, physical abuse, and sexual abuse. He never finished high school and was nearly illiterate. He worked in sheltered settings and at fast food restaurants with the help of a job coach, but because of repeated arguments with his supervisors he never held a job for long. Although he had learned some American Sign Language, he was not fluent. John had life-long problems with aggression and self-harm. He had no friends. His style of relating to others was to push himself on them, sometimes literally: He would pressure lower-functioning peers into having sex. As an adult, John developed an alcohol problem. He made numerous suicidal attempts and was hospitalized many times. In the hospital, he would complain that people misunderstood and mistreated him. He would be belligerent, provocative, and threatening. He would demand that staff take care of him, then accuse them of trying to hurt him. At his worst moments, John had paranoid and bizarre delusions. He also showed symptoms of Post-traumatic Stress Disorder, such as flashbacks and dissociation. 145

146

GLICKMAN

After “graduating” from a supervised residence to an independent apartment, John had repeated confrontations with the police. He was arrested for assault and battery, larceny, disorderly conduct, and violation of probation. John’s childhood experience was marked by the absence of attachment figures, especially early in his life. The most stable figures were counselors, some of whom worked with him for several years at a time. But John didn’t value counseling or understand it. To him, counselors were people who did things for him. He had no sense that counseling involved addressing his problems rather than other people’s. Despite his lifetime of counseling, John had great difficulty identifying feelings. Although he was very needy, defensiveness and paranoia prevented him from acknowledging weaknesses and lack of skills. Instead, he blamed everyone else for his difficulties. He was interested in money and independence but uninterested in developing the skills that would make these things possible. In his mind, he already had the work skills he needed—he just needed someone to give him a job. How does one engage someone like John in mental health treatment? How does one help him make behavioral changes that will prevent him from spending his adulthood in jail? I am the unit director of a psychiatric inpatient unit for deaf people in acute psychiatric crisis at Westborough State Hospital—the Mental Health Unit for Deaf Persons, or “Deaf Unit” for short. Apart from being deaf and having psychiatric problems, our clients on the Deaf Unit often have little else in common. They range from people with mental retardation to people with graduate degrees, from people with minimal language skills to fluent users of ASL and English, and from informed consumers of mental health services to people who can’t explain what a mental hospital is or why they find themselves in one. Some are prominent members of the Deaf community whereas others have a marginal relationship to both the Deaf and hearing worlds. Like many other programs designed around the communication needs of deaf people, we are asked to serve this diverse range of ability and limitation in one setting. Although our clientele is diverse, it is skewed toward people who are less psychologically sophisticated. John is a fairly representative client: a person with language deficits, behavioral problems, and low academic and vocational achievement. A giveaway that we are dealing with one of these clients is their lack of clear diagnosis. By the time they reach us, our clients have often been diagnosed with Schizophrenia, Bipolar Disorder, Intermittent Explosive Disorder, a personality disorder, and a few disorders “not otherwise specified.” There might be a debate in their file about mental retardation, autism, or psychosis. Sometimes they arrive on a veritable pharmacy of medications.

4.

INPATIENT TREATMENT

147

Not Your Average YAVIS Client Most psychotherapists can describe clients they believe are “good candidates for psychotherapy.” Almost everyone wants these clients. Sometimes referred to as YAVIS (young, attractive, verbal, intelligent, successful), these clients seek out psychotherapy, are capable of talking about their lives with intelligence and insight, appreciate their therapists, have the means to pay for treatment, and get better. These clients recognize therapists as legitimate helpers, have a capacity for human relatedness, and can work hard to achieve their goals. A therapist with any talent at all who limits himself or herself to YAVIS clients is virtually guaranteed success. I learned this when, after years of working in state inpatient facilities and community mental health centers that served poor people, I spent a few years at a Health Maintenance Organization (HMO) and had a private practice in an affluent area. Working with YAVIS clients was fun and rewarding. There are many deaf YAVIS clients. The generalization that deaf people are somehow incapable of insight-oriented psychotherapy is an oppressive distortion. Sussman and others have pointed out that such generalizations arise more often from therapists’ limitations than those of their clients (Sussman, 1998; Sussman & Brauer, 1999). I suspect that anyone who has worked for any length of time with deaf people has some sense of what is meant by low functioning and how such people differ from more resourceful, successful, and competent deaf YAVIS people. Chapter 2 in this volume addresses the many reasons why some deaf people do not function well. Low functioning deaf people have also been called “traditionally underserved.” I prefer a phrase that gets to the heart of the treatment problem: psychologically unsophisticated. Characteristics of Psychologically Unsophisticated Deaf People Psychological sophistication implies a world view in which inner experience is attended to. Psychologically sophisticated people are said to understand their feelings, to have empathy, and to have insight into how people think, feel, and behave. In addition, they value talking about their feelings. By contrast, psychologically unsophisticated people have these characteristics: • They are not introspective or self-observing; they may be unable to name feelings and moods. • They do not value self-understanding. • They have difficulty perceiving how other people think and feel. • They have difficulty recognizing that others’ points of view might be as valid as their own. • They tend to blame others for interpersonal conflicts, not easily seeing their own contributions.

148

GLICKMAN

• They do not understand or value mental health treatment. They do not see mental health professionals as credible helpers. • They do not have an informed, accurate view of mental health system. When psychologically unsophisticated clients are admitted to the Deaf unit, they may not understand where they are or why. Lacking the skills to collaborate with professional helpers, they might expect to be taught or controlled. Alternatively, they might expect us to solve all their problems for them. Invited to join a “group,” they might not know how to join in. At initial evaluation, they might not be able to provide a coherent narrative of their own histories. They might not appreciate our interest in their personal lives. Some clients’ lack of psychological sophistication is related to a history of inadequate communication with parents and other key people. If they never had the experience of talking with their parents about feelings, it is no surprise that they lack the skills of recognizing and managing their feelings now. Also, because much of the hearing world is not made accessible to deaf people, they often have a more limited fund of information, including general information about human psychology and relationships. For other deaf people, a lack of psychological sophistication is due to the presence of functional limitations such as language and cognitive limitations. Many were deprived of sign language in childhood and never developed fluency. Many do not read beyond a second- or third-grade level. Without intact language, such clients’ capacity for verbal abstract thought is limited. They may show a limited attention span, grossly limited fund of knowledge, poor social skills, and limited experience using conversation to solve problems. Other clients have cognitive limitations such as low intelligence and learning disabilities. Clients who are both cognitively and linguistically impaired are the most difficult to engage in counseling. It is usually quite difficult for hearing people without extensive experience in deafness to understand how their usual patterns of speech and thought may not be clear to psychologically unsophisticated deaf clients, even when an interpreter is present. In chapter 1 of this volume, I argue that even a sophisticated deaf patient can get lost in a hearing treatment setting. Psychologically unsophisticated patients, in my opinion, can only be served effectively in a specialized program like ours. For example, suppose a therapist is running a therapy group on “relapse prevention,” using an interpreter. She wants to help her clients learn to anticipate triggers that might lead to relapse. The problem for an interpreter working with an unsophisticated deaf person in a hearing setting is that concepts like “trigger” can be difficult to explain. To understand this concept a client must be able give an accurate, sequential account of a behavior: first A, then B, then C. She must understand cause-and-effect statements and conditional statements. She must be able to generalize from specific behaviors to general patterns. It is natural for hearing therapists to assume that their clients have these abilities, but for deaf clients who don’t have ab-

4.

INPATIENT TREATMENT

149

stract abilities or the necessary vocabulary, the discussion is beyond their comprehension. An interpreter can not fix this. The hearing clinician, of course, has no idea what is going wrong. The well-meaning hearing clinician rarely appreciates the huge chasm between the worldviews of unsophisticated deaf clients and her own. The interpreter is left to try to bridge an enormous linguistic, cognitive, and cultural divide. At Westborough we often spend many sessions on a single complex idea such as relapse or trigger. Most of our deaf staff explain difficult concepts patiently and naturally. They communicate in a way that might be called “grass roots deaf.” This can mean breaking down ideas into simpler components, giving lots of examples, finding a “hook” that is particularly relevant if you’re deaf, using pictures, using role play, sharing stories, or using a simplified form of ASL. I remember once answering the TTY at a community counseling center where I worked. I didn’t know the caller. Our conversation began, “Hello. Counseling center, Neil Glickman here. GA.” “I need a girlfriend. GA.” The client did not bother with the usual niceties of introducing himself, asking about our services, or requesting an appointment. Instead, he went right to the point. If I had approached him with the mindset that he understood and valued counseling, and that he wanted therapy to explore his inner experience, I would quickly have discovered the limitations of my mental health training. The biggest mistake clinicians make in trying to do work with psychologically unsophisticated deaf people is assuming this is business as usual, that they don’t have to rethink their basic approach to therapy. We can’t expect these clients to meet us in our linguistic and conceptual world. We need to meet them in theirs. Models That do not Work for Psychologically Unsophisticated Deaf People Early in my career as a mental health professional, I worked mainly from a combination of client-centered (Rogers, 1961) and psychodynamic models of treatment. From both these theories, I understood the key therapeutic element of my work to be the therapeutic relationship. I encouraged clients to talk about their lives, especially their inner lives, and gave little direct feedback. I didn’t try to help them to particular outcomes. I assumed they had an inner map that would guide the therapy process. I expected that sooner or later they would replay with me in therapy the same dynamics that they had experienced with parental figures. I would respond more helpfully that those parental figures had. This would help them develop insight and

150

GLICKMAN

change long-standing behavioral patterns. If we worked together long enough, they would develop an internal representation of me that would be like a kind, supportive inner voice, coaching them through life. Usually I imagined I was providing a reparative, if not reparenting, experience for them. If clients would not engage with me in this process, I saw them as “resistant” or as “poor candidates for psychotherapy.” That was in the days before managed care, before I had studied cross-cultural psychotherapy, and before I knew much about cognitive-behavioral therapy (CBT). Even when I was doing this work, however, I had difficulty explaining it to psychologically unsophisticated people. I have to admit that I didn’t always bother to explain to these clients what we were doing. I thought that the value of talking with me about their problems was self-evident. My treatment plans were vague, even to me. They had goals like “improved self-esteem,” “improved mood,” or “improved relationships,” but didn’t say how we would accomplish these goals. It would all happen through the magic of the therapeutic relationship. If clients don’t see any inherent value in talking with you, don’t strive for or value insight, and don’t see you as a credible helper, psychodynamic therapy cannot succeed. Psychodynamic therapists can offer some empathy and support, but the tools they are really counting on—transference interpretation, insight, a change in internal object representations, the therapeutic relationship itself—are abstract, and well outside the domain of the unsophisticated clients’ world views. Personal warmth and self-revelation, which might draw clients into a closer relationship, are minimized in psychodynamic treatment because they might compromise the development of transference. Furthermore, the psychodynamic clinician is not supposed to “sell” the treatment. Thus, the psychodynamic model ties the hands of a clinician attempting to work with an apparently “unmotivated” client. Skilled psychodynamic and client-centered clinicians do wonderful work, but these models apply best to high functioning clients. When I was in graduate school, out of personal interest, I also learned something about mental health work with culturally different people and with poor people. I began to make comparisons between this work and work with Deaf people (Glickman, 1996). At the same time, managed care arrived and pushed me, as it has pushed most clinicians today, to find brief, structured, and effective interventions, and to become more clear about my method. When, after years of work with YAVIS clients, I returned to working primarily with psychologically unsophisticated deaf inpatients, I realized that we have just scratched the surface of ways to make mental health treatment helpful for them. The following therapy strategies derived from psychodynamic and similar models usually fail with psychologically unsophisticated deaf clients: • Open-ended group or individual sessions directed by the client(s), • Free association,

4.

INPATIENT TREATMENT

• • • • • •

151

Holding the development of insight as the primary goal, Asking “why” questions, Exploring the distant past for the reasons why clients behave as they do, Talking without doing or reenacting, Interpreting unconscious dynamics, Maintaining a neutral or blank therapist stance.

Creating a Model of Treatment That Works To engage psychologically unsophisticated people in mental health treatment, we need a clear and concrete model of treatment that avoids the pitfalls and problems just described. We need to educate clients about the model and motivate them to use it. A talented team of deaf and hearing coworkers at Westborough State Hospital has developed an approach based on the broad model of cognitive behavioral therapy (CBT) and its recently developed variant, Dialectical Behavior Therapy (DBT; Linehan, 1993). Our model consists of many pieces that work together, including: 1. Cultural affirmation, as defined in chapter 1; communication accessibility and an understanding of cross-cultural dynamics, 2. The cautious use of psychotropic medications, with target symptoms clearly defined, integrated with the overall treatment plan (see chap. 2), 3. Sensory Movement Interventions, especially when used as coping strategies and means of self-regulation, as described in chapter 5, 4. Careful coordination without outside providers, family members, the legal system, and so on. Family therapy and advocacy for our patients’ rights when needed, 5. Specialized interventions as needed for specific presenting problems, such as sexual offending (chap. 8) or substance abuse (chap. 7), 6. Careful integration between individual, group, and milieu interventions so as to increase chances that clients will use the skills taught and that these skills will generalize to new settings, 7. Creative, individualized treatment interventions. Item 7 will be the focus of this chapter. CBT is essentially about developing skills for handling emotional and interpersonal problems. It accomplishes this through a variety of tools, including self-monitoring, skills training, and collaborative behavior planning. CBT, like all models of psychotherapy, also involves expressing feelings safely and receiving emotional validation in a special kind of human relationship, one with a professional psychotherapist. The relationship and emotional support remain essential, but the relationship is not the essence of the treatment. It is the context for helping clients develop new life skills.

152

GLICKMAN

Our version of the CBT treatment context is particularly transparent and easily explained to clients. It includes: • Setting concrete rules and boundaries for individual and group therapies, • Explaining to our clients what we are doing, • Providing education about mental illness and counseling/psychotherapy, tailored to the client’s level of understanding, • Attending to our vocabulary; putting enormous energy into simplifying psychological concepts and communicating and teaching them effectively, • Maintaining safety and an atmosphere based on the reinforcement of client strengths; preventing hostile confrontations, • Thanking and appreciating clients for their participation. Dialectical Behavior Therapy (DBT), is a form of CBT developed in Oregon by psychologist Marsha Linehan for the treatment of borderline personality disorder (Linehan, 1993). Although only a few of our clients have this diagnosis, many have problems with impulse control, identity, and self-soothing, which are all skills that DBT specifically addresses. We have borrowed other ideas from DBT: • The idea of pretreatment (our extension of the DBT idea of precommitment.) Until the client has joined with us in collaborative goalsetting, the treatment does not begin, • The idea of therapy interfering behaviors, which disrupt the treatment and damage the therapeutic relationships, returning the client to pretreatment status, where the process starts over with “repairing” the connection with the treatment team, • An emphasis on teaching of coping skills (based on DBT “distress tolerance” and “emotion regulation” skills) and social skills (based on DBT “interpersonal skills”), • The use of milieu staff as coaches for psychosocial skills taught in individual and group therapy. Dialectical Behavior Therapy also clarifies two overriding goals of all psychotherapy. These goals are said to be in a dialectical relationship to each other—although they are opposites, both are essential. On the one hand, we must provide validation for clients, helping them feel better about who they are. On the other, we want to help them change. Any form of therapy must provide both validation and support change. Therapists validate by listening well, by showing empathy, and by respecting our clients’ points of view. As I describe the change processes that follow, I assume the therapist already shows skills at emotional validation. Clients will not engage in a process of change if they don’t feel safe and “held.” This is yet an-

4.

INPATIENT TREATMENT

153

other reason why deaf clients typically don’t do well in hearing settings, even if an interpreter is present. Hearing settings may not be emotionally safe and may not provide the validation that can occur when you are among “your own people.” Our day-treatment program provides both expressive therapy (strategies for validation) and skill training (strategies for change). We focus on training staff how respectful validation and skill training go hand in hand. Within our supportive context (CBT + DBT), our treatment proceeds with an individualized combination of simple cognitive-behavioral strategies: psychosocial skill training, self-monitoring, collaboratively developed behavioral plans, active practice with staff as coaches, and therapy commitment-enhancement strategies. Each of these strategies is adapted for our psychologically unsophisticated deaf clientele, and we are constantly working to improve them and to think up new ones. In the sections that follow, I describe some of these treatment components, and show how we used them with John. PRETREATMENT With psychologically unsophisticated people, much more attention must be given to the initial process of engaging and motivating clients for treatment. In DBT, the first phase of treatment is referred to as precommitment. Marsha Linehan wrote (Linehan, 1993): Until the necessary verbal commitments are made, the therapist should not proceed to discuss any other topic. There should be no investigations of the client’s past to get clues about her ‘resistance’; no discussions of the client’s emotional misery or life chaos to get a better understanding of why she simply can’t commit right now; no extended heart-to-hearts about the client’s relationship with the therapist (except as part of the initial orientation and mutual assessment) to see whether the client can work with this particular therapist. This point is crucial because the clients sometimes balk at one or more of the DBT commitments, saying that they aren’t ready or able to make a commitment at that level right now. At the same time, they present themselves as so desperate that therapists become desperate to help as quickly as possible. (p. 445)

Psychotherapy and mental health treatment can be said to begin when client and therapist share an understanding about goals and methods. Whatever the client’s diagnosis, if he has not “signed on” to participate meaningfully in treatment, we tell him he is in pretreatment. This is a reflection of reality. It would make little sense to attempt to treat a client for depression, for instance, who denies feeling depressed and says she doesn’t want your help. Sometimes a client makes a treatment contract only to withdraw it later through words or behavior. A client, for instance, who seemed to have agreed to work on developing anger control skills, avoids

154

GLICKMAN

the individual and group settings where anger management skill training could occur. In this case, there is no point in proceeding with the work. We need the client to be a customer of therapy, rather than a visitor. In our inpatient setting, the negotiation of a treatment contract falls mainly to the assigned primary therapist, who might be any member of the clinical staff. In practice, we find that treatment contracts need to be negotiated and renegotiated as clients engage and disengage. With psychologically sophisticated clients, the pretreatment phase is often brief. These people likely sought out counseling for themselves. They are likely accustomed to collaborating with professionals, and motivated to pursue a particular method. By contrast, with psychologically unsophisticated clients, establishing a meaningful treatment plan and motivating them to participate is often more difficult than doing the treatment. Many established programs that work with cultural differences have incorporated some version of pretreatment. For instance, Dolgin, Salazar, and Cruz (1987) described an inpatient unit for Hispanic Americans that includes a pretherapy orientation to the treatment process. Dolgin reported that their orientation to therapy group increased client motivation for joining therapeutic groups. In their text on psychotherapy with low-income and minority clients, Acosta, Yamamoto, and Evans (1982) provided an example of a client orientation program that they developed. Sue and Morishima (1982) argued for the importance of pretherapy orientations when working with Asian and Pacific Americans. The main tasks of pretreatment are: • • • •

Educating clients about the treatment process, Educating clients about how to work with the treatment team, Educating clients about their mental illnesses, if appropriate, Establishing enough trust that a beginning therapeutic alliance can occur, • Engaging them in the treatment process, • Making a treatment contract. When clients who were in treatment engage in therapy interfering behaviors such as aggression toward the treatment staff, and return to pretreatment, then there are additional goals of: • Helping clients understand how their problem behavior occurred, • Helping clients find a more skillful way they could have handled their emotion or the environmental stressor, • Helping them repair damaged treatment alliances, • Helping them recommit to the treatment process. Distinguishing treatment from pretreatment is enormously helpful to clinicians. It guides our work, clarifying what we need to do. Clinicians all

4.

INPATIENT TREATMENT

155

too often proceed as if they have a treatment contract, only to become frustrated when clients don’t cooperate. The clinician might then blame the client for the treatment failure. (Mental health clinicians have all sorts of ways to blame treatment failures on clients.) Pretreatment Tools and Approaches So how do we go about engaging our clients? Our main techniques are: • • • • • •

taking the time to explain our model formally, using therapy menus, using visual metaphors and skill cards, story telling, asking permission, engaging them in the process of self-monitoring.

Explaining Our Model: Treatment is Staying Safe and Learning Skills We explain our treatment model in both individual sessions and in a weekly pretherapy group. When we talk with clients about counseling, we talk with them about skills. Skills are broadly conceived, including such things as expressing feelings safely, taking care of oneself, managing emotions, and dealing with other people. We explain that the therapist is like a teacher whose main job is to teach skills. Talking with clients in this way takes some of the mystery and much of the stigma out of mental health treatment. Almost every psychological task can be conceptualized as a skill. Everyone needs these psychological skills; one of the benefits of teaching clients about skills is that one simultaneously teaches staff, who then use what they have learned both with clients and for their own personal growth. Psychologically unsophisticated clients are able to understand this model as long as they have functional language skills. By contrast, the psychodynamic model is a mystery to all but the elite group who have been trained and socialized to use it. “Therapy, What?” is our pretherapy group, in which we review a colorful chart, reproduced here in a less visually interesting black and white, which is also posted on the unit, (see Fig. 4.1). The leaders of Therapy What? group ask clients to explain the chart to them and to each other. We tell them that people often don’t explain things well to deaf people. We care very much that they understand what is going on so we will repeat certain things until we feel confident they understand. Of course, we could simply lecture to them, but it is far more effective to get them involved, filling in what they leave out, commending them, and thanking them for joining in. The chart presents four guiding values, one in each corner: safety, respect, collaboration, and cultural affirmation. Although we don’t usually

156

GLICKMAN

FIG. 4.1

use the English words cultural affirmation with clients, we embody it in the pains we take to explain to clients how to use our program. We often have to explain the concept of values, which easily leads to a discussion with clients about their own values (“What is most important to you? What do you believe strongly?”). Next, we explain the work of staying safe, expressing feelings safely, and learning skills. This is concrete and fairly simple. Staff have parallel tasks of keeping clients safe (setting limits), supporting and validating clients when they express feelings appropriately, and teaching clients various psychosocial skills. In a typical Therapy What? meeting, we also review some specific aspect of the unit’s program. We might ask, “why do people come to the hospital?” or “How does the hospital try to help?” In another session, we might highlight the word collaboration, explain that it means working together, then jump into a role play, with clients playing either clients or staff, showing examples of working together or not working together. Collaboration is a value that has to be taught, practiced and, of course, lived by staff as well as clients. In another session, we might cover attitudes that help or hinder treatment. Sometimes we ask clients if staff respect them and if they respect staff and one another. We ask clients whether they know they have a treatment plan and what is on their plan. (Westborough State Hospital has a sophisticated formal treatment planning process, measured by a validated

4.

INPATIENT TREATMENT

157

scale, which meshes well with our treatment program.) We may discuss the roles of various staff and procedures the unit uses such as rounds, treatment teams, and supervision levels. We may also discuss examples of “therapy interfering behaviors” such as insulting or hurting your therapist or damaging unit property. The group is primarily designed for clients who are not educated about psychotherapy and mental health treatment, but who have enough sign language skill and intelligence to grasp the ideas when they are explained well. Through this group, we’ve repeatedly seen clients with borderline mental retardation and basic signing skills explain that people come to the hospital because they aren’t safe, that the hospital helps them to become safe by teaching them coping skills, and that when they can express feelings safely and have learned new skills they can leave the hospital. Client participation and compliance with treatment increases dramatically when they understand how treatment works. We’ve seen clients explaining the treatment program for visitors to the unit. And we see them help one another— when clients are upset (in DBT terms, dysregulated), we teach them to use coping skills. We often see them help one another with these skills. We also provide pretherapy orientation individually when clients arrive on the unit. We assign a mental health worker, whom we call the client’s advocate, whose job includes reviewing the chart along with orienting clients to the unit’s procedures and expectations. TREATMENT MENUS Another pretreatment tool is the “Treatment Menu.” This is an illustrated list of the kind of assistance we can offer clients. The menu, reproduced in Figs. 4.2a–4.2g, focuses on skill training but also includes other aspects of the treatment program such as medication, psycho-education, family therapy, and disposition issues. I know the very idea of a treatment menu will strike some therapists as grossly oversimplifying the psychotherapy process. Isn’t the therapeutic relationship the locus of healing? How can you reduce therapy to a checklist of skills? There is consensus, backed by research, that the therapeutic relationship is a necessary condition of mental health treatment. Regardless of what treatment paradigm one adopts, one has to have the clinical skills to join and validate clients and help them feel safe. However, therapists become confused, I believe, when they devote their efforts primarily or exclusively toward the establishment of this relationship. They begin to imagine that the therapeutic relationship is a sufficient condition of mental health treatment. They also become confused over what can realistically be accomplished in therapy. In reality, there are a finite number of things we can do, and we can do nothing at all without the client’s informed participation. Presenting clients with a treatment menu and eliciting collaboration in defining

158

GLICKMAN

FIG. 4.2a

FIG. 4.2b

FIG. 4.2c

FIG. 4.2d

specific, achievable goals does not prevent a therapeutic relationship from happening; indeed, it fosters the development of this relationship. Psychologically unsophisticated persons are more likely to participate in a process that makes sense to them and in which they see tangible benefit. The relationship then develops as clinicians and clients pursue their mutually agreed-upon goals.

4.

159

INPATIENT TREATMENT

FIG. 4.2e

FIG. 4.2f

FIG. 4.2g

METAPHORS, VISUAL AIDS, AND STORIES Metaphors are another tool for engaging clients in treatment. Metaphors, of course, are ways of explaining something by analogy. Shakespeare’s “All the world’s a stage, and all the men and women merely players” is a famous example. With psychologically unsophisticated deaf people, it is helpful to have a stack of visual metaphors ready for individual or group work. For example, in the pictures reproduced here (Figs. 4.3a–4.3e), therapy is repre-

160

GLICKMAN

sented as (a) leaving a pit and climbing a mountain, (b) changing the before me into the now me, (c) climbing a ladder, (d) climbing over walls to reach goals, and (e) choosing between paths. The idea of learning skills, although not strictly a metaphor, is also included here. Occasionally clients take the pictures literally. Asked to describe what walls he must climb over to get out of the hospital, one client replied that he didn’t need to go over the wall. He could use the door. To help such clients

FIG. 4.3a

FIG. 4.3b

FIG. 4.3c

FIG. 4.3d

4.

161

INPATIENT TREATMENT

FIG. 4.3e

understand the metaphor, we may put a small table on its side and line the clients up in front of it. We’ll ask them to step over it but before they do they must tell us one thing that must happen before they are discharged. If necessary, we’ll give examples: “you have to find a place to live,” or “You have to stop blowing up.” With this kind of help, almost every client “gets it.” There is a tradition, influenced by Milton Erickson, of using story-telling in therapy. Isenberg (1996) has led the deafness mental health field in bringing together the story-telling traditions in Deaf culture and psychotherapy. A simple way to do this with clients is to tell them a story of a client just like them who came to our program and had important successes and failures. For instance, at one point in our treatment of John, we needed to review the incidents that led up to his arrests and convictions. (Note that I was assigned by the treatment team to be John’s individual therapist.) John said I dwelled too much on the past and that he was ready for a new life. I told him a story about another client who came to our program with a different set of problems and different kind of drug addiction. This client also refused to talk about his past. He insisted he had changed. The past didn’t matter. We warned him that he who doesn’t know his history tends to repeat it, but this client wouldn’t listen. When he was discharged, he became depressed. Then he started using drugs. He got into fights and legal troubles. Finally, he ended up in jail. We had failed to get this client to realize that if he understood his past he would have more control over his life. John listened attentively to the story and then agreed to talk about his own past. Clients can also communicate in metaphors, and a therapist attentive to clients’ use of language can draw on their own metaphors to engage them in treatment. For instance, a client talking about his drug use signs, “I have a rat inside me.” He is not psychotic and doesn’t mean this literally. What he’s

162

GLICKMAN

just done is hand the clinician a way to engage him. “Tell me about the rat,” is one possible reply. “How do we get the rat out of you? What’s feeding the rat? Can we starve the rat?” When a client presented me with this metaphor, we had a great conversation about “the rat”—his drug usage. It engaged him because he provided a meaningful metaphoric expression of his experience. The clinician just needs to notice when a “resistant” client offers these “freebees.” ASKING PERMISSION One of the most powerful ways to elicit client participation is also one of the simplest: asking permission. Clinicians often need to raise topics that our clients would prefer to avoid. This might be a behavior, like a suicide attempt, that the client feels embarrassed about. Or it might be an illegal behavior that a client would prefer to hide. It might be alcohol and drug use that the client is minimizing or denying. In these situations, the therapist wants to get these topics on the table as a focus of treatment. With psychologically unsophisticated persons, the least effective strategy is waiting for the client to bring the topic up. The therapist needs to raise the topic or the treatment will be unfocused. This is especially true if the problem is a socially inappropriate or illegal behavior that the client does not “own” as a problem. John had many socially unacceptable and illegal behaviors that he would have been quite happy never to discuss. The hardest topics for him were his aggression, sexual abuse of others, suicide attempts, and alcohol abuse. Whenever any staff approached these topics with him, his reflex response was to deny and blame others. One way we handled this “resistance” was by asking permission to raise these hard topics. “John, we have something really important to talk to you about, but it’s something that you don’t like discussing. We’ve got to talk to you about this but we’re wondering if you will let us. It is very important that we talk calmly and that you don’t blow up. I think you can do it, even though it’s hard, so I’m asking if you think this is okay. Can we bring up this issue with you? Will you be able to stay calm, listen and discuss calmly? I think you can. What do you think?” If John, or any client, gets defensive (“I didn’t do anything!”), my response is to continue to talk about having the conversation rather than actually doing it. “We’re still wondering if we can talk to you about this. Can you stay calm?” I will proceed to talk about the conversation until the client, usually exasperated, finally agrees that we can talk about the issue, still unnamed. Then we have, in effect, a treatment contract to have a certain kind of conversation. If that kind of conversation doesn’t happen, if the client becomes hostile or defensive, I return to the “meta” level (reflecting on the conversation) and stay there until we get a new commitment. This conversational style embodies the process of pretreatment and treatment. First we agree to have a certain kind of conversation (like we

4.

INPATIENT TREATMENT

163

agree to have a certain kind of treatment). Then we have the conversation (or treatment.) Most of the time, asking permission is much simpler. It simply involves variations on, “Is it okay with you if we talk about this now?” Although clients can say no, I’m continually surprised how often this respectful beginning results in a yes. When they do say no, I’d rather know it before I try to talk to them. If we can’t negotiate to a yes, I may applaud them on their ability to say no calmly, without blowing up, and ask them where they got that skill. I may say that it is very important that they not agree to discuss this subject until they feel ready. I may then follow with a “suggestion” that maybe tomorrow they’ll feel ready to talk about the hard stuff, which would show real courage and growth. SELF-MONITORING, INCLUDING USE OF THE “DIARY CARD” A final treatment strategy during both pretherapy and therapy, a hallmark of the cognitive-behavioral approach, is self-monitoring. A client might keep a daily log of depression, anger, or anxiety. Cognitive-behaviorists use selfmonitoring because they want clients to evaluate their progress in mastering a problem. When clients monitor their own responses, they necessarily become more involved in the treatment. Clients can be asked to rate themselves on sophisticated numerical scales such as the Burns checklists for depression, anxiety, and relationship satisfaction. They can be asked to rate themselves with a smiley face or a frowning face, or by coloring in part of a column. As a pretherapy tool, the primary purpose of self-monitoring is to help clients discover that they can do something that will help them feel better. Before one can work to change a symptom or behavior, one has to notice it is there and take responsibility for it. A nutritionist can ask a client to monitor his food intake. A substance abuse counselor can ask a client to monitor alcohol and drug use. A couples therapists can ask a couple to monitor their arguments. An individual therapist can ask clients to monitor symptoms of depression, anger, or even psychosis. All these interventions are designed to help the clients pay attention to problem behaviors or symptoms, the first step in doing something about them. Interestingly, a client doesn’t even have to accept that she has a problem to agree to monitor whether or not it occurs. We can say, “You observe, and then you tell me if you have this problem.” We use many self-monitoring tools on the Deaf Unit. Our tools are all visual. We explain them in each client’s preferred communication mode. Some involve English words. Others involve pictures. Most involve a combination. Our most basic self-monitoring tool is the “Diary Card,” a technique we have borrowed from Dialectical Behavior Therapy but greatly simplified. Here is one version of our Diary Card (see Fig. 4.4). Clients complete Diary Cards during the morning community meeting. We ask them to rate four basic emotions from 0 (weak) to 10 (strong). Most

164

GLICKMAN

FIG. 4.4

can manage this, although with seriously language-impaired clients we will first sign or gesture the emotion, then ask if the client feels it “a little” and “a lot.” On the flip side of the card, clients list the scheduled activities for the day (therapy groups, work hours, meetings, and appointments). Finally, they select a skill from a posted list of seven coping and social skills (to be discussed later in this chapter) that they intend to practice that day. Each day, we expect our clients to practice their chosen skills. Staff prompt and coach them. Each evening, nursing staff sit with assigned clients, again rate their four basic emotions, help them compare their morning and evening ratings, and then discuss how well they followed their schedule for the day.

4.

165

INPATIENT TREATMENT

Self-monitoring is also an important element of collaborative behavioral plans. When we want to help clients change behaviors, we need to get their agreement that those behaviors need changing, and then give them a tool so they can monitor the behavior. An aggressive client with no English language skills was asked to monitor his aggressive behaviors. Three times a day he recorded the presence, near-presence, or absence of each behavior by circling the appropriate symbol, thumbs-up, thumbs-middle, or thumbs-down. This client was not completely honest in his self-monitoring, so we had staff help him to complete his ratings. Each time he received a complete set of thumbs-up, we gave him a ticket. Later, he could use the tickets to “buy” a desired reinforcer. (See Figs. 4.5a–4.5e.) Most of our clients can read some English. For them, we use selfmonitoring forms that combine pictures and words, or words alone if they prefer. A typical self-monitoring form, presented in Figs. 4.6a and b, is a list of words and pictures of good and bad behaviors with a check mark for client and staff to note when a behavior occurred. The staff check off is used if the self-monitoring form will be used as part of a behavior plan (described later in this chapter) or if the client tends to lie. The client reviews his selfmonitoring form with a staff person according to some agreed-on schedule. This promotes regular therapeutic conversations between clients and staff. Self-monitoring can also be used to encourage client participation in group treatment. After a group experience, the group members are asked to rate the group’s helpfulness as “thumbs-up, thumbs-down, or thumbsmiddle.” They are also asked to rate their own degree of participation in the group. This can be done with another form (Fig. 4.7) or by going around the circle and asking each client’s rating. Over time, we hope that our clients

FIG. 4.5a

FIG. 4.5b

166

FIG. 4.5c

GLICKMAN

FIG. 4.5d

FIG. 4.5e

discover that what they get out of an activity is directly related to how much they put into it. If they notice this, they are on their way to taking responsibility for their own treatment. We are also validating them by asking their opinions, which we take seriously in planning how to run our groups. A client is scheduled for “Coping Skills” group, but at the start of group he is still in bed. He feels depressed and doesn’t want to participate. We persuade him to come to the group to find out if the group will help. We begin the group by asking everyone to rate themselves with a self- monitoring tool

FIG. 4.6a

FIG. 4.6b

167

168

GLICKMAN

FIG. 4.7

called the “Moodometer” (which is described in chap. 5). The client rates himself as low. We get him involved in an activity. He perks up, and at the end of the group, his moodometer rating has risen. We then use his situation as an example for the group: “Which helps more when you are depressed, coming to group or staying in bed?” Clients can rate individual sessions too. With a similar “thumbs up or down” format, they can be asked to rate how hard they worked in the therapy and how helpful they felt their therapist was (see Fig. 4.8). Combining a rating of the therapist and session with a rating of themselves helps to lessen their defensiveness. It may also help them appreciate that therapists

4.

INPATIENT TREATMENT

169

FIG. 4.8

also work on developing skills. Of course, the therapist must be ready for some “thumbs down” ratings! Once our staff members discovered the usefulness of self-monitoring, they began creating new uses for this technique. Our nursing staff asked our communication specialist to develop a self-monitoring form for the side effects of a medication. Our psychiatrist and communication specialist worked together to create a training program for staff and clients, based on self-monitoring forms, on the side effects of antipsychotic, antidepressant, antianxiety, mood stabilizing, and stimulant medications. With another client, staff developed a checklist of behaviors that he needed to show during a trip off hospital grounds in order to demonstrate readiness for discharge. The client took the list with him, knowing exactly what we would ask him

170

GLICKMAN

on return. Clinical staff have used self-monitoring forms to help clients in therapy evaluate their moods and whether specific positive and negative behaviors are happening. Our occupational therapist, demonstrating occupational therapy at its best, asked clients beforehand how well they believed they could complete a complicated craft activity. She also asked them to rate their self-esteem at that moment. She then helped them weave a basket from strips of paper, making a beautiful product that left everyone feeling, “I made that? Wow!” On completing the task, she asked clients to rate again their belief that they could do the activity and their self-esteem. Clients’ scores and clients’ smiles went way up. Many examples of these selfmonitoring tools, including the forms for psychiatric medication side effects, are included on the compact disc that accompanies the text. (The appendix lists the contents of the compact disc.) Whether we are helping clients decrease aggression or self-harm, or working with them to change an addicted behavior such as cigarette smoking, we begin with self-observation, becoming mindful of behavior that previously was done unconsciously, impulsively, or habitually. This intervention alone may decrease the occurrence of the unwanted behaviors. Getting clients to self-monitor has the additional benefit of increasing treatment motivation and compliance and helping foster a collaborative treatment alliance. JOHN’S PRETREATMENT PHASE Engaging John in a meaningful treatment alliance was a formidable challenge. We quickly saw evidence of his aggression on our unit. He gestured menacingly, stared, stalked, invaded others’ personal space, pressured staff and weaker clients to do things for him, and said he was “remembering” how people treated him (i.e., implying that he would get back at them later.) Although he had been arrested numerous times and was facing the likelihood of 6 months in jail, he continued to deny that he was an aggressive person. Years of supportive psychotherapy had not helped him with this. He saw himself purely as a victim. When challenged about his behavior, he rationalized it as an expression of Deaf culture. John did have a horrendous childhood, and he still suffered from PTSD. But we feared some of his previous therapists, in their efforts to engage him and support his fragile connection to reality, had inadvertently reinforced his sense of himself as a victim. We needed to help him accept that aggression was a problem for him and to engage him in the task of reducing his aggressive behaviors. Our pretreatment challenge with John was to establish a therapeutic contract to reduce his aggressive behavior. Because John continued to be very aggressive while denying and minimizing his aggression, we started with a highly confrontational approach that is not typical of our pretreatment efforts. I should note that John had been hospitalized with us before and did have some rapport with several staff members. We made sure these

4.

INPATIENT TREATMENT

171

staff members were present during the confrontation, and we specifically assigned the staff member with whom he felt the closest, our head nurse, to be his support during the confrontation. John had tended to excuse his behaviors as being normal for Deaf culture. We assembled a team of deaf and hearing staff, including our communication specialist, who could serve as arbiters of what was and wasn’t Deaf. We brought John into a room and we role-played each way he threatened people, asking him, “Was that threatening? Was that aggressive?” When he said no, it was Deaf culture, our Deaf staff all told him bluntly that he was wrong. This collective confrontation using Deaf and hearing staff made an impact. John grudgingly admitted his aggression, and for the first time we had the topic on the table as a treatment focus. Our second major intervention was to make an alliance with John’s probation officer. John feared jail. Although the legal system had excused his behaviors for a long time, probation, the police, and local judges were now collectively fed up and ready to incarcerate him. John knew this, which gave us leverage to devise a tight treatment plan with clear behavioral objectives. We developed this program with John and his probation officer. We made a list of behavioral goals, and we suggested to John that he propose to the court that he work with us to meet these goals, which centered on reducing aggression. We were fairly confident the judge, who was looking for some way to help John, would accept this plan. John appeared in court on his outstanding charges, pleaded guilty, and accepted a period of hospitalization based on the newly written treatment plan instead of jail. The list of his treatment goals is reproduced in Fig. 4.9. We phrased the goals as skills, and our task was to teach John these skills. With our confrontational approach, and backed by John’s probation officer, we had gotten some meaningful treatment goals on paper and had John acknowledging sometimes that he had a problem with aggression. But this process is rarely smooth with someone as impaired as John. For the first few months of his hospitalization he cycled in and out of pretreatment. His defensiveness at times worsened into paranoid psychosis. Because he couldn’t read, we translated every skill listed for the court into a pictorial skill card. (John’s case was the genesis of our skill card program.) The first skill was simply identifying threatening and aggressive behaviors. This was related to the skill of stating the real reason he was in the hospital, rather than saying his only problem was needing housing. Other cards showed more advanced skills such as accepting feedback from others. Some of John’s skill cards are presented in Figs. 4.10a–4.10c. We also found metaphors to be a useful way of engaging John, despite his being an exceptionally concrete thinker. At one point I used the DBT metaphor of a runaway train to convey the concept of warning signs. (An earlier clip-art version of this metaphor was developed by Julie Brown, L.I.C.S.W.) Sitting down with John and a mental health worker, I showed him a picture (Fig. 4.11) and asked him to describe what he saw.

172

GLICKMAN

FIG. 4.9

John said he saw a train heading for a bridge that had collapsed. There was a shark in the water. “That’s right,” I said, and added, “you know there were many signs along the track warning the driver about the bridge. Here’s a sign. ‘Warning! Danger!’ The driver didn’t pay attention. He ignored the

4.

INPATIENT TREATMENT

173

FIG. 4.10a “Aggression/ Threaten Is … ”

FIG. 4.10b “You Here Hospital Why?”

signs. When he finally saw the bridge was out, it was too late. He couldn’t stop the train, which fell into the water.” “John,” I said, “you are a little like the train. Your anger starts to build. People around you see it coming. We see the warning signs. We say, ‘stop, be careful, you are headed for a blow up,’ but you don’t listen. You are like the driver. And then you fall into the water.”

FIG. 4.10c “When You Aggressive, Threaten, You Admit”

FIG. 4.11

174

4.

INPATIENT TREATMENT

175

John nodded. “If only we could get you to pay attention before you blow up. If we could get you to stop long before you hit the bridge, what would happen?” “I wouldn’t fall in the water,” he replied. “Yes, exactly!” I responded. “Can we get you to practice that?” John nodded yes. He seemed to “get it.” At the same time, the mental health worker sitting with us also got it, and produced a metaphor of his own. “John, ” he said. “You are a little like a snowball rolling down a mountain. At the top of the mountain, it’s small and easy to stop. But as it rolls down, it gets bigger and bigger till eventually no one can stop it. Wouldn’t it be great if we could help you stop your aggression while it is still small, like the snow ball at the top of the mountain?” John laughed and started joking about throwing snowballs. But he understood and started doing the work. At a later point in therapy, when we were working with John on relapse prevention skills, we referred again to this picture. We discussed with John the warning signs along the track and use that to get him to identify warning signs for his problematic behaviors. It was striking how helpful this metaphor was even with such an exceptionally concrete thinker as John. Another metaphor we used to explain the concept of warning signs was that of a seismograph predicting a volcano. I began the therapy session by handing John five cards (Figs. 4.12a–4.12e) and asking him to put them in order. John did this without difficulty. “Why do we need to know about the volcano before it blows up?” I asked. “People escape,” he replied. “Yes. Now why do we want to know the warning signs of your blow-up before you blowup?” “Stop blow-up,” he answered, but this insight didn’t stay with him easily. John could describe what happened after a behavior, but the concepts of anticipating and avoiding a behavior were very hard for him to grasp. We returned to the train and the volcano metaphors again and again. This work was not easy. Just when we would think John understood and we had achieved a therapeutic contract to teach him skills to decrease aggression, he’d “forget” our past discussions. Then he would sit back passively, watching us explain again how he was in the hospital for aggression and to leave the hospital he had to develop skills to manage his aggression. He would agree and sign a new behavior plan with skill training sessions tied to advances in privilege level, only to show new instances of aggression and paranoia. For months, each time I met with him, I felt I was beginning again. One day, John was upset after a nurse decreased his privilege level because he had behaved in a threatening way. He barricaded the nurse in a room and stood outside the door making threatening comments and gestures. Staff tried to move him away from the door. We pointed out to him that he was acting in a threatening and aggressive manner, and now was the time he had to practice his skills. I was present and reminded John of the anger management skill we had practiced. He became hostile to me also, accusing me of trying to control him and of expecting him to “bow down” to

FIG. 4.12a

FIG. 4.12b

176

FIG. 4.12c

FIG. 4.12d

177

178

GLICKMAN

FIG. 4.12e

me. Eventually, we had to call for a show of force and physically restrain him. This incident was a major setback. John’s problems were more serious than aggression alone. He also could become psychotically disorganized and paranoid. We treated him with both antidepressant and antipsychotic medication. At the time of the incident with the nurse, he was delusional. He thought staff were trying to hurt him, and could not be reasoned with. A few days later, when he said he was ready to process the incident, we began teaching him about paranoia. We did this in our usual way, by producing a skill card (Fig. 4.13). We asked John to describe what he saw in the picture. We role played it and we showed him both the sign and the English word for paranoia. We asked him to explain the concept back to us. Then we role played how he behaved when he was paranoid. As usual, John appeared to understand quickly, but we had to review the picture in nearly every treatment session for weeks. Our goals, in order of difficulty, were that, (a) he could explain what paranoia is, (b) he could give an example, (c) he could describe a time when he had been paranoid, (d) he would accept feedback from staff when he was paranoid, and (e) he could recognize his own paranoia. The engagement and contracting process was the same as it had been in getting him to

4.

179

INPATIENT TREATMENT

FIG. 4.13

deal with aggression. We discussed these behaviors as skills he needed to practice and learn. We told him how learning this would help him in court. We tied skill mastery to privileges. We reinforced progress. We coached and practiced. In addition to skill cards, we used a variety of self-monitoring tools with John. We used the diary cards and ratings of groups and individual treatment presented earlier. The most effective self-monitoring tool was a cycle we drew of John’s behavior on the unit with a rotating arrow in the center. The cycle showed how John engaged for a while in skill training, then started to “forget” his skills and become increasingly threatening and aggressive, followed finally by a confrontation with staff in which he’d lose his privilege level, followed by several days of withdrawal and depression, including some PTSD symptoms, followed by reengaging in treatment. Once we knew the cycle, staff would continually show it to him and ask him, “where are you now in your cycle?” John understood the cycle but he had difficulty grasping the idea that he could depart from the cycle. Sometimes he even used the cycle card to justify bad behavior (i.e., it’s on the cycle so I need to do that next. I can’t help it.). We emphasized the part of the picture that shows John using new behaviors (Fig. 4.14). We reviewed this over and over. Even with this focused work on setting a meaningful treatment plan, and even with the backing of the court, John moved in and out of a treatment alliance with us. Although this was a team effort, I served as John’s primary therapist. Throughout this frustrating work, I found continual support in the idea of pretreatment. If we didn’t have a treatment contract, our work was to get one, over and over again. This notion showed us the path even if it was still covered with rocks and branches.

180

FIG. 4.14

4.

INPATIENT TREATMENT

181

TREATMENT Treatment begins when we and our clients have a shared understanding of goals and treatment method. Because we are an inpatient setting, our treatment goals are always concerned with stabilization of emotions, thoughts, and behaviors so that clients can be safe and ready for discharge. We frame this with clients as learning skills to deal with emotions and other people. The Treatment Milieu Where does the mental health treatment in a psychiatric hospital occur? The variety of therapeutic activities that occur in psychiatric settings are often not coordinated. Clinicians like psychiatrists, psychologists, and social workers meet with clients and then return the clients to the ward or daytreatment milieu. They may imagine that the “real” treatment happens during this individual, family, or group psychotherapy, and the ward essentially holds and contains the client in between these important therapy moments. The psychiatric ward itself is usually managed by nursing staff (registered nurses and direct care workers, the latter often called mental health workers or mental health assistants). Often there is an occupational therapist or other rehabilitation and recreation staff to assist in creating a therapeutic structure for clients. Nursing staff are generally the only staff who work shifts, 7 days a week and 24 hours a day. They manage and treat the clients when the clinical and administrative staff have all gone home. One of the greatest therapeutic challenges in any psychiatric hospital is creating a unified treatment approach. This unification needs to occur across nursing shifts, across clinical disciplines, and between administrative and clinical/nursing staff. The cognitive-behavioral skill training model, if staff accept it, creates a foundation for a unified treatment approach. Psychodynamic treatment models, by contrast, do not because they are not easily understood and implemented by people without extensive psychodynamic training. Psychodynamic models can guide the interventions of highly trained psychotherapists but they are much less useful in guiding the interventions of nursing staff, with whom the clients spend most of their time. When a psychodynamic paradigm is dominant, the psychotherapist staff are likely to imagine that they do the real and important work and that nursing, rehabilitation, and recreation staff are secondary. Psychodynamic psychotherapy is founded on such abstract notions as unconscious motivation, defense mechanisms, transference, object relations, and self-psychology. Most clients and nondynamically trained staff do not understand these ideas; nor do these ideas provide milieu staff with clear, concrete guidance on how to behave with clients. Psychodynamic concepts may be useful for understanding clients and the dynamics between clients and staff. It may be helpful, for example, to understand that a client

182

GLICKMAN

is behaving with staff in the same way she behaved with her parents. This understanding is useful therapeutically, if milieu staff and unit clients can use such insight to guide their behavior. We may help our staff understand transference and countertransference dynamics, but most staff find cognitive-behavioral concepts like skill training easier to use. Thus, we ground the unit milieu in a CBT orientation, and enrich it with psychodynamic discussions whenever it seems relevant. The cornerstone of our CBT and treatment program is skill building. Almost everyone can understand and participate in this. With this practical, simple model, we then find ways to integrate the work of nursing and clinical staff. For instance, treatment groups are colead by clinical and direct care staff. Even “individual” psychotherapy sessions involve several staff (usually a clinician and a mental health worker). Skill building occurs in both individual and group settings. Individual sessions are also useful for addressing motivation and commitment for treatment. The benefit of involving the direct care worker there is that it creates the possibility of follow through between treatment session and work on the milieu. If the direct care worker is deaf and a fluent signer and the clinician is a hearing Pidgin Sign English user, an additional benefit is that the clinician receives help with communication. Beyond that, the deaf–hearing clinical partnership has benefits in diffusing cross-cultural transference reactions that clients may have but be unable to understand and process meaningfully. The challenge in cognitive behavioral treatment is getting clients to practice the skills in the unstructured situations when they actually need them. It’s one thing to practice anger management when you are calm and quite another to do so when you are furious. Cognitive-behavioral therapists usually like to have clients practice the skills in progressively more challenging and provocative contexts. Meichenbaum (1977) originated this technique, which he called stress inoculation. For this to occur, all the staff need to know the designated skills and client behavior plans and have the communication and clinical skills to coach clients “live,” in the moment, when the skills are needed. This can turn each crisis into an opportunity for skill building. Program directors know it is very difficult to get a large therapeutic team to function so smoothly and consistently even when one doesn’t have to worry about competency in a second language. There is some chance of doing this for deaf clients in a deaf treatment program. There is no possibility of live coaching of deaf clients in the use of psychosocial skills in a hearing program dependent on occasional presence of an interpreter. Motivation and skill building occur in individual and group treatment. The skills are further practiced in the milieu, both during and between crises. Validation and positive reinforcement, if the staff are well trained, occur at all times. Finally, the client, nearing discharge, is helped to teach the relevant coping and social skills to the outpatient treatment providers. Ideally, they continue working with clients on the same set of skills, thus increasing the chances that the acquired skills will generalize to real-life environments.

4.

INPATIENT TREATMENT

183

Psychosocial Skill Cards Because many of our clients are illiterate, we, like other deaf programs, have developed pictorial aids for almost everything. A psychosocial skill card is a visual representation of a specific skill such as positive self-talk, or of a situation, like being denied a request, which creates the opportunity to practice a skill. As our program has shifted to an increasing focus on skill acquisition, the usefulness of these cards has become more apparent. We use skill cards: 1. To provide a visual reference of a skill taught in individual and group therapy. Typically, the skill card is shown, the skill is practiced, and the client is praised, 2. As a reinforcer for skill-based behavioral plans. Clients earn skill cards after practicing particular skills. They trade in cards for agreedon reinforcers such as advancements in privilege levels. 3. As tools for explaining treatment to clients. Cards are posted throughout the unit and referred to frequently by our staff. Clients in pretherapy are shown a menu of treatment options consisting of skill cards, and are asked to choose which skills they would like to develop. Clients in behavioral crisis are directed, in the midst of the crisis, to practice the skills shown on particular cards, 4. As a means of explaining mental health treatment to paraprofessionals. This is one of the cards’ most useful purposes. Paraprofessional staff such as mental health workers need a model for their own interventions with clients. Staff readily understand the idea of skill training, especially if clinical and administrative staff invest in their skill training also, 5. As teaching aids when educating clients about mental health, mental illness and psychiatric medications, 6. For self-monitoring of behaviors, thoughts, or feelings, 7. As visual representations of behaviors we are encouraging patients to increase or decrease. These pictures of positive and negative behaviors can easily be adapted to be used as self-monitoring forms. When clients show positive behaviors, staff can give them the appropriate skill card, signed by staff, to mark their progress toward earning reinforcers. We find an ever-growing number of uses for these skill cards. Many cards are included on the compact disc included with this volume in the hope that readers will also find therapeutic uses for them. While these cards are visual tools designed for persons with poor written English skills, we still use English words along with the pictures. Readers who work with deaf persons will notice that the English words and phrases approximate how a concept would be signed in ASL. Because the pictures are always approximate representations of the skills, we find we

184

GLICKMAN

need the words also. The meaning of some cards is not completely self-evident. The cards are a means of catching the eye and the interest of clients. We assume that discussion and role play follow. THE STRUCTURE OF GROUP TREATMENT In psychiatric inpatient settings, most psychotherapy occurs in a group setting, often as part of a day treatment program. With managed care pressures shortening clients’ length of stay, individual psychotherapy is increasingly a luxury in a psychiatric hospital. Inpatient groups run with an ever-changing population of clients. Consequently, although groups usually have a theme, each group must be considered a single-session intervention. Groups need to be designed so that this group is helpful to these clients at this moment. Engaging psychologically unsophisticated deaf people in group treatment adds additional challenges. Over time, we’ve developed a highly structured format that generally works to engage clients meaningfully in a group therapeutic task. The group process is designed primarily to accomplish two goals: to provide clients with emotional validation and positive feedback and to teach skills. The structure described in the following list is used in our skill training groups. We also have expressive therapy groups like art therapy that we see as opportunities to provide emotional validation. The three principal areas of skill training are coping skills (for dealing with your inner life), social skills (for dealing with your outer life), and recovery skills (for avoiding drug and alcohol relapses). Although centered on skill training, the group process is designed to incorporate validation and positive reinforcement. The group structure is as follows: 1. Check in, including asking participants to repeat what the previous person said, 2. Skill practice activity, 3. Discussion, 4. Positive reinforcement from the group leader, 5. Clients rate themselves and rate the group. During check in, clients report on their mood at that moment. Clients have the option of “passing” if they don’t wish to answer. After the group member reports on him or herself (the staff do this also), each participant must repeat what the previous person said. We are up front with our clients about our reason for this. We want them to pay full attention to each other. We want them to feel that other people listen to them. Clients usually accept this explanation. We’ve been surprised how well clients can do this attending task, once they get the hang of it, and how useful it is for improving group dynamics. Asking clients to repeat what another person said begins the group with emotional validation.

4.

185

INPATIENT TREATMENT

We move on to an activity. Often we offer a “forced choice” between two or more activities, each designed to teach a skill. For instance, using several skill cards, clients can choose which skill they want to practice. Or using “situation cards,” clients can choose which situation they want to practice responding to. Clients are invited to pick a situation card just as one would pick a card in a card game. They pick a situation card, read it, and then pick a coping skill to practice. Sometimes we assign points to particular cards or we have clients give each other points based on the quality of their practice. Turning skill training into a game adds to its appeal. Some sample situation cards are presented in Figs. 4.15a–4.15c. With psychologically sophisticated people, discussion generally precedes role play. However, with psychologically unsophisticated people, especially those with cognitive and attentional limitations, the therapist has to grab people’s interest quickly. We therefore often jump into an activity without adequately explaining it, expecting to explain it and teach it while doing it. Indeed, I will often ask clients who have not yet learned a skill to teach it to another client. My plan is that while they are teaching the skill, I or other group members will coach them, and they will learn by doing. Skills must be taught through enactment, through role play. If a client is upset because she can’t see her doctor when she wants, and we are working on coping techniques, it is more useful to first role play the situation and then coach her in practicing a coping skill than to have a less structured conversation about how she feels. With the role play completed, a more helpful conversation often happens. “How did you feel? How did you respond? What were you thinking? How did the staff person respond? What else could you have done?” Role play may well be the most time tested and ef-

FIG. 4.15a

186

GLICKMAN

FIG. 4.15b

FIG. 4.15c

fective technique in counseling with deaf people, especially less sophisticated deaf people. It may be that ASL, with its use of body shifting to indicate who is talking, lends itself to role playing. It may be simply that doing it before talking about it is more concrete and immediate. Most of our clients role play easily and well and readily accept role playing as part of the therapeutic work. After clients have done something and are engaged, a therapeutic conversation follows. It is at this point that we can often process feelings and thoughts or

4.

INPATIENT TREATMENT

187

attend to interpersonal process issues in the group. Depending on what is occurring in the moment, we may stay with discussion or practice another skill. The closing ritual is composed of two parts. First the therapist comments on something positive he or she observed about each member. Sometimes one has to stretch to find something positive to say. For example, “you were able to sit in the room with us and not blow up even though you were angry.” This is another place where validation and positive reinforcement occurs. The group must be a positive experience for participants if we are to have any hope of engaging them a second time. Finally, clients are asked to rate their own participation and the helpfulness of the group. As mentioned before, our hope here is that clients will discover that there is a connection between their own participation and how helpful the treatment is. Also, asking clients to rate themselves and rate us gives them a measure of control. They become the judges of whether something, including their own participation, is helpful. COPING SKILLS Standard DBT teaches four core skills: distress tolerance, emotional regulation, interpersonal effectiveness, and mindfulness. These skills are designed to help clients regulate their own thoughts, feelings, and behaviors (self-regulate). Distress tolerance skills help people cope with unpleasant states of strong emotional arousal. They include the ability to feel angry without acting aggressively and the ability to feel depressed without acting self-destructively. This is the core skill involved in crisis management, and it is the core skill we need to teach clients who are hospitalized because they impulsively try to hurt themselves or other people. We have condensed two of these DBT modules, distress tolerance and emotional regulation, into the simpler notion of “coping.” The interpersonal effectiveness module is simplified and presented as “social skills” training. The mindfulness module is not yet a formal part of our training except as the coping skill of self-acceptance. For most of our patients, coping is about managing anger. Drawing on DBT, cognitive-behavioral therapy and Sensory Movement Integration therapy (see chap. 5), we suggest that our patients learn to use a particular coping skill strategy. These are listed on a board in the group therapy room, taught during the coping skills group, and represented on skill cards included on the compact disc. The strategies are: • Distraction. Managing your emotions by keeping your mind busy with something else. Examples: watch TV or play a game. • Self-comfort (Sensory Movement Integration). Doing an activity to comfort your body. Example: Ride the stationary bicycle, rock in a chair wearing a lead-filled heavy vest. • Positive self-talk. Coach yourself through the situation. Tell yourself you can manage and stay calm, that you are okay.

188

GLICKMAN

• Self-acceptance. Practice accepting what you feel but doing nothing. Tell yourself, “I accept what I feel, but I will control my behavior.” • Relaxation and breathing. Practice taking slow, deep breaths and counting to ten slowly. • Prayer. Pray for help and guidance. • Humor. Try to laugh. Try to think what is funny. There are many ways to teach skills. Sometimes we invent a game. For instance, one day we were trying to engage a 16-year-old client we’ll call Jonah, who had been refusing to meet for anything called “therapy”. He was scheduled for the 10 o’clock coping skills group, which I colead with a unit social worker and a mental health worker. Seeing Jonah in the hallway an hour before the group, I handed him a case of poker chips and said “would you bring the chips to the 10 o’clock meeting?” He looked surprised and asked “What?” “We need them for the game,” I replied. Somewhat taken aback, he responded with his usual oppositionality, “I don’t need to bring the chips. You bring the chips.” “OK,” I said. “See you at 10 o’clock.” Obviously, I didn’t care who brought the chips. I wanted to engage him. Jonah was ready for group before anyone else. While waiting for the others to arrive, I arranged the poker chips in columns on the center table. “What are the chips for?” Jonah asked. “I’ll explain when the others arrive.” Finally, after the others arrived, we did our ritual check in, going around and stating our moods at that moment. Then I explained the chips. “The whites are worth one point each. The reds are five points and the blues ten.” I pointed to our list of coping skills. “Some of these coping skills, like distraction, are easy. Some, like positive self-talk, are hard. We’re going to play a game where you earn chips for using different coping skills. How many points do you think each coping skill should be worth?” With this surprising and interesting lead-in the group of “unmotivated” clients readily began reviewing coping skills and discussing how hard they are to learn. “The object is to see who gets the most chips. I’m going to ask you all to pick a card. Each card has a picture of a situation on it that leads to a strong emotion. You explain the situation to the group, then set up the role play. Ask another group member—staff or patients—if they will role play the situation with you. Think about which coping skill you want to use and how many points it is worth. Don’t tell us which one you’re using. Just show how you would use it in that situation. The rest of us will try to guess what skill you are using. If we can, you earn the points assigned to that coping skill. Who wants to go first?” We were aware of some recent incidents on the unit, and purposefully included situations like these in the cards from which the clients chose. In a short time, they were role playing different situations and coping skills, laughing and enjoying themselves, attending, and apparently learning. They didn’t necessarily role play all that well, and even if they did it would be no guarantee that they would use the skills in real life. But our immedi-

4.

189

INPATIENT TREATMENT

ate goals were simply to get them to think about the skills as things they could use themselves in difficult situations. The most common way we teach skills is role play followed by discussion. Clients or staff can suggest situations for role play or clients can “pick a card.” We find we keep discovering new coping-skill techniques and ideas. Two in particular are worth sharing. They are called Red, Yellow, Green and Shield. Red, Yellow, Green Red, Yellow, Green is adapted from a common cognitive behavioral technique often used with children. It consists of a large picture of a stop light with a short phrase printed over each light. Inside the red light it says “stop and notice.” This is an instruction to stop and notice that one is angry, to say to oneself, “Oh, I’m angry.” The ability to self-observe is the most difficult of the three steps. In psychodynamic terms, it would be conceptualized as developing an “observing ego.” In CBT, it’s understood as a skill of self-observation that one can learn with practice (Fig. 4.16). After the client comments on his feelings and behavior, he is directed to the yellow light, which says “calm down.” Clients need a simple procedure to use to calm down. We teach them to do diaphragmatic breathing and to count slowly backward from 10 at the same time.

FIG. 4.16

190

GLICKMAN

The green light says “think, then act.” This is the cognitive dimension of the work and refers to helping people develop a positive, coping script. Usually we begin by “feeding” the words to the client. We say, in English gloss of the ASL, “COPY ME. I CAN CALM DOWN. I DON’T-WANT BLOW-UP. IF I BLOW-UP, TROUBLE WILL. BAD. I CALM, SHOW IMPROVE. GOOD. I LEARN SKILL, ANGRY, NO BLOW UP, INSTEAD, TALK, CALM SOLVE PROBLEM. GOOD.” After a few instances of practice, clients can usually find the words on their own. The CBT technique being employed here is “self-instructional training” (Meichenbaum, 1977), teaching people to talk themselves through a given situation. Then we practice. We role play responding to what provoked them. We role play how they behaved before (called “OLD ME” or “BEFORE ME”) and how they behave now (called “NEW ME” or “NOW ME”). We have them practice the skill “live,” when they are really angry, with nursing staff acting as coaches. If they will leave the hospital and go to a residential program or back to their family, we have the client teach this method to their staff or family members with the hope she will continue to practice it in the new setting. Successful practicing of the techniques is reinforced by enthusiastic praise and can also be a factor in approval of increased privilege levels in contexts where a behavioral level system, with clients earning decreased levels of supervision, is employed. Shield Another coping technique, a creative counseling technique borrowed from Ed Jacobs, is the “Shield” (Jacobs, 1992). A client is shown a skill card of a shield and encouraged to wear a small toy shield. He role plays having someone else try to provoke him with angry words, which bounce off their shield. After practicing this a few times, we take the shield from him, explaining that the real shield is not the toy but his powerful mind. He can decide whether someone’s else’s hostile words will bother them. We then have him practice more, using his mind as the shield. The pictorial metaphor, turned into a practice activity often presented as a game, further strengthened by praise and other behavioral reinforcers, helps a counseling intervention come alive. See Fig. 4.17. Videotaping Videotaping provides yet another way to teach skills. Video is an especially useful tool with deaf persons because of their dependence on, and enjoyment of visual feedback. We proposed to several clients that they make a videotape “to teach other people about anger control.” Our real purpose, of course, was to help them learn better anger control. The clients taped themselves practicing skills such as Red, Yellow, Green. We told them they could teach because

4.

191

INPATIENT TREATMENT

FIG. 4.17

they were becoming experts. One client signed “ME EXPERT” repeatedly to himself while making the videotape, demonstrating that his “self-talk” was changing. On discharge, he gave his family and outpatient team a lecture on coping skills, accompanied by his videotape. He then took questions from the audience. This process was in essence a “cognitive restructuring”; we helped him change the story he tells himself, from “I can’t control my temper” to “I’m an expert on controlling anger.” This technique was fun and interesting for both clients and staff, and enormously ego-boosting for the clients involved. Several weeks after this client’s discharge, we were delighted to learn that he had taught Red, Yellow, Green to peers at his vocational workshop. SOCIAL SKILLS If coping skills are skills for dealing with your inner life, especially your feelings, social skills are skills for dealing with your outer life, especially other people. There are numerous curricula for teaching social skills. Bellack, Mueser, Gingerich, and Agresta (1997) wrote an excellent text for teaching social-skills to people with schizophrenia. We have found their book useful in designing our social-skills groups. Social skills include conversation, conflict management, assertiveness, friendship/dating, and work skills. For our purposes, the most important social skill is conflict resolution. Our clients lead lives filled with interpersonal conflict, and these conflicts are often a fac-

192

GLICKMAN

tor in their being hospitalized. As with difficult emotions, difficult interpersonal situations create opportunities for skill practicing. In “Conflict Resolution Group,” we discuss and practice a simple conflict resolution procedure. This group, run by a social worker, psychologist and a mental health worker, meets once a week for an hour. Broken down to its simplest form, conflict resolution involves: • • • •

Noticing you have a conflict, Saying what the conflict is, Listening to each person’s opinion, Finding a compromise or agreeing to disagree.

We often start by asking clients to identify a recent conflict that occurred on the unit. If clients fail to identify a conflict, we can ask them to choose a situation card that describes a conflict scenario. Scenarios include two clients arguing over which television show to watch, a client in conflict with staff over a privilege level, and various other situations in which a client feels misunderstood, insulted, or abused by another person. Because so many of our clients show aggressive behavior, we often combine teaching the coping skill of managing anger with the social skill of assertively expressing wants without resorting to violence or intimidation. With many of our clients, we have to break social skills down into even simpler, more concrete tasks. Skill cards are helpful here. (Some of our social skill cards are reproduced on the compact disc.) Examples of these skills are: • • • • • • • • • • • • • •

Explaining what mean behavior is, Explaining the difference between bad and good teasing, Admitting aggressive or threatening behavior, Disagreeing respectfully, Accepting limits from staff, Apologizing, Saying “good job” to someone, Starting a conversation and keeping it going, Assertiveness, Asking for help, Looking at people in the eye when talking/signing to them, Helping others, Listening, Grooming and hygiene.

Our teaching method for social skills is the same as for coping skills; the key technique is role playing, followed by discussion. We encourage clients to role play various conflicts and we practice using the conflict resolution method during the role play. We may have staff play the role of clients or vice-versa. We may role play poor conflict resolution compared

4.

INPATIENT TREATMENT

193

with effective conflict resolution. The key behavioral principals here are modeling and, because clients are practicing handling situational stressors, “stress-inoculation.” RECOVERY SKILLS Athird area of skills we teach are alcohol and drug recovery skills. This kind of skill training is targeted at clients with both psychiatric and substance abuse disorders. Recovery skills involve skills at managing one’s inner life (thoughts, cravings, impulses, feelings) and outer life (responding to other people, environmental triggers and stressors). Recovery skills also involve skills for using support systems like Alcoholics Anonymous. “Recovery Skills” group involves teaching concrete skills needed to develop and maintain sobriety. Some of this is education and socialization into the Alcoholics Anonymous and Narcotics Anonymous model, including the “12 Steps.” This involves the following skills: • • • • • •

Understanding and working the steps, Telling one’s drug story, Identifying triggers in thoughts, feelings, and situations, Following a relapse prevention plan, Using a support system and offering support to others, Honest self-appraisal and honest conversations with other people.

Some of the skill cards associated with these recovery skills are also reproduced on the compact disc. Our unit staff has had frequent discussions about whether the AA step model works for our psychologically unsophisticated deaf clients. Consider Step One: “We admitted we were powerless before alcohol/drugs and that our lives had become unmanageable.” Even translated into ASL, this sentence involves several very abstract ideas that many of our clients don’t easily grasp. When we send these clients to mainstreamed AA/NA groups with an interpreter, the information often goes right past them. On the Deaf Unit, we have had cross-cultural conflict between deaf and hearing perspectives. Most of our hearing staff have argued for the importance of including deaf clients in hearing AA/NA meetings when, as is usually the case, deaf-only groups are not available. The hearing staff don’t always appreciate the language and cognitive limitations of these clients and argue that, in any case, AA/NA is a community, and people benefit from the social support. Our deaf staff have focused in on the question of what our deaf clients understand is occurring. They have objected to treatment models, such as mainstreamed AA groups, where full communication inclusion does not occur. The deaf staff often don’t see these hearing groups as offering a useful kind of social support to deaf persons that hearing people imagine they do.

194

GLICKMAN

This leaves us to offer most substance abuse treatment ourselves. We try to tie these recovery skills to the coping and social skills taught throughout the program. The challenges here of obtaining treatment commitment and adapting the treatment approach for dually diagnosed psychologically unsophisticated clients are so formidable that staff can become discouraged easily. To survive doing this work, staff must appreciate and celebrate small successes. For example, a client is able to tell the story of her drug use and to acknowledge some ways drugs have hurt her life. She says she is “cured,” and will never drink again, so she doesn’t have to work on recovery skills. Another client confronts her, telling of his own many relapses and the need to work on recovery forever. The confronted client reconsiders and agrees to stay in the group. In another group, clients finally seem to grasp the idea of a trigger to drug use and begin to identify triggers such as seeing their old drinking and drugging buddies or feeling depressed and lonely. SKILL TRAINING AND BEHAVIOR PLANS The most common technique used to help persons with severe behavioral difficulties is behavioral planning. Behavioral plans try to elicit desired behaviors by rewarding them, and extinguish negative behaviors by ignoring or punishing or them. Common rewards are praise, changes in privilege level, tokens, and access to desired activities. Common punishments are time out, loss of staff attention, and restrictions on activities. As anyone who has done this kind of work can attest, well-developed and implemented behavior plans are very effective in introducing order and predictability into a care-taking environment and in helping shape a desired behavior. But I suspect that most clinicians who use behavior plans would also admit that sometimes they don’t solve the problem. When a behavior plan does not work, it may be that it was not well designed and or properly implemented. But having written dozens of behavior plans for behaviorally disturbed clients, I’ve come increasingly to appreciate that manipulating reinforcers is not enough. One also has to teach clients skills for changing their behaviors, to increase their behavioral repertoires. Greene (1998), in his groundbreaking work on the “explosive child,” criticized behavior plans because they assume that what the child or client with behavior problems lacks is motivation to behave more appropriately. The strategic application of rewards and consequences is designed to elicit increased motivation. The problem, according to Greene, is that the child may well be motivated to comply but be unable to due to a skill deficit. This criticism applies to our clients as well. They may want to show in-control and safe behavior but not know how. Another concern with behavior plans stems from their potential violation of human rights. In many clinical settings, behavior plans have gotten bad press, usually because of a few sensational examples of the use

4.

INPATIENT TREATMENT

195

of aversive punishments like electric shock. A more general human rights concern is that behavior plans are often done to clients rather than with them. Behavior plans may be voluntary or involuntary. When they are involuntary, they may be construed as coercive and punitive even when they help a severely aggressive or self-destructive person obtain better self-control. The regulations governing the Deaf Unit no longer allow involuntary behavior plans. This Department of Mental Health policy, is usually a good thing, in my opinion, because it means that staff must work with clients in the collaborative, respectful manner that we would want if we were clients. In a small number of cases of severely aggressive or self-destructive clients with whom collaboration is not possible, however, the inability to put in place involuntary behavior plans has meant that these clients could not get necessary treatment. This is especially true of antisocial and psychopathic clients who will not collaborate in good faith and who need external controls to keep their behavior in check. Another problem with behavior plans is the difficulty of getting a complex system of people to use the plan consistently and well. It can be hard to get two parents to be consistent in their behavioral approach to a child, someone they are presumably highly motivated to help. Trying to get a large group of nurses, mental health workers, and clinicians to understand, support, and consistently use a behavioral plan is a formidable challenge indeed. We are taught to develop precise behavior plans based on careful analysis of data. In real-life systems, behavior plans need to be exceptionally simple to have any chance of being implemented consistently. In our experience on the Deaf Unit, nursing staff, who shoulder most of the responsibility for implementing behavior plans, are easily overtaxed by a complex behavior plan that requires them, for instance, to count behaviors or administer reinforcers according to a predetermined schedule. Then they are asked to administer several different behavior plans at the same time. To note that this often fails is not to criticize nursing staff, but only to acknowledge the difficulty they face. It is easy to devise a clever behavior plan in one’s office, but difficult to mobilize a clinical team to implement it. When Meichenbaum (1977) first pushed traditional behavior therapy in this new direction of cognitive-behavioral therapy, he reframed the treatment focus from reinforcers to skills. Meichenbaum wrote, “Behavior therapy is shifting from an emphasis on discrete, situation-specific responses and problem-specific procedures to a concern with coping skills that can be applied across response modalities, situations and problems” (p. 144). Greene’s work on the “explosive child” embraces this shift. For instance, a client assaults whenever a limit is set. To elicit better behavior, we give him lots of praise when he shows safe behaviors and we limit his privilege level when he shows unsafe behaviors. But when he is told no, he still becomes flooded with emotion. When calm he has stated many times his intention to cooperate, but when the emotional flood happens, he “loses it” and hits someone. What this person lacks is not the moti-

196

GLICKMAN

vation to remain calm but the skill of managing anger and emotional upset. He does not yet have the ability to recognize his emotional state, especially if he is in an aroused state, and consciously apply a coping strategy like red, yellow, green. This skill has to be taught. It then needs to be practiced on the milieu and in real-life settings. On the Deaf Unit we have made psychosocial skill training the foundation of our work with psychologically unsophisticated deaf clients. We base our behavior plans on skill training. These plans are developed cooperatively. We contract with clients to help them learn a skill. We teach them the skill and help them practice. What we expect from milieu staff is not that they administer a complicated schedule of reinforcers but that they coach clients in practicing a skill and praise them when they do it. We also negotiate with clients a set of reinforcers for skill acquisition. For instance, with client consent we may still tie privilege levels to specific behaviors. Clients need to be safe to have decreased levels of supervision. But the way they can demonstrate safety is by practicing a skill a particular number of times. Rather than collect points, stars, or tokens, which nonretarded adults often find insulting, they collect skill cards, which are often more acceptable. They get a skill card each time they practice a skill and lose skill cards when they fail to practice. When they collect an agreed-on number of cards, they can trade them in for an increase in privilege level. The biggest challenge in a skill training model is skill generalization. That is, will the skill learned in the clinical setting be used in real life settings? On our unit, skills are learned in individual and group therapy, then practiced on the milieu and during transitions toward discharge. Nursing staff act as coaches, helping clients apply skills. When we have an involved family and outpatient treatment team, we have sometimes been able to pass on the behavioral plan to these people. The best way to do this is to have the clients teach their family and team what they have learned and then for all of us to negotiate changes that make sense in the outpatient and family setting. For instance, with the client who presented to his team the anger management videotape we made, he also taught these skills to his parents and the staff of his residential program. He also later taught these skills to members of his work program. JOHN’S TREATMENT PHASE I have already described our pretreatment efforts with John. Educating him about treatment and engaging him meaningfully remained important even as he demonstrated specific skills and improved behaviors, and became easier as we went along. The heart of his treatment was the skill list we had submitted to the court. This skill training occurred in both groups and “individual” therapy sessions, the latter usually involving both a therapist and a mental health worker. Including the mental health worker was essential because it gave John someone whom he could practice with daily. It also

4.

INPATIENT TREATMENT

197

meant that those in the milieu knew the skills John was learning so that when behavioral crises occurred, they could more easily help. For example, at one point, John was doing well demonstrating anger control methods like Red, Yellow, Green in the counseling session when he was calm and unstressed. This was progress but it meant little unless he could use the skills when he needed them. The connection between treatment with the therapist and treatment with the nursing staff enabled this to occur. When John was upset about something, staff were able to say to him, “Remember the skill we practiced? Use it now!” Bit by bit, John improved his ability to do so. When we tried to teach John to use self-talk to coach himself through difficult moments, for instance, the self-talk that really worked was “I need to control myself or I will go to jail.” The behavior plan enabled John to earn an increased privilege level (at a very slow pace) each time he collected 20 skill cards. He earned skill cards in groups, individual treatment, or by applying a skill in the milieu. Thus, the whole environment became an opportunity for practicing skills and getting positive reinforcement. John, of course, was more interested in privileges than skills, but because he wanted one, he worked on the other. After several months and several cycles of skill building followed by relapse and withdrawal followed by recommitment and skill building, John’s behavioral self-control on the unit became more solid. The “cycle” skill card, discussed previously as a self-monitoring tool with John, also helped him to see the big picture of his behavior over time. Although he was still often angry, he managed this anger without threats or aggression. This gave us plenty of opportunities to praise and reinforce him. Although the focus of our work was skill building, John’s therapeutic relationship with me as his primary therapist and other key staff also became stronger. The skill acquisition and the strengthening relationship set the stage for the final part of our work: confrontation about his past sexual offending. His social worker Susan Lemere (see chap, 8 for more on working with clients with sexual behavior problems), I as his primary therapist, and his mental health worker advocate, began a series of confrontational sessions regarding past sexual offending behaviors. As one might expect, John wanted none of this conversation. The past, he insisted, was behind him, and we were making him “negative” by focusing on the past. This meant a return to pretherapy for this piece of work. Why, we kept asking, were we “bothering him” by insisting he talk about his past behaviors? Our goal was that John would “come clean” with us, tell us about at least some of his past behaviors, and take responsibility for them. We knew that without an honest confrontation with his past, his chances of reoffending were very high. We tried several techniques. I told John a story about another client who had similar problems and refused to discuss them. Then when he was discharged, the client relapsed and repeated the same behaviors. We explained to John that we were trying to keep him out of jail, and that the best way to ensure that was for him to be fully honest with us. At

198

GLICKMAN

one point, using a family therapy reflecting team technique, we had John observe us talking about him. One of us argued, as John did, that the past was behind him and there was no need to review it. Asecond therapist and I tried vainly to persuade the first therapist that if he didn’t deal honestly with his past, he’d repeat it. “John” stubbornly insisted that we were obsessing about the past and we had to stop being so negative. The second therapist and I talked about how we worried about “John” because he didn’t understand and wasn’t being honest. The real John watched this little show attentively. He didn’t become angry or explosive. But neither did he make any connection with himself. He simply insisted then, and throughout the rest of our work, that he would never get into trouble again. His plan was to avoid all sexual relationships—simple, black and white, and a completely unrealistic goal. As much as we valued skills, we also wanted John to show insight. We wanted John to see that the past is connected to the present. John maintained the belief that the past was irrelevant. We wanted John to understand that some kinds of sexual relations are acceptable, and that sexual feelings themselves were normal. We wanted John to understand that victims of sexual abuse can become perpetrators, and that if he didn’t own his perpetrating behavior he was at huge risk to repeat it. If he got into trouble again, we would not be there to help him. He was at high risk for an indefinite civil commitment, or prosecution and jail. “We’re confronting you to protect you, John,” we insisted. John would admit bits and pieces of “bad touch.” Then he’d minimize, retreat to insisting the behavior was consensual, and say again he only needed to avoid contact with anyone. John’s serious lack of insight worried us. But after months of fair behavioral stability on the unit and after demonstrating most of the skills that were on his treatment plan, we had done what we felt was possible. We worked out the best aftercare plan that resources would allow, strongly recommended continued probation, and launched him back into the world. Then we collectively held our breath. SUMMARY AND CONCLUSION To engage psychologically unsophisticated deaf clients in mental health treatment, one has to modify mental health treatment approaches to fit the clients. Modifications discussed in this chapter include: • Focusing on the “pretreatment” phase of treatment, in which we educate clients about therapy and motivate them to participate, • Relying on a simplified model of mental health treatment. Even the cognitive-behavioral paradigm requires simplification. When talking to clients, we reduce treatment to its essence—expressing feelings safely and learning skills. We use a structured, directive, and concrete approach in which the therapist leads the treatment,

4.

INPATIENT TREATMENT

199

• Using visual tools, especially visual metaphors, • Using stories and client generated metaphors, • Creating psychosocial skill cards to represent specific skills. Basing the program structure around skill coaching, • Using self-monitoring tools, sometimes associated with a behavioral plan, • Teaching skills through enactment using role play. Discussion after enactment is far more effective than discussion alone, • Assuring communication excellence through collaboration between natively signing staff and clinical staff who are not excellent signers, • Seeking the support of a court, family, or other significant people, • Passing on the plan, where possible, to family and outpatient providers. John, like many of our clients, is a life-long mental health client. His time with us was just a stage of his work, but it was a real step in a positive direction for him. John’s treatment approach had to be highly individual, fitting his language abilities, cognitive limitations, psychiatric diagnoses, and behavioral history. This couldn’t possibly have been accomplished in a setting that was not culturally affirmative for deaf persons. Skilled hearing clinicians who do not work with deaf people would have been unable to design a treatment program that made sense to him. What makes the treatment model described here culturally affirmative? Cognitive-behavioral therapy itself is neither for nor against Deaf culture and could be used to oppress deaf people just as easily as to help them. Although our model emphasizes skill training, this is certainly not to suggest that all deaf people lack insight or that insight-oriented treatment is somehow “anti-Deaf.” Rather, what makes this model culturally affirmative is: • The attempt to fashion the treatment so that it makes sense and appeals to our clients. Treatment emerges as a blending of the client’s frame of reference with those aspects of psychological theory that most closely match it. • The careful attention to communication reflected in the creation of a signing environment where treatment occurs at any moment and the development and use of psychotherapy tools, such as psychosocial skill cards, and methods, like role playing, which are natural, easy, and appealing to the client community. • The close collaboration between deaf and hearing staff. The attempt to empower deaf clients by educating them about treatment and by having deaf people involved in every aspect of their care. Pretherapy ensures that clients understand and can participate meaningfully in treatment. Client empowerment also increases by giving them selfmonitoring tools, and collaboratively developing and implementing treatment plans.

200

GLICKMAN

Given the emphasis in our program on skill training, one might well ask about the place for insight oriented techniques. In our work with John, we very much wanted him to show insight and we tried every technique we could conceive of to promote it. Certainly, concepts like transference and defense mechanisms helped us understand John. For instance, when John raged against staff for ignoring him, when he complained that staff were lazy and incompetent, we understood that he was projecting his own feelings of worthlessness onto staff and responding to all the times in his life when he felt neglected and abandoned. Several times in our work, John said to me angrily, “you’re not my father.” I didn’t need to be a Freudian to understand that feelings about his father or about authority figures were being transferred onto me. The trouble was that when we “interpreted” these dynamics for him, John never understood it. He just insisted we were wrong. But when we practiced with him more skillful ways to interact with people, he was often right with us, engaged and participating. One way to conceptualize psychotherapy is that it may have three phases. (This phase model is modified from DBT.) The first phase (pretherapy) is developing a shared understanding of treatment goals and methods. The second phase (skill acquisition) is learning core psychosocial skills for managing their inner and outer lives. The cognitive-behavioral treatment paradigm shines in this kind of work. The third phase, which some clients may seek, involves resolution of personal crises and the development of insight. A client in this stage should be motivated and stable enough to allow time to explore her inner world. For clients in this stage of work, psychodynamic models certainly offer excellent guidance. Insight oriented treatment, whether trauma oriented or directed toward other issues, is perfectly appropriate for clients, deaf or hearing, who are not harming themselves or others and who value greater self-knowledge. Indeed, if the psychologically unsophisticated deaf client, as a result of treatment described here, develops the life skills sufficient to live safely, and then, having developed an “emotional vocabulary” and having come to value psychotherapy, is now psychologically sophisticated, the client might then be a candidate for insight-oriented psychotherapy. John, so far, is a long way from becoming a YAVIS client. I have assumed throughout this chapter that the clinician is a competent ASL user or that there is a deaf and hearing psychotherapy team collectively implementing these techniques. This is highly specialized work that needs to occur in Deaf-affirmative specialized programs. Even if the mainstreaming of deaf clients in hearing programs is motivated by the best of intentions to create inclusion, such programs do not reach clients like John. Sadly, the providers in such programs usually haven’t a clue as to why.

4.

INPATIENT TREATMENT

201

REFERENCES Acosta, F., Yamamoto, J., Evans, L. (1982). Effective psychotherapy for low-income and minority clients. New York: Plenum. Bellack, A. S., Mueser, K. T., Gingerich, S., & Agresta, J. (1997). Social skills training for schizophrenia: A step-by-step guide. New York: Guilford Press. Dolgin, D., Salazar, A., & Cruz, S. (1987). The Hispanic treatment program: Principles of effective psychotherapy. Journal of Contemporary Psychotherapy, 17(4) 285–289. Glickman, N. (1996). What is culturally affirmative psychotherapy? In N. Glickman & M. Harvey (Eds.), Culturally affirmative psychotherapy with deaf persons (pp. 1–56). Mahwah, NJ: Lawrence Erlbaum Associates. Greene, R. (1998) The explosive child. New York: Harper Collins. Isenberg, G. (1996). Storytelling and the use of culturally appropriate metaphors in psychotherapy with deaf people. In N. Glickman & M. Harvey (Eds.), Culturally affirmative psychotherapy with deaf persons (pp. 169–183). Mahwah, NJ: Lawrence Erlbaum Associates. Jacobs, E. (1992). Creative counseling techniques: An illustrated guide. Odessa, FL: Psychological Assessment Resources. Linehan, M. (1993). Cognitive behavioral treatment of borderline personality disorder. New York: Guilford Press. Meichenbaum, D. (1977). Cognitive-behavioral modification: An integrative approach. New York: Plenum. Prochaska, J. O., Norcross, J. C., & DiClemente, C. C. (1994). Changing for good. New York: William Morrow. Rogers, C. (1961). On becoming a person. Boston: Houghton Mifflin. Sue, S., & Morishima, J. (1982). The mental health of Asian-Americans. San Francisco: Jossey-Bass. Sussman, A. (1998). Keynote Address. Paper presented at the First World Conference on Mental Health and Deafness, Gallaudet University, Washington, DC. Sussman, A. (1999). Keynote address. Proceedings of the First World Conference on Mental Health and Deafness. Sussman, A., & Brauer, B. (1999). On being a psychotherapist with deaf clients. In I. W. Leigh (Ed.), Psychotherapy with deaf clients from diverse groups. Washington, DC: Gallaudet University Press.

5 Sensory Strategies for Self-Regulation: Nonlinguistic Body-Based Treatment for Deaf Psychiatric Patients Diane Trikakis, Nancy Day Curci, and Helen Strom Westborough State Hospital

When we first began our work on the Mental Health Unit for Deaf Persons (the Deaf Unit), at Westborough State Hospital, we were novices in the language and the culture of Deaf people. It was a challenge for us to find ways to teach our deaf patients skills for more effective living. After experimenting with a number of different ideas for group and individual activities, we realized that we could best help our patients feel better and engage more meaningfully with their mental health treatment through their senses. Sensory integration is the neural organization of sensation that allows the body to function effectively in the environment (Ayres, 1989). Sensory integration takes place as automatically as the circulation of blood, breathing, and digestion. It knows no barriers of language or culture. We take in, sort out, and connect sensations, then respond with behaviors such as self-protection, selfcare, and creative engagement in life—or with maladaptive behaviors that do harm to our lives. By learning to attend to our sensations we can consciously improve how we feel, and increase our ability to take in and make good use of every other experience (see Fisher, Murry, & Bundy, 1991). Sensory Movement Interventions (SMI) is a treatment approach based on the theory of sensory integration. It does not depend on highly abstract reasoning or on the ability to process verbal or written information. It can be used with linguistically and cognitively impaired patients, deaf or hearing. The goal of SMI treatment is to help patients attain a level of calm alertness that is optimal for self-awareness and learning. After an appropriate SMI experience, lethargic patients feel more alert, whereas anxious patients Original line drawings by Michael Krajnak, Westborough State Hospital

203

204

TRIKAKIS, CURCI, STROM

feel more relaxed. With ongoing SMI treatment, patients feel more able to control emotional upsets, more self-aware, better able to interact positively with the environment, and more receptive to feedback from others. In summary, through SMI patients—and staff—learn to monitor and then adjust their physiological and emotional arousal. Example: Splashing your face with cold water first thing in the morning is a Sensory Movement Intervention. Most of us use such techniques unconsciously throughout the day. We monitor our level of alertness, and then maintain a “just right” feeling by choosing from a “menu” of sensory activities. SMI involves making this activity deliberate, to create a “daily diet” of sensory activity.

Six Objectives for SMI Treatment Our SMI program on the Deaf Unit has six objectives: • • • • • •

To provide patients with opportunities to practice sensory strategies, To help patients recognize their bodies’ emotional and physical states, To help patients recognize the possibility of conscious self-regulation, To help patients develop an individual regulation plan, To promote adaptive functioning, To prepare patients to learn new skills.

In 1997, when our unit began to use Dialectical Behavioral Therapy (DBT), a sophisticated treatment approach that teaches self-regulation through lectures and discussions, many of our patients found the ideas difficult. DBT requires that patients strive to attain mindfulness and then to learn a variety of challenging coping skills. We have found SMI to be the perfect partner to DBT for deaf patients. SMI techniques allow patients to approach hard DBT tasks through practical, easy, nonverbal, and deaf-friendly activities. The SMI approach also fits well with the principles of cultural affirmation and with the concept that people have different learning styles. For example, most deaf people prefer visual communication. Therefore we use a blackboard, posters with charts and graphs, videotapes, and pictorial materials on the unit. In addition, many of our patients are “kinesthetic” or hands-on learners. They like to move, to touch, and to manipulate information, and acquire through activity. We take advantage of this learning style with role-play and skill-building games. USING THE SENSES TO ADJUST ENERGY AND MOOD LEVELS Energy and Mood Levels In order for learning to occur we need to be at the “just right” level of calmness and alertness at which we can effectively take in and process

5.

SENSORY STRATEGIES

205

information. Self-regulation is the ability to attain and maintain this state. Imagine that you are attending an all-day conference. Despite your interest in the topic, your state of arousal fluctuates throughout the day. At times you might feel comfortable and focused, and everything makes sense to you. At other times, you might daydream, feel restless, or feel tired. When this happens, you know that your level of alertness and comfort is no longer optimum. If you notice what is happening and have some options available to you, you might take steps regulate your own level of alertness—perhaps by drinking some water or wriggling your toes. “How Does Your Engine Run?” A Leader’s Guide to the Alert Program for Self-Regulation, (Williams & Shellenberger, 1996) compares the level of arousal to a car engine’s revolutions per minute (rpm). “If your body is like a car engine, sometimes it runs on high, sometimes it runs on low, and sometimes it runs just right.” On the Deaf Unit, we have developed tools to help our patients to identify their physical energy levels and emotional mood levels. Our goal is to assist individuals to learn the ability to selfregulate. (See Table 5.1.) High Level A patient who feels “too high” is easily recognized through her behaviors, posture, and affect. She may glare, appear tense, or laugh inappropriately. She might talk excessively, pace the hallways, or get in and out of her seat during a group. She may lose control at the slightest provocation. In a group, her attention may be easily distracted from the leader and task at hand. Asked how she feels, she may say angry, nervous, or stressed. Clinically, she might be described as hyperactive, manic, excited, intrusive, agitated, or obsessive. She might have difficulty getting along with others and falling asleep at night. If her arousal level is extremely high, she might show the classic “fright, flight, or fight response.” Low Level A patient who feels “too low” has the opposite presentation. He might be socially withdrawn or spend much of the day asleep. He might find it difficult to get up and get going. His movements may be slow and body posture droopy. He might trail behind others when walking in a group and be last in line for the cafeteria. If he can be prompted to join groups, he may just slump over in a chair, eyes downcast, and pay little attention to the task at hand. He may report, “I don’t feel like doing anything,” “I don’t care,” “I feel sad,” or, “I’m depressed.” He may complain of boredom. Staff might describe him as a couch potato, sluggish, irritable, spacey, sleepy, apathetic, depressed, or poorly motivated.

206

TRIKAKIS, CURCI, STROM

TABLE 5.1 Levels of Alertness: Presenting Features High

Low

Just Right

Mood/Affect

• anxious • agitated • threatening • aggressive • euphoric

• depressed • serious • flat • tearful • preoccupied

• relaxed • happy • content • pleasant

Posture

• rigid • tense

• low tone • slumped • head hanging

• relaxed • upright

Interaction with people and the environment

• glaring • intrusive • noisy • disruptive • don’t get along with others • difficulty attending in groups • low frustration tolerance

• poor eye contact • isolative • quiet • withdrawn • poor motivation • difficulty attending in groups

• good eye contact • cooperative • shows initiative • good focus and participation in groups • easier to attend and learn

Energy Level

• high activity • pacing • fidgity • distractible • difficulty sitting still • manic

• lethargic • unable to increase movement pace

• just enough energy to perform tasks effectively

Just Right Apatient at the “just right” level of arousal is able to participate meaningfully in groups and get along well with others. He has enough energy to do what he wants. He appears content, relaxed, attentive, and in good control. The Senses In this section, we examine the human senses one by one (see Trott, Laurel, & Windeck, 1993), with examples of SMI activities and methods for each one that we have found to be successful with our patients. In general, we believe that touch and movement are the most effective types of activities for promoting change. In our work with patients, we observe carefully to detect the strategies used intuitively by each patient. (See Table 5.2.)

5.

207

SENSORY STRATEGIES

Touch Touch includes subsenses of pressure, temperature, and pain. Touch is the sense through which we first receive information about the world. At birth, we are equipped with a system of protective reflexes with which we respond to touch. As we grow, we develop a more carefully differentiated ability to identify where we are touched and what or who is touching us. TABLE 5.2 Calming and Alerting through Sensory Activities Activity

Calming

Alerting

Movement

Slow, rhythmic, repetitive, sustained, predictable movements (e.g., rocking chair, glider, riding in a car, hammock, heavy input from exercise, rowing machine, vacuuming)

Fast, uneven rhythms, non-repetitive, sudden, jerky, forward acceleration and deceleration, rotation (e.g., tire swing, skipping, roller coaster).

Touch

Warm temperatures; smooth, soft textures; deep pressure, sustained touch (e.g., massage, warm bath, heavy quilt, spandex).

Cold variable temperatures; coarse textures; quick, tapping, light touch (e.g., tickle, ice cubes, prickly wool sweater).

Vision

Smooth, fluid, clean, circular patterns; soft, muted, pastel colors; low intensity light; familiar, predictable (e.g., candle light, favorite watercolor, neatly organized desk).

Geometric, linear, sharp, busy patterns; bright, neon, primary colors; high intensity light (e.g., cluttered desk, flourescent lights).

Smell

Subtle, light, sweet scents; positive associations (e.g., flowers, fresh baked bread, scented candles, aromatherapy).

Strong, pungent scents; negative associations (e.g., peppermint, strong cheese, ammonia).

Hearing

Low volume; slow, repetitive rhythms; sustained, gentle, lyrical (e.g., ocean waves, window fan, baroque music, ticking clock).

Fast, unpredictable rhythms; high contrast volume; sudden, piercing (e.g., telephone ring, thunder [and lightning]).

Something in Soft, smooth, creamy textures; your mouth tepid/warm temperatures; sweet flavors (e.g., chocolate, warm milk, banana).

Hard, crunchy textures; strong, salty, spicy flavors; cold temperatures (e.g., carbonated soda, popsicle, peanuts, dill pickle, pencil eraser).

208

TRIKAKIS, CURCI, STROM

Each of us has definite preferences concerning touch, which are visible in our choices of clothes, bed linens, and furniture, and in the activities we choose for relaxation and pleasure. Warm temperatures, smooth textures, and deep pressure touch, such as heavy massage, being underwater, being hugged, holding a stuffed animal, or lying under a heavy quilt, are generally calming. Cold temperatures, coarse textures, and light touch, such as having one’s back scratched, being tickled, feeling sandpaper, or holding an ice cube, are usually stimulating. Example 1: The neckline tags on his clothing irritated one of our patients. By simply removing them, we helped him feel “just right”—calmer and more comfortable. Example 2: We encourage patients to squeeze stress balls, use a hand-held massager, or play with fidget toys during groups. One of our patients, who had a history of assaultive and threatening behavior and poor distress tolerance, developed his own method of calming himself by rotating two soda bottle caps in his fist (see Fig. 5.1). Another patient with high energy and agitation responded well to sitting with a weighted blanket draped over his lap and shoulders. Ice cubes grounded another patient when she dissociated, staring into space, talking to herself, and not responding to staff members’ attempts to “bring her back.” When given a pair of ice cubes wrapped in paper towels, one for each hand, she regained control. Example 3: Each year, our hospital holds a celebration called Summerfest. This is an outdoor event that features games, food, music, dancing, and crafts. The theme of this past year’s celebration was a Renaissance Faire. The Deaf Unit managed a booth called “Awaken Your Senses.” Our goal was to offer sensory experiences to everyone who visited us. We involved our patients in planning, setting up, and running the booth. During a preparation group the day before the event we had discussed how to set up and use many of the

FIG. 5.1

5.

209

SENSORY STRATEGIES

items for our table. As the group ended one of the members approached the OT leader and asked to speak to her in private. This young man had been hospitalized due to increased irritability and aggression. He had a history of threatening behavior and poor impulse control. He asked to borrow some green GoozTM. He had noticed that when he was squeezing it, it helped him to feel calmer. He asked whether we could help him buy some. He was very specific about his color preferences, preferring orange and green, but not wanting red or pink because those colors remind him of blood. The OT leader was delighted by his request and even more pleased to later observe him using it frequently as a tool for managing distress. In addition, this young man often uses our weighted blanket that he drapes over his shoulders for deep pressure comfort. During a case conference he told his providers about how it helped him and said he wanted to continue to use it after discharge back to his residential school.

Your Turn—Sensory Break Take a moment to imagine yourself doing each of these activities. How does it make you feel? (See Figs. 5.2 and 5.3.) • • • • • • • • •

Taking a warm bath, Taking a cool shower, Brushing your pet, Holding ice cubes in your hands, Hugging a pillow, Being wrapped in a heavy blanket, Squeezing a stress ball, Being massaged, Washing your face with a cool or warm facecloth.

FIG. 5.2

FIG. 5.3

210

TRIKAKIS, CURCI, STROM

Movement Movement, expression, and posture affect emotions. When you “put on a happy face” by smiling you feel better. We move all day and typically engage in different activities at different ages. Children enjoy running, playgrounds, and walking on top of stone walls. Adolescents engage in competitive sports, swimming, roller-skating, and amusement parks. Adults pursue activities such as dancing, skiing, fast driving, skydiving, and parachuting. Like touch, movement can calm or arouse. Action that stimulates the vestibular and/or proprioceptive systems can be used to achieve and maintain states of alertness and emotional regulation. The experience of movement includes muscle sensations, proprioception, and the sense of balance. Proprioception is our ability to know our body’s location in space, and is the reason why we don’t need to look to know where our feet are. Proprioceptive input, which comes from receptors in the muscles and joints, is alerting and pleasurable. People who do not have an adequate opportunity to move become dull and listless, or bored and restless. Some people feel, or are, uncoordinated. Sometimes this leads them to avoid physical activities, causing them to miss opportunities for the pleasure, self-regulation, and sense of mastery that physical activity can bring. Lack of activity worsens hyperactivity, low self-esteem, distractibility, and depression. The sense of balance comes from the vestibular system. The vestibular sensory receptors are located in the inner ear and influence muscle tone, balance, and vision. Vestibular input is received when the position of the head changes. When we dive into water, it is the vestibular system that tells us which way is up so that we can resurface. Ayres wrote, “Well-modulated vestibular activity is very important for maintaining a calm, alert state. We feel the calming effects of slow vestibular stimulation when we rock in a rocking chair, and feel the arousing effects of fast vestibular stimulation when riding a roller coaster” (Ayres, 1979, p. 74). Slow, rhythmic, repetitive, and sustained movements are calming (Hunter & MacAlpine, 1963). Linear movement such as rocking in a chair, hammock, or glider, or riding in a car creates rapid calming, as does decreasing motor activity and giving in to gravity, perhaps by leaning over and allowing arms and head to dangle like those of a rag doll. Activities that use muscles more intensely, such as jumping jacks, lifting weights, or running, increase arousal. Nonrepetitive and uneven rhythmic patterns are even more stimulating. These include skipping, aerobic dance and exercise, and activities such as twirling arms, and twisting on a tire swing. Example 1: A posture of extension with head up, chest out, and arms extended and abducted away from the body fights feelings of sadness (King, 1977). This position can be encouraged with participation in parachute activities. On our unit

5.

211

SENSORY STRATEGIES

we have three different sized parachutes so that we can work with small or large groups. Individuals are encouraged to wave the parachute up and down through a variety of games. We have used these activities during the movement portion of sensory groups and for exercise during our morning community meetings. (See Fig. 5.4.) Example 2: We have learned from experience that people living alone or in a hospital setting are happier and healthier when they have animals to pet and hold. On one occasion when we were running a pet-therapy group, a gentleman who was quite manic at the time, joined our group. He was motorically overactive and needed a lot of limit setting around his over-zealous behavior with a pettherapy dog. We encouraged him to brush the dog’s fur calmly. After a while, the slow rhythmic movement and touching began to soothe him. By the end of the group, patient and dog were sitting comfortably and quietly, side by side on the floor. At this point he no longer needed limits, was able to engage more meaningfully in discussion than before the group, and was more able to control his behavior. (See Fig. 5.5.) Example 3: One of our patients was a tall, lanky young man with an enormous amount of energy. He came to us with a history of poor impulse control, self-injurious and aggressive behavior. He was, however, sociable and invested in treatment. He responded very well to diaphragmatic breathing and the proprioceptive and vestibular input provided by sensory movement activities. He identified sit-ups, push-ups, jumping on a jogging trampoline, and a rowing activity using a theraband exerciser as activities that he enjoyed and that helped him. When this young man became distressed he would make unusual clacking vocalizations. When we noticed this we would encourage him to take a break, and choose one or two of his preferred activities to do right then. Three or four minutes were often enough to calm him so that he could again sustain attention and return to the task at hand.

FIG. 5.4

FIG. 5.5

212

TRIKAKIS, CURCI, STROM

Your Turn—Sensory Break Take a moment to imagine how each of the following movements might make you feel. Would you find it soothing or stimulating? • Spinning on a tire swing or swinging on a childhood swing set, • Jumping on a trampoline or moving slowly back and forth in a rocking chair, • Dancing to the vibration of the music or just tapping your toes, • Riding in an old car on a long bumpy road. Smell The olfactory system, which mediates the sense of smell, is wired directly to the limbic system. The limbic system is a group of interconnected deep brain structures involved not only in olfaction, but also in emotion, memory, motivation, behavior, and some autonomic functions. Smell is a very powerful and immediate way to influence ourselves. For example, many of us have experienced the way in which a smell can instantly evoke a vivid memory. The smell of a particular perfume might bring back wonderful associations from the past and produce pleasant emotions and responses. On the other hand, it may be associated with a very painful time and cause distress and negative feelings. In general, pungent smells cause “grounding” or alertness whereas light, sweet smells induce calming. An example of an alerting smell is using ammonia to awaken someone who has fainted. Like touch, smell, or even the memory of smell, can be used to diminish dissociation. A smell used for this purpose should be one with positive and alerting associations that has been carefully chosen by the patient. For example, a patient might choose the aroma of cotton candy because it brings back pleasurable and exciting associations of time spent at a country fair. One author likes the smell of rotten eggs. Most people might think, “Are you nuts?” To the contrary—she associates this smell with the sulfur cauldrons in Yellowstone National Park, which brings back wonderful memories of family cross-country trips. Obviously, knowing individuals’ preferences is crucial to using smell effectively. Example 1: We keep a collection of essential oils on the Deaf Unit. When an individual expresses or demonstrates a preference for scents we explore these together. Sometimes we create a room spray or fill a film canister with cotton balls and a few drops of the preferred scent. Patients are encouraged to use these in conjunction with diaphragmatic breathing for a calming effect. Scented creams can be used for hand massage. In addition to olfactory stimulation, massaging the hands provides calming, deep tactile stimulation. During one of our late afternoon sensory groups we sprayed the group room with a eucalyptus

5.

SENSORY STRATEGIES

213

and spearmint spray. Both these aromas are associated with increased alertness. As the patients arrived they immediately became aware of the scent. We facilitated a discussion and everyone tried to guess what the smell was. Not everyone immediately engaged in the conversation but it was apparent through the affective responses of the group that this sensory activity had an overall positive impact. Two of the five patients in the group asked to borrow the spray for their bedrooms. Example 2: The biggest challenge of our careers was a portly fellow of 65 who was admitted to the unit exhibiting great pride in both his manliness and his nationality, and of the definite opinion that he needed no services from us. He asked every female staff member if she were married, and, if not, whether she would be interested in a lifetime with him. He demanded his favorite national foods. He was thoroughly offended when others pointed out his bad body odor, bad breath, and bad teeth, which he took as an affront to his machismo. “I brushed my teeth and I showered. Now leave me alone!” We decided to try a sensory approach with him, hoping that it would be neither insulting nor demanding. We brought in three kinds of popular after-shave colognes and asked him to choose the one whose scent he liked best as a gift. Next, he chose soap, toothpaste, body powder, and mouthwash by smell. In our opinion, he soon became the best smelling guy in town thanks to our appeal to his olfactory system (with help from Lever 2000® soap, Crest® toothpaste, Scope® mouth wash, and good old Johnson’s® baby powder).

Your turn—Sensory Break Close your eyes and imagine each of the smells below. Are they alerting or calming? (See Figs. 5.6 and 5.7.) • • • • • • •

Bacon cooked over an open fire, Freshly made coffee, A peeled orange, The air after a spring shower, A dirty garbage pail, Freshly baked bread, Fish, after three days in the refrigerator.

Vision Variations in light, color, and the amount of visual distraction in an environment influence people’s energy level and mood. Bright white light is itself a treatment for Seasonal Affective Disorder (SAD) during the long winter months (Lam, 1994). Even people without SAD often feel melancholic or less motivated in the winter, when there is less daylight. The fluorescent lighting that is found in most hospital settings is harsh, greenish in tone, and flickers (move your hand fast, and you can see a strobe effect). It can be

214

FIG. 5.6

TRIKAKIS, CURCI, STROM

FIG. 5.7

overstimulating to some people, and can therefore worsen negative behaviors in patients who are already feeling “high.” Conversely, dim light can be depressing. Deaf people are especially sensitive to proper lighting. Some deaf–blind patients prefer very bright, even lighting that helps them maximize their vision. Colors help create surroundings with different feelings. As a general rule, pastel colors, low intensity light, smooth shapes, low activity level, and uncluttered environments are calming. Primary colors, bright lights, geometric shapes, high activity, and cluttered environments are more alerting. Strong primary colors, which children love, are often used in learning environments such as schools because they stimulate alertness and attention. Softer colors are used in bedrooms to promote calming and relaxation. On our unit, we have a choice of two rooms for leading groups. If energy and mood is low we often choose the day hall for our OT groups. The day hall is close to the nurses’ station, has two walls of windows, and has hard chairs. If the mood and energy level of the patients is high we use the group room instead. It is farther from the busy nurses’ station, has only one wall of windows, and has soft, comfortable chairs. Example: One very funny but labile woman, when upset, would engage in loud, angry self-dialogue. This behavior would put staff on immediate alert because it often preceded aggressive acting out, sometimes requiring physical intervention to ensure her safety and that of others. To calm herself she liked to use Chinese meditation balls along with deep breathing. The meditation balls are weighted and provide deep pressure touch to the intrinsic muscles of the hand. When she began to demonstrate signs of escalation, we would have staff escort her to one of our visitors’ rooms. We noticed that each time she entered the room for a quiet break, she would turn off the fluorescent ceiling

5.

215

SENSORY STRATEGIES

lights. She confirmed that she found them irritating. One of our primary goals in sensory-based treatment is to provide individuals with ways of managing their own distress by setting up a comforting environment. Allowing her to sit in the dark, handle the meditation balls, and practice deep breathing was an easy, quick and positive calming intervention. Example 2: A young lady with a history of frequent self-abusive episodes responded quite well to a visual sensory approach for calming herself when she began to feel distressed. She adored animals, especially dogs. She enjoyed looking at magazines, calendars, and books with photographs of her favorite animals. She also took a special liking to two of our pet therapy dogs. There was an obvious improvement in her mood and increase in interaction with others each week when she was anticipating the pet therapy group. To further take advantage of her preferences, we decided to make a visual collage for her bedroom wall. With her permission we photographed her brushing, feeding, petting, hugging, and playing with the pet therapy dogs. Those pictures, along with others that she selected from magazines, were pasted onto a poster board. She hung the collage in her bedroom, near her bed. When she was upset, staff could encourage her to spend some time enjoying her poster. She carefully kept it secured to the wall, and added new pictures to it. The poster didn’t cure her self-abusiveness, but it helped her cope at times when she felt distress.

Your Turn—Sensory Break Consider the visual activities below and imagine how they might make you feel. Are they alerting or calming? (See Fig. 5.8.) • • • • • •

Watching the fire in the fireplace on a winter eve, Looking at sunlight through your bedroom window, Watching fish in an aquarium, Seeing a crocus poke through the snow, Playing video games at the video arcade, Fireworks.

FIG. 5.8

216

TRIKAKIS, CURCI, STROM

Sound and Vibrations The auditory system is our sense of hearing. Sound can be both heard and felt. Because this is the least used sensory system on the Deaf Unit we need not discuss auditory techniques extensively. However, we do occasionally use auditory strategies with our deaf and hard of hearing patients, particularly when they choose such activities themselves. During community outings, patients frequently request that the radio be tuned to a station that features music with strong bass rhythms. They also ask that the volume be turned way up. Hearing drivers and staff members may dislike this, but for our deaf patients, the rhythmic vibration can be a pleasurable sensory input. We take the same approach to sound and vibration that we take to all the other senses—we try to become detectives and figure out what each patient enjoys. In general, slow, soft, repetitive, and lyrical sounds are calming. Fast, loud, variable speed, high contrast, and sudden piercing sounds are usually alerting. Example 1: A young male patient who prided himself in being “cool” enjoyed listening to rap music on a large boom box when he was feeling distressed. He would blast the music in one of the Deaf Unit’s visitors’ rooms, and rock back and forth to it. It was amusing, and not uncommon, to see hearing staff boogying down the Deaf Unit hallway to the rhythm of the music. The volume and rhythm was motivating or calming for some people, but it was unpleasant for others. Therefore we negotiated with the young man to switch to using a CD player with headphones. He kept his boom box for use during our monthly birthday parties. We were delighted on several occasions to see that the music and vibration promoted dancing, laughter, improved moods, and a spirit of cooperation and camaraderie even after the party was over. Example 2: The hospital held a Christmas party for all its patients, deaf and hearing. The party filled the main auditorium with food, fun, and music. The patients on the deaf unit arrived about the time the music began. One young deaf lady sat quietly, not eating much, not talking, and not smiling at all. We wished that there were some way we could help her to enjoy herself. Having been born in China, she had difficulty with signed communication. A young deaf man got up to dance, and asked one author (Nancy Day Curci) to join him. Nancy must have looked confused, so he explained that he felt the vibration of the music and could dance to that. After the song, when Nancy left the dance floor, she brought back a balloon to the young lady sitting alone, having noticed that the balloon was her favorite color. She held the balloon up to the side of her head and began to smile—a BIG smile! She opened her eyes wide, got up from the chair, and began to walk around. Then she gave Nancy back the balloon to share the happy feeling. From that point on the young lady became more involved in activities and in treatment. (See Fig. 5.9.)

5.

217

SENSORY STRATEGIES

FIG. 5.9

Your Turn—Sensory Break Consider the auditory/vibration activities below and imagine how they might make you feel. Are they alerting or calming? • • • • • • • • • • • • •

Ocean waves, A police siren, Rock music, Spring rain, A clock ticking, Church bells, Vibration of rock band music, A telephone ringing, A crackling fireplace, Classical music, Thunder & lightning, An air conditioner, Children playing.

Something in Your Mouth Aside from eating, oral sensorimotor experiences include activities such as chewing gum, or nibbling on the end of a pencil or necklace. People often chew on their own lips or tongues when concentrating. Like other SMI activities, we often use these behaviors automatically to regulate our energy level and mood. The authors often bring a basket of candy filled with a variety of textures and flavors to groups. We refill the candy basket frequently so that

218

TRIKAKIS, CURCI, STROM

there is always something new to choose from. This provides novelty, which is yet another way to increase curiosity and motivation. For some reason, many of our patients with Borderline Personality Disorder seem to prefer chocolate and identify eating it as a sensory-calming strategy. We provide food at many of our staff meetings in an effort to facilitate everyone’s best ability to focus and perform. Smooth textures and tepid/ warm temperatures such as chocolate and bananas are usually calming. Strong spicy flavors and crunchy textures such as salsa and taco chips are usually alerting. (See Fig. 5.10.) Example: Each morning, a likable young man on our unit had a lot of difficulty waking up and getting going. He was generally willing to participate in treatment, work, and recreational activities so we knew it was not due to lack of motivation that he frequently missed morning activities. We designed a sensory wake-up plan that we posted on the wall in his room, as a reminder for him as well as for staff. His plan included the oral activity of brushing his teeth and tongue with mint toothpaste and rinsing his mouth with cold water. In addition to keeping the mouth clean, brushing stimulates touch receptors in the mouth and the mint flavor stimulates the taste receptors. Think for a minute about how tingly, cool, and fresh your own mouth feels after brushing. This simple self-care activity not only promoted good oral hygiene but it also enhanced his mental alertness.

FIG. 5.10

5.

SENSORY STRATEGIES

219

Your Turn—Sensory Break Consider the oral activities below and imagine how they might make you feel. Are they alerting or calming? • • • • • • • •

Sucking on a lemon candy, Chewing on a chocolate bar, Biting into a dill pickle, Licking your favorite ice cream cone, Chomping on a carrot stick, Eating a warm pretzel from a street vendor, Chewing on a straw, Drinking a cold soda.

Sensory Modifications to the Environment On the Deaf Unit, we have tried to use our knowledge of the benefits of sensory activities by modifying our environment in the following ways. 1. We allow patients to have bedclothes and familiar belongings from home. Thus, we support an environment more conducive to comfort. We often see patients, especially when first admitted, sitting or walking around the unit wrapped in a familiar blanket or comforter. This provides deep pressure touch and neutral warmth, which has a calming effect and, like a child’s security blanket, offers a sense of security and safety during the transition to a new and unfamiliar environment. 2. One of the units at our hospital has an aquarium in the day hall. Watching fish swim in a tank provides calming visual input. In contrast, television may be visually overstimulating to some people. The contrasting colors and shapes, speed of scene changes, and closed captioning errors may increase agitation. 3. We have requested dimmer switches for the lights in primary patient areas on the Deaf Unit. This will enable patients and staff to regulate the intensity of light. Bright lights can cause headaches and irritability. Furthermore, they may distract attention to a signed discussion and utilize more energy than the individual has in order to sustain focus and meaningful engagement. Deaf people, of course, like to carefully adjust the level of lighting to that which is optimal for signing. 4. We have rocking chairs and gliders at Westborough State Hospital. Slow rocking is soothing. We bought these chairs after noticing patients rocking in stationary chairs. This behavior was often seen negatively. By contrast, rocking in a rocking chair is viewed positively, as an acceptable, normal behavior. If we have a particularly active or agitated patient in a group, we often offer her the use of a rocking chair. This simple step can

220

TRIKAKIS, CURCI, STROM

prevent an incident. It supports the patient in maintaining self-control and helps her remain in the group. This is good for everyone involved. 5. We support the use of aroma diffusers, scented sprays, candles, creams, and compresses. Smell is an especially powerful sense; therefore, careful experimentation and attention to reactions is necessary when introducing aromas into the environment. Peppermint, eucalyptus, coffee, bacon, and citrus are among the aromas that are usually alerting. We often use the smells of a coffee brewing in the kitchen and a spritz of tangerine in the group room in the morning to help patients feel alert and ready start the day. Lavender is commonly used for calming. From time to time, we burn scented candles during staff meetings. This has been well received by the clinical team, and we often get special requests for particular scents. This simple sensory addition to meetings creates good feelings and a spirit of cooperation that, in turn, promotes increased attention to task and productivity. 6. We advocated changing the hospital policies that governed patients’ access to their personal supplies of favorite foods. We now have a refrigerator and food storage cabinets for patient use at any hour. Under the strict old policies, patients often complained, broke rules, escalated, and even acted out aggressively due to being unable to have access to their food. Example: One night when all other patients were sleeping, one of our patients asked to make a cup of cocoa. Denied access to the kitchen, she became quickly upset, escalating to the point that she assaulted staff and needed to be restrained. We don’t mean to suggest that this would never have happened if she was allowed to make her cup of cocoa—she had a history of frequent episodes of escalation and aggressive/assaultive behavior. However, it is possible this particular incident might have been avoided through easy access to the kitchen. Do we need to risk this kind of an upset over a cup of cocoa?

TOOLS WE USE TO TEACH, SELF-MONITOR, AND CHANGE LEVELS OF AROUSAL Moodometer The moodometer is a self-monitoring tool we use on the Deaf Unit to help patients to identify how they are feeling. It looks like a car speedometer, but instead of miles per hour it shows energy levels, from 0 to 10. Five represents the goal of feeling ‘just right.’ Our moodometers have color shading and facial expressions in addition to the numerals. These help linguistically limited patients understand the concept involved. We ask our patients to make a moodometer rating before and after each treatment session. We hope to help them recognize how each treatment and activity affects their mood and level of alertness. We have posted moodometers around the unit, and in patients’ rooms. (See Fig. 5.11.)

5.

SENSORY STRATEGIES

221

FIG. 5.11

Anger and Anxiety Thermometers The anger and anxiety thermometers are also self-monitoring tools. Patients make the thermometer themselves by adding color—cool shades of blue and green near the bottom and changing to yellow, orange, and red at the top. In addition, numbers 1 through 10 (low to high) and a velcro strip with a movable arrow is attached vertically alongside the thermometer. We teach and encourage patients to use these periodically throughout the day in order to track mood changes. (See Figs. 5.12 and 5. 13.) Feel Good Diary Card The Feel Good Diary Card promotes awareness and provides information. To use it, the patient fills in the date, his moodometer rating before and after an activity, and his preferences at that moment for sensory activities, both positive and negative. This helps patients notice that engaging in sensory activities does in fact change how they feel, and helps us to develop a personal list of strategies that work for each individual. (See Fig. 5.14.) SMI Information Board In a prominent location on the unit, we have put up a bulletin board dedicated to sensory-based treatment. Posters on our board illustrate low, high, and just right energy and mood levels. They describe the mood, attitude, and

222

FIG. 5.12

TRIKAKIS, CURCI, STROM

Anger Thermometer.

FIG. 5.13

Anxiety Thermometer.

Feeling Good Group — Weekly Diary Name Date

Moodometer Rating Start

Finish

Group Activities Like

Not Like

FIG. 5.14

amount of social engagement typical of each level. Our board also shows pictures and examples of how to change one’s mood or energy through each of the sensory modes just reviewed. The information on the board is conveyed visually, with simple language or none at all. (See Figs. 5.15 and 5.16.)

FIG. 5.15

FIG. 5.16

223

224

TRIKAKIS, CURCI, STROM

Comfort Menu In our group room we have a skills board that lists individually the abilities needed for effective coping, socializing, and problem solving. Being able to use SMI strategies is listed as a coping skill. Next to the skills board we keep an abbreviated version of the SMI Information Board that we call the Comfort Menu. Each morning during the daily community meeting we encourage each patient to choose a skill to practice during the day. Patients who choose SMI skills can use the Comfort Menu to get ideas. It lists activities such as taking a warm bath, riding the stationary bicycle, using the humbug massager, and so on. (See Fig. 5.17.)

FIG. 5.17

5.

SENSORY STRATEGIES

225

Comfort Box We keep a “comfort box” in the nurses’ station. It is filled with items that provide sensory stimulation. We encourage the staff to utilize these self-regulation tools as needed by the patients and for themselves. We have trained all the Deaf Unit staff in using the tools and in recognizing when they may be needed. Among other things, the box contains: squeeze balls, hand held massagers, Thera-BandTM (graded elastic exerciser), weighted blanket, medicine ball, Chinese meditation balls, a wooden back roller, Thera-PuttyTM, scented creams, and fidget toys. Aside from the Comfort Box, we also have recreational supplies on the unit, including a basketball, volleyball and net, a bowling game, a stationary bicycle, and a jogging trampoline. Problem Solving Scenarios One of the methods we use to teach patients and staff about SMI is through problem-solving scenarios in which they can make use of SMI. Shown here are situations presented to staff during a SMI training session. We present realistic situations demonstrating levels of alertness that are too high or too low, and then encourage patients and staff to brainstorm possible solutions to modify those levels. These problem-solving scenarios can also be employed during the cognitive segment of our Feel Good Group. (See Fig. 5.18.) Example: Apatient has been granted a day pass to visit family at home. He is concerned that he might lose control. The patient has a history of becoming agitated and threatening when his sister teases him. At this point his level of arousal could be considered high. What SMI strategies could he use to get in to the ‘just right’ range?

SMI Treatment Plan The SMI treatment plan consists of sensory activities recommended by the occupational therapist to teach calming or alerting skills. We write such a plan when it is apparent to us that a particular patient has difficulty selfregulating. We interview the patient, and discuss and practice a variety of activities in order to determine personal preferences for the plan. We educate the patient about how to use the moodometer and the diary card and we make recommendations about leisure and recreational activities to support the “just right” level of performance. We inform nursing and clinical staff that the patient now has a plan, and train the patient’s mental health advocate to help him follow the plan. (See Fig. 5.19.) SMI Treatment Protocol We have developed a treatment protocol that guides staff through the process of using sensory strategies with patients. The protocol has five steps.

226

TRIKAKIS, CURCI, STROM

FIG. 5.18

First, the staff member talks to the patient about the behavior at hand. She notes the patient’s choice of words in describing his behavior. Second, the staff member helps the patient to rate himself with the moodometer. We hope that the staff member’s observations will support the patient in selfawareness of his mood/energy level and encourage him to practice and learn self-monitoring skills. Third, we make suggestions and assist a patient to engage in an SMI activity. The staff member may choose an activity based on recommendations made by the OT on the treatment plan, or on his own learning and experiences with sensory self-regulation strategies. Fourth, the staff member asks the patient how he feels and requests that he perform another moodometer rating. Finally, she provides feedback, telling the patient any changes she observed such as a change in his moodometer rating, affect, posture, energy level, and/or engagement with the environment. She emphasizes that the patient was responsible for produc-

5.

SENSORY STRATEGIES

227

FIG. 5.19

ing the change, in order to help the patient experience the sensory activity as a coping skill. (See Fig. 5.20.) INDIVIDUAL PROCESS This section describes how our occupational therapy staff work with each patient individually. We meet with each patient shortly after admission to introduce him or her to SMI. We bring the Comfort Box with us, and try out its contents together. This is the beginning of our detective work to identify

228

TRIKAKIS, CURCI, STROM

FIG. 5.20

each patient’s individual preferences. We document the patient’s preferences in writing. For patients who are unable to use a written list, we cut out pictures and make a poster together. Next, we educate the new patient about how to use the self-monitoring tools. We bring in a stack of illustrated cards showing a variety of mood and arousal levels, see Fig. 5.21. We ask the patient to use the moodometer and/or thermometers to measure the arousal state shown on the card. This activity offers the opportunity for us to explain the characteristics of each level and begins the process of the patient learning to identify his own arousal state. Finally, we write an SMI Treatment plan and review it with the patient. We teach him how to use the Feel Good Diary Card. We assist each patient as needed until he is able to use it independently. We tabulate the information from these diary cards to determine the effectiveness of sensory strategies with our patients. (The results of these tabulations are presented later in this chapter.)

5.

SENSORY STRATEGIES

229

FIG. 5.21

GROUP PROCESS This section describes how Deaf Unit OT staff work with our patients in a sensory group. The “Feel Good Group” is practical, hands-on, and action-oriented, with sequenced activities that support the beginning of life-skills development. For the most part, it is not dependent on language. Therefore, (sign) language impaired deaf people can participate alongside people fluent in ASL or English. Our group helps patients increase awareness of their mood and energy level and is consistent with the Deaf Unit’s behavioral and skills training approach. It supports learning by doing, and guided self-discovery.

230

TRIKAKIS, CURCI, STROM

In our group, we strive to create an environment that reduces passivity and internal preoccupation, that stimulates interest in activity, and that conveys expectations relevant to patient needs, goals, and roles. We want to help patients use feedback from the environment and reorganize their behavior via sensory means. Each 45-minute Feel Good Group session has five segments, which are adapted from Mildred Ross’ (1997) Integrative Group Therapy—The Structured Five-Stage Approach. The degree of complexity increases from imitation of a few instructions to simple problem solving. We find that it is important for group leaders to provide a predictable routine and create an enjoyable environment that validates the activities. We often design groups around a particular theme such as a holiday, skill area, season, or event. In this way we can teach our patients about the selected topic while providing sensory experiences. For example, we used the Hale-Bopp Comet, which was visible in the fall of 1997, as a theme for one group. Example 1: One petite, smartly dressed, higher-functioning woman would arrive promptly to every meeting of the Feel Good Group. When we asked if she would prefer to transfer to a higher-level activity group she responded, “Oh, no. The days I come to group are better, I feel more organized and happier.” She attended until she was discharged from the hospital. Example 2: A more regressed patient would agree to attend the group only after much coaxing. Initially she would sit unresponsively outside the circle watching the activity. If someone threw her a ball, she would catch and return it, but would not make any other attempt to interact or communicate. However, she started showing up reliably for group, and soon could be found waiting outside the group room door. Gradually, she became more and more involved, investigating novelties, participating in physical activities. Eventually she sat within the circle and learned the names of other members. She became able to state her preferences for sensory activities, and asked for the group to take place on unscheduled days.

On the Deaf Unit we often need to actively encourage patients to join the Feel Good group. Example: One young lady sat in her room so stuck in her own emotional pain that she had no energy left for treatment. Armed with a piece of Hershey’s chocolate, which her records showed she liked, we went to her room. We offered her the chocolate and invited her to join the group, using warm facial expressions, body language, and sign language: “Please come to group. We’d like to know that you experience at least one nice moment today. Please try.” Our experience has taught us that mentally ill patients, even when overwhelmed with their own pain, still have time to be kind to others. Because we made no de-

5.

SENSORY STRATEGIES

231

mands from her beyond pleasing us and having a pleasant experience, she joined the group.

The five group stages are described in the following section. Stage One: Novelty and Introduction In stage one, we introduce the group and welcome the members. We try to help them feel that we value their presence. We ask members to rate themselves using the Moodometer and to fill out the Feel Good Diary Card. We introduce a sensory novelty—something that facilitates interest or curiosity, such as a bird nest or a gyroscope. We do this in order to promote sensory registration and attention. Our goal in stage one is to dissipate any feelings of fear, apathy, or hopelessness, to arouse patients’ alerting and pleasure centers, and to help patients know what to expect from the group. We have found it important during this first stage of the group to welcome individuals one by one and encourage them to participate at a very safe and primitive level. Using eye contact, facial expression, body language, human touch, and humor, we try to convey the message that “THIS IS THE PLACE TO BE.” By the end of stage one, if all has gone well, each patient is feeling alerted or calmed as needed, and is ready for stage two. Example 1: For stage one of the Hale-Bopp group, we showed the patients a mobile of the solar system. Example 2: One day, our novelty was a Bumble Ball. This battery-operated ball moves about on its own, providing visual and tactile sensory input. We noticed that a very passive, uninvolved young woman appeared to enjoy the Bumble Ball as it bounced and vibrated across the room. She remained drawn to it as we progressed through the group stages. She picked it up from the table, and sat cradling it like an infant. In future groups, it proved to be the object of choice. Choosing the Bumble Ball seemed to make her manner in the group more positive, outgoing, and assertive. Her interactions increased. She eventually was able to make her own needs known. Example 3: On one occasion, an 18-year-old male entered the group room 10 minutes early. He sat down with his right leg draped over the arm of his chair and looked at the therapist who was preparing for group. He crossed his arms. His facial expression said “dumb group, dumb people. I’m here only because my social worker told me to come.” His energy level appeared low. The leader responded by holding out two closed hands, nonverbally encouraging him to pick one. Both hands were empty. This increased his curiosity. The group leader did it again, this time enclosing fireballs in each hand. She kept one and gave him one. Through physical and facial gestures the leader started demonstrating the effects the fireball was having on her. The young man began to en-

232

TRIKAKIS, CURCI, STROM

joy the attention, and the tactile and oral stimulation. He responded with a half smile. He remained seated with arms folded, but his expression showed more awareness of the surroundings and greater alertness, and he had no difficulty participating in the group.

Stage Two: Movement We begin stage two with slow and controlled movement patterns. We find that moving together creates a feeling of connection with others and a more secure sense of self within the immediate space. We use parachutes, ribbon wands, therabands, hula-hoops, breathing, and chiffon scarves. We often give each group member a turn at leading a movement activity. Our parachute is 12 feet in diameter, and is decorated in primary colors. Each member holds tight, raising and lowering the parachute in unison with the others. Variations include having one group member stand under the chute while others first raise the chute, then let it fall to gently engulf the one in the center in a cocoon of warm breezes, soft texture, and vibrant colors. One member described this as “feeling like a spring day.” One day, members’ sense of ownership of the group become apparent when they added a new sensation, using the plant sprayer to spritz the member in the center with mist. Thera-BandTM is a wide elastic band of varying strengths and colors that is used for exercising. We use it to perform rowing movements with a partner. The slow forward to back motion and heavy sensory input to the upper extremities is popular with our patients. We also encourage group members to visualize where they are rowing and to imagine other sensations they might experience along the way. We see lots of smiles during this activity. Example: For stage two of the Hale-Bopp group, we used a large parachute to bounce a moon ball and an earth ball.

Stage Three: Target Activities In stage three, we introduce activities that require less physical effort but more thought and precision. It is important for leaders to choose activities that most of the patients in the group can do successfully. Our patients have seemed to enjoy target games especially. This stage helps to promote more organized behavior as members observe each other and cheer each other along. Typical activities on the Deaf Unit include KooshTM basketball, bean bag toss, ring toss, bowling, horse shoes, floor dominoes, floor tic tac toe, floor checkers, and safety darts, see Fig. 5.22. (The floor games are simply extra large versions of the table games. Because they are put on the floor, it is necessary for group members to move their bodies in order to place game pieces.)

5.

233

SENSORY STRATEGIES

FIG. 5.22

Example 1: A young man, who had recently celebrated his 20th birthday on the unit, was a long-term member of our sensory movement group. It was clear that he was a fan because he rarely missed a group. For the first few months, however, he would excuse himself before the stage three target activity, then return when it was finished. We wondered if he was embarrassed about attempting coordinated and goal-directed activity in front of others. We didn’t push him to become involved. Eventually he found his own way to join in, and stopped leaving the group: he offered to hold the target and to keep score for everyone. Movement promotes organized thinking. This young man showed increased confidence in general, which we believed was related to his involvement in movement activities on the unit. Example 2: For the Hale-Bopp group each member took turns scoring points by aiming the “Hale-Bopp comet” (a ball with a long tapered nylon tail, called a foxtail) at the “black hole” (a netted hoop placed on the floor), see Fig. 5.23. Growing group cohesion was apparent when members began cheering for each other. One young player took a leadership role when she showed the leader how to score a basket. After two tries failed the leader finally got the comet into the black hole. They where both so excited that they jumped up and down and spontaneously hugged each other.

During stage three members do not compete with each other. Instead, they compete against their own previous level of performance. We encourage them to make decisions and take risks. With each success they feel better. Stage Four: Cognitive In stage four, we try to use the “feeling good” energy generated in stage three to focus patients on thinking activities. These activities require the use

234

TRIKAKIS, CURCI, STROM

FIG. 5.23

of memory, concentration, and problem-solving skills. By stage four in most groups, patients’ attention level is high and they are well aware of each other. Typically, socialization and turn taking have become spontaneous. In choosing activities for stage four, it is important for the leaders to consider the skill needs of the members and challenge their own creativity to develop games that are educational and fun. Some of the activities we have used for stage four include: 1. Charades. Members choose a card that lists an activity of daily living (ADL) skill such as loading a washing machine, or a leisure activity such as playing pinball. Members take turns miming the activity while other members try to guess it. We then discuss how and why these skills are important for mental health and independent living. Deaf patients excel at this type of activity. 2. Matching/Concentration Games. We find that games help patients feel more receptive to engaging to therapeutic discussions. Themes include household and community safety, leisure, diet & nutrition, money management, a current event, a holiday theme, and so on. A game might involve having patients finding matching pairs of picture cards. When a patient finds a match, he explains how and why the item pictured is an important living skill. We encourage all members to join in a discussion. 3. Other games. We use “Behavior Skills,” and “Social Skills” (Programming Concepts, Inc., 1992), Food Pyramid Bingo (Stefancin, 1996), Money Management Dominos (one of our students’ inventions), and Wheel of Fortune (using treatment oriented words). 4. Show and Tell. We ask members to bring a personal hygiene item, hobby item, or favorite photograph as a launching point for group discussion. Showing photographs in particular helps patients to practice socialization skills by sharing information about themselves in a safe setting.

5.

SENSORY STRATEGIES

235

Example: We made a matching game for stage four of our Hale-Bopp group. The picture cards included the planets, NASA space ships, and American astronauts. Members became excited when another player was close to turning over the correct match. From time to time we noticed patients helping each other. One of our patients, who typically has difficulty engaging in sensible conversation and prefers to sit outside the group, became curious and organized enough to join in and impressively demonstrate his knowledge of astronomy. He had reached the ‘just right’ level of alertness and beamed with pride when the group leaders and other members responded positively to him.

Stage Five: Wrap-Up In stage five, we review what we did during the group. This helps us to identify individual likes and dislikes. In addition, members receive feedback from the group leaders and one another about their behavior, contributions, and accomplishments. Next, we ask members to do a follow-up moodometer rating (see Fig. 5.24) and to complete the Diary Card. If the leaders have succeeded, members’ ratings reveal an overall improvement in feelings of well-being. Leaders are alert at this point for opportunities to improve future groups. We thank everyone for joining the group and say good-bye. Example: During stage five of the Hale-Bopp group, the members the group told us which activity they enjoyed most. Many of them reported enjoying all segments of this particular group.

FIG. 5.24

236

TRIKAKIS, CURCI, STROM

DATA Presently, our group treatment takes place at 3:00 pm. Sometimes we enter the group room with a thimble’s worth of energy between us. We cross our fingers, hoping that our limited energy will sustain us through the 45-minute session. Time and again we have found that we leave the group with not only our original thimbles still full, but with an extra bucketful a piece. We feel more physically and mentally alert, and have an overall feeling of well being. Instead of our normal late afternoon, sluggish, “I wish it were time to go home” attitude, we become engrossed in making plans for our next weekly group, discussing the changes observed in the group members, and documenting the positive changes in the progress records. After many months of leading the group and observing our patients’ development of skills for self-awareness and self-regulation, we felt this was an experience that should be shared. Our members’ Feel Good Diary Cards for both individual and group sessions have provided us with informal data to substantiate our objective findings. The percentages in the chart below indicate how often each patient’s self-rating was closer to optimum after the group than before. Moodometer Ratings After Group Activity Compared with Before Patient

Number of Sessions

Better

Same

Worse

#1

21

75%

——-

25%

#2

16

69%

19%

12%

#3

12

42%

50%

8%

#4

11

64%

36%

——-

#5

11

82%

18%

——-

#6

10

67%

20%

13%

#7

8

87.5%

12.5%

——-

#8

8

63%

37%

——-

#9

8

75%

25%

——-

#10

8

62.5%

25%

12.5%

#11

6

33%

67%

——-

#12

3

33%

67%

——-

#13

2

100%

——-

——-

#14

2

100%

——-

——-

#15

1

100%

——-

——-

#16

1

100%

——-

——-

#17

1

100%

——-

——-

#18

1

100%

——-

——-

5.

SENSORY STRATEGIES

237

CONCLUSION We all make sensory choices based on what makes us feel good. We decorate our homes and offices to reflect our sensory preferences. We choose recreational activities in the same way that we choose from a restaurant menu, seeking a ‘just right’ feeling of vitality and contentment. We all know that when we feel good physically we are better able to carry out our roles in life and to gain substance from living. The use of sensory movement strategies for regulating energy and mood levels is hardly limited to those with mental illness. We are delighted that Deaf Unit staff has responded enthusiastically to SMI both for the patients and for themselves. (The current occupational therapist on the Deaf Unit staff at the time of this writing, Diane Trikakis, often gets requests for a “personal SMI consult.”) From time to time a staff member during a meeting will announce, “I need an SMI break.” Everyone will stand up and someone will volunteer to lead. Everyone takes delight in the small box of stimulating toys and a range of snack foods that we keep on a table during meetings. Visitors renew our appreciation of the specialness of this approach. Patients feel destigmatized when they see that staff members also make active use of SMI activities. SMI treatment is particularly useful for “psychologically unsophisticated” psychiatric deaf patients (see Glickman’s chapter in this volume) because it is fun, highly engaging, therapeutically powerful, and minimally dependent on language. We see the benefits on our Deaf Unit every day. REFERENCES Ayres, J. A. (1979). Sensory integration and the child. Los Angeles: Western Psychological Services. Ayres, J. A. (1989). Sensory integration and Praxis tests. Los Angeles: Western Psychological Services. Fisher, A. G., Murry, E. A., & Bundy, A. C. (1991). Sensory integration: Theory and practice. Philadelphia: F. A. Davis. Hunter, R., & MacAlpine, I., (1963). Three hundred years of psychiatry 1535–1860. London, UK: Oxford University Press. King, L. J. (1977). Workshop notes: Considerations in a mental health setting. Durham, NH: University of New Hampshire. Lam, R. W., (1994, January). Seasonal Affective Disorder. Current Opinion in Psychiatry. Retrieved from http://www.mentalhealth.com Programming Concepts, Inc., (1992). Behavior Skills. 5221 McCollough, San Antonio, TX. Ross, M. (1997). Integrative group therapy: Mobilizing coping abilities with the fivestage group. The American Occupational Therapy Association. Bethesda, MD. Stefancin, K. A. (1996). Food Pyramid Bingo. Lakewood, OH: SmartPicks, Inc.

238

TRIKAKIS, CURCI, STROM

Trott, M. C., Laurel, M. K., & Windeck, S. L. (1993). SenseAbilities: Understanding sensory integration. San Antonio, Therapy Skill Builders. Williams, M. S., & Shellenberger, S. (1996). How does your engine run? A leader’s guide to the alert program for self-regulation. Albuquerque, NM: Therapy Works, Inc.

6 Culturally Affirmative Residential Treatment Services for Deaf Children With Emotional and Behavioral Disorders Judy Vreeland Walden School Jim Tourangeau The Learning Center for Deaf Children

Comprehensive residential treatment facilities are designed to serve children and adolescents whose social, emotional, and behavioral difficulties cannot be addressed in the traditional school environment. The children in such facilities might, for example, need 24-hour supervision and extensive support because they pose a danger to themselves or to others. So what happens when a child in need of this type of care is deaf? Facilities for hearing children cannot serve deaf children. The most obvious barrier is language: The child needs to be able to communicate directly with peers, caregivers, teachers, and mental health clinicians. But much more than linguistic accessibility is needed. Treatment programs for Deaf children must also address variations in Deaf children’s degree of language fluency, the importance of Deaf culture in deaf children’s development, and the power dynamics that exist between culturally Deaf and culturally hearing people. They must recognize the value of Deaf adult role models, as well as the boundary challenges faced by professionals who are members of the Deaf Community. They must work with families that do not share a native language with their Deaf children. Such factors will affect every aspect of school programming, from how staff are hired and trained to how services are delivered and how the program is managed. Walden School, where the authors work, is a 24-bed residential treatment facility serving Deaf children ages 8 to 21 who have severe social, emotional, or behavioral problems. It was established in 1987, on the campus of The Learning Center for Deaf Children, a bilingual-bicultural school 239

240

VREELAND AND TOURNAGEAU

located in Framingham, Massachusetts. Ms. Vreeland serves as the director of Walden School and Mr. Tourangeau is the Dean of Students for TLC. This chapter explores the issues unique to culturally affirmative residential mental health treatment with Deaf children and youth, based on our experience at Walden School. These issues are: serving students with a broad range of needs and abilities in one program, working with families that live far from our program site, the benefits and limitations of associating with a school for deaf children as opposed to a therapeutic program for hearing children, appropriate mental health approaches, confidentiality and the Deaf community, assisting students struggling with their identities as Deaf people, using interpreters, and arranging for aftercare. DEAF CHILDREN IN TREATMENT Diagnostic Profiles Just like those in hearing residential treatment programs, the children and adolescents at Walden School can be self-abusive, aggressive toward others, or sexually inappropriate. Unlike specialized treatment programs for hearing children in which the population is usually defined narrowly, Walden School serves students with a wide range of cognitive functioning, linguistic skills, diagnoses, and presenting problems. For example, at the time of this writing, we have an 8-year-old abandoned child with a history of sexual and physical abuse, almost no formal education, and a communication system (not a language) that consists of gestures and a few ASL signs. Simultaneously, we must serve a 14-year-old with behavioral outbursts, aggression, and developmental delays due to birth trauma. Other students include a native ASL user of above-average intelligence with a history of suicidality, an adolescent displaying antisocial behaviors, and a young adult with a chronic mental illness. Brought together in our program because of their deafness, our students may have little else in common; the potential for problems created by their varying needs is enormous. Separation From Home and Family Having to leave home to enter residential treatment, even when due to family neglect and abuse, is invariably painful to children, Deaf or hearing. Because of the scarcity of programs that can serve them—many states do not have a single appropriate residential program—Deaf children are more likely to find themselves too far from home to allow regular visits. Thus, we tend to serve students from a much broader region than similar programs for hearing children. Since our program began 10 years ago, we have served children from 11 states. Providing effective services to out of state students requires careful planning to address separation issues, intake needs, home–school communication, family therapy and support

6.

241

RESIDENTIAL TREATMENT

needs, and communication with the school district and social service agencies in the home state. Similarly, when the child is ready to return to his or her home state, we need to work closely with families and their state agencies to establish support and follow-up services before the transition takes place. These issues are addressed further in the sections on family services and transitions and after care. Our Students’ Language Needs Many Walden School students’ families have limited signing abilities. In addition, our students often have had multiple previous school placements. As a result, they may have lacked consistent, fluent language models before entering our program. Their language learning may then have been compromised further by their emotional and behavioral difficulties. Our students need a fully linguistically accessible environment not only for ease of everyday communication, but often so that they can learn American Sign Language. Immersion in a rich ASL environment is an essential component of our treatment. Many deaf children need to be surrounded by and directly taught American Sign Language so that they can develop sufficient language skills to enable them to form meaningful relationships and utilize treatment services. In these instances, ASL is much more than the vehicle for providing the treatment. Case Example Maria is a 15-year-old girl who came to Walden School at age 11, shortly after emigrating from the Dominican Republic. Arriving in this country, she attempted suicide. She was hospitalized, and then placed at Walden School. Maria had received little formal education in the Dominican Republic. She communicated primarily through gestures and homemade signs. Reports from her hospitalization speculated that her suicide attempt may have been related to sadness, confusion, and anxiety about the move, which separated her from many family members. Three older siblings had remained in her home country. Our initial treatment plan for Maria at Walden School involved helping her adjust to the new setting and new country, helping her form relationships with peers and adults, and teaching her American Sign Language. Maria’s family lived in a nearby state. We scheduled biweekly parent meetings during their visits with Maria. Because the family therapist was Deaf, and the family did not speak English, these parent meetings were conducted with the assistance of two interpreters. Through immersion in our ASL environment and formal tutoring by a Deaf ASL instructor, Maria’s communication skills improved significantly. Over time, her depression lessened, and she began showing an interest in

242

VREELAND AND TOURNAGEAU

social activities. She joined The Learning Center’s volleyball team. In therapy, however, she began creating scenarios using dolls, toys, and art activities that raised concerns about her family life. As her stories became more specific, her depression returned. She ate and slept poorly, lost interest in games and activities, and became angry for reasons staff could not identify. As the therapist tried to work with Maria’s parents, her father began to withdraw. He started showing up late and missing appointments, then stopped coming altogether. Maria then disclosed that he had abused her physically and sexually. At first, Maria’s mother expressed disbelief and denied having had any knowledge of abuse. Later she supported what her daughter had said and shared details of the repeated physical and sexual abuse Maria had suffered at the hands of her father. We learned that in the Dominican Republic, her adult brothers had provided her some protection. Once separated from them, she was defenseless. Her fear and despair had led to her attempted suicide. To this day, 4 years later, Maria still struggles to communicate. Hearing staff fluent in ASL will often turn to native ASL users for assistance in understanding her. As a visual language, facial expression and body movements are integral parts of ASL, and are often the parts with which hearing people struggle the most. Yet they are especially critical for understanding when communicating with late-language learners like Maria. Deaf people are also more adept at adjusting their language to match that of the person with whom they are interacting and can better understand the person who use gestures and approximations in combination with ASL than can most hearing signers. The situation is comparable to studying a foreign language. A student may learn Spanish in the classroom and feel confident with the slow, well-articulated language of the instructor. The same student would be humbled, however, by a trip to a Spanish-speaking country, where people speak more quickly and in different dialects, use slang, and assume that local references will be understood. Had Maria been placed in a predominantly hearing environment, with some signing staff and interpreting support, it is very possible the abuse that she had suffered would never have been discovered. Developing a more formal language and being surrounded by people who could understand made it possible to address a major issue that could have ended her life. Meeting the Needs of Families Walden School believes strongly that a quality treatment program for children must, in practice, be a program for families. Although we have always offered services such as family therapy and ASL classes to families, a thorough self-assessment several years ago suggested we were not doing enough. We always spoke of family bonds as critical, and thought that we were doing all we could to support families. However, as we looked more

6.

RESIDENTIAL TREATMENT

243

carefully at our practice, we realized that family services were treated as expendable. When physical distance posed a problem, the only perceived solution was to reduce the frequency of family contact or eliminate the service. When complex family problems led to lack of involvement in the program, and at times, loss of custody, we had taken the view that the family could not make use of our service, rather than that our service was not meeting the family needs. We realized that a major shift in our thinking was necessary to allow us to recognize limiting assumptions, re-examine our programming, and expand on our services to families. As a young program, it was easy for us to fall into the trap of blaming families. In many instances, we saw children who had been physically and emotionally hurt by caretakers. As is so often the case for Deaf children from hearing families, we also saw many parents with only rudimentary skills, at best, in communicating in ASL. Our response, as we began working with these children, was to see parents as villains, and focus our attention on working with the child. As our program developed, however, we saw that this narrow perspective was neither fair nor helpful, and we began, through staff training and program development, to change that perspective and reach out to families. However, as we sought to develop quality services for families we faced some significant hurdles. Addressing Language Barriers Within Families Therapy with families of Deaf children in residential treatment requires careful consideration of language and communication. The vast majority of our families are hearing, and for most of those hearing families, English is their native language. Their Deaf child’s primary language is usually American Sign Language. Very few of the children who come to our program can communicate comfortably and fluently in spoken English. When family therapy is provided, whether the therapist is Deaf or hearing, interpreters are usually needed. Although some hearing parents possess conversational skills in American Sign Language, most prefer to use their native language in a situation as complex and intimate as family therapy. Just as we respect the Deaf child’s needs regarding communication accessibility, we want to be respectful of family members’ language needs as well. Language accessibility raises some difficult questions when a clinician works with parents alone, without the Deaf child. Some hearing parents may request to work with a therapist who can communicate fluently in their primary language. They feel they cannot be as open and honest, or establish an effective therapeutic relationship through an interpreter. Initially we were resistant to this, feeling that, as a bilingual program with ASL as the language of instruction and conversation, it would not be appropriate to assign a therapist to a family on the basis of his or her spoken English abilities. However, as we worked to shift our focus from child-centered care to family-centered care, we realized that we needed to be as respectful of families’ communica-

244

VREELAND AND TOURNAGEAU

tion needs as we were of the children’s. We would not expect a child to work with a nonsigning hearing therapist and use an interpreter. Therefore, we did not want to require a parent to work with a therapist utilizing an interpreter. This is now one of many factors we take into consideration when assigning clinicians to work with children and families. Working With Families From Geographic Distances Family work for residential treatment facilities serving Deaf children poses some unique challenges. As mentioned previously, the geographic range served by the facility tends to be broader than many treatment programs for hearing children. Although Walden School is relatively small (with a capacity of 24), one third to one half of our students tend to be from out of state. This presents an obvious challenge to ongoing family services and has been addressed in several ways. During the referral and intake process, family services and family visits are discussed as an integral part of the program. Before a child enters Walden School, specific arrangements for family involvement are worked out. These services are individualized based on need, but may include a schedule for family visits to Walden School, with a commitment from the referring agency to cover the cost of transportation; plans for ongoing family therapy on site, in the home, or via phone conferencing; a schedule for weekly phone contact between program and family and/or weekly written reports; a plan for regular phone contact between child and family; and plans for family involvement in the Walden School quarterly festivals, events that bring families, friends, children, and staff together for fun and celebration. As another way to support families who must travel long distances, Walden School offers on-campus housing to visiting families. Some parents stay on campus for the first few days of their child’s placement, and this assists with a child’s initial transition from home to Walden School. On-campus housing also makes it easier for families to visit, attend team meetings, and participate in the seasonal festivals. Case Example Len was a 14-year-old neurologically impaired Deaf boy who had always lived with his mother. His father left the family when Len was a toddler. Len had no siblings. Although he had always displayed some difficult to manage behaviors, the frequency and severity of these behaviors increased significantly as he entered adolescence. After being moved from the school for the Deaf to a special-needs program for hearing children and back to the school for the Deaf with a one-on-one aide, it was decided that more intensive programming was needed, and Len was referred to Walden School. Len’s mother supported the placement, but was very concerned about the separation and worried that he would perceive it as rejection by

6.

RESIDENTIAL TREATMENT

245

her. As part of the intake process, our clinical coordinator met with her and worked out the following plan: Len’s mother came with him for the first week of his placement. For the first 2 nights, she slept in an unoccupied room in Walden School. The remaining nights were spent in family housing on campus. In preparation for the move, she and Len had taken many pictures of their home community, family, and friends. They put these into an album that they brought with them to Walden School to share with staff and students and to help him maintain the sense of connection with home. On Len’s first day at Walden School, he and his mother took pictures of the school and the new staff who would be working with Len. Len knew that these would be shared with family at home so that they would know more about his new program. Len’s mother joined Len’s class and residential unit for meals during his first 2 days, then gradually reduced her contact. Before Len’s mother left at the end of the week, he was given a calendar that included her schedule for phone calls and visits over the following months. By the time she left, both Len and his mother seemed more comfortable with the placement. This plan not only helped Len adjust to his first residential placement, but it gave his mother an opportunity to observe the program and get to know the people who would be caring for her son. CLINICAL SERVICES TO STUDENTS Approaches to Treatment The small number of students in Walden School and the wide range of ages, linguistic skills, cognitive abilities, and treatment needs of the children require that our clinicians be versed in a broad range of treatment theories and approaches. Although each Walden School therapist may have his or her own areas of specialization such as play therapy or family therapy, each also provides some individual, group, and family treatment. The goals of individual treatment at Walden School can range from the development of insight through psychodynamic therapy to the expansion of social skills through psycho-educational instruction and practice. Play therapy and role playing are the modalities of choice when working with the younger children in the program. These approaches have also been valuable for those with significant language delays. For example, Maria, in the earlier case example, made her initial disclosure that she had been abused through scenarios she created in play therapy. For children and youth fluent in ASL who are recovering from physical, emotional, and/or sexual abuse, Walden School uses a system of stages to help track the child’s clinical progress. The stages are also useful for the children to enable them to follow their own healing process better. Stages are not a behaviorally oriented level system involving target behaviors, earned points, or privileges, but rather a clinical tool that offers a way for

246

VREELAND AND TOURNAGEAU

therapists, direct care staff, and the children of Walden School to understand, discuss, and monitor the healing process. Our system of stages is explained to children on entry to Walden School, and is used with them in therapy and throughout their programming. To be effective, a model such as this is dependent on building a sense of community which cannot happen without a shared language. Whether they are involved in a formal therapy group, a recreational activity, or a community service project, the children need to be able to communicate comfortably with all members of their community. Programming begins with a period of Orientation, the goal of which is for the student to learn daily routines and expectations, to attend therapy sessions, and to begin to name the reasons for placement at Walden School. Students are also expected to complete a community service project that will benefit others on the unit. Community service is built into the program throughout all stages as a way to develop empathy and create a community culture of giving. The specifics of each project are developed with the child’s input; at this stage it may be something as simple as decorating the unit. Once the orientation is completed, Stage 1, called Goal Setting, focuses on problem identification. The student examines past and present behaviors and begins to identify contributing factors that led to those behaviors. The goal is for the student to become aware of behavior patterns and negative response cycles. In therapy, the student completes a personal time line specific to his or her behavioral history. Community service at this stage usually includes projects that benefit others in the Walden School community, such as teaching a skill to others or organizing a brunch fundraiser for the recreation room. Stage 2, or Active Engagement, begins at the point when the child is perceived to be genuinely committed to treatment. He or she is beginning to accept responsibility for personal actions and is demonstrating internal control. This may be seen through more frequent use of anger management and conflict resolution strategies, acceptance of staff prompts for appropriate behaviors, or the ability to maintain respectful boundaries with others. Goals at this stage include the identification of positive alternatives to the known negative behaviors, a reduction in their reliance on adult prompts, and attempts to reach out more to peers. At this point, they become involved for the first time in a community service project in the outside community. Stage 3, called either Initial Recovery and Transition or Restitution and Transition. For most students, Stage 3 includes a plan to confront (literally or symbolically) any people who were abusive to them. For those with a history of abusive acts toward others, Stage 3 is a time to make restitution. Students who have achieved Stage 3 are feeling ready to confront their abuse and to make reparation to those whom they have hurt. They are also able to discuss their own emotional responses to these processes. Each student develops a personal recovery or reparation plan with his or her therapist and presents it to the unit before implementing it. Once this has

6.

RESIDENTIAL TREATMENT

247

been carried out and processed in therapy, discussion turns toward transition planning. The final stage, called Moving Out, involves a gradual transition back home and/or to less restrictive school or residential programming. At this time, the students also reflect back on what has been helpful and discuss how to help themselves manage the changes without significant regression. Group Therapy at Walden School Many of the students in Walden School have responded well to group therapy. We find it often works best to pair clinical staff with professionals from the school or residential departments. Groups are usually run by a team of two or three, one of whom is a member of the clinical department, and at least one of whom is Deaf. The other group facilitators are chosen based on the focus of the group and the areas of expertise of the individual professionals. These groups are valuable not only for the therapy and skill building opportunities, but as another way to allow for peer support and to reinforce the sense of community. One of our treatment units serves young adolescents with severe oppositional behaviors. These youths participate in five groups, each meeting twice a week. The groups include: • Anger Management: teaches principles and strategies for managing one’s anger with the goal of decreasing the frequency and intensity of aggressive behaviors, • Social Skills: an activity-based group designed to enhance individual creativity and promote logical thinking to increase students’ abilities to make appropriate decisions, • Conflict Resolution: frames conflict as natural and inevitable; helps students recognize conflict, identify the feelings that arise in response to it, and develop strategies for managing conflict without aggression, • Cognitive Relapse Prevention: explores how thinking impacts feelings and behavior; helps students identify their own negative thinking patterns and reframe them; teaches strategies for stopping negative cycles to prevent relapse, • Human Sexuality: teaches human sexuality and development in the context of healthy respectful relationships; addresses issue of sexual abuse and its consequences for victim and perpetrator. Issues of Boundaries and Confidentiality The following section on staffing considerations addresses the boundary issues faced by Deaf professionals who live and work in the small, tight-knit Deaf community. This risk of overlap of the personal and professional can also have a profound effect on the therapeutic alliance and on efforts to help

248

VREELAND AND TOURNAGEAU

a child develop trust and move on from past trauma. Children and Deaf parents will often raise questions about whether or not they can be sure that a therapist will not share details of their lives with others in the community. This seems to be a particular concern when the therapist is Deaf. Traditional clinical training encourages clear, firm boundaries between therapist and client. But in the Deaf Community that is virtually impossible. Therapist and client will see each other at social events. In our view, this must be acknowledged and discussed openly and repeatedly in order to ensure a healthy therapeutic alliance. Deaf students in treatment may also experience confidentiality and boundary issues related to family members, which can affect their emotional healing. Two examples follow. Case Example Robbie was placed in foster care as a small child after suffering severe abuse and neglect. His foster parents were involved in the Deaf community; the foster father was a teacher at the school for the Deaf near his home town. As Robbie grew, he became increasingly defiant and aggressive, posing a serious threat to members of the family. After an attack on a younger foster sister necessitated medical treatment, Robbie was placed at Walden School. Shortly afterward, the family made the very difficult decision that Robbie could not return to their home. As might be expected, this was a traumatic loss for Robbie, who had lived with them for almost 2 years. The loss was compounded, however, and his treatment complicated, by the fact that he would continue to come in contact with his foster father. Their paths would undoubtedly cross at school and Deaf Community events. These issues were addressed in therapy sessions with Robbie and in meetings with the foster parents at the time of separation. Robbie also worked on an ongoing basis to develop strategies for coping with the occasional encounters with his former foster father. Case Example Donna was a young adolescent in state custody when she came to Walden School. Her mother was a Deaf woman who had been very young when Donna was born. She had attempted to raise Donna as a single mother without steady employment, but suffered from drug and alcohol dependency that led to neglect and to emotional and physical abuse. At Walden School, Donna began disclosing details of her experience. She described a complex mix of fear, anger, and longing when she thought of her mother. She worked hard to let go of her fantasies and accept that her mother might never be able to care for her. Donna made significant progress, and by the time she was in high school, although still living at Walden School, she was being educated full

6.

249

RESIDENTIAL TREATMENT

time in The Learning Center’s high school. There, Donna discovered that one of her classmates who came from a Deaf family and went to many parties and events at the local Deaf Club knew her mother. The girl began telling Donna stories about her mother. This was agonizing for Donna, who had not seen her mother in 3 years and was working so hard in therapy to accept the loss and move on. In this instance, Donna brought her concerns to her therapist, who was also a member of the Deaf Community. The therapist worked with Donna to help her clarify what she truly did and did not want to know, to recognize her options, and to be clear with the other student about the boundaries she wished to establish. Helping students like Robbie and Donna come to terms with the overlapping relationships inherent in a small community is an important part of the work of a Walden School clinician. Addressing Deaf Identity Issues Most Walden School students have complicated histories—families in crisis, multiple school placements, repeated hospitalizations, serious medical or psychiatric issues. With so much trauma and disruption in their lives they are not able to develop a strong and healthy identity, including their identities as Deaf people. This often emerges as a critical treatment issue. Case Example Matthew had been through three foster homes and four school programs by the time he reached Walden School at the age of 15. He was angry at his mother, who had come in and out of his life, and now lived two states away. He was angry at his father, who had abandoned him completely when he was 8. And he hated being Deaf, because he perceived it as the reason for the loss of his parents. His educational experiences, with one brief exception, had been in small classes for Deaf children within large public schools; he had rarely encountered Deaf adults. He was initially very disturbed about being placed at Walden School. To him, it symbolized another foster family “failure.” In addition, it forced him to confront his deafness in ways he had long resisted. We respected his initial refusal to work with a Deaf therapist, and instead assigned him to a hearing therapist. Her gender, however, was a problem for him, as he viewed women as weak and “stupid.” The fact that she was hearing proved problematic as well, and he often threw it back at her as a reason why she could not understand his needs or experiences. Defenses of this nature always show up in therapeutic relationships in some way, and this clinician was able to address them and use them in therapy. Still, she felt she was only getting so far and wanted to do more.

250

VREELAND AND TOURNAGEAU

As time passed, Matthew became close to the residential supervisor of his unit. What began as a shared passion for hockey (the supervisor had played on the hockey team in the Deaf Olympics) grew into a trusting mentor relationship. When Matthew began considering suicide, he went to this man, not to his therapist. The supervisor immediately brought the therapist into the discussion, and Matthew was subsequently hospitalized for a brief period. While Matthew was in the hospital, the therapist asked the supervisor if he would consider joining her individual sessions with Matthew. He agreed, and they both met with our consulting psychologist to discuss how to do this without causing confusion or triangulation. Once they were clear on their working relationship, they discussed the idea with Matthew, who loved it. This arrangement continued for almost 2 years, until Matthew was able to make the transition out of Walden School and into a school for the Deaf in his mother’s home state. Although he was not able to move in with her, family and parenting work that had been done by our therapist during Matthew’s placement enabled them to develop a stronger relationship and work out a consistent arrangement for visits. Program Identity Walden School is part of The Learning Center for Deaf Children, a school serving Deaf children from infancy through high school, and our facility is located on the grounds of TLC’s main campus. This organizational structure provides us with extensive resources, such as occupational therapy, physical therapy, audiology, the student sports program, American Sign Language instruction, speech development, and opportunities for professional training and networking for our teachers. It also provides our students with a rich language environment, which could never be duplicated in a program affiliated with an institution for hearing children. Walden School students are surrounded by peers and adults, from maintenance workers to administrators, who use and understand their language. The value of this language immersion experience can not be underestimated. Because of the low incidence of deafness, a treatment program for Deaf children is not likely to exist as an independent institution. Programs such as Walden School are typically affiliated with either a school for Deaf children or with a treatment facility for hearing children. Given the severity of the emotional, neurological, and psychiatric disabilities of the children served by these programs, mental health professionals sometimes assume the logical affiliation would be with a larger agency serving hearing children with similar needs. However, we believe that maintaining an identity with a school for the Deaf has allowed us to attract high-quality Deaf professionals and paraprofessionals, develop a strong, fully accessible therapeutic program, provide extensive support services, and develop gradual transitions to maximize success.

6.

RESIDENTIAL TREATMENT

251

Being part of a school for Deaf children also gives us the opportunity to develop transition plans for students to gradually mainstream into less restrictive settings as they progress, by starting to attend academic classes and participate in social events with peers at The Learning Center. Transition plans can be individually tailored and paced according to the needs of each student. The risk of being affiliated with a school for Deaf children rather than with a treatment facility is that staff can have a tendency to minimize the seriousness of the emotional, neurological, or psychiatric disability. Without a strong orientation and training program for staff, this can lead to unreasonable expectations and ineffective and inappropriate interventions. How this is addressed is discussed in the section concerning staff training. STAFFING CONSIDERATIONS Recruitment Having a mission founded on sound theory is valuable, but it is the quality of the staff that ultimately determines the success of any program. The Learning Center’s Personnel Director, in conjunction with Walden School management staff, has developed a comprehensive recruitment strategy. Using a list of journals, newspapers, Internet sites, and organizations within the Deaf community, as well as the colleges and universities serving Deaf students, we advertise nationwide for all positions, including entry-level child care workers. To assist out-of-state applicants, we offer housing for interviewees and allow them to submit interviews by videotape if they are unable to make the trip to Massachusetts. Given the small, tight-knit Deaf Community, the personal networking of staff already employed at TLC is often a rich resource for new staff. We offer current staff recruitment bonuses to encourage them to bring others on board. Even with such extensive efforts to seek qualified staff, it remains a challenge to find people with the knowledge, skill, and compassion necessary to work effectively with the children and youth who come to Walden School. The ideal employee might be a Deaf native ASL user with a degree in a field related to the position for which he or she is applying, as well as experience working with disturbed children in a school or mental health setting. Such applicants, however, are extremely rare. The reality is that, as we consider qualifications, we must establish priorities and then design training programs to develop skills that may be weak or missing. To effectively serve Deaf children in need of treatment it is essential to prioritize language and culture in hiring and to ensure that a significant percentage of management, clinical, educational, and child care staff are Deaf. Language should not be a barrier as children in treatment struggle to learn new ways of being and relating to others. Without the flow of easy communication, critical

252

VREELAND AND TOURNAGEAU

content and subtle nuances will be lost. In addition, the frustration of being misunderstood or not understood at all adds to the children’s struggles and reduces their willingness to take risks with what they share and how they connect with others. This was demonstrated clearly in the case of Maria, presented earlier. Deaf employees have several other qualities that our program relies on. These are discussed next. Hiring Deaf Professionals and Paraprofessionals With few exceptions, the best users and teachers of a language are going to be those for whom it is a native or a primary language. This, however, is not the only reason to consider hiring Deaf people. Many of the children and youth at Walden School come to the program having met few, if any, Deaf adults. This creates a sense of difference and isolation that can intensify depression and a negative self-perception. It may also lead the child who has been abandoned or removed from an abusive home to fear that his or her deafness was the cause of such mistreatment. Having healthy and positive Deaf role models can be a powerful antidote to self-hatred and self-blame. Deaf professionals and paraprofessionals also offer a depth and breadth of experience in the Deaf Community that a hearing person could never provide. Through daily interactions with Deaf adults, the children and youth at Walden School learn about the rich educational, cultural, and recreational activities available to them in the Deaf Community. From clubs to colleges, theater to sports, they learn about opportunities naturally through conversation and involvement rather than through lessons taught by a teacher outside of the community. This has a therapeutic impact, as it builds pride and a positive identity. Community outings with Deaf adults are valuable learning experiences for the residents of Walden School. As they observe the adults in stores, restaurants, or at the movies, they learn strategies for communicating with nonsigning people that they can then practice in the presence of supportive adults. As with the other examples of the benefits of Deaf role models, this not only develops knowledge and skills, but has the therapeutic value of building confidence and feelings of self-worth. Walden School maintains a strong Deaf presence in all areas—management, education, the residence, and the clinical department—and we use ASL as the language of general discourse throughout the program. This removes the sense of pathology from Deafness along with the barriers to communication and empathic understanding that can accompany the pathological view. A commitment to such culturally affirmative programming then shapes our advertising and hiring practices, our procedures for professional communication, and the design of staff training and professional development services. Although Walden School has always had Deaf people in management positions, it has only been since 1999 that the team has been at least 50%

6.

RESIDENTIAL TREATMENT

253

Deaf. Prior to that, only two out of eight team members were Deaf. This shift has had a positive impact on the team’s functioning and on staff’s perception of administration. When we had only two Deaf administrators, there was a sense of division, both within the team and between management and direct care staff. The Deaf managers reported having difficulty advocating for their concerns and priorities within management team meetings. They also faced criticism from Deaf staff, who identified administration as “hearing” and perceived the Deaf members of that team as “one of them.” Although tensions between management and direct care staff are common in residential programming, we now find that with a strong Deaf presence in management, the Deaf/hearing issues are not as prominent. Professional Communication Meeting the complex needs of these children 7 days a week, 24 hours a day requires the services of a variety of professionals covering multiple shifts. It is essential that communication between departments and between shifts be fast, clear, and thorough. Treatment programs are generally very dependent on written communication for information sharing and documentation, and Walden School is no exception. We have a system of computerized student logs and incident reports, and use e-mail for staff-to-staff communication. For many Deaf professionals, however, English remains a second language with which they struggle. Thus, the potential for miscommunication or misunderstandings through written communication is higher in our program than it would be among native users of English. Like many treatment programs, Walden School does have shift overlaps and daily community meetings led by unit staff to allow for face-toface review of the day’s events, acknowledge progress, and identify concerns and any necessary restrictions for specific students. Such meetings cannot reach everyone, however, nor can they address all concerns in sufficient detail. Weekly team meetings and individual supervision offer opportunities for direct communication as well, but logs, incident reports, and e-mail will always be the quickest way to reach the most people. Therefore, we often review these formats and systems with attention to ease of use and accuracy. Currently, changes are being made to our incident report form to better enable staff to complete reports and to facilitate quick and accurate understanding for the reader. This will be followed by inservice trainings that offer guidelines for report writing, sample reports, and practice opportunities. Another form of essential written communication is the Walden School policy manual. This includes policies and procedures for working with students on a day-to-day basis and for responding to emergency situations. We recently revised our staff orientation to increase the amount of individual and small group meetings for new staff during their first weeks of em-

254

VREELAND AND TOURNAGEAU

ployment as a way to reinforce and clarify written policies. In addition, we are exploring the possibility of putting all policies on videotape so that staff can access them in ASL. Training Because our priority in hiring is linguistic competence and cultural understanding, we must give careful consideration to staff orientation and training to ensure that they develop the clinical knowledge and skills needed to work effectively with troubled children. Training for newly hired child care staff starts with a comprehensive overview of the needs of children in treatment, family dynamics, and intervention strategies. Because we generally hire staff one at a time, as needs arise, providing formal training can be challenging. One approach that has proved successful for us is to network with treatment facilities for hearing children in our area. Because there are few degree-granting programs in the field of child care and residential treatment, most facilities need to provide extensive training for new residential staff. Walden School staff attend a regional introductory training program made accessible to Deaf professionals via interpreters. Such networking allows for group training and has the added advantage of strengthening our identity as a facility for children in need of treatment who happen to be Deaf. The Deafness is linked to the need for accessibility, not the need for treatment. This identity is essential in helping staff understand the needs of students in Walden School. Another aspect of our training program that reinforces this identity, develops clinical understanding, supports our treatment philosophy, and helps staff acquire practical skills is the relationship we have built with Professional Growth Facilitators, a team of trainers and consultants based in California. This is a group of professionals with years of experience in treatment program direct care and management. Over the past 5 years the same psychologist from this group has come to our program once or twice a year, to provide 3 to 5 days of staff training and consultation. This ongoing affiliation has allowed her to get to know our school in depth and has helped to shape our program while deepening our understanding of residential treatment. Given that the primary area of expertise of most direct care and management staff at Walden School is in an area related to deafness, our affiliation with Professional Growth Facilitators is essential to ensure highquality residential treatment services. Monthly inservices and other staff development offerings at Walden School provide continued training in treatment related issues, as well as points that may be specific to working with Deaf children and working as part of a professional team with a strong Deaf presence. In addition to an understanding of treatment issues and intervention strategies, for example, teachers still need to stay abreast of educational theory and practice relevant to the education of Deaf children. As part of a larger school for Deaf

6.

255

RESIDENTIAL TREATMENT

children, Walden School teachers are able to take advantage of the monthly professional development seminars for teachers at The Learning Center. Deaf professionals, particularly those in supervisory and management positions, need opportunities to explore the professional–social conflicts that arise when working with those who are also members of one’s small social community. As Deaf people move into positions of leadership, they often find themselves supervising friends and acquaintances with whom they have regular contact at gatherings and events outside of work. This creates complications for the supervisory relationship that must be acknowledged and addressed. Deaf management staff at Walden School have at times experienced harsh criticism beyond the typical issues that arise when a peer is promoted. It is not unusual to hear former coworkers accuse a newly promoted supervisor of “changing” or “selling out,” but for the Deaf professional, this distancing carries over to their personal lives. They sometimes report feeling uncomfortable at social gatherings, and experiencing strained friendships as a result of their positions. The Challenge for Deaf Professionals in Management The problems for Deaf supervisors are further compounded by Deaf staff raising issues of trust and personal expectations that are different than those for hearing supervisors. Because of the shared culture and community, Deaf staff may feel more comfortable with and better understood by a Deaf supervisor. They may also, however, expect more from the Deaf supervisor in terms of flexibility and loose boundaries. Case Example Emily, a Deaf Child Care Worker who had worked here for several years, encouraged a close friend who was moving from out of state to apply for a position at Walden School. Although the interview went well, the team that interviewed her had very serious concerns about issues raised by two former employers when references were checked. This team, which consisted of a hearing program administrator, and two supervisors, one hearing, one Deaf, decided not to hire the woman because of the concerns. For the two hearing members of the interview team, the process was completed and they heard nothing more about the applicant or their decision. The Deaf supervisor’s experience, however, was quite different. Several employees, including the applicants’ friend, Emily, questioned him as to the reason for the decision. When he responded that the specifics were confidential, but tried to assure them that it was a team decision based on professional, not personal, factors, they began asking him to advocate for reconsideration. They shared their reasons for supporting this applicant (most based on personal friendships, not professional experience) and asked him to return to the team and ask that she be hired. When he did not

256

VREELAND AND TOURNAGEAU

do so, Emily began telling others that she believed his decision against this applicant had been personal. Although she could provide no evidence of that accusation, it raised concerns in others and became a problem with which the Deaf supervisor had to contend for several weeks after the decision was made. Incidents like the example just discussed often leave Deaf supervisors feeling torn between their loyalty to Walden School and their loyalty to friends and community. If this struggle is not acknowledged and addressed through training, supervision, and support structures, it can impact job effectiveness and make it difficult to obtain and retain Deaf management staff. In addition to attending a 3-day supervisory training program offered through the Trieschman Center of the Child Welfare League of America, Deaf supervisors at Walden School utilize weekly individual supervision, management team meetings, and periodic consultation with the clinical psychologist to process these issues and discuss strategies for dealing with them. On occasion, the consulting psychologist also runs discussion groups with direct care and management staff, where these issues can be discussed. We also run trainings on professional boundaries, and we are currently working on plans for an ongoing discussion group for Deaf professionals in management positions. INTERPRETING SERVICES The Learning Center employs four full time interpreters to cover professional meetings, school events, and student emergencies, and has a budget line item to cover the cost of additional interpreting when staff interpreters cannot cover all needs. This is another value in housing a treatment program for Deaf children within a school for the Deaf. Even with this resource, however, Walden School finds it difficult to obtain interpreters to meet all our needs. Routine Interpreter Needs At first glance, one might think that Walden School’s interpreting needs would be minimal. With the exception of some overnight positions, we require that all direct care and management staff have at least a second language level of ASL fluency. Therefore, interpreters are not needed for internal meetings. Although it is true that interpreters are not needed for weekly supervision sessions, department meetings, or management team meetings, there are numerous other regularly scheduled meetings that do require interpreting. These include weekly clinical meetings (to enable the psychiatrist to participate fully), family therapy sessions, medical and dental appointments, some monthly inservice trainings (depending on who is presenting), all team meetings involving outside school departments or so-

6.

257

RESIDENTIAL TREATMENT

cial service agencies, referral visits and intake meetings, phone conferences, consultations, and our quarterly festivals for families and friends. Finally, we need interpreters for workshops specific to the needs of our population at that time (i.e., Eating Disorders, Diabetes, Treating Conduct Disordered Youth). In practice, we typically schedule these meetings based on interpreter availability. We obtain dates from the Learning Center Interpreting Coordinator before attempting to schedule an appointment, meeting, or training with outside professionals. Naturally, this makes it difficult to schedule large meetings in a timely manner. However, coordinating meetings to fit the schedules of our staff interpreters provides greater reliability than depending on freelance interpreters, whom we have trouble obtaining even with several weeks’ notice. The difficulty obtaining certified interpreters affects our work beyond potential delays to routine services. Delays in legal proceedings, for example, which are very common because legal interpreting requires highly specialized skills, may then cause delays in obtaining needed mandates for services. It is not unusual for Walden School children and/or their families to have scheduled court appearances, whether civic or criminal. The courts will use the state system to request legally certified interpreters, but they must make the request well in advance of the hearing, and they sometimes do not learn that a request cannot be filled until a few days before the court date. This puts tremendous stress on the individuals and on everyone involved with their treatment. Case Example Luke was an older adolescent with schizophrenia. Even with medication, he suffered periods of paranoia and depression. Although not usually destructive, he did become upset on a one-day home visit, and damaged a neighbor’s property. The neighbor filed charges, and Luke was given a court date. This was quite frightening and disturbing to him, but he was able to use his therapist at Walden School to help him understand what was happening and to prepare himself emotionally to appear in court. The day before the court date, we received a call that no interpreter was available, and that the hearing would be postponed. This scenario was repeated several times. Each time his hearing was postponed and rescheduled, Luke became anxious and paranoid. On one occasion, he needed a brief stay in the hospital. In addition to court hearings, the need for interpreting can cause delays in foster care reviews, investigations of abuse allegations, eligibility determinations for state agency support, and police investigations. Delays in such critical services inevitably put further stress on the children and families we serve.

258

VREELAND AND TOURNAGEAU

Emergency Interpreting Needs As complicated and time consuming as it can be to obtain interpreters to meet all our routine inhouse needs or to enable the social service and legal institutions to do their jobs, the challenge in emergency situations is even greater. Children at Walden School sometimes require short-term psychiatric hospitalization. To make that determination, the child must first be evaluated by someone from a state contracted emergency assessment team. This can be done in the emergency room of the local hospital when immediate removal by ambulance is required, or within the program if the child can be safely contained here while awaiting the evaluator. Either way, an interpreter will be needed. Massachusetts is fortunate to have a Commission for the Deaf and Hard of Hearing with services that provides a 24-hour interpreter referral system. As just noted, however, there are insufficient interpreters available to fill all the requests. It may take many hours to fill an emergency request, and sometimes there is no interpreter available at all. When an emergency psychiatric evaluation is needed, we try first to arrange for a Learning Center interpreter to at least begin the process. These emergencies are considered the highest priority; if necessary, we cancel previously scheduled meetings in order to free the interpreter for the crisis. When a staff interpreter is available, he or she will generally stay with a child and staff until the hospital can obtain an interpreter or as long as possible if no other interpreter can be found. There are instances when no interpreter can be obtained, and therefore the state-required evaluation can not be done. When this happens with a child with whom the evaluation team is already familiar, they may be able to authorize hospitalization on the basis of information supplied by staff regarding the current crisis. In other instances, however, we have had potentially dangerous children returned to our care because an evaluation could not be completed, or held in the emergency room overnight while our staff stayed with them. Either way, these painfully extended mental health contacts with an imperfect system can be very traumatizing experiences for very vulnerable children. Transitions and Aftercare Arranging high-quality services for our students as they leave Walden School is often extremely difficult. Those who arrived with acute needs but who do have the potential to live independently are often able to leave after 1 or 2 years. After graduation from a less restrictive educational program, they seek employment or pursue further education. However, students with chronic mental illness, neurological disorders, or significant developmental delays often remain at Walden School until graduation. In advocating for services for these young adults, we are faced with the limited

6.

RESIDENTIAL TREATMENT

259

resources available for adult services and the absence of legal mandates comparable to those that guarantee young people the right to an education. When the young adult in need of group home care and supported employment or day-activity services is Deaf, placement is further complicated by the absence of sufficient programs designed for Deaf adults. For out-of-state students, Walden School begins to advocate early and persistently with distant school departments, state agencies, families, and guardians to begin the process of locating or developing the needed adult services. In one instance, we arranged for a lead child care worker to travel with a student to his home state for four days. Together, they attended planning meetings and had direct input into the identification and development of after-care services for the student. In spite of such efforts, however, we have felt obligated to allow some out-of-state students to remain with us for several months after completing our program, until appropriate placement was finally available. The situation with in-state students is no different. Adult placements for Deaf persons with psychiatric or developmental disabilities are few and far between. Like the out-of-state students, Walden School students from Massachusetts may find themselves without a program after graduation. Fortunately, the Massachusetts state agencies responsible for serving these young adults have been willing to fund continued placement at Walden School while seeking community employment and living options. Walden School has chosen not to expand its program to provide adult services but we have often been deeply concerned about the continued growth of young men and women who had made significant progress in our program. To address this need, we began meeting with clinical and management staff of a large organization in the Framingham area to discuss a collaborative effort to develop employment and living options for Deaf adults with developmental and psychiatric disabilities. This agency had expertise in both areas, contracts with the state agencies serving both populations, and was very open to developing services for Deaf people. At the time of this writing, details of the collaboration are being worked out, but we have the support of both state agencies and are optimistic that services will soon be in place. CONCLUSION The challenges of serving Deaf children in residential treatment go far beyond the obvious need for staff who are capable of communicating in American Sign Language. The uninformed hearing person may naïvely assume that deaf children with severe emotional and behavioral problems can be served in mainstreamed settings, perhaps with the assistance of an interpreter or signing teacher or aid. In our opinion, it is quite wrong to assume that such nonspecialized settings provide the “least restrictive environment.” To meet the needs of these children, every aspect of program

260

VREELAND AND TOURNAGEAU

management, policy development, and service delivery, from intake to after care, must be specially tailored for them. We have illustrated in this chapter how and why this is done at one such Deaf-centered treatment facility, the Walden School. The ultimate goal of residential treatment is to help children develop the confidence and skills needed to lead safe and satisfying lives, as independently as possible. It is our experience that a full commitment to culturally affirmative programming, as detailed here, gives Deaf children the opportunity to achieve such a goal.

7 Culturally Affirmative Substance Abuse Treatment for Deaf People: Approaches, Materials, and Administrative Considerations Debra Guthmann Consulting Staff, Minnesota Chemical Dependency Program for Deaf and Hard of Hearing Individuals, Minneapolis, MN Director, Pupil Personnel Services, California School for the Deaf, Fremont, CA Katherine A. Sandberg Consulting Staff, Minnesota Chemical Dependency Program for Deaf and Hard of Hearing Individuals, Minneapolis, MN Coordinator, Rice County Family Service Collaborative, Faribault, MN

Deaf and hard-of-hearing people who need treatment for alcohol and other drug problems are often poorly served in ordinary substance abuse treatment programs. Such programs can be made accessible to some degree with interpreters, special materials such as signed videotapes, or adaptive equipment such as closed captioning. Our program, the Minnesota Chemical Dependency Program (MCDP) is one of a handful of nationwide programs that seek to offer something beyond mere accessibility: treatment that is culturally affirmative. The MCDP was founded in 1989.1 It is located in Minneapolis, Minnesota and is affiliated with Fairview University Medical Center. At this writing, 1 The MCDP was founded on the recommendation of a community advisory board to which both authors belonged, after it had been noted that deaf adolescents were not doing as well as hearing peers in the previously existing substance abuse program. Hired as director of the nascent program in January, 1989, Dr. Guthmann faced the impossible task of hiring a staff of forty by March— (continued on next page)

261

262

GUTHMANN AND SANDBERG

we have 15 beds, serving clients ages 16 and older. The authors presently provide training, consultation, and grant administration. We begin our chapter by comparing culturally affirmative treatment with accessible treatment. We then follow Dan, a fictional client, through an MCDP admission, from referral to after-care planning. We use this case to illustrate many aspects of our treatment approach, including the use of specialized treatment materials our team has developed. Next, we present the results of a follow-up study of our clients. Finally, we review some of the administrative and staffing issues that arise in managing programs like the MCDP. ACCESSIBLE VERSUS CULTURALLY AFFIRMATIVE TREATMENT “Accessible” programs provide some degree of accommodation for culturally Deaf clients. The Americans with Disabilities Act mandates accessibility to health care. Even so, strong advocacy from the Deaf community and from professionals is often needed to ensure even minimum accessibility. The ADA does not guarantee culturally affirmative treatment. The degree of accommodation provided in accessible programs is usually quite limited, due to financial constraints or a lack of understanding of the special needs of deaf people. A program might offer sign language interpreters for a few hours a day, perhaps for formal treatment activities. This approach might seem to make the most important parts of treatment available to a Deaf client, but in our experience, informal time when clients can interact with each other freely is one of the most important parts of substance abuse treatment. Recovery requires connecting with other people. In the typical accessible program, a deaf person has no peers. Without peers and isolated by communication barriers, it is difficult for a deaf person to make this connection. Almost every part of treatment, from learning to identify feelings to sharing one’s story, depends on having adequate communication with staff and peers. The following are the major ways in which our program goes beyond accessibility: 1

(continued) ideally all fluent in American Sign Language. Ms. Sandberg joined the program a year later. Out of necessity, we opened with some staff who had strong mental health backgrounds but little signing ability and others with different strengths. We immediately faced financial difficulties because few clients had private insurance. The majority had out-of-state Medicaid and Social Security Disability Insurance (SSDI). After opening with seven patients, we temporarily stopped accepting referrals until we were able to arrange with surrounding states to pay for our services. In the meantime, staff morale suffered as we were forced to lay off employees. Sadly, because deaf staff members were, on average, less experienced than the hearing staff, they suffered more under the layoffs. In 1990, we received a grant from the Center for Substance Abuse Treatment to serve as a model treatment program for deaf and hard-of-hearing people. This grant stabilized the program, enabling it to grow to its present size.

7.

SUBSTANCE ABUSE TREATMENT

263

• Our staff is fluent in American Sign Language and other modes of visual communication, knowledgeable about the impact of hearing loss, and sensitive to Deaf culture. We attempt to use the mode of communication preferred by the client—American Sign Language, Pidgin Signed English, and so on. Most of our clients use American Sign Language primarily. Many are not fluent in English. Clients in accessible programs must contend with unmodified English, which can cause frustration and confusion. We try to eliminate English as a barrier. We ensure that the language level of written information is appropriate. We reinforce written materials with signed explanations. We use highly accessible videotapes that include sign language, captions, and voicing. • We attempt to provide our clients with understandable explanations of recovery concepts and terminology, often through stories and examples rather than in abstract language. For a variety of reasons, our clients often lack information that might be familiar to hearing people. We might explain a concept like powerlessness, for example, through actual events from a client’s or a peer’s life rather than as a pure abstraction: “Do you remember when you decided not to drink, and you were going to your family reunion? You ended up at a bar, drunk, and missed the whole thing. That was powerlessness.” • We attempt to hire culturally Deaf staff. When possible we hire staff who are recovering from an addiction themselves. • We adapt our materials and treatment approaches. For example, clients can complete some treatment assignments by drawing rather than writing. This removes the potential linguistic barrier caused by written English, allowing them to focus better on their issues and emotions. Clients’ drawings tend to reveal their internal worlds. Drawings help us gather information and build rapport. They often help to start discussions. We also use role play and videotape projects, which help our clients learn by doing and translate ideas into behaviors. • We create new assessment and treatment tools when needed to match a client’s needs. Even when a deaf person has fluent language, it can be difficult to adapt assessment instruments that were designed for individuals who hear. • We provide interpreters when needed, for example, to interpret medical care provided by hearing staff who do not sign fluently. We also need interpreters because our clients have a wide range of communication skills. Our interpreters can even assist our clients in communicating with each another. • The presence of deaf peers at our program is central to its culturally affirmative nature. Deaf clients can communicate directly with each other and reinforce each other’s learning. We have learned that, even with all the previously mentioned adaptations to treatment, staff must make continual efforts to ensure that clients understand essential recovery

264

GUTHMANN AND SANDBERG

concepts. We frequently ask clients to repeat back explanations, or to provide examples of a concept that we have just taught. We use role play extensively. We give clients further opportunities to demonstrate their comprehension through teaching and giving feedback to their peers. • We are flexible in our programming, seeking to address our clients’ specific needs. We offer a weekly Grief Group and intensive sessions on sexuality, HIV/AIDS, and domestic violence because many clients can benefit from them. But we also create new groups when issues arise, for example respect for cultural diversity. • We recognize that deaf people are not all alike, and pay careful attention to the ways they differ—ethnicity, education, social skill, language fluency, degree of Deaf cultural identity, family history, physical status, and mental health status. • We recognize that our affirmative environment is a safe haven for deaf clients. When planning discharge from the program, we help clients anticipate the kinds of recovery challenges they may face after discharge, and address these challenges with careful preparation and practice activities. Although a culturally affirmative program may seem the obvious choice for many deaf clients, we also face certain problems. Because of the “small town” nature of the Deaf community, some clients have concerns about confidentiality and privacy. They might fear gossip, back-stabbing, or the loss of reputation. Some deaf people, particularly professionals, might be concerned about seeing people they already know, who might be MCDP staff or clients. People whose primary language is not sign language and who do not consider themselves culturally Deaf might prefer an accessible program to a culturally affirmative one. Finally, the transition back to the reality of recovery in a “hearing world” might be more difficult from the relative safety of a culturally affirmative environment. WHOM DO WE SERVE? Since we opened, 76% of our clients have been male; 86% have been deaf and 14% hard of hearing; 74% have been White, with the remainder being Black, Hispanic, and Native American. Our clients’ ages have ranged from 14 to over 70 years old, with most clients being in their mid-20s to mid-30s. Alcohol has been the primary drug of abuse (52%), followed by cocaine (19%), marijuana (15%), and crack cocaine (9%). Our admissions have been funded by Medicare (43%), Medicaid or state funding (28%), and private insurance (19%). Approximately 70% of our clients successfully completed our course of treatment. A significant percentage of our clients have had additional mental health diagnoses, although we do not have exact figures. Our average length of stay is 25 to 30 days. Length of stay is strongly affected by funding and has decreased over time.

7.

SUBSTANCE ABUSE TREATMENT

265

THE MCDP TREATMENT PROGRAM Dan is a fictional client whom we follow through a typical MCDP admission, illustrating our clients’ s typical problems and behaviors, and showing how our treatment program works. Referral and Initial Assessment Dan is a 29-year-old single deaf male, referred for treatment from a neighboring state by his vocational rehabilitation counselor, a hearing woman who is fluent in American Sign Language. She is one of about 200 counselors who have been trained in the use of our Assessment Screening Tool, which she completes with Dan.

The purpose of initial assessment is to evaluate needs and strengths, and to develop a treatment plan (Center for Substance Abuse Treatment, 1995). Assessors or programs unfamiliar with the needs of deaf people often use assessment tools that have not been designed for deaf people. They may ask inappropriate questions, fail to gather pertinent data, or use inappropriate means of communication (such as writing with a client who is more fluent in sign). Because of the lack of applicable tools, specialized programs like ours often must create our own. Like screening tools for hearing clients, our Assessment Screening Tool evaluates the impact of alcohol and other drugs on school performance, employment, family, social, physical, legal, spiritual, and financial well-being. It also incorporates communication, family, and cultural information specific to deafness. (The Assessment Screening Tool can be found in Appendix II of this chapter and the accompanying compact disc. Although it is best used following a training session, readers familiar with chemical dependency screening should be able to make good use of it, and may do so with acknowledgment.) The Assessment Screening Tool is designed to be completed in a faceto-face interview with an evaluator who is knowledgeable about substance abuse and able to communicate fluently with the client. Many communities do not have substance abuse evaluators who are fluent in ASL. Interpreters often lack the expertise with substance abuse vocabulary and concepts. Even if an interpreter is fully qualified, the addition of a third party to the evaluation interview alters the dynamics of the interview, and can affect its validity. The evaluator should be familiar with the tool to the extent that she does not have to refer to it continuously during the interview, and can maintain eye contact with the client, respecting this aspect of Deaf culture. She must refrain from exhibiting any judgement of the client’s activities or behavior, even through body language or facial expression, to encourage the client to be open and honest about his use. She must be sufficiently knowledgeable to explain jargon and concepts when needed, and skilled enough with com-

266

GUTHMANN AND SANDBERG

munication to make sure they have been understood. For example, one question concerns tolerance, the physiological phenomenon in which a user needs an increasing amount of a mood altering chemical over time to produce the same effects. The development of tolerance is a significant diagnostic feature of chemical dependency. In assessing a deaf client, the interviewer may need to explain the phenomenon in addition to or instead of simply using the word. Few clients will ask for an explanation or clarification of terminology that they have not understood. From our point of view, the ideal screening is performed by one of our staff or by someone whom we have instructed. Our program provides some outpatient screening and some outreach services, mostly within Minnesota. Dan’s initial assessment reveals the following: Dan prefers to communicate in American Sign Language (ASL). He uses written English at times for basic communication with hearing people. Dan began using alcohol and marijuana recreationally in his freshman year in high school. By his senior year, he was using alcohol and marijuana heavily on weekends and smoking marijuana several times a week at school. Dan’s friends were impressed by the amount of alcohol he could consume. Dan graduated from a residential school for the deaf at 19. He has continued to use alcohol and marijuana ever since, and has also experimented with LSD, barbiturates, and amphetamines. Not long before he was referred, Dan began to use crack cocaine whenever he could afford it. Dan has attempted to quit drinking several times, but has not been able to maintain any significant length of sobriety. After high school, Dan attempted postsecondary education, first at a community college and then at a vocational program, but he did not complete either program. He then held a number of entry-level jobs, but none lasted more than a few months. Dan subsists on Social Security Insurance (SSI). He lives for short periods of time with different friends and is paid under the table for odd jobs. Dan is the only deaf member of his family of origin. When he was 22, his brother died in a car accident. Dan tends to make contact with his remaining family members, his parents and two sisters, only when he gets in trouble. They have bailed him out of a number of difficult situations, including arrests, related to his substance abuse. Dan’s current friends are mostly hearing. Many are drug users. Dan has begun to have some health problems. He has chronic stomach discomfort and gets sick easily. He has developed an unhealthy appearance. He noticed recently that it takes less alcohol than it once did for him to become intoxicated. He has experienced hangovers and black outs. He also has started becoming agitated and unsteady when intoxicated. He has suffered some injuries from fights or accidents while under the influence. Dan had a serious relationship for 2 years, which ended when his girlfriend felt he was more interested in being high than in being with her.

7.

SUBSTANCE ABUSE TREATMENT

267

When he has money, Dan is preoccupied with when and where he will be able to purchase crack. He has often been unable to fulfill obligations of work, family, and social situations because of his use. Dan describes himself as a Christian, but has not been formally involved with religion for many years. Two years ago, Dan attended an accessible substance abuse treatment program. His assessment there was performed by a nonsigning, hearing evaluator, using a combination of writing and lip reading. In that assessment, Dan minimized his use. The evaluator became flustered with the communication problem. The true seriousness of Dan’s substance abuse problem did not emerge in that interview. In that program, Dan was provided with some interpreter services, but he did not complete the course of treatment there. He didn’t think he had a substance abuse problem. He did not understand the Alcoholics Anonymous language used in the program and did not feel close to the hearing substance abusers whom he met there.

Treatment Phase 1: Evaluation The evaluation phase of treatment at the MCDP consists of admissions assessments, medical evaluation, detoxification if necessary, and further substance abuse assessment. This phase typically lasts 5 to 7 days. (Note: we provide complete medical care and health education for our clients. Most clients receive health information pertinent to their chemical use as well as information about HIV/AIDS and other sexually transmitted infections. Those who need it are educated about other conditions such as diabetes or other medical conditions.) Based on the results of his screening, Dan is accepted into the MCDP and arrangements are made for his transportation to Minneapolis. On arrival, Dan has a physical exam (with an interpreter, because the physician does not sign) and completes a health history. Dan is found to be in mild alcohol withdrawal, for which he is provided appropriate medication. He has scars and other evidence of fights and falls. He also appears to have neglected routine medical and dental care for several years. Laboratory testing reveals liver damage, likely related to his alcohol use. Next, Dan meets with one of the counselors. He completes a chemical-use history, social history, and Grief Assessment. It is apparent that Dan has been using a variety of mood-altering chemicals for several years. Although he had earlier denied any family history of chemical dependency or mental health problems, he now identifies a paternal grandfather who had problems with drinking.

The first step in meeting the communication needs of deaf clients is to assess communication strengths, deficits, and preferences. Such an assessment must consider elements of socialization, education, language, and culture. Most formal communication assessment tools used with both hearing and deaf adults were originally designed to assess hearing children

268

GUTHMANN AND SANDBERG

with language problems (Leonard, Prutting, Perozzi, & Berkley, 1978), and are of limited value for assessing adults’ language skills and functional ability (Moeller, 1988). There is no widely used communication assessment, checklist, or observational procedure designed specifically to determine the communication preferences and performance of deaf adults. For this purpose, the MCDP has developed a Communication Assessment (see Appendix I of this chapter, and the compact disc). Dan meets with a communication specialist who is a native signer trained in using the Communication Assessment. (If a communication specialist is not available, other fluently signing staff members who have had the necessary training can perform the assessment.) The assessment confirms Dan’s use of ASL as his preferred mode of communication. Dan is found to be fluent in ASL, both receptively and expressively. We learn that he works and socializes mostly with hearing people. He has considerable experience using interpreters when provided for him, but does not know how to arrange having one himself. Dan has access to a friend’s TTY. He uses no signaling devices at home, although he cannot hear the doorbell. He does not have a hearing dog. He does not use hearing aids or other assistive listening devices. (See Appendix I of this chapter for additional details of Dan’s communication assessment.) On the evening of admission, Dan attends his first group. He introduces himself to the other clients. He explains that he has come to treatment to get help for his problem with alcohol and crack cocaine. He acknowledges his history of fighting and legal problems. He communicates well with the other members of the group. After group, he begins watching a videotape that explains our program’s rules. The following day he watches an educational tape about chemical dependency. Both videotapes present information in his preferred mode of communication, American Sign Language. Next, Dan is given a Drug Chart assignment.

Clients use the Drug Chart to detail all the drugs they have used, describe their most recent use before admission, and examine the consequences of their use in major life areas (physical health, legal, family, social, work, school, and financial). This assignment is designed to help clients gain an understanding of their use of mood-altering chemicals, and can help to break through the denial by explicitly making the connection between substance use and life problems. Like other clients, Dan is asked to complete his Drug Chart with drawings. He draws seven pictures, one for each major life area, which reveal how his drug use has affected nearly every area of his life. He recognizes that besides the times he has been in trouble with the law, there were many other times when he was not caught or charged. Dan’s pictures give staff and other patients the opportunity to learn more about Dan and his life and to give him some feedback about his work. Dan’s drawings are expressive. They include facial expressions and words that show how he felt about each event. (A copy of the Drug Chart assignment can be found in Appendix III and the compact disc.)

7.

SUBSTANCE ABUSE TREATMENT

269

As part of the evaluation phase, Dan participates in a Grief Assessment. Like many addicts, Dan has grief issues that have gone unresolved while he has been using mood-altering chemicals. The assessment reveals the following losses in Dan’s life: the death of his brother, the loss of jobs, loss of friends, and the loss of a significant relationship. In recovery, Dan also faces the loss of mood-altering chemicals and the realities of life as a deaf person. In recovery, unidentified and untreated grief issues can be a trigger for relapse. It is crucial to begin to address Dan’s losses as a part of his treatment.

Most clients move to Phase II after completing the Drug Chart assignment and presentation. On occasion, a client is asked to complete some additional work related to the consequences of her drug use, extending Phase I a little longer. Phase II: Primary Treatment In Phase II, or primary treatment, MCDP clients learn about the 12 Steps and complete step work assignments. Most clients complete Steps 1 through 3 while in primary treatment. Some may go as far as Steps 4 and 5. Regardless of the number of step assignments they complete, our emphasis is on helping clients thoroughly understand and integrate the concepts into their recovery. Step work assignments are modified to meet the needs of the individual client. Like the Drug Chart assignment, clients present their completed Step work assignments in therapeutic groups to staff and peers. Most present their work in American Sign Language. Task rationales for step assignments help to identify the objectives of each assignment and whether the client has met that objective. A typical task rationale for an assignment would be as follows: Task: Draw a picture of people who can help you stay sober. Rationale: Client recognizes sources of support for ongoing sobriety. The goal of Step 1 is to help individuals identify and understand the concepts of powerlessness and unmanageability in their lives, and to identify feelings associated with those experiences. Giving examples of how their use of alcohol or other drugs has hurt others as well as themselves helps to personalize the powerlessness and unmanageability of their own addiction. In an accessible program, 12 Step materials and concepts are presented in “straight” English. Staff might be unaware that the deaf client is missing information due to the language barrier or lack of particular knowledge. At the MCDP we carefully modify materials and check to make sure that our clients are understanding concepts as we go along. Dan is given a standard Step 1 assignment. He is asked to draw: • Seven examples of how your life has been unmanageable,

270

GUTHMANN AND SANDBERG

• Seven examples of how you have been powerless over alcohol and other drugs, and one picture of how being powerless feels, • Five examples of how you have hurt other people with your substance use, • Examples of how you have hurt yourself with your substance use. Dan completes the first seven pictures, but uses the same examples as in his Drug Chart work. He is asked to add new examples. He struggles with the concept of powerlessness. After several individual meetings with counselors, he produces some drawings that indicate an improved understanding. Dan draws about how he has hurt himself and others with his use, but he presents this material to a group with “junkie pride,” laughing about incidents in which he hurt himself and others. Based on this presentation, counseling staff recommend that Dan do some additional work on Step 1. We hope he can set aside his defenses and become more honest about his experience of powerlessness, taking the negative aspects of his using seriously. Dan’s improved Step 1 pictures showing “powerlessness” and “unmanage” [sic], adapted by Michael Krajnak, are reproduced here (see Fig. 7.1 and 7.2). Next, Dan is given an assignment called a Grief Time Line, which asks him to identify grief/loss experience throughout his life. In Grief Group, he is given the opportunity to explore those issues, and taught to deal with grief without using alcohol or other drugs. An explanation of the Grief Time Line and Dan’s drawing of his own Grief Time Line are reproduced in Fig. 7.3 and Fig. 7.4.

Step 2 (and all subsequent) assignments are more individualized for each client. The counselor meets individually with the client to provide preparation for the step work that will follow. Again, clients present their completed assignments to the group. The goal of the Step 2 assignment is to allow clients to develop a sense of hope for recovery and healthier living and an acknowledgment of the help available to them. For his Step 2 assignment, Dan is asked to complete the following tasks: • Begin a daily Feelings Journal and meet with a counselor in a one-on-one session each day,

FIG. 7.1

7.

SUBSTANCE ABUSE TREATMENT

271

FIG. 7.2

FIG. 7.3

• Draw people and places you need to avoid to stay sober; draw people/places that can help support you recovery; identify five reasons you want to stay sober, • Draw a time in the past when you got help and how it felt to get help; name skills that might help you stay sober, • Tell eight things you like about yourself.

The Feelings Journal requires daily writing or drawing about one’s own feelings. Entries are reviewed daily in individual sessions with a counselor. Many clients continue their Feelings Journal after discharge and are able to

272

GUTHMANN AND SANDBERG

FIG. 7.4

use this format after treatment as a way of expressing and processing feelings, which is particularly helpful if they have no one to talk with. Dan works on his assignments, and begins to show signs of recognizing the extent of his problems. He shows some hope that his life could be better. Dan has a difficult time initially with the Feelings Journal. He is not used to thinking about what he feels. Staff members assist Dan by providing one-to-one time and basic information about how emotions work. Dan begins to show the ability to recognize what he is feeling and to express it in drawings and words. He begins to look forward to the daily sessions to discuss his feelings. Dan also has some difficulty in finding things he likes about himself. He is encouraged to ask his peers what they like about him and to spend time looking at positive things about his life. Eventually, he completes the list. When he presents this work in group, he shows much more sincerity than he had in his Step 1 presentation. He gets positive feedback from peers and staff. (Dan’s Step 2 assignment can be found in Appendix III and the compact disc.)

In Step 3, the emphasis is on action—what the client can and will do to support ongoing sobriety. In this step, clients are also asked to begin developing their understanding of a Higher Power. We often use the Serenity Prayer as part of the assigned work of Step 3. We close each therapeutic

7.

SUBSTANCE ABUSE TREATMENT

273

group session with it. We encourage clients to use it as a tool for coping with everyday stresses of living as well as with maintaining sobriety. Dan’s Step 3, developed by the counseling team with Dan’s input, includes the following tasks: • Draw a picture of your Higher Power, • Explain how you communicate with your Higher Power. • Give examples of what these phrases of the Serenity Prayer mean to you: “things I can’t change,” “things I can change,” • List ways you have changed in treatment, • Tell what things you will do to support your sobriety during the first week after treatment, • List five goals you have as a sober person, • Draw a picture of yourself after 1 year of sobriety. Dan completes his assignment and presents his work. Dan continues to show improvement in his attitude and behavior. He practices new behaviors in treatment and focuses on himself but is supportive of his peers as well. (Dan’s Step 3 assignment can be found in Appendix III).

After completing Step 3, some clients proceed to Steps 4 and 5. Several factors help us decide when this is appropriate. One is the amount of time the client has remaining before discharge. It is appropriate to allow at least 5 days to complete Step 4 (“a searching and fearless moral inventory”) and Step 5 (presenting the work of Step 4 to another person, typically a chaplain, priest, or minister). The major factor in making a decision is the client’s ability, willingness, and readiness to do the work. For clients who are emotionally fragile or who have mental health issues, it might be better to postpone it for after care. For clients who do not do Steps 4 and 5, options for remaining time in treatment include a review of the steps already completed, self-esteem work, additional-feelings work, relapse-prevention work, and after-care planning work. The team feels that Dan does not have enough time to complete Steps 4 and 5. Also, he is reluctant to do so. We decide to focus on after-care planning and self-esteem work instead. Dan is given the following assignment: • Make a calendar for your first week after treatment showing how you will spend your time and what recovery-related activities you will do, • Make an initial appointment with your vocational rehabilitation counselor, • Gather information and make a list of interpreted 12 Step meetings in your home area, • Make a list of five short-term (1 month) goals and a list of five long-term goals,

274

GUTHMANN AND SANDBERG

• Make a booklet of the things you learned in treatment that can help you in your recovery.

In addition to Step work and counseling (group and individual), MCDP clients are educated and supported through lectures, educational programs, and other activities. Although chemical dependency is the primary area of concern, related problem areas, such as ineffective coping skills and grief/loss issues, also receive attention in programming. Beginning in Phase I and continuing throughout treatment, MCDP clients are involved with the other clients in 12 Step meetings as well as education about Alcoholics Anonymous, Narcotics Anonymous, and other 12 Step groups. A family-week experience is provided for clients and their families as appropriate and whenever possible. Often, family members are not fluent in sign language. Through the use of our interpreters they can explore a variety of issues, sometimes for the first time. Dan’s family members cannot take the time off work to attend family week. However, they are relieved that he is in treatment again at last. We mail them information about family issues in substance abuse, and encourage them to begin to attend Alanon meetings.

Relapse Prevention Dan begins working on our workbook, Staying Sober: Relapse Prevention Guide, with the help of counselor. He will take the workbook with him at discharge. When clients leave treatment, they need a strong after-care plan that includes relapse-prevention activities. Most clients begin the Staying Sober workbook while at the MCDP. We often add to it or modify it as needed. (This workbook is available for purchase through the MCDP.) Part I of the Staying Sober concerns the process of relapse. It includes a list of the warning signs described by common AA sayings such as “Stinkin’ thinkin’.” Exercises give the client the opportunity to write or draw about times he has experienced warning signs prior to relapsing. Part I also discusses disappointments, feeling, urges, and thankfulness. In exercises from Part I of the workbook, Dan is able to describe the experience of a “treatment high” through a combination of writing and drawing. He realized that during treatment he sometimes felt very good about himself and imagined that his problems were under control. Although he did not complete his previous treatment, Dan remembers having had the same feelings then. However, he also remembers that after treatment, he was disappointed when the positive feelings did not last. He became discouraged, and he eventually relapsed.

7.

SUBSTANCE ABUSE TREATMENT

275

Example Task from Part I of Staying Sober: TREATMENT HIGH means feeling very good when I leave treatment. Many times people leave treatment feeling very good. This is called a treatment high. People are excited about being sober and new behaviors. We want to help other deaf people. We want to save the world. Later, this feeling may go away. Regular life can make sobriety very hard. Sometimes, after treatment, being sober doesn’t feel good. Sometimes, we feel sad, lonely, disappointed, depressed, scared, or angry. NOW IT’S YOUR TURN! Draw or write about how it feels to be sober. Tell about now and before. Tell about positive and negative feelings. Negative Positive

Part II of the workbook concerns healthy and unhealthy ways of dealing with feelings while in recovery, including resentment, anger, hurt, loneliness, grief, shame, jealousy, and feeling good, which can be as hard to tolerate as negative feelings. The client learns to identify feelings that could trigger a relapse. Working on Part II of the Relapse Prevention Tasks, Dan talks about how often he felt lonely and left out when he was growing up because of his deafness. He continues to feel left out of his family because his family members do not sign. For example, he often misses news of important events in the family. Dan begins to wonder how to satisfy some of his needs for closeness through sober people at AA. Although there are limited numbers of deaf people in his local AA, there are some, and the interpreter often helps him to talk with hearing people there.

Example from Part II of Staying Sober: LONELINESS means feeling like you are by yourself. Being lonely means feeling left out. Being lonely means being isolated. Being lonely means being alone and unhappy about it. Sometimes recovering people feel alone with their problems. We think no one understands how we feel. We forget to talk to other people. We forget to ask for help. We begin to stay away from other people.

276

GUTHMANN AND SANDBERG

NOW IT’S YOUR TURN! Draw about times you felt lonely. Show what you did. Name people who can help you when you feel lonely.

Part III of the workbook focuses on clients’ beliefs about themselves. The workbook explains how we develop feelings and beliefs about ourselves over the course of our lives. The exercises assist clients in examining triggers for negative thinking, and how negative behavior follows negative thinking. Clients then work with positive thinking in a similar manner. Dan struggles with the idea that his beliefs affect his behavior. Slowly, through work with his counselor, he sees how failing in postsecondary education had led him to feel that he was stupid, and caused him to give up hope that his life could be successful. This made it easy for him to justify substance use. Dan sees that he does have some strengths—his ability to work with his hands, creativity, artistic talent, friendliness, and an ability to help others.

Example from Part III of Staying Sober: Negative beliefs and behaviors can be a sign of relapse. Look at the sentences and then add your own. I think I am a bad person—————so I break the law. I feel jealous of my brother——-so I steal his shirt. I’m afraid to meet new people—-so I stay home and drink. Now add your examples: I ______________________ so I ________________________.

Part IV concerns having fun as a sober person. Clients are invited to recall instances of sober fun and to identify some new activities they would like to try by examining their skills and interests. This section considers boredom as a trigger for relapse, and helps clients identify for themselves when boredom is likely to set in.

7.

277

SUBSTANCE ABUSE TREATMENT

Dan makes a list of things he enjoys in his free time: hunting, fishing, watching sports on TV, woodworking, and visiting a local Deaf club. The counselor encourages Dan to think about ways he can get support to participate in those activities after discharge. Dan talks about asking a sponsor or sober friends to accompany him to the Deaf club, or on fishing and hunting trips. Dan seems to realize the importance of not doing those activities alone while he is newly recovering.

Example from Part IV of Staying Sober: Being bored can be a dangerous time. When we are bored, we begin to think about our favorite using times. We know those memories can be from a long time ago. Those memories can be very powerful. It is important to think of things we enjoy doing sober. It is important to have ideas about what to do before we become bored. NOW IT’S YOUR TURN! Draw or write about things you like to do in your free time. Tell about skills you have.

Part V of Staying Sober covers the importance of establishing and maintaining good health as a part of recovery. It examines the AA concept of H.A.L.T. (Hungry, Angry, Lonely, Tired), a mnemonic for factors that commonly predispose to relapse. It encourages self-care, including examination of eating and sleeping patterns, and invites clients to set goals for changes they would like to make in their self-care routines.

Example from Part V of Staying Sober: Chemicals in some foods can change our moods. Caffeine is a chemical in coffee, chocolate, tea, and pop. Nicotine is a chemical in tobacco. Sugar is in many foods we eat. Caffeine, nicotine, and sugar can change how we feel. It is important to know how much of these chemicals we use. It is important to know how they affect us. Write about how much of these chemical you take when you are using and when you are sober. USING Caffeine Nicotine Sugar

SOBER

278

GUTHMANN AND SANDBERG

Part VI, the final section of Staying Sober, helps clients develop a personal relapse prevention plan, summarizing personal warning signs and identifying sources of support for when these signs emerge. This section includes a Relapse Prevention Contract Form, with which clients establish a contract with someone they trust, asking for feedback about relapse warning signs. (An example of a Relapse Prevention Contract is included in Appendix 3.) Dan develops a relapse prevention plan and meets with his program sponsor to explain it. This temporary sponsor will help Dan locate a sponsor in his home area, who can sign the contract, meet with Dan regularly, and watch for Dan’s warning signs.

Our clients usually find a temporary sponsor while here. Those who live in the area might keep that sponsor after discharge. Those who live farther away usually need to find a new sponsor. Although most of our clients did not regularly attend 12 Step meetings prior to treatment, most have had some exposure to 12 Step meetings, and some already have a sponsor they can return to. AFTERCARE Although MCDP clients have had treatment in a culturally affirmative program, they must usually depend in part or entirely on nonspecialized services to support their recovery after discharge. After-care services usually include attendance at 12 Step meetings or some other kind of peer support, counseling (in relapse prevention and other areas, according to individual needs), and maintaining a safe, sober living environment. Clients leaving treatment must be prepared for possible difficulty obtaining services that they need. We use role play to help clients practice handling situations that can arise when seeking services. Dan participates in a series of role-play exercises. He practices asking someone to be his sponsor, requesting an interpreter for an outpatient counseling visit, and advocating for interpreters at an AA meeting.

A 12 Step program such as Alcoholics Anonymous or Narcotics Anonymous is usually the centerpiece of aftercare. The client attends meetings and seeks a sponsor for support between meetings. Before discharge, we educate our clients carefully about the nature of 12 Step programs so that they can make good use of them. Finding a sponsor is often a difficult problem—the available community of recovering deaf people is small. We help clients to develop strategies to work with a hearing sponsor if necessary. Another approach is “mentoring,” in which members of the Deaf community who do not have substance abuse problems are trained to provide support to those

7.

SUBSTANCE ABUSE TREATMENT

279

who do (Lybarger & Sandberg, 2000). The MCDP is developing a curriculum for this training, and uses the approach informally at present. To help our clients transition to nonspecialized services, we recommend that they become familiar with the Americans With Disabilities Act, as well as their local advocacy agencies, interpreter referral services, state and local government drug and alcohol agencies, and deaf service organizations. We also encourage our clients to (a) attend general AA service meetings, and take the role of Group Service, Representative, as a way of becoming active in the structure of AA, (b) organize a sober night at their local Deaf club(s), and (c) see an outpatient counselor, with whom they can address the issue of access, and role play advocating for themselves. TREATMENT OUTCOME RESEARCH Dr. Guthmann, (Guthmann & Blozis, 2001) along with research assistant Dr. Shelley Blozis, conducted a study of 100 clients who had successfully completed treatment at the MCDP. The purpose of the study was to determine whether they maintained sobriety, whether their quality of life was improved after treatment, and which demographic, attitudinal, or other factors might contribute to maintaining sobriety. MCDP staff gathered data by contacting former clients or agencies that worked with them at 1, 3, 6, and 12 month intervals after discharge. The study subjects were from several states, and ranged in age from 17 to 72 years. Most had begun substance use prior to age 10. The subjects were 75% White, 13% African American, 6% Hispanic, and 6% Native American; 77% were men; 39% were under 30 years of age at admission. The median level of education was high school. Attendance at Alcoholics Anonymous meetings and the presence of a supportive environment (family and friends that the subject could talk to about sobriety) were found to correlate with a successful outcome after discharge. Posttreatment employment correlated even more strongly with sobriety. This finding is especially significant because most subjects were unemployed at admission, and were receiving some kind of public assistance. This suggested that working more closely with vocational rehabilitation workers to assist clients in gaining employment on the completion of treatment could enhance the success of program like ours. Several studies of hearing substance abusers have had similar results. One study, at the Camarillo State Hospital Alcoholism Treatment Unit in Ventura County, California, found that successful completion was related to employment history, involvement in psychotherapy, supportive environment, and attendance at Alcoholics Anonymous meetings (Obinali, 1986). Three of these four factors were duplicated in the MCDP study. Another study, reported in the Mayo Clinic Health Letter (1995, April), considered the importance of a support system after treatment. Subjects with more emotional and social ties were found to feel better, both emotion-

280

GUTHMANN AND SANDBERG

ally and physically. This research supports the need for recovering individuals to have family and friends to talk with in addition to relying on structured organizations such as 12 Step groups, and once more mirrors the findings of the MCDP study. Comparison of the MCDP study with studies of hearing-subject studies suggests that deaf and hard-of-hearing people do not have any greater or less difficulty in achieving sobriety when provided accessible treatment. Furthermore, deaf and hearing clients have similar after-care needs. Unfortunately, deaf people may have more difficulty finding the environmental support that they need. STAFFING A CULTURALLY AFFIRMATIVE SUBSTANCE ABUSE PROGRAM The distinguishing feature of a culturally affirmative treatment program is full communication access to every component of treatment. This requires that staff be trained and experienced in the areas of deafness and substance abuse. Furthermore, a large percentage of our clients have co-existing mental health needs. There is a national shortage of qualified deaf staff in the area of substance abuse. We have found that hiring individuals with backgrounds in mental health work with deaf people, whom we then provide with intensive substance abuse training, is sometimes necessary. For these staff, the availability of training, clinical supervision, and peer support are essential. It is essential that staff have clear boundaries with clients and take care of their personal needs outside of work. The overlapping personal and professional roles that result when clients and providers come from the same, small Deaf community complicates staffing issues. Good clinical supervision and the opportunity for support within and outside of the work environment are necessary components of any chemical dependency or mental health setting. The hiring process requires special care. A comprehensive interview process that involves several qualified candidates is an important safeguard against perceptions of unfairness or discrimination. Job interviews should be structured using practical questions and scenarios to help determine the applicant’s ability to respond to clinical situations. Because of the small town quality of the Deaf community, a person responsible for hiring may have to contend with rumors about an applicant that are difficult to verify. The applicant’s personal history of mental health and/or substance abuse problems is of concern with regard to that person’s ability to work effectively and ethically in the field. It can be difficult to predict whether an applicant’s own experience of recovery from a substance abuse problem will be a positive or negative attribute. Recovering deaf people often feel pressure to give something back to the field because there are so few role models. At times this pressure can be detrimental to the individual. Hiring and staffing concerns tend to be an ongoing issue.

7.

SUBSTANCE ABUSE TREATMENT

281

Some people feel that a deaf person is always the best choice for any position because of communication and cultural factors. Others feel that clinical competence should be the overriding factor. After considerable experience in the field, we view clinical and communication competence as equally important when hiring staff. Often, administrators must choose between hiring individuals who might not be fully qualified and being short-staffed. Ongoing training and supervision are again crucial. Training and clinical supervision can help to build staff skills in a variety of areas to compensate for the lack of fully qualified job candidates. When training and support do not result in staff who are able to provide quality services, remediation or disciplinary action (including termination) must be an option in order to maintain the quality of the program. Too often, our fear of not having a shift covered can keep us from making the most appropriate staffing decisions. Historically, providers of services to deaf persons have dealt with issues that arise between deaf and hearing people. When such issues are present, problems tend to be attributed to the person’s hearing status. All staff need a mechanism to give input into how the program works. It is also important that the local community be involved in the program; this can be fostered through the establishment of an advisory board. DUAL RELATIONSHIPS When Dan arrived on the unit, he met a counselor named Ann, who is also deaf and in recovery. Dan immediately recognized Ann from the vocational program they had both attended after high school. They had also seen each other at parties. Dan approached Ann and started talking about people they knew in common, asking how long she had been sober, and so on.

Herlihy and Corey (1992) defined a dual relationship as one in which a professional assumes two different roles with a client, simultaneously or sequentially. When people recognize that a dual relationship is occurring, they are able to explore potential negative effects and work to avoid them. Staff members must maintain personal boundaries with clients, colleagues, and supervisors in order to practice in an ethical manner. In a program like ours, overlapping roles with coworkers, dual relationships among staff, and changing roles and responsibilities can make for complex situations. The dual relationship issue commonly arises when staff and clients have had a previous relationship—teacher–student, social service provider–client, interpreter–consumer, or personal friends. This dual relationship is even more complex when the staff members on the unit are also in recovery and may have had some shared substance use history, as was the case with Dan and Ann. The recovering counselor finds herself attending the same 12 Step meetings as recovering clients. When recovering professionals are also deaf the chances seeing former clients are increased because of the limited number of accessible meetings.

282

GUTHMANN AND SANDBERG

The potential for harm from a dual relationship arises from the power differential between counselor and client, which remains indefinitely, even after the treatment period has ended (Haas & Malouf, 1989). With the power difference comes the potential for exploitation, which carries over from one relationship to the next. Professionals who “wear many hats” are common in services to deaf people, increasing the level of risk. It is essential that professionals working in substance abuse counseling receive clinical supervision in which they have opportunities to talk about how to handle dual relationship situations. Ann was prepared to handle the situation with Dan. Before he arrived, Ann met with her clinical supervisor to process issues that might come up for her. When Dan arrived, Ann met with him in the presence of another counselor to acknowledge their previous relationship and to set some ground rules for his treatment. Ann explained her responsibilities as a counselor, particularly with regard to confidentiality. She discussed boundaries with Dan and the expectations for each of them during Dan’s treatment stay. She explained that because of their previous relationship she would not be his counselor. She encouraged him to be alert for any problems the situation caused for him, and to discuss those problems with counseling staff right away. Dan seemed to understand these expectations and seemed comfortable with this conversation.

As a recovering Deaf individual, Ann needs to deal with dual relationships at work on a regular basis. She chooses to attend hearing 12 Step meetings with an interpreter, instead of the all-Deaf groups that her clients attend. Occasionally, staff working with this population may find themselves providing services in circumstances that counselors in the hearing community would avoid. Each case of dual relationship should involve a discussion with the supervisor about the nature of the previous relationship, the depth of the relationship, and the predicted involvement with the client in the treatment setting. CONCLUSION Communication access is the greatest barrier to providing appropriate and effective substance abuse treatment services for deaf people. Accessible programs offer varying degrees of services, often determined by financial considerations. Culturally affirmative programs offer treatment services that are both linguistically accessible and sensitive to cultural features of the Deaf community. Specialized materials can help to educate clients about concepts of treatment and recovery and apply these concepts to their daily lives. In a culturally affirmative program, clients are able to relate to and learn from their peers who are also deaf. Staffing such programs is complicated by the complexities of the Deaf community and the overlap of personal and professional boundaries among staff and clients. Preparation

7.

SUBSTANCE ABUSE TREATMENT

283

for life after treatment involves identifying appropriate agencies as well as preparing patients to access services in an environment that is not usually culturally affirmative. The importance of employment after discharge to long-term sobriety was demonstrated in a study conducted at our program. After-care also includes accessing a variety of self-help groups such as Alcoholics Anonymous. Since the 1990s, there have been many positive changes in the awareness of substance abuse as a problem in the Deaf community, and an increase in the number of programs providing specialized services. Deaf people with substance abuse problems deserve the same consideration as hearing people in regard to prevention, intervention, accessible treatment, and adequate after-care. REFERENCES Center for Substance Abuse Treatment (CSAT). (1995). Treatment improvement protocol: The role and current status of patient placement criteria in the treatment of substance use disorders. Rockville, MD: U.S. Department of health and Human Services. Guthmann, D., & Blozis, S. A. (2001). Unique issues faced by deaf individuals entering substance abuse treatment and following discharge. The American Annals of the Deaf, 146(3), 294–303. Haas, L., & Malouf, J. (1989). Keeping up the good work: A practitioners guide to mental health ethics. Sarasota, FL: Professional Resource Exchange. Herlihy, B., & Corey, G. (1992). Dual relationships in counseling. Alexandria, VA: American Association for Counseling and Development. Leonard, L. B., Prutting, C. A., Perozzi, J. A., & Berkley, R. K. (1978, May). Non standardized approaches to the assessment of language behaviors. ASHA, 371–379. Lybarger, R., & Sandberg, K. (2000). Mentorship in sobriety: An Alternative to twelve step support for deaf people. JADARA, 33(2), 42–49. Minnesota Chemical Dependency Program for Deaf and Hard of Hearing Individuals. (1994). Clinical Approaches: A Model for Treating Chemically Dependent Deaf and Hard of Hearing Individuals. Fairview Recovery Services, Minneapolis, MN. Minnesota Chemical Dependency Program for Deaf and Hard of Hearing Individuals (1994). Relapse Prevention Guide. Fairview Recovery Services, Minneapolis, MN. Moeller, M. P. (1988). Combining formal and informal strategies for language assessment of hearing impaired children. Journal of the Academy of Rehabilitative Audiology Monograph Supplement, 21, 73–99. Obinali, M. (1986). Factors which characterized alcoholics who successfully completed a residential treatment program. (Doctoral dissertation, University of Tennessee, 1985). Dissertation Abstracts International, 46, 4024. Social Networks. The company you keep can keep you healthy. (1995, April). Mayo Clinic Health Letter, 13(4), 7.

Appendix I: Communication Assessment

PART I Family Communication Background Date ___ ___ /

/___ 1

3

6

ID: ___ ___ ___ ___ ___ ___ ___ ___ ___ Patient Name: ____________________________ Form Code: 5 7

15

Age: ______________16 Onset of Deafness: _____ years of age _______ 17

18

Explanation of visual or other impairments which may affect communication: ______________________________________________________________ ______________________________________________________________ Cause of Deafness: _________________________________________

284

285

APPENDIX I

Family Communication Background: see code below

=1

Blank = 2

Family Member

Age

Hearing Write Home Status ASL PSE MCE Oral Notes Signs Gestures Other

Father

19 20

21

22

23

24

25

26

27

28

29

Mother

30 31

32

33

34

35

36

37

38

39

40

Sibling 1

41 42

43

44

45

46

47

48

49

50

51

Sibling 2

52 53

54

55

56

57

58

59

60

61

62

Sibling 3

63 64

65

66

67

68

69

70

71

72

73

Comments:

Hearing Status Code: 1 = no hearing loss; 2 = mild loss (20–45); 3 = moderate loss (45–70); 4 = severe loss (70–90); 5 = profound/deaf (90 bd and up); 6 = heard of hearing

286

APPENDIX I

PART II Blanks / Card 2

1 - 17

Client’s Communication with Persons of Various Hearing and Signing Abilities Record the appropriate code for Place and Type Place Code: 1 = No people 2 = A few people 3 = A lot of people

PLACE

Deaf People

Type Code: 1 = Little or none of the time 2 = Some of the time 3 = Most or all of the time Signing Hearing People

Non-Signing Hearing People

School/Work

18

19

20

Sports Clubs

21

22

23

Social Activities

24

25

26

Community

27

28

29

Church

30

31

32

Bars

33

34

35

Deaf Club

36

37

38

Medical

39

40

41

Business

42

43

44

TYPE

Deaf People

Signing Hearing People

Non-Signing Hearing People

Greetings

45

46

47

Directions

48

49

50

Conversations (surface)

51

52

53

Conversations (in-depth)

54

55

56

Questions

57

58

59

287

APPENDIX I

MODE: What is the most common mode of communication that you use when you are with: Deaf people?

60

Mode Code:

Signing hearing people?

61

1 = ASL

Non-signing hearing people?

62

2 = English

3 = Other signs 4 = Gestures 5 = Oral 6 = Speech reading 7 = Finger spelling 8 = Writing 9 = Interpreter

PART III

1 - 17

Client’s use of Interpreters and Adaptive Devices

Blanks CARD 3

Use of Sign Language Interpreters: (1) (2) Have you used an interpreter before?

YES

NO

Do you know the role of an interpreter?

YES

NO

Do you know your role with an interpreter?

YES

NO

Are you comfortable using an interpreter?

YES

NO

Do you know how to get an interpreter?

YES

NO

Comments:

18

19

20

21

22

288

APPENDIX I

Use of Adaptive Devices: (1)

(2)

Do you have or use a TDD/TTY?

YES

NO

Do you have or use a hearing aid?

YES

NO

Do you have or use a TV decoder?

YES

NO

Do you have or use signaling devices?

YES

NO

Do you have or use a telephone amplifier?

YES

NO

Do you have or use a hearing dog?

YES

NO

Do you have or use an assistive listening device? Or system (ALD/ALS)?

YES

NO

Comments:

23

24

25

26

27

28

29

289

APPENDIX I

Part IV

CARD 3 (Cont)

Clients’ Skills in Aspects of Expressive and Receptive Sign Language This is a rating of the various elements of the client’s expressive and receptive sign language skills. Indicate your rating of each of the skill elements using the rating scale below. Rating Scale: 1 = lack of skill 2 = poor level skill 3 = fair level skill 4 = moderate level skill 5 = high level skill 6 = not observed EXPRESSIVE Sign Production Fluency Expresses complete thought Provides details Follows main topic Knows manual alphabet Finger spelling Uses classifiers Yes/No Questions Why Questions Use of space (absent/referent) Incorporation (time/numbers) Free expression Use of voice Facial expression agrees Negative head shake Affirmative head nod

30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 45 46

RECEPTIVE Understanding Fluency Yes/No Questions

47 48 49

290 Why Questions Incorporation (time/numbers) Requests clarification Responds appropriately Directions

APPENDIX II

50 51 52 53 54

Comments:

PART V Assessment Summary Summary of Communication Assessment Interview

Recommendations for Treatment Staff

Appendix II

SUBSTANCE USE ASSESSMENT SCREENING TOOL

Client Name: __________________________________ Date: ______________ Assessor: __________________________________________________________ Referred by: ___________ Agency: _________________ Phone: _____________ Reason for Referral:

Background Information Date of Birth: __________ Age: __________

Gender: M / F

Marital Status: ________ Living Arrangement: _________________________ School Status: _________ Employment Status: __________________________ Family Incidence of alcohol / drug problems?

YES / NO

If yes, identify members:

Other background information:

291

292

APPENDIX II

Treatment History Admissions for Detox: Place: ___________________________________________ Dates: ___________ Place: ___________________________________________ Dates: ___________ Admissions for Treatment: Place: __________________ Inpatient / Outpatient

Dates: ___________

Place: __________________ Inpatient / Outpatient

Dates: ___________

Place: __________________ Inpatient / Outpatient

Dates: ___________

Longest period of sobriety after treatment: ______________________________ Most recent period of sobriety: ________________________________________

Problems Related to Chemical Use Physical Problems: ____ Hangovers

____ Tolerance

____ Withdrawal

____ Blackouts

____ Accidents / injuries

____ Passing out

____ Fights

____ Injecting drugs

____ Medicating pain

____ Unpaid bills

____ Borrowing money

____ Outstanding loans

____ Legal fines

____ Stealing

____ Dealing

____ Lifestyle change

____ Insufficient income

____ Pawning items

Comments:

Financial Problems:

Comments:

293

APPENDIX II

Family Problems: ____ Arguments / fights

____ Abuse

____ Broken promises

____ Absence from home

____ Loss of trust

____ Use by other members

____ Hiding drugs in home

____ Custody issues

____ Arrests

____ Near arrests

____ DWI / DUI

____ Gang involvement

____ Court appearances

____ Parole

____ Restraining order

____ Domestic violence

____ Probation

____ Concerns about use

Comments:

Legal Problems

Comments:

Job / School Problems: ____ Poor performance

____ Lateness

____ Problems with supervisor ____ Fired / suspended ____ Problems with peers

____ Absences ____ Disciplined

____ Using at work / school

Comments:

Social Problems: ____ Loss of friends

____ Change of friends

____ Socialization around use ____ Negative reputation ____ Friends older / younger Comments:

____ Friends use ____ Gambling

294

APPENDIX II

Emotional Problems: ____ Used to feel normal

____ Mood swings

____ Suicidal thoughts / behavior ____ Anger problems

____ Self harm ____ Depression

____ Use to medicate emotional pain Comments:

Chemical Use Information: ____ Unplanned use

____ Binge use

____ Hidden use

____ Using more than planned ____ Solo use

____ Daily use

____ Attempts to control use

____ Relapse

____ Preoccupation

____ Protecting supply

____ Poly drug use

Comments:

Identify chemicals used. For each chemical, identify age of first use and present pattern of use. ____ Alcohol

____ Marijuana

____ Cocaine

____ Crack

____ Inhalants

____ Sedatives

____ Hallucinogens

____ Amphetamines

____ Opiates

____ Others:

____ Others:

____ Others:

Use information:

Diagnostic Features: Please check all that apply. ___ TOLERANCE need for increased amount of substance to achieve intoxication or markedly diminished effect with continued use of the same amount.

APPENDIX III

295

___ WITHDRAWAL characteristic syndrome or same or closely related substance taken to relieve or avoid withdrawal symptoms. ___ SUBSTANCE taken in larger amounts or over longer period than intended. ___ PERSISTENT desire or unsuccessful efforts to cut down or control use. ___ TIME spent in activities necessary to obtain substance or recover from its use. ___ SOCIAL, OCCUPATIONAL, RECREATIONAL activities given up or reduced because of use. ___ CONTINUED use despite knowledge of physical or psychological problems caused or exacerbated by the use.

Interview Findings and Comments:

Appendix III

DRUG CHART SAMPLE STEP ONE SAMPLE ASSIGNMENT STEP TWO SAMPLE ASSIGNMENT STEP THREE SAMPLE ASSIGNMENT SAMPLE BEHAVIOR CONTRACT FAMILY WEEK ASSIGNMENT

296

297

APPENDIX III

DRUG CHART ASSIGNMENT SAMPLE Do all work in the order written. Get staff to sign before doing the next part. Staff Initials / Date

1. Name all drugs you have used.

__________________

2. Tell the last time you used. What? When? How much?

__________________

3. When I am high or drunk, bad things happen. These things are called consequences.

__________________

Draw 7 pictures of body consequences

__________________

Draw 7 pictures of money consequences

__________________

Draw 7 pictures of family consequences

__________________

Draw 7 pictures of legal consequences

__________________

Draw 7 pictures of job/school consequences

__________________

Draw 7 pictures of social consequences

__________________

4. Present your work in a group

__________________

Drug chart is due on: September 18

298

APPENDIX III

STEP ONE ASSIGNMENT SAMPLE Step One tells us: We admitted we were powerless over drugs and alcohol and that our lives had become unmanageable. Do work in the order written. Get staff to sign before doing the next part. Staff Initials / Date

1. Watch ASL videotape on Step One

__________________

2. Draw 10 pictures of unmanageable from drug/alcohol use.

__________________

3. Draw 10 pictures of powerlessness with drugs and alcohol.

__________________

Draw 1 picture of how powerlessness feels.

__________________

4. Draw 8 examples of how my drug/alcohol use has caused problems for other people.

__________________

5. Draw/write examples of how using alcohol/drug has caused problems for me. __________________ 6.

2

1 : 1’s with peers

__________________

7.

2

1 : 1’s with staff

__________________

8. Present Step One work in group.

Step One is due on

September 25

__________________

299

APPENDIX III

STEP TWO ASSIGNMENT SAMPLE Step Two tells us: Came to believe that a Power greater than ourselves could restore us to sanity. Do work in the order written. Get staff to sign before doing the next part. Staff Initials / Date

1. Meet with the Chaplain for Step Two prep

__________________

2. Watch ASL videotape on Step Two

__________________

3. Draw 10 pictures of time people helped you

__________________

4. Tell 15 ways you are similar to your peers in treatment

__________________

5. Draw 10 places you can go to get support in recovery

__________________

6. List 10 people who can help you stay sober

__________________

7. Tell 15 things you like about yourself

__________________

8.

2

1 : 1’s with peers

__________________

9.

2

1 : 1’s with staff

__________________

Present Step Two in group

Step Two is due on

October 3

__________________

300

APPENDIX III

STEP THREE ASSIGNMENT SAMPLE Step Three tells us: Made a decision to turn our will and our lives over to the care of God as we understood Him. Do work in the order written. Get staff to sign before doing the next task. Staff Initials / Date

1. Meet with Chaplain for Step Three prep

__________________

2. Watch ASL videotape on Step Three

__________________

3. Draw or write about who is your Higher Power

__________________

4. Tell how you communicate with your Higher Power

__________________

5. From the Serenity Prayer draw or write about things I cannot change and things I can change

__________________

6. Tell 10 things you are willing to give up for your sobriety

__________________

7. Why is trust important in your recovery?

__________________

8. If you choose to trust people in recovery, how can it help you?

__________________

9.

2

1 : 1’s with peers

__________________

10.

2

1 : 1’s with staff

__________________

Present Step Three in group

Step Three is due on

__________________

October 10

301

APPENDIX III

BEHAVIOR CONTRACT SAMPLE Your behavior has become a concern on the unit. The purpose of this contract is to help you change your behavior. If you have any questions about this contract, please ask a staff member. Specific Behavior Concerns: 1. Not completing work on time. Drug Chart and Step One assignments were both late. 2. Not asking for an extension on assignments. 3. Late for groups.

Expected Changes: 1. Complete all assignments on time. 2. If you need extra time to complete your work, ask staff for an extension before your work is due. 3. Come to all groups on time.

Client signature _____________________________________ Staff signature _____________________________________ Date __________

302

APPENDIX III

FAMILY WEEK ASSIGNMENT

Please complete this assignment before Family Week starts. Bring your work with you to all family groups. What secrets related to using alcohol and drugs do you need to tell your family?

What behaviors do you use with your family to get what you want. Be specific.

What feelings do you have about your deafness that you have not talked about with your family?

What feelings about your deafness do you cover up by using alcohol or other drugs?

APPENDIX III

303

8 Toward Culturally Affirmative Assessment and Treatment of Deaf People With Sexual Offending Behaviors Susan Lemere Staffier & Associates, Inc., Westborough, MA With Skill Cards by Michael Krajnak

There are few topics as inflammatory and controversial as sexual offending. A clinician who must work with a sex offender may be troubled by many questions, both personal and professional: Is a sex offender sick, bad, or both? Can a sex offender change? If so, how can we know if the change is real? Is it better that he be locked up indefinitely, just in case? Will working with a sex offender endanger me? How do I work with someone if I hate what he’s done? Imagine now that the alleged sex offender is a new deaf client, and that you, the therapist-for-the-deaf, are either deaf yourself or a hearing therapist who specializes in working with deaf people. You see yourself as a member or supporter of the Deaf community. If your client has been labeled a sex offender by hearing professionals who don’t understand Deaf culture, you may wonder if the legal system overreacted or underreacted from ignorance about deaf people. Suppose you disagree with the terms of probation. Maybe they seem too lenient or too strict. Will the probation officer listen to me? What if the terms of probation mandate services that are not communication accessible? Even in a large city, the Deaf community can be like a small town. How will the community see you when people learn that you are working with sex offenders? What if there have been deaf victims? Maybe, as one of a limited number of therapists-for-the-deaf, you have even worked with a victim of this person yourself. What feelings would this evoke? And then there is the question of assessment and treatment planning. What do we know about how to work with deaf sex offenders, anyway? 305

306

LEMERE

We know very little. My own thorough search turned up just one chapter in one book that mentioned deaf sex offenders at all (Marshall et al., 1998). To my knowledge, there have been no empirical studies on the assessment and treatment of deaf sex offenders. The only alternative is to familiarize oneself with two separate bodies of knowledge: knowledge of culturally affirmative treatment of deaf clients, and knowledge of sex-offender assessment and treatment. The synthesis of these two areas is the basis of my approach to assessing and treating of deaf sexual offenders. This chapter describes my own experiences learning and working in this area, and gives some case examples that illustrate the clinical issues involved. MY BACKGROUND When I began my career in mental health, I was not planning to get involved in assessing and treating sexual dangerousness. In fact, during my graduate training, I believed that sex offenders were one population I would never have either the skill or the desire to work with. However, in the course of my work as a social worker with the Mental Health Unit for Deaf Persons at Westborough State Hospital in Massachusetts, I found myself in an unexpected dilemma. Many of our patients had issues of possible sexual dangerousness. We did not seek out these clients, who often met criteria for hospitalization on the basis of dangerousness to others. But as the only inpatient psychiatric treatment program for the deaf in New England, we could not refer them elsewhere. The question was whether we would provide treatment for them ignorantly or competently. In 1998, I was given a daunting assignment with one of our clients, an adjudicated sex offender: to determine when and under what circumstances he should return to community living. He had moved from the criminal justice system to the mental health system when he had begun to show symptoms of Post-Traumatic Stress Disorder (PTSD) and depression as he wrapped up his sentence. I knew how to work with PTSD and depression, but I had no means of approaching the sex-offender assessment apart from my general therapy skills. And I knew that general therapy skills were not going to be sufficient for this task. In the hopes that an expert opinion could guide me, I referred this client for evaluation to a group of specialists. Their report summarized his risks and strengths, concluding that our treatment team was in the best position to know when community re-entry should be attempted. So the ultimate responsibility was handed back to me, and I was again faced with my limitations as a clinician. I decided to start learning about sex-offender therapy myself, hoping that what I learned would help me feel more confident with this particular case. Little did I know that I had just embarked on the first step of a long journey.

8.

TREATMENT OF SEXUAL OFFENDING BEHAVIOR

307

I began with the internet, which led me to a gold mine of information: the Massachusetts Association for the Treatment of Sexual Abusers (MATSA). MATSA is a state chapter of the national organization, the Association for the Treatment of Sexual Abusers (ATSA), an interdisciplinary group of professionals dedicated to the prevention of sexual abuse through the effective treatment and management of sexual offenders. I began to attend MATSA’s bimonthly meetings. There, I met numerous sex-offender specialists who were willing to discuss their work and help me with my patient. They were extraordinarily welcoming, supportive, and generous with their time and talents. I began to understand why some clinicians actually choose to specialize in this; they were working not only to help their clients, but also to increase public safety. I quickly developed great respect for their work. I highly recommend joining ATSA or a similar group to anyone entering this area. I also recommend specialized training. Sexual offending is a multifaceted problem—there are countless areas of knowledge that can help us understand it better. A person beginning in the field should seek training in risk assessment, developmentally appropriate versus deviant sexual behavior, legal and ethical issues in the treatment and management of sexual offending, and various treatment approaches. I benefitted enormously from a 60-hour training program offered by Sinclair Seminars, and have also participated in MATSAand ATSAtraining programs and conferences. Having recommended learning from others, I should add that there are aspects of the work one can only learn from experience. Call this “practice wisdom.” In my case, obtaining experience was not difficult. The increasing emergence of sexual-offending risk issues among patients that I encountered during my daily work on the “Deaf Unit” at Westborough reminded me of the line from the movie Field of Dreams—“If you build it, he will come.” It seemed that we were referred more and more patients with a history or question of sexual dangerousness. There is no quantitative study of Deaf persons with sexual-offending behaviors, but in society at large, the problem is rampant. A 1997 report by the U.S. Dept. of Justice reported that there were 234,000 convicted sex offenders under correctional supervision. This figure does not, of course, include released offenders, offenders who were not held accountable by the legal system, and offenders who eluded the legal system altogether. I became more interested in the issue of sexual offending, and began to take opportunities to work in other settings with sexual offenders, many of them deaf. I participated in and observed sex-offender treatment in outpatient settings and in prisons. These experiences further convinced me of the importance of assessment and treatment, and the importance of making these services available to and appropriate for Deaf persons. I also began to take opportunities to work in other settings with sexual offenders, many of them deaf. Under supervision, I began taking on more and more responsibility for doing the work myself.

308

LEMERE

The next two sections of this chapter address the related areas of sexual-offending risk assessment and sexual-offending treatment. The third section discusses several complicating factors. While sex offender is a specific legal term, I define it broadly for the purposes of this chapter, as anyone whose actual or alleged sexual behaviors have raised serious concern. I include in my definition both “hands-off” offenses, such as voyeurism, flashing, and public masturbation, and “hands-on” offenses, such as child molestation and rape. RISK ASSESSMENT Sexual-offending risk assessment is an evaluation of a person’s sexual behavior that focuses on (a) the presence or absence of a sexual behavior disorder, (b) the risk of the client committing a sexual offense, and (c) the nature and type of treatment or supervision that might be necessary to ensure safety. Risk assessment entails gathering extensive information from a variety of sources about the client’s alleged behaviors, as well as information about the person as whole. It usually includes an interview with the client. It may or may not include the use of other assessment measures, which are discussed in more detail in the following text. Asexual-offending risk assessment gives a snapshot of the person’s individual risk profile as it compares to other people who have shown similar characteristics. An assessment does not make a determination about whether a person has committed a sexual offense. Anyone conducting a sex-offender risk assessment needs to have had significant training and supervision in this area. Sometimes, when the client is deaf, the therapist-for-the-deaf is asked to do a sex-offender evaluation or treatment because there is no other signing clinician in the area. The therapist-for-the-deaf can feel pressured to be all things to all deaf clients. However, it would be a mistake for an untrained person to accept such a case, for practical, ethical, and liability reasons. At minimum, the therapist-for-the-deaf who accepts a deaf sex offender into treatment without having this expertise should be supervised by a specialist. Many therapists raise concerns about a client’s rights. In many states, sexual offending is the only crime for which the perpetrator must provide his name and identifying information to a registry board. In some states, a sex-offense conviction can result in a person’s being incarcerated indefinitely as a sexual predator. Even murderers are not held to this high standard of public condemnation and scrutiny. For this reason, it is necessary for a client undergoing a sex-offender assessment to know what he is getting into, to know the risks and benefits of participating. A possible benefit is that the client will be assessed as not being sexually dangerous and will be afforded more freedom. A possible “risk” from the client’s perspective is that she might be seen as dangerous and face a recommendation for increased supervision.

8.

TREATMENT OF SEXUAL OFFENDING BEHAVIOR

309

The best way to determine if a client is capable of giving informed consent is to explain the risks and benefits in detail, then to ask the client to repeat them back in his own words. This can be challenging but no less important when working with deaf clients, particularly when the evaluator is hearing. Even when a clinician is a fluent signer, communication assistance may be necessary if there is any question whatsoever about a client’s ability to understand the risks and benefits and to give informed consent. Along with risks and benefits, a therapist must explain how the rules and norms for this type of assessment differ from those for most mental health treatments. In particular, the limits of confidentiality are different. In general mental health treatment, the client is afforded maximum confidentiality with few exceptions. In sex-offender assessment and treatment, the client is usually asked to agree to waive confidentiality as it relates to possible sexual dangerousness. The therapist may need to inform any number of people at any time about risk factors that can’t be predicted before the assessment begins. Let us assume that the client has given informed consent. The evaluator’s next step is to gather background information, especially written reports. She will want to know as much as possible about the alleged sexual offense(s) and about the client in general. The best approach is to look at the client from multiple perspectives, the most important of which is the statement of the victim, which is generally found in the police report. The evaluator should be as familiar with the details of this statement as possible, because she will be assessing the degree to which the alleged sex offender’s own version of the story matches others’ reports. Other sources of information include psychological and social history reports, legal history report, and behavior reports from institutional settings such as schools, residential programs, and previous incarcerations. After reviewing background information, the next step is interviewing the client. The evaluator will attempt to get a full sexual and bio-psychosocial history, including his account of the alleged offense(s). During the interview, the evaluator will be assessing for multiple factors simultaneously, including: • the match or conflict between the client’s account of the alleged offense and the official version, • evidence of any mental or physical condition such as psychosis, intoxication, or acute illness, • overall intelligence, • communication skills or deficits, manner of relating to you, • attitudes about sex and/or about the alleged victim, • remorse or callousness, • social skills or social-skill deficits, • knowledge of human sexuality, • knowledge of the law as it relates to sexual offending.

310

LEMERE

All of these will factor into the evaluator’s assessment and recommendations. Perhaps most important, the evaluator will be looking for the presence of specific risk factors that might increase the risk of future sexual offending. These sexual-offending risk factors can be divided into two types, static and dynamic. STATIC AND DYNAMIC SEXUAL-OFFENDING RISK FACTORS For as long as people have been trying to address the complexities of managing and treating sex offenders, there has been concern about recidivism. There is no way to predict with certainty who will commit a future sex offense. However, since the 1990s our knowledge of how to make an educated guess for a given case has improved dramatically. This is in large part due to empirical research that has identified factors that increase risk. In 1998, Canadian researchers Karl Hanson and Monique Bussiere published a meta-analysis of 61 sex-offender recidivism studies, a massive undertaking involving review of the recidivism patterns of more than 23,000 sex offenders (Hanson & Bussiere, 1998). Historical factors that correlate with recidivism are called static risk factors because they do not change. For example, a history of juvenile delinquency is associated with increased recidivism risk, as is a history of sexually victimizing males. Two widely used measures of static risk factors are the Rapid Risk Assessment for Sexual Offense Recidivism, or the RRASOR (Hanson, 1997), and the Static-99 (Hanson & Thornton, 1999). These measures can be used on the basis of a record review alone, and are easy to use and score. The RRASOR measures prior sexual offenses, male victims, unrelated victims, and the perpetrator’s age at the time of the assessment. The Static-99 measures the same items as RRASOR, plus history of nonsexual violence, total sentencing dates, stranger victims, marital status, and history of noncontact sexual offenses. Because static factors are unchangeable, and therefore untreatable, sex-offender therapists are more interested in the second category of risk factors, the dynamic risk factors. Many sex-offender assessment experts believe that recidivism risk can be reduced by identifying dynamic risk factors and making them the targets of treatment intervention. Karl Hanson reported to ATSA in 2000 that the following dynamic factors seem the most potentially treatable: intimacy deficits, negative peer influences, attitudes tolerant of sexual offending, problems with emotional/sexual regulation, and problems with self-regulation in general (i.e., problems controlling impulses and adhering to societal norms). New assessment tools such as the Sex Offender Need Assessment Rating or SONAR (Hanson, 2000) focus on the assessment of dynamic factors. It is hoped that these measures will assist both with monitoring and treating sex offenders.

8.

TREATMENT OF SEXUAL OFFENDING BEHAVIOR

311

ADDITIONAL RISK ASSESSMENT MEASURES Other psychometric tests can be used to measure specific risk factors. For example, the Carich-Anderson Victim Empathy and Remorse Scale, the Interpersonal Reactivity Scale, and the Levison Victim Empathy Scale assess a client’s ability to empathize. The Multidimensional Self-Esteem Inventory can be used to assess self-esteem. In addition to psychometric testing, evaluators are increasingly turning to methods for measuring deviant arousal, which can be defined as arousal to illegal or victimizing sexual activity. One of these methods is called the plethysmograph, a device that measures both male and female sexual arousal. The client attaches an apparatus to the genitalia and is then exposed to a range of sexual stimuli. The plethysmograph measures the degree of arousal to each stimulus. The evaluator can then seek to demonstrate the presence or absence of both deviant and normal arousal patterns. Plethysmography might demonstrate, for example, that a client is aroused by images of children but not by images of age-appropriate partners. Another client might be aroused by themes of force and violence. Repeated over time, plethysmography can be used to measure the effectiveness of treatment interventions. It cannot determine whether a person has acted on his or her arousal. Nor does it provide accurate readings at all times. Its results can only be interpreted by a trained professional, and can never be used alone as a measure of risk or behavior. The Abel Screen uses the client’s reaction time to a sexual stimulus to measure the presence or absence of deviant arousal. This newer instrument may be considered less invasive to the client (Abel et al., 1998). If these measures seem intrusive, consider that in Hanson’s recidivism meta-analysis, deviant arousal to children as measured by the plethysmograph was found to be the strongest predictor of sex-offender recidivism. Furthermore, deviant arousal is sometimes responsive to medication, behavioral conditioning, or a combination of the two. These are compelling reasons why the assessment of deviant arousal might be important. The polygraph, or lie detector test is finding increasing use in the assessment and treatment of sex offenders. It can be used to facilitate full disclosure of sexual-offending behavior or for monitoring a client’s compliance with the conditions of probation or parole. Finally, the Psychopathy Checklist-Revised, or PCL-R (Hare, 1991), is a tool for identifying an important subgroup of offenders: psychopaths, a subgroup of antisocial personality disorder. As defined by Robert Hare, they show deficits in empathy, glibness and superficiality, callousness, and other traits. In research to date, this subgroup shows no improvement after treatment. In fact, there is speculation that standard sex-offender treatment may increase psychopaths’ likelihood of re-offending. Some research has found anatomical brain differences in psychopaths. Many sex-offender specialists consider psychopathy to be a contraindication to sex-offender

312

LEMERE

treatment. If psychopaths are treatable at all, effective treatment methods and protocols have yet to be found. Early identification of psychopathy is important. None of the measures discussed here has been normed on deaf subjects. They can still be used with deaf clients, but measures must be chosen and interpreted by someone who is familiar with Deaf clients, sign language, and culturally affirmative treatment. (See the discussion of the use of psychological tests with deaf clients in chap. 3.) This is true even when using measures that rely exclusively on a review of past records. For example, the Static-99 puts considerable emphasis on a client’s history of convictions. It is the opinion of this author and of several of my colleagues that deaf clients can more easily elude the legal system. This might result from the legal system’s ignorance about working with deaf people or society’s tendency to overprotect and patronize them. If it appears that a client has been protected from the consequences of his behavior, resulting in an artificially low score on the Static-99, I note this in the assessment. Because sex-offender assessment with deaf clients is so complex, it is best undertaken as part of a team effort, ideally a team containing both deaf and hearing clinicians, and expertise in both deafness and sex-offender assessment. The teamwork on the Deaf Unit was one of the most rewarding parts of my job there. SEXUAL-OFFENDING RISK ASSESSMENT WITH DEAF CLIENTS: THE ART AND THE SCIENCE Sexual-offending risk assessment with deaf clients is both an art and a science. The science is in the gathering information and administering tests. The “art” is somewhat harder to articulate. It entails pulling together information from a number of different areas, including knowledge of deafness and sign language, and synthesizing it with knowledge of sex-offender assessment and treatment. This is especially true during the interview, in which the evaluator poses questions and follows leads, never knowing what will turn up. Are there inconsistencies in his story that might suggest lying or denial? How connected is the client with the Deaf community, and how might that affect his behavior, self-esteem, degree of isolation or support? What do you learn about her social skills and worldview simply from being with her? Is substance abuse a factor, and if so, how does it fit in with his alleged sexual offending? If he perceives that everyone is out to get him, is that paranoia, or the understandable response of a deaf person to a chronically hostile environment? When he uses the sign for “rape,” is his notion of the word the same as yours? The “art” is in building rapport as well as gathering information. You are trying to work collaboratively with a client while conducting an invasive interview about an extremely personal subject. This requires a multitude of

8.

TREATMENT OF SEXUAL OFFENDING BEHAVIOR

313

clinical skills. These include a personal comfort with sexuality, sense of humor, strong self-knowledge about your degree of cultural competence and where you might need to seek help, and persistence or even obstinacy in the face of a client’s desire to avoid a subject or minimize his behavior. Sexual offending depends heavily on secrecy. The evaluator is asking the client to talk about the very subject she wants to keep most secret. This makes the assessment process difficult with any client. It may be especially so with culturally Deaf clients, many of whom hold as their primary social support a small Deaf community in which information is passed quickly and freely by “grapevine”, and the threat of stigma or ostracism is especially pronounced. Egley (1982) discussed the intense secrecy of the Deaf community about issues of sexual abuse. A Deaf person often will feel he cannot share information with another Deaf person for fear of gossip; nor can he share it with a hearing person, whom he sees as an outsider who can’t be trusted. Sometimes it is helpful for the evaluator to acknowledge the difficulty of the subject and directly to address the client’s concerns. In most cases, a sexual-offending risk assessment culminates in a report that assesses the level of risk and recommends how to address this risk with supervision or treatment. The next section focuses on treatment. TREATMENT Treatment of clients with sexual-offending behavior targets the dynamic risk factors and flows directly from the findings of the assessment. The hope, of course, is to reducing the client’s risk of re-offending. Entire books have been written on the subject of treatment—obviously, the topic exceeds the scope of this chapter. There are several broad approaches to the work: pharmacological, behavioral, educational, and others. Solid guidelines can be found in ATSA’s Guidelines for Ethical Treatment. I focus on the type of therapy I have used primarily with deaf clients: cognitive behavioral therapy, with an emphasis on relapse prevention. By treatment “I” have provided, I mean as a member of a team. The team includes colleagues from my own site and from other systems. Of particular benefit is a good working relationship between the treatment providers and the criminal justice system (e.g., the probation or parole officer). The sex offender who will stay in treatment without a legal mandate and compliance monitoring is the exception rather than the rule. The ideal therapist for a culturally Deaf sex offender would be knowledgeable about Deaf culture, able to communicate in the client’s preferred language, and knowledgeable and experienced in sex-offender treatment. Few therapists meet this description. One solution to this problem is for two or more therapists to collaborate. It is imperative that the treatment be provided and monitored in a way that addresses both needs. Studies have shown that cognitive-behavioral therapy, with an emphasis on relapse prevention, can reduce recidivism in forensic populations.

314

LEMERE

Research also indicates that group therapy is the optimal treatment modality (Marshall & Barabee, 1990; McGuire, 1995). These findings raise questions with regards to the specific needs of deaf clients. For example, is a “hearing” sex-offender group with an interpreter more beneficial than individual sex-offender treatment with a fluently signing clinician? There are no clear answers to these questions yet. ATSA recognizes the need for the development of specialized approaches for special populations. My own treatment approach with deaf sex offenders incorporates the following therapeutic goals: • working with the client toward a believable full disclosure of his or her sex-offender history, • noticing and confronting thinking errors that have contributed to sexual-offending behavior, • assessing and facilitating victim empathy, • providing education about a range of topics including: human sexuality, legal issues with regards to sex offending, social skills, conflict resolution skills, • relapse prevention based on the sexual-offending cycle. The Sexual-Offending Cycle and its Use in Relapse Prevention Research shows that sexual-offending behavior often occurs as the last step in a patterned sequence of behaviors and responses. For this reason, the process of sex-offender recidivism appears to parallel the process of substance abuse relapse (Gorski & Miller, 1986). Conceptualizing relapse as a process rather than a single act or decision suggests that if we can teach a sex offender to recognize his own cycle of offending, we can then help him see warning signs, and find ways to halt the downslide before it culminates in sexual offending. The sexual-offending cycle consists of situational thoughts, feelings, and behaviors that, if allowed to follow their usual course, might lead to sexual offending. For instance, a rapist might get fired from his job (situation), which makes him feel life is unfair (thought), which might result in his feeling angry and depressed (feelings). If he is in treatment and aware of his cycle, he might recognize the warning signs and see that he needs to use a coping skill, such as talking about his feelings to a supportive person. Perhaps he does not catch himself, but chooses to get drunk in order to avoid his feelings, a risky choice because he has committed other sex offenses while under the influence of alcohol. He goes to a bar (situation— risk of substance abuse). There he notices an intoxicated young woman sitting next to him (situation—victim proximity). He thinks that she is probably a tramp and a tease (cognitive distortion conducive to sexual offending). He feels frustrated and sorry for himself (negative feelings). If he now steps back, says, “Whoa, what am I doing? This is only going to lead

8.

TREATMENT OF SEXUAL OFFENDING BEHAVIOR

315

to trouble,” leaves the bar, and goes home to sleep off the alcohol, he would be considered to have shown successful relapse prevention. On the other hand, maybe he stays and flirts with the woman (a risky situation, considering his rape history, his state of mind, and his hostile appraisal of her). When she agrees to leave the bar with him, he feels entitled to have sex with her (cognitive distortion and high-risk thinking). They go to his apartment (very high-risk situation, as they are now alone), where she resists his advances. He becomes enraged and rapes her. The sexualoffending cycle has ended with a sex offense. This example give an idea of the skills involved in relapse prevention. The offender must be able to identify feelings, thoughts, and behaviors. He needs to see the patterns of cause and effect in his own behavior. He needs to understand that his cycle is a tendency—not an inevitable fate. He must have a variety of coping skills with which he can interrupt his cycle. These are difficult concepts. Deaf clients are often initially unfamiliar with many of them. To aid in the teaching of relapse prevention, the Deaf Unit’s communication specialist Michael Krajnak, who is Deaf, has developed a series of illustrated teaching tools. For example, to illustrate the concept of the warning signs, he drew a train track with a series of signs warning that the bridge is broken down ahead. This card is found in chapter 4. He also drew a series of pictures showing the various warning signs for an impending earthquake. Finally, he drew skill cards illustrating a variety of coping skills that can be used to interrupt the sexual-offending cycle. We have found these cards to be invaluable for educating deaf clients about relapse prevention. For more examples of these cards and information about their use see chapter 4 and the accompanying compact disc. Therapist Style: Sex-Offender Treatment Versus Traditional Mental Health Treatment Sex-offender treatment differs considerably from traditional mental health treatment. As a graduate student in social work, I was taught to join with the client on establishing mutually agreeable goals. As a sexoffender therapist, I have learned that my goal—that there be no more victims—may put me in opposition to my client. Traditional mental health treatment emphasizes support and collaboration; sex-offender treatment often involves confrontation. Traditional treatment is confidential; the sex-offender therapist must be ready to report violations of probation or parole. Traditional mental health treatment is nonjudgmental; sexoffender treatment takes the position that sexual offending is wrong and must be stopped. Having said all this, I want to add that I have genuinely liked some of offenders I have worked with, many of whom suffer from isolation and low self-esteem. I try to balance empathy and support with accountability and demand.

316

LEMERE

Because of the level of confrontation involved and the desire to unearth “skeletons in the closet,” the client, and at times her family, can develop strong negative feelings toward the therapist. A sex-offender therapist must be prepared to handle these reactions. Because many therapists are “people people” who want to be liked and to be perceived as helping, the sex-offender therapist must believe strongly in the treatment in order to weather such negative reactions. The sex-offender therapist must also be ready and able to learn the details of a client’s victimizing others. There is a risk of vicarious trauma, in which the therapist experiences posttraumatic effects after learning of acts of victimization. This is another reason why the therapist should not work alone. It is especially helpful to have support from others who are familiar with sex-offender treatment. The therapist cannot be squeamish and must maintain equanimity for treatment to succeed. A client who perceives that her therapist can’t handle the facts will likely retreat from the necessary work. ACCESSIBILITY We can use a variety of methods to make our work accessible to Deaf clients, including those who cannot read and those with cognitive limitations or minimal language. On the Deaf Unit, we use visual aids to help communicate important ideas such as relapse prevention and coping skills. We also ask clients to draw. For example, the Minnesota Chemical Dependency Program, a culturally affirmative substance abuse treatment program in Minneapolis, asks patients to draw their understanding of key recovery concepts. (MCDP’s program is described in chap. 7.) This facilitates communication without relying on language. For example, a client who is learning about Alcoholics Anonymous Step 1, “We admitted we were powerless over drugs and alcohol and that our lives had become unmanageable,” can be asked to draw a picture that illustrates how powerlessness feels or what unmanageable looks like. The drawing becomes a springboard for group discussion. I recently worked with the sole Deaf inmate in a prison-based sexoffender program. The inmates had been instructed to identify their individual high-risk emotions (i.e., those likely to lead to sexual offending), and to share them with their therapy group members. I explained the concept of high-risk emotions in sign language and then encouraged the Deaf inmate to draw pictures of the emotions as a way of communicating them to his peers. He took the concept one step further and drew a person showing and signing the high-risk emotion. He accomplished the therapeutic task, and also taught some sign language to the other inmates, thus sharing the responsibility for effective communication. Because I am a hearing clinician who signs rather than a Deaf native signer I do use co-therapy whenever possible. I might have another therapist and Deaf native signer in the room together. This approach sets a high

8.

TREATMENT OF SEXUAL OFFENDING BEHAVIOR

317

standard for good sign communication, and helps prevent communication errors. It models a collaborative, respectful working relationship between Deaf and hearing people. Cotherapy also provides the opportunity for role play, which has proven to be an extremely useful method of working with our Deaf clients. We use role play for many purposes, including: • “rehearsing” different ways of handling the same situation, • assisting the patient in retelling past events, • giving the patient the opportunity to assume different roles, which allows us to assess her ability to empathize, to see things from different perspectives, and to learn new behaviors, • as a treatment tool to increase these skills. When the Perpetrator has Also Been a Victim What if the sex offender has a history of being abused himself? Did this experience “cause” him to become a sex offender? The reality is that many people experience abuse, including sexual abuse, without becoming sex offenders. It is not a simple matter of cause and effect. At the same time, a client’s history of offending sometimes closely parallels his victimization experience. Every Deaf client whom I have treated for sexual-offending behaviors has had a documented or reported history of being abused. Sometimes, the client already has a documented history of having been abused; other times she may disclose this information for the first time in sex-offender treatment. How should this be handled? Opinions vary, and there are no definite answers. In Web of Meaning, (Ryan & Associates, 1999) Ryan made a point on which many prominent specialists agree: Trauma work does not substitute for sex-offender work. It may be offered simultaneously after a certain amount of progress in sexoffender treatment, or not at all, but it should never replace sex-offender treatment. It should never be accepted as an excuse for sexual offending. A sex offender will usually prefer discussing being abused to being abusive. It is easy for the therapist, when confronted by genuine horror in the client’s life, to be distracted from the task at hand—addressing the sexual offending behavior. I often use “presession planning” and “goal-focused documentation” to keep myself on track (i.e., asking myself before and after each session what we accomplished and we need to do next in the sex offender’s treatment). SPECIAL POPULATIONS Treating Deaf Sex Offenders Who are Intellectually Disabled, Mentally Ill, or Language Impaired Therapy approaches for sex offenders are heavily dependent on clients’ being able to understand concepts and communicate effectively. Clients are

318

LEMERE

asked to understand and modify a thinking error that contributes to their offending, or to analyze the chronology of events leading up to a sexual offence. They are asked to discuss complicated ideas, sometimes in writing and sometimes in group therapy. These treatment approaches present special challenges when applied to Deaf clients who are intellectually disabled or have inadequate language to do the work. A workbook designed to help a client better understand his sexual-offending history and risks is of no use to a nonreader. As more of these nontraditional clients are referred for sexoffender services, a body of literature on the treatment of special populations has begun to grow, particularly for the intellectually disabled. The following are some provisional research-based guidelines for clients who have barriers to thinking and learning: 1. Consider the possibility of an untreated mental illness that may contribute to the offending, or which might diminish the client’s ability to benefit from sex-offender treatment. Learning disabilities and psychiatric disorders are often comorbid with sexual-behavior disorders (Kafka, 1991, 1992). Appropriate psychiatric treatment can reduce a person’s risk of re-offending and increase her ability to benefit from treatment. 2. Assess learning abilities and needs. Can he understand abstract concepts? Read? Tell a chronological story in any language? Can he solve problems? Retain new learning? Express thoughts and feelings? How is his overall intelligence? Attention span? On the basis of these, how well do standard sex-offender treatment approaches “fit” this client? How could they be modified in order to impart the necessary information? 3. Emphasize effective teaching. Coleman and Haaven (1998) wrote: Teaching effectively involves linking emotion with learning and includes elements of entertainment, fun, even the bizarre. Treatment should involve doing rather than simply talking whenever possible.… Making projects related to therapeutic goals facilitates learning.… One of the pleasures of working with this population is the pull for the therapist to be creative in order to effectively intervene.

Expressive arts, therapeutic adventure programming, and other nonverbal modalities should be used whenever possible, with the goal of replacing didactic teaching with experiential learning. On the Deaf Unit, we frequently use role play to practice skills, such skills as removing yourself from a high-risk situation. We might role play the choices facing a child molester who is asked to baby-sit alone in an emergency. 4. Work hard to create “motivational systems” (Coleman & Haaven, 1998). The intellectually disabled client is more likely to have been protected from legal consequences and less likely to have alternate sources of sexual outlet. An example of a motivational system is the use of access to freedom or privileges based on adherence with the behavior plan. For

8.

319

TREATMENT OF SEXUAL OFFENDING BEHAVIOR

instance, a Deaf, intellectually disabled group-home resident might earn passes to see his family based on his adherence to a behavior plan. Case Example Bill, a Deaf Hispanic male, age 24, was admitted to a psychiatric unit for evaluation after showing signs of paranoia and sexually inappropriate behavior. He had tried to fondle staff at his group-home residence and had masturbated in public. Assessment revealed a history of language deprivation and developmental delays. He could not read, write, or communicate in more than a few dozen signs. On IQ testing, he was found to be moderately mentally retarded. Two interventions were essential before we could address his sexually abusive behaviors: (a) antipsychotic medication to relieve his paranoia, and (b) pictorial tools to aid us in our work. We asked our communication specialist to illustrate some of the concepts we would need to discuss, such as the fact that although masturbation itself was acceptable, public masturbation was not. Because he was unable to give informed consent for medication or other treatments, we also sought a guardian. (See Fig. 8.1.)

FIG. 8.1

320

LEMERE

Treating the Nonadjudicated Deaf Sex Offender When a Deaf client is suspected or known to have committed a sexual offence but has never been convicted, the clinician’s job becomes more complicated. In this case it is crucial to obtain written consent from the client for the clinician to warn potential victims or to alert the legal system if necessary. One of the worst positions a therapist can find herself in is having information that is protected by the client’s right to confidentiality. It is also important that the nonadjudicated offender approaches the work with a clear understanding of the potential risks and benefits. He needs to know from the outset that a decrease in freedom or an increase in monitoring are possible outcomes of the therapy. Knowing this, some clients will simply refuse to participate in evaluation or treatment. Although that is frustrating for a clinician who believes that the client is sexually dangerous, it is still necessary to respect the client’s right, in the absence of a court order or guardian’s consent, to refuse assessment and treatment. If a patient is court-ordered or willing to cooperate with an evaluation, she can sometimes be persuaded to admit to prior sexual offences. This can sometimes be accomplished by setting a mutual goal, so that the client “buys in” to the treatment. A clinician and client might set a goal of keeping the client out of legal trouble by helping her avoid illegal behaviors. The clinician can also lead the client to believe that she has more information about his behavior than she actually has. For instance, a client denies having ever raped anyone, but you know that he was charged with rape of a female neighbor. Mentioning the neighbor’s first name—“I want you to tell me what happened between you and Rita”—might lead him to disclose a sexual offense because he thinks you already know what happened. (This method works especially well if you bring with you a thick file folder that appears to contain old records.) With this technique, one Deaf Unit patient who had previously denied ever having committed a sexual offense admitted several rapes. His accounts closely matched the alleged victims’ complaints. Case Example A 30-year-old single White Deaf male reported a history of sexual relations with underaged females. He had never been arrested, and insisted that he was not breaking any laws because his partners had “consented.” One of his victims, was only 13 (he was 22). Despite education provided with the assistance of our communication specialist, he believed there was nothing wrong with having sex with minors. He would not agree to voluntarily participate in a psychosexual assessment in order to clarify his level of risk and identity his risk factors. He had no guardian and appeared competent to make his own decisions. With his permission, we informed his community case manager that we were concerned about his reported history of sexual

8.

TREATMENT OF SEXUAL OFFENDING BEHAVIOR

321

encounters with underaged females. However, in the absence of an identifiable victim, there was no mandate to report this information to anyone. In fact, his disclosures were protected under his right to confidentiality. We urged the case manager to arrange for sex education and education about the law. I lost a few nights’ sleep when he transitioned from an inpatient setting to community living. TREATING THE FEMALE DEAF SEXUAL OFFENDER Historically, sexual offending has been viewed as male behavior. However, research has shown (Allen, 1990; Banning, 1989; Plummer, 1991) that although there are many female sex offenders, societal taboo and collective denial about women’s capacity for such behavior have hindered our acknowledgment of the problem. There is preliminary evidence that female sex offenders differ from male sex offenders with regard to their histories and treatment needs. Most incarcerated female sex offenders were victims of childhood abuse. Identity disturbance is a major factor in their offending behavior. As a group, they appear to be more psychologically disturbed than male sex offenders. One clinical model for treating women sex offenders incorporates a trauma-theory framework. Research suggests that female sex offenders should be treated in all-female programs because their needs appear to be so different. McCarty (1986) studied the case records of female sex offenders in the Dallas Incest Treatment Program. Based on this research, she grouped female offenders into three basic subtypes: (a) independent offenders who functioned as the sole perpetrator of the sexual abuse, (b) co-offenders who actively participated in sexual abuse along with others, and (c) accomplices who enabled the abuse to happen by assisting in its planning, execution, or concealment, or who failed to intervene on the victim’s behalf. Research has shown that most women offenders in all three of these offending subtypes have suffered physical, psychological, and sexual abuse. The independent offenders stood out as having experienced significantly more serious sexual abuse prior to the age of 8, in both duration and severity. Psychological testing showed the independent offenders to be the most seriously psychologically disturbed of the three subtypes. Case Example Celia, a 21-year-old single White Deaf female, was referred for outpatient evaluation of sexual-offending risk after a coworker in a supported employment program complained that Celia had been cornering her in the women’s bathroom over the course of a few months. The coworker alleged that Celia had touched her breasts and buttocks, threatening to hurt her if she told anyone. Celia initially denied this accusation, but ultimately ac-

322

LEMERE

knowledged it. She admitted to having used physical force as well as threats, but she insisted that the two were romantically involved and that the sexual contact was fully consensual. She seemed unable to grasp the contradiction in these statements. When asked to explain the meaning of force, she told the story of her uncle sexually abusing her in her family home when she was a small girl. She said that he became more violent with each assault, ultimately leaving enough physical evidence (bruises, cuts, etc.) that when she finally gathered the courage to report the abuse, he was convicted and incarcerated. Asked where and how the abuse happened, she said he cornered her in the bathroom. She showed no insight into the parallels between her experiences of being abused and being abusive. Celia showed symptoms of PTSD, including flashbacks, hypervigilance, intrusive memories, and nightmares about the abuse. She had a well-documented history of explosive outbursts at school and at a previous job, which had culminated more than once in physical assault; however, as a deaf person, she was often seen as a victim rather than an abuser, so her outbursts were usually met with increased support rather than consequences such as arrest or firing. No charges were ever pressed against her for her assaults. Astonishingly, her employer did not consider it important to separate the perpetrator from her victim until the treating psychiatrist and I emphasized it. The employer described the behavior as “too much touchy-feely stuff in the bathroom” and implied that in confronting Celia about her wrongdoing we had solved the problem. One can surmise that if a male rather than a female employee had cornered, fondled, and threatened another employee, the behavior would not have been dismissed as readily. Fortunately, the employer was open to suggestions, and the two women were ultimately given work assignments in separate locations. TREATING THE SUBSTANCE ABUSING DEAF SEXUAL OFFENDER The Deaf client who shows signs of both a substance-use disorder and sexual-offending behaviors has two serious conditions, both of which need treatment. Although it would be nice if we could focus on one problem at a time, they are usually so intertwined that they required simultaneous, integrated treatment. A sexual-offending risk assessment should always include an assessment of the client’s substance use history (Salter, 1988). However, substance abuse is not considered the cause of the sexual offending. Many substanceabusing sex offenders will attempt to blame substances to avoid taking responsibility for their sexual offending. A 1978 study of sexual offenders (Groth et al., 1978) found that 30% of the sex offenders in their study reported abusing alcohol.

8.

TREATMENT OF SEXUAL OFFENDING BEHAVIOR

323

Vast numbers of addicts and alcoholics never commit a sexual offense. Substance abuse by itself doesn’t “cause” sexual offending. However, substance abuse, particularly alcohol abuse, can be a significant risk factor in someone with a history of sexual offending. A 1976 study by Rada shows that approximately half of their sample of convicted sex offenders were drinking when they committed their offense (Rada, 1976). In 1985, Gene Abel and his colleagues found that 30% of a sample of child molesters reported that drinking increased their attraction to children, and 45% of rapists said that alcohol increased their desire to rape (Abel, 1985) It is important to assess whether and how substance abuse fits into the client’s sexual-offending cycle. For example, does the person drink or use drugs in order to work up the courage to commit a sex crime? (One former client of mine described drinking until a “don’t care attitude” set in.) Does the client drink to excess before offending in a premeditated plan to use his intoxication as an excuse in the event that he is caught? Some offenders, for example, have described splashing alcohol on themselves before committing a sex crime so they could claim to have been severely intoxicated if they were arrested for the crime. Whenever substance abuse has been a part of the person’s sexualoffending cycle, his relapse prevention plan should include abstinence from all nonprescribed drugs, including alcohol, and a program of substance abuse recovery. Although there are differences between substance-abuse treatment and sex-offender treatment, there are also many parallels that can be emphasized in an integrated treatment approach. Both substance abuse and sexual abuse are considered lifelong problems for which there is no cure, but that can be managed effectively. Both substance abuse and sexual offending are seen as the final step in a pattern of problematic thoughts, feelings, or behaviors; this pattern or cycle can be learned and can inform relapse prevention strategies. On the Deaf Unit, our communication specialist has developed several skill cards to help teach relapse prevention concepts to Deaf patients (see compact disc). Isolation and secrecy are risk factors for both sexual offending and substance abuse, whereas involvement with groups of recovering peers is considered helpful. Case Example Troy, a 35-year-old single White Deaf male, was admitted to a psychiatric facility for evaluation of his mental status at the time that he allegedly committed his crime and his competency to stand trial for it. When he participated in a court-ordered sex-offender assessment, he not only acknowledged having committed this crime, but also disclosed having committed another sex crime while under the influence of alcohol. According to Troy, when he was 23 and living in his mother’s home, he and his mother had frequent arguments, often ending in his storming out of the house and drinking. While

324

LEMERE

he drank to intoxication, he thought about the ways he felt wronged, then walked angrily around his neighborhood. On one such occasion, he was walking through a park intoxicated and saw a young woman who, he thought, showed interest in him. He gestured for her to walk with him. When she would not, he felt that she had been “teasing” him. He started pressuring her. She attempted to flee. He caught her, dragged her behind a bush, beat her unconscious, then raped her and left her. According to Troy, this was the only time he ever grabbed and raped a stranger. However, he did describe many other instances of getting angry, getting drunk, and then walking to the same park in a disinhibited and rageful state of mind. It is easy to see how, in this situation, he could rape again, and how relapseprevention training might help him to interrupt this cycle before it reached another tragic conclusion. Systemic Issues and Political Concerns The field of sexual-offending assessment and treatment for Deaf clients is in its infancy, and there is much to be learned. The sex offender does not exist only in a treatment vacuum, but is part of a larger social context and, often, of multiple systems. I have worked with many Deaf clients who have eluded arrest and/or criminal charges on numerous occasions because someone in the larger system (police, counselor, parent) deemed them not responsible for their behavior. This may be well-intentioned. However, when it results in shielding sex offenders from the consequences of their behavior, it can have the unfortunate effect of preventing the person from receiving needed services, from realizing the impact of their abusive behavior, and from addressing the behavior at an early stage when it might not be so entrenched and treatment might be more effective. It is a disservice to the Deaf person, and sometimes a danger to society. There is a natural reluctance among culturally Deaf clients to talk about sexual offending. Many people, Deaf and hearing, are concerned about any label that can result in the stigmatizing or pathologizing of a Deaf person, especially by those who are ignorant about the Deaf community. As a hearing therapist working cross-culturally in this difficult area, I continually seek assistance and guidance from Deaf colleagues. I do this more when it comes to sex-offender treatment than I do with the other types of treatment I provide. I do this for many reasons, including the fact that there is a clear power imbalance between the sexual-offending client, who often faces legal sanctions and is mandated into this treatment, and me. I do this in the interest of being directive rather than oppressive. There is a movement toward seeing sexual offending as a public health issue, an epidemic that poses a risk to public health and safety and that can be self-perpetuating: The experience of being sexually victimized, when combined with other factors, can increase a person’s risk of victimizing others.

8.

TREATMENT OF SEXUAL OFFENDING BEHAVIOR

325

One of the steps we can take toward addressing the problem of sexual offending is to detect it sooner, treat it sooner, and invest in research about causes and treatment. We need to make sure that as Deaf people with sexual-offending behaviors are identified, that their needs are understood, and that they have the same access to specialized treatment services as hearing people. We need to make sure that in our efforts not to pathologize, label, or disempower Deaf people, that we don’t put our heads in the sand about behaviors that can have devastating effects. Synthesizing what we know about both sex-offender treatment and culturally affirmative treatment with Deaf clients provides a foundation for this work. REFERENCES Abel, G. G., Mittelman, M. S., & Becker, J. V. (1985). Sex offenders: Results of assessment and recommendations for treatment. In M. H. Ben-Aron, S. J. Hucker, & C. D. Webster (Eds.), Clinical criminology: The assessment and treatment of criminal behavior (pp. 191–205). Toronto, Canada: M & M Graphics. Allen, C. M. (1990). Women as perpetrators of child sexual abuse. In Horton, A. L., Johnson, A. L., Foundy, B. L., & William, L. M. (Eds.), The incest perpetraitor: A family member no one wants to treat (pp. 108–125). California: Sage Publications. Banning, A. (1989). Mother-son incest: Confronting a prejudice. Child Abuse and Neglect, 13, 563–570. Coleman, E., & Haaven, J. (1998). Adult intellectually disabled sexual offenders: Program considerations, Sourcebook of treatment programs for sexual offenders. Egley, L. E. (1982). Domestic abuse and Deaf people: One community’s approach. Victimology. An International Journal, 7(1–4). Glickman, N. S., & Harvey, M. A. (1996). Culturally affirmative psychotherapy with Deaf persons. Mahwah, NJ: Lawrence Erlbaum Associates. Gorski, T. T., & Miller, M. (1986). Staying sober: A guide for relapse prevention. Herald House/Independence Press. Groth, N., Burgess, A., Birnbaum, H., & Gary, T. (1978). A study of the child molester: Myths and realities. Journal of the American Criminal Justice Association, 41(1), 17–22. Haaven, J., Little, R., & Petre-Miller, D. (1990). Treating intellectually disabled sex offenders: A model residential program. Safer Society Press. Hanson, K. (1997). The development of a brief actuarial risk scale for sex offense recidivism (User Report 97-04). Ottawa: The Department of the Solicitor General of Canada. Hanson, K., & Thornton, D. (1999). Improving actuarial risk assessment for sex offenders (User Report). Ottawa: The Department of the Solicitor General of Canada. Hanson, K. R. (2000). Sex offender need assessment rating: A method for measuring change in risk levels. Ottawa: The Department of the Solicitor General of Canada. Hanson, K. R., & Bussiere, M. T. (1988). Predicting relapse: A meta-analysis of sexual offender recidivism studies. Journal of Consulting and Clinical Psychology, 66(2), 348–362. Hare, R. D. (1991) The hare psychopathy checklist-revised. Toronto, Canada: MultiHealth Systems. Hare, R. D. (1999). Without conscience: The disturbing world of the psychopaths among us. Guilford Press.

326

LEMERE

Marshall, W. L., & Barabee, H. E. (1990). Outcome of comprehensive treatment programs. In W. L. Marshall, D. R. Laws, & H. E. Barabee (Eds.), Handbook of sexual assault: Issues, theories and treatment of the offender. New York. Plenum McCarty, L. M. (1986). Mother–child incest: Characteristics of the offender. Child Welfare, 55, 447–458. McGuire, J. (Ed.) (1995). What works: Reducing reoffending. Chichester: Wiley & Sons. Plummer, K. (1981). Pedophilia: Constructing a psychological baseline. In M. Cook & K. Howells (Eds.), Adult Sexual Interest in Children. London: Academic Press. Rada, R. T. (1976). Alcoholism and the child molester: Annals of the New York Academy of Science, 273. Ryan, G., & Associates. (1999). Web of meaning: A developmental-contextual approach in sexual abuse treatment. Safer Society Press. Salter, A. C. (1988). Treating child sex offenders and victims: A practical guide. Sage. Virkkunen, M. (1974). Incest offenses and alcoholism. Medicine, Science, and the Law, 14, 124–128.

9 Does God Have a Cochlear Implant?

1

Michael A. Harvey Boston University School of Education Pennsylvania College of Optometry, Department of Audiology Private Practice, Framingham, MA

The cochlear implant poses a challenge to culturally affirmative therapy. It has been both exalted as a biomedical breakthrough (Cochlear Corporation, 1994) and disparaged as an instrument of cultural ethnocide (Lane, Hoffmeister, & Bahan, 1996). In the abstract, our positions are so clear! But when we are confronted with this issue head-on in our practices, things may become a bit less clear. My day came on an otherwise peaceful morning, right after my morning coffee. Tommy, an English-speaking 8-year-old boy who had been deaf for the past 2 years, and his two hearing parents had just sat down in my office. I had barely finished getting initial intake information when he fired a fateful question at me—one that would eventually be the title of this chapter. “Well does he?” Tommy persisted. “What do you think?” came my knee-jerk response. A well-known face-saving device among therapists when we don’t know an answer. “I don’t think so,” he replied, “God doesn’t need a cochlear implant because he’s not deaf.” “How do you know that? Suppose God is deaf?” I asked. Although Tommy appeared quite proficient orally, I used simultaneous voice and sign in case it made communication clearer for him, and as an affirmation of the importance of signing and Deaf culture. “Well, he could make himself hearing anytime he wants without getting an implant,” Tommy responded confidently. “And why would he wanna do that?”2 1

A modified version of this chapter was published in Journal of Deaf Studies and Deaf Education, Oxford University Press. 2 Admittedly on a defensive note, let me beg the debate of whether God is a “he,” “she,” “it,” etc. Here, I was simply matching Tommy’s masculine gender assignment.

327

328

HARVEY

“So he can be like everyone else.” “We’re trying the best we can to help you, dear,” interjected Shirley, Tommy’s mother. “That’s what we’ve been talking about with all those doctors.” Still looking at Tommy, I said, “If God was the same as everyone else, he wouldn’t be God, now would he?” A brilliant intervention, I thought. I wanted to introduce the concept of cultural heterogeneity. “Yes, he would,” Tommy immediately retorted. “He would be God and be the same as everyone else. Like Mom and Dad; they can both hear but they’re still different from each other, right?” “Right,” I admitted. So much for my brilliance. “And when I get my implant, I’ll still be me even though I can hear better, won’t I?” he asked his mother. Either Tommy was really concerned or he was milking his victory over me. “Yes, you will,” Shirley replied. “When you get your implant, you’ll still be you. In fact, you’ll be more of you because you’ll know more about what other people are saying.” Shirley looked toward her husband, Leo, who remained conspicuously silent. I wanted to know the meaning of his silence, but first I wanted to understand Tommy’s opening question. “So, Tommy, why do you wanna know if God has a cochlear implant?” I asked. “Well, if it’s okay for God, it’s gotta be okay for a human like me.” “But you said that even if God was deaf, he wouldn’t need an implant to hear better?” “Yeah, but maybe he would want one anyway. Maybe he could hear our prayers even better if he gets one.” “Now Leo entered the conversation: “But son, God doesn’t need to hear better. He already knows everything.” “I know that, dad. But remember when Mom got that new toaster oven? She asked Aunt Doris how she liked hers before she bought one for us. Remember?” “Yes, but what does …” “It’s easy, Dad,” Tommy interrupted. “If God likes his cochlear implant, humans like me will probably like it, too.” “If it’s good enough for God, it’s good enough for you?” I mused. “Yeah,” Tommy replied. “Look what I drew!” He proudly displayed the drawing he had made while we had been talking. It looked like Casper the Friendly Ghost with wires coming out of his head. In fact, it was none other than the Supreme Being with a cochlear implant! Although Tommy put up a fuss every Sunday morning when it was time to go to church, God was an important part of his life. An endorsement from Aunt Doris would do for toaster ovens, but nothing less than God’s endorsement would be required to decide whether he should have an implant. The only problem was that God’s endorsement so far was unclear and subject to debate. Tommy had incurred a profound hearing loss shortly after his sixth birthday as a result of a rare kind of autoimmune deficiency. His parents

9.

DOES GOD HAVE A COCHLEAR IMPLANT?

329

were devastated. They were an upper-middle class, interracial couple (Leo was African-American, Shirley was White) who had worked hard to reap the “American Dream.” Their dream did not include having a deaf child. After undergoing extensive medical and audiological evaluations, Tommy had recently been approved for cochlear implantation surgery. As an academic sociologist, Leo had recruited his graduate students into collecting relevant medical and sociological articles from libraries and the Internet. Shirley, a housewife, had visited several clinics and consumer groups, and had read stacks of testimonial reports from implant users. We ended our session by scheduling an “adults only” meeting, as I felt it would not be helpful yet for Tommy to hear what I sensed would be his parents’ ambivalence or fears. I bade them goodbye. While writing my case notes, I mused how culturally affirmative therapy seems so easy on paper. It is a “paradigm shift” (Kuhn, 1970), a therapy that is “socioculturally informed, that utilizes culturally relevant tools, and that seeks to empower clients and their communities” (Glickman, 1996). It is the right thing to do, and something I surely try to teach my children about: Be respectful, don’t be prejudiced, and so forth. The only problem is that in the real world it can become more complicated than it seems in the books—particularly when you work with families or groups who are in active conflict and want to pull you in on their side. In Tommy’s case, I had an inkling of what was to come. A week later Tommy’s parents returned to my office. “So who wants to start, and where?” I asked. “I’ll start,” Leo announced. He was obviously sitting on a lot of feelings and was eager to release them. “I’ve been going back and forth about this surgery ever since the doctors told us a month ago that it was possible. They talked about the benefits of cochlear implants: that Tommy would have greater access to sounds and conversation; that he’d have a richer life with expanded options; but that we shouldn’t expect miracles or for him to have completely normal hearing. Their position makes sense. But then I read about the position of the Deaf community. They say that to be implanted is a cultural stigma and that we would be trying to fix something that isn’t broken; that we should accept Tommy as Deaf. Their position makes sense, too. But if he’d have a better life as—” “Tommy’s hearing disability is not a difference, honey. It’s not like being Black or White.” Shirley’s voice was soft and sweet, but I wondered how long that would last. “Do you think Tommy will have a better life with or without an implant?” I asked Leo. “Well, that’s just it, I don’t know. As Tommy’s Dad, I’ll answer ‘Yes, of course!’ But that may be because I’m too involved, too close. The readings I’ve done as a sociologist (he produced a copy of Harlan Lane’s Mask of Benevolence [1994]) is compelling. Would I have a better life as a White man? I don’t know. Would I have a better life as a Latino? I don’t know. Would I

330

HARVEY

have a better life as a piece of broccoli? I don’t know that either.” Leo became philosophical and humorous, as if he was giving an oration to his students. I bet he was a good teacher. I asked him to say more. “If I wasn’t Black, I wouldn’t have to fight discrimination. I wouldn’t have been called a nigger by other White kids throughout my childhood in an almost all-White neighborhood. I wouldn’t have been accused of shoplifting more times than I care to remember. Part of me wishes I were White. But I’m Black, and I’m proud of being Black! I wouldn’t know me as White.” He paused, apparently in search of words to describe his White “virtual reality.” “Do you see any advantages to being Black?” I asked. “Yeah, of course I do!” came his immediate response. “It’s made me who I am. It’s given me strength, a backbone, the will to fight; it’s given me soul; it’s given me compassion; it’s given me a deep commitment to help change the world and rid it of evil!” He concluded by quoting W. E. B. DuBois (1994), the famed Black activist in the early 1900s. “I’ll never forget how DuBois described the ‘spiritual strivings’ of Black people as ‘the dogged determination to survive and subsist, the tenacious will to persevere, persist, and maybe even prevail.’” The words and soul of Leo and DuBois filled the room. Positive strivings, however, are not the full story. As Leo noted, a host of liabilities and challenges are also part of the collective memory of the Black community. In the words of Cornel West, a contemporary Black professor and protégé of DuBois, These “strivings” occur within the whirlwind of white supremacy—that is, as responses to the vicious attacks on black beauty, black intelligence, black moral character, black capability, and black possibility. This unrelenting assault on black humanity produced the fundamental condition of black culture—that of black invisibility and namelessness. (Gates & West, 1996)

For Leo—as a Black man and sociologist—the spiritual strivings, threatened invisibility, and namelessness of the Deaf community were inextricably involved in his struggle to decide whether or not to implant his deaf son. Not so for Shirley. “You can quote DuBois, but I can quote one of our great inventors, like Alexander Graham Bell. If he hadn’t tried so hard to make a hearing aid for his deaf wife, he wouldn’t have invented the telephone! There have been incredible advances in surgical techniques for the hearing impaired, assistive listening devices, digital hearing aids, cochlear and auditory brain stem implants.” Her voice, no longer soft, revealed her strength and determination. “All I want to do is give Tommy a better chance to get the same benefits as others who have normal hearing,” she exclaimed. “He can be proud of being deaf if he wants, but he doesn’t have to be deprived of important opportunities! He can have the best of both worlds! That’s the difference between you and him! You can’t make yourself White and be proud of being Black. Well, Tommy can. He’s never going to be completely hearing, even with a cochlear implant. But he’ll have a better chance to succeed in this rac-

9.

DOES GOD HAVE A COCHLEAR IMPLANT?

331

ist world of ours. That’s all I want for him. Once he’s an adult, he’ll make his own choice! “She continued with an impressive rebuttal to her husband, even quoting a parent of a child who received an implant at the age of 3 that she had seen on the CBS television program, 60 minutes: “All we have done is given Caitie a tool and an option. She’s experienced the delights of our culture that are not open to someone who cannot hear. That’s not a small thing, to hear the spoken word and to hear the sounds of the world. And if Caitie chooses at some time in her life that these gifts are no longer pleasurable, she has the option to turn off the implant” (quoted in Biderman, 1998). A good debate in the making, I thought. Leo became quiet, but I could feel his wheels spinning. Shirley had articulated one pole of his own ambivalence. After a long pause, Leo finally retorted: “You’re trying to correct something that God made.” “You always talk about your Black veil which separates you from the White world,” Shirley retorted. “Don’t you think a cochlear implant would remove Tommy’s veil from the hearing world? Don’t you think God would want that?” Shirley knew that the DuBois’ “veil” metaphor was one that Leo knew too well: “The Negro is a sort of seventh son, born with a veil … which yields him no true self-consciousness, but only lets him see himself through the revelation of the other world” (DuBois, 1994). The veil hides one both from the world and from oneself. In the words of Cornel West, “It is a peculiar sensation, this double-consciousness, this sense of always looking at one’s self through the eyes of others, of measuring one’s soul by the tape of a world that looks on in amused contempt and pity” (Gates & West, 1996). Again Leo became silent. Perhaps he secretly agreed with Shirley and was playing devil’s advocate. Shirley, too, seemed to be entrenched in her position in opposition to Leo. Both of them seemed somewhat onedimensional and caricatured. I once came across a cartoon depicting a couple about to depart on an airplane. One spouse asks the other, “Do you want to be scared on this trip or should I?” Instead of each person acknowledging personal ambivalence, each becomes extreme: scared or not scared. They become one-dimensional caricatures. Couples typically use so-called projective identification to unconsciously “give” each member’s “split-off” or unacknowledged doubts, fears, and so on to the other to “hold.” In this manner, each avoids consciously experiencing ambivalence. Accordingly, Shirley did not consciously doubt that the implant could be wrong precisely because Leo took up that role. He “held” her doubts for her. Similarly, Shirley “held” Leo’s positive views on implants so he would be spared “owning” his own ambivalence. I found myself wondering about the part of Leo that, by his own admission, wished he could become White. Would he take a “veil-removing” pill

332

HARVEY

that would change the color of his skin, with the hope that the oppressive majority, community will grant him respect? “Leo, what are you thinking?” I asked. “That many of my Black brothers try to be White by straightening their hair even though it’s an excruciating and painful ordeal. Tommy can try to be hearing by getting a cochlear implant, but at what cost? As Shirley said, he’ll never really be hearing. Instead, he’ll show his self-hatred and shame about being deaf to himself and to the world. I just don’t know if it’s worth it.” He looked down and sighed. “Do you support affirmative action?” Shirley asked somewhat provocatively. Round two had begun. “What does that have to do with anything?” Leo exclaimed with sudden annoyance. Now the debate was becoming more like a marital fight. “Affirmative action gives Black people the opportunities they need and that they have been deprived of,” Shirley responded. “It helps equalize the playing field. An implant will equalize the playing field for our son!” “I’m all for equalizing the playing field, but at what risk? This operation terrifies me! What if something goes wrong? It’s major surgery, for God’s sake!” This fear struck a nerve in Shirley. “I’m scared for that, too,” she admitted, now in a softer voice. “But the doctor has assured us that there’s only minimal risk. He’s done many of these surgeries, all without any real side effects. For God’s sake, Leo, everything comes with a risk. You know that! But it’s worth whatever risk there is to give our son a better life!” Unfortunately, we needed to stop midstream in their debate. I was tempted to extend our meeting, perhaps to argue whether bilingual education and generous societal acceptance would level the playing field, rather than having Tommy join the other team. But I was already late for a treatment team meeting at Westboro State Hospital’s Deaf Unit, where I consult. We made another appointment for the following week. Thirty minutes later, I arrived at the hospital. Leo would have been proud of its bilingual, bicultural philosophy. The Deaf and hearing staff have taken great pains to co-exist with each other in a culturally affirmative manner. There was little positive regard for cochlear implant surgery here. The treatment team meeting had already begun, and the staff members were discussing their discharge plans for one patient. Per the Deaf Unit’s communication policy for most formal meetings, all staff members were using their “natural” languages with the assistance of an interpreter: Deaf staff were using ASL while hearing staff voiced spoken English. “I don’t wanna split hairs over whether he’s discharged on Wednesday or Thursday,” Neil, who is hearing, orally thought out loud. Then he quickly and apologetically corrected his faux pas: “I mean, he can be discharged on either of those days, it doesn’t matter.” A quick save. The Deaf Unit had been having heated discussions about the casual use of English idioms that are not easily translated, thereby excluding deaf people whether a skilled interpreter is present or not.

9.

DOES GOD HAVE A COCHLEAR IMPLANT?

333

I felt a pang in the pit of my stomach. It could be indigestion, I thought, but why would it start just as Neil corrected his oppressive, hearing-based, audist, English idiom faux pas? It wasn’t something I ate. I was annoyed. “This is stupid!” I screamed silently in my head. (As a hearing person, I was reluctant to scream that objection publicly). “After all,” I thought, “the Deaf Unit has decreed that we hearies would use our voices during clinical team meetings while the ASL interpreter signs.” “It’s your natural language,” they said. “Well, if it’s my natural language, why can’t I use my natural idioms? There’s a skilled ASL interpreter in that meeting who could ‘de-idiomize’ a phrase like ‘splitting hairs’” “Mike, stop being so bloody concrete. As a psychologist, what do you think is really going on?” I reflected on the recent consciousness raising at the Deaf Unit about how hearing people use language and the impossible expectations put on the interpreters to take care of everything. They argued that interpreters do not solve the communication barriers that occur when two groups have such unequal power and share such different frames of reference. As Neil himself had written: If we hearing people truly want to not only include deaf people but to empower them, then we need to be mindful to communicate in more “deaf-friendly” ways. That means being careful with our word choices and how we express ideas. Hearing people who do this work have a responsibility to change ourselves, not just to sit back and lazily expect the deaf people to accommodate to us, with or without an interpreter. We strive to be culturally affirmative, not just accessible; to empower deaf people to manage the communication dynamics and to create a Deaf-centric treatment facility because we see this as essential to mental health. (Glickman, 1999, personal communication)

I also recalled conversations with the late Marie Jean Philip, a noted Deaf community leader and teacher who served as the Bilingual Bicultural Coordinator at The Learning Center for Deaf Children in Framingham, Massachusetts prior to her untimely death in 1997. I can still see her immediate and thoughtful responses to complex issues, signed in beautiful ASL. She would have supported the Deaf Unit’s policy: After decades of Deaf people incurring cultural oppression by hearing people, you hearies at the Westboro State Hospital Deaf Unit should go out of your way to level the playing field. You hearies should make it as easy as possible for the interpreter to convey the precise meaning of your oral English to Deaf staff whose primary language is ASL. The no-English-idiom rule is both a linguistic and a symbolic gesture, a demonstration of your commitment to ensure full accessibility for the deaf staff.

I couldn’t help but think of Leo and Shirley. After all, the cochlear implant is a high-tech way of helping to ensure increased accessibility and

334

HARVEY

also of equalizing the playing field. However, by virtue of my training and experience with culturally Deaf persons and culturally sensitive hearing persons, I shuddered at the notion of cochlear implants, except for adults who are able to make their own informed decisions. It was my acquired inclination to categorize implantation with the “evils” of oralism, Alexander Graham Bell’s proposed sterilization of deaf people, and with other acts of oppression that have been levied by hearing persons on deaf persons. “Yet there are many people with hearing losses who are grateful for cochlear implants,” I responded to myself. “But they’re usually not culturally Deaf persons.” “But who decides? And, in a child like Tommy, who began life as a hearing child, but now had a growing identity as a young deaf person, who should decide to change his course?” As the meeting droned on, I had a daydream: I’m entering my favorite sushi bar, looking forward to some Tekka Maki and green tea. There I notice Tommy, who is sitting with a bunch of adults. They are his parents, Marie Philip, Alexander Graham Bell, W. E. B. DuBois, an otolaryngologist named Dr. Implant, and a few other people I can’t make out. Tommy sees me and yells, “Hey, Dr. Harvey. Come join us for a stimulating cross-cultural discourse on balancing possible ethnocentric factors inherent in cochlear implantation with the utilitarian benefits of this biomedical advance!” “Sure thing,” comes my reply. I sit down near the shrimp tempura. Dr. Implant:

Cochlear implants can help deaf children learn spoken language and overcome the educational, occupational, and social barriers that they often face.

DuBois:

If only you could understand how that’s like White people trying to make black folk White. It’s unethical. Marie emphatically nods her head.3

Dr. Implant:

“Oh, c’mon, Bill! Ethics have nothing to do with it. As a physician, my responsibility is to alleviate human suffering, to improve the lives of the patients who entrust their health to me, to explore new medical vistas, to …”

DuBois:

“Go where no man has gone before! You’re right out of Star Trek!”

3 Under the Sushi bar sits a universal translator, available at Radio Shack for $19.98 plus tax. This enables Marie to understand everyone’s oral discourse and for them to understand her ASL.

9.

DOES GOD HAVE A COCHLEAR IMPLANT?

335

Dr. Implant:

“Hey, no fair! You died in 1906. You didn’t even have TVs back then, never mind cochlear implants!”

DuBois:

“My point is that doing those surgeries may get you on the TV and enhance your reputation, but at whose expense?”

Dr. Implant:

“What are you talking about?”

DuBois:

“I can help here. It seems to me that, as an oppressed minority like the Black community, cochlear implants are an assault on Deaf culture. The Black and White worlds—and I’m assuming this is also true for the Deaf and hearing worlds—are divided by what I call a ‘veil’ that requires role playing and mask wearing rather than genuine human interaction. Essentially, a cochlear implant is a hightech veil—a high-tech mask to make deaf folk look more hearing.”

Shirley:

“Gimme a break! Mr. Bell, are you just going to sit here and listen to this hogwash?”

Alex:

“Absolutely not, Shirley (looks sternly at DuBois). Bill, what you don’t realize is that there are many hearing- impaired people who hate deafness with a passion and want more than anything else to be more hearing. They welcome the cochlear implant not as a veil or a mask, but as a way to learn to listen, to reap the benefits of the world around them, to learn speech and language. It’s a technological godsend!”

Aunt Doris:

“Like toaster ovens.”

Dr. Implant:

“They’re much more advanced than even toaster ovens” (Proceeds to lecture Aunt Doris about the components of the implant).

God:

“Excuse me for barging in like this, but I’m looking for a new toaster oven ’cause mine broke.”

Aunt Doris:

“Black and Decker makes the best one with great features. It has automatic cleaning …” (proceeds to lecture God about the components of a toaster oven).

God:

“I see.”

336

HARVEY

DuBois:

“What a great idea!”

Dr. Implant:

“It’s another advanced technology that improves the quality of peoples’ lives. I’m sure you feel that’s oppressive, too!”

DuBois:

“You don’t have to be sarcastic, doc. It’s one thing to help people become more of who they are or could be; but it’s another thing to teach people that who they are—Black, deaf, etc.—isn’t good enough and that they have to put on a mask to conform.”

Marie:

“I agree with DuBois. And doctor, you know as well as I do that there’s no scientific evidence that most children with implants will be able to understand spoken conversation. There’s no good research. The ‘success stories’ are from a small percentage of children who do well and are paraded—much like in the early oral, speech-training days— for all to see. And the tendency to forbid sign language during the rigorous postimplantation training period strands children in a no-man’s land—still too hard-of-hearing to join in conversations with hearing people but unable to communicate with their deaf peers. You pay a big penalty for delaying language acquisition. In addition, you also ostracize them from the Deaf community and culture. Cochlear implants for deaf children are unethical!”

Shirley scowled and makes eye contact with Dr. Implant and Alex who are shaking their heads. Aunt Doris and God look confused. Tommy:

[to God] “Do you have a cochlear implant?”

God:

“What do you think?” came God’s knee-jerk response. A well-known face-saving device among gods when they don’t know an answer.

Shirley:

“God doesn’t need an implant. But for deaf people, implants help them become more of who they are or could be! They’re able to learn English better, to write better, to know the meanings of idioms like ‘splitting hairs,’ to be more successful …”

DuBois:

“I mean no disrespect to the proponents of cochlear implants and for that matter, toaster ovens [looks at Aunt Do-

9.

DOES GOD HAVE A COCHLEAR IMPLANT?

337

ris and God]. Black people, like Deaf people, have been taught that they will not succeed in American society if they are fully and freely themselves. This suppression of Black rage—reducing ‘the boiling to a simmer’—tends to reduce the tragic to the pathetic. After playing the role and wearing the mask in the White world, they may accept the White world’s view of one’s self. And as I said before, a cochlear implant is a fancy mask for Deaf people to fit into the hearing world; it prevents them from being fully and freely themselves.” Harlan:

Leo:

“I agree. Too often, help from hearing people, including the good doctor [looks at Dr. Implant], is given with a mask of benevolence.” “Oh Harlan! I was hoping you’d come.”

Shirley:

“Oh, joy!” Shirley sighed.

Harlan:

“I would have come sooner, but the traffic from NU [Northeastern University] was terrible. Let me read to you a statement that was issued by the Canadian Deaf Association: ‘The Deaf community views the use of surgery which prevents a child from developing within the [Deaf] cultural minority to be a form of genocide prohibited by the United Nations Treaty on Genocide. Cochlear implants on young healthy deaf children is a form of communication, emotional, and mental abuse’” (Canadian Association of the Deaf, 1994).

Shirley:

Leo: Shirley:

“Genocide! Are you nuts! I don’t know whether to laugh or cry at such a crazy, idiotic, and pathetic view. Giving Tommy a gift of having every possible chance to succeed is genocide? The Deaf community should get its head examined! I’m simply trying to help Tommy …” “Calm down, dear. Try some sushi.” “You can take that sushi and … I’m not going to sit here an listen to these idiots accuse me of abusing and killing my son. I don’t have to apologize for being hearing and I certainly don’t have to apologize for helping Tommy function in the hearing world!” She takes a deep breath and thinks for a moment.

338

HARVEY

“Let me be clear about my position. The Deaf community’s view is absurd at best. I can only understand it in one aspect. Deaf culture represents one possible adaptation to deafness. Cochlear implants are another possible adaptation. Deaf people should be able to freely choose the kind of adaptation they want to make, whether it be to get a cochlear implant or join the Deaf culture. And we parents of deaf children have a right, and an obligation, to choose what kind of adaptation we are prepared to support on behalf of our children! And for deaf children like Tommy who already know a spoken language, cochlear implants is a Godsend!” Dr. Implant:

“You’re absolutely right, Shirley! The rights of parents are of the utmost importance when the medical profession discusses what’s best for their children. Informed parents know that a cochlear implant will help their child to participate more fully in their family life and their community. It will enable parents to give more of themselves to their child. All parents have the right to want their child to be an extension—a reflection—of the good parts of themselves. After all, that’s what being a competent parent is all about!”

Marie:

“Wait a minute, doc, do you truly believe that all parents have the right to decide what is best for their child?”

Dr. Implant:

“Why, of course! We in the medical profession firmly posit that parents not only have the right but have the obligation to make medical decisions for their children.”

Marie:

“Okay, extending your logic then, deaf parents of hearing children have the right to come to you and request that you make their children deaf by removing their cochlea. Isn’t that correct? It must be if you propose that parent have the right to decide these matters. These parents would be fully informed; and, as Deaf parents, they—as you just said— are naturally interested in their children participating more fully in their family life and community. In your own words, ‘They have the right to want their child to be an extension—a reflection—of the good parts of themselves.’”

Dr. Implant:

“That’s absurd! That means I should take out the eyes of sighted children born to blind parents, right?”

Marie:

“It depends on your bias. Eight-year-old Tommy over here is biracial, having a Black father and White mother. If it were medically possible, would you consent to Leo and Shirley requesting you to make him all White or all Black?”

9.

DOES GOD HAVE A COCHLEAR IMPLANT?

Dr. Implant:

Alex:

339

(stuttering while her face turns red) “Now, wait a minute young lady. Deafness is a medical problem that ought to be cured. It’s not like being Black or White! If a device were invented that could help visually-impaired children see even a little bit more, who wouldn’t want one for their child?” “I agree!”

Marie:

“But I’m Deaf, and my experience is that being Deaf isn’t a disability. Deaf people don’t need to be fixed! You don’t see Deaf adults lining up to get implants. Cochlear implants are dangerous and experimental!” Harlan nods his head in agreement.

Mike:

“I must say that we hearing people need to accommodate and be mindful of cross-cultural ethics. They’re vital to—”

Tommy:

“Don’t be so self-righteous, Mike! Why did you react acerbically at the hospital clinical meeting when Neil corrected himself for using an English idiom?”

Mike:

“What does acerbically mean?”

Tommy:

“It means with acrimony, tartness, anger, being pissed off. Like how I feel when my mommy makes me go to bed early.”

Mike:

“I see. Hmm, I don’t know.” [My voice softens.] “I pride myself for my cross cultural sensitivity; but admittedly, my reaction at the hospital wasn’t exactly sensitive.” [Thinks for a moment.] “Maybe it has to do with my ‘delusional fantasy’ that by simply including a skilled interpreter—a so-called ‘reasonable accommodation’— fairness and accessibility will automatically be taken care of, without my constantly having to expend the effort.”

Tommy:

“Uh, uh, so you have feelings about being ‘put out’?”

Mike:

“Well, yes and no. I don’t like to admit it. But maybe I do, at least on a bad day.”

Tommy:

“And if we deaf folk undergo surgery for implants, you hearing people might be put out less. We’re getting treated in order to ameliorate the discomfort of you hearing people. Disabled people put a blemish on society, so the solution is to mask the disability.”

340

HARVEY

Mike:

“You’ll understand it more when you grow up.”

Tommy:

“That’s a non sequitur and you’re being circumlocutory. FYI, that means evasive.”

Mike:

“I know that!” (a lie, but I’m feeling competitive with this 8-year-old Einstein). “But I don’t totally feel put out. There’s a big part of me that’s more than willing to accommodate. Like everybody else, I have a dark side.”

Tommy:

“Mike, I believe you’re getting defensive. This is basic psychology of hearing people.”

Mike:

“I’m not defensive!” I respond defensively.

Tommy:

“You should be aware of your dark side without pretending it’s not there; and, naturally, try to keep it in check. But don’t worry, doc. Even I have a dark side. We all do.”

Shirley:

“That’s right, dear. And Deaf people have dark sides, too. For one thing, they’re overly critical. I’m sick and tired of the Deaf community thinking they know all about raising deaf kids. It’s not easy for parents to make these decisions but it’s easy for deafies to criticize us! Among other things, they should learn some manners!”

People across the restaurant are looking in our direction. The manager is walking toward our table. And then, the treatment team meeting ends. So does my dayream. One week later, Leo and Shirley appeared for their appointment and took their respective places in my office. Their seating arrangement hadn’t changed. However, this time Shirley began: “So Mike, what’s your opinion about Tommy getting a cochlear implant?” I was tempted to evade her question, as I had done with Tommy. But it would have been cowardly and clinically irresponsible. It was a fair question and merited an honest response. First, I summarized the anti-implant and pro-implant positions as they were espoused in my daydream at the team meeting. I attempted to give a balanced presentation. “So what do you think?” Leo persisted. He was not about to let me off the hook. “Personally, implants for kids scare me. The research documenting their effectiveness isn’t in yet and there are risks. So I think the jury is still out, at least in my view. But one thing I’m sure of: You need to have and understand all the relevant information. And that’s easier said than done.”

9.

DOES GOD HAVE A COCHLEAR IMPLANT?

341

My goal was to ensure that both Leo and Shirley gave informed consent if they decided to go ahead with Tommy’s implantation. As a start, they had already indicated their thorough understanding of the medical risks. But it was unclear whether their expectations were realistic. What exactly did Shirley mean when she said “I know Tommy’s never going to be completely hearing even with a cochlear implant?” Anecdotal reports and advertisements are often misleading. For example, the headline of one article in a prominent newspaper was “Implant Helps Man Hear Again.” The implication was that the man could function as a hearing person. A brochure for a 22-channel implant system touted a long list of benefits: Many children can distinguish among different speech patterns; “after training and experience with the device, many children demonstrate improvements with speech;” and that “The most significant benefits noted by respondents … were one-on-one communication, feelings of safety, reduced stress level, and ability to socialize.” (Cochlear Corp., 1994)

What such advertisements purposely leave vague is whether one would be able to detect or understand speech, and under what real-world conditions. Tests of speech discrimination are often conducted in laboratory settings under optimal acoustic conditions and are limited to multiple-choice word lists (Pollard, 1998, personal communication). As psychologist Robert Pollard noted, Such misunderstandings [overrating the effectiveness of cochlear implants] can result in overly optimistic expectations. Parents reading an implant brochure touting huge increases in hearing may not realize the difference between ‘hearing’ as sound awareness and ‘hearing’ as the ability to understand conversations. When they see a child talking on the telephone on a brochure’s cover, they may immediately assume that their child will enjoy the same outcome. (Clay, 1997)

Thus, in conducting psychological evaluations for potential implant users, Pollard gave his approval only to adults or parents who can demonstrate full understanding of implants’ limitations and the substantial variability of their effectiveness (Clay, 1997). After several meetings with the audiologist and surgeon, both Leo and Shirley seemed to understand the limitations of an implantation. They agreed that, although it would help Tommy detect sounds and improve his speech discrimination somewhat, he would not understand individual, and particularly group, conversations as a hearing person would. And they acknowledged that the effectiveness of an implant for Tommy could not be predicted with a high degree of certainty. There was a vital remaining component of their informed consent, however. With deliberate emphasis, I said to Leo and Shirley, “In my strong opinion, you shouldn’t make a decision until you can clearly envision the no-treatment option.”

342

HARVEY

“What do you mean?” they asked in unison. “I mean that you recognize what possibilities there would be for Tommy if he doesn’t receive an implant; whether you envision him as being able to become a happy, fulfilled contributing member of society as a nonimplanted Deaf person.” Pollard referred to this component as phenomenological informed consent. In his words, this is “the candidate’s or family’s understanding of what life with hearing loss is really like for most people, especially those who make satisfactory adjustments to deafness without implants. Parents need to have a realistic appraisal of what the ‘no treatment’ option means: namely, what normal deaf life without implants is like” (Clay, 1997). Thus, my role in the next phase of my work with Leo and Shirley was as a guide, or a sort of matchmaker. I encouraged them to meet local nonimplanted leaders from the culturally Deaf and oral-deaf communities as well as various nonimplanted deaf professionals. They would bring Tommy to some of these meetings and to many Deaf community gatherings. I suggested that they visit a bilingual, bicultural Deaf school, such as the Learning Center for Deaf Children in Framingham, Massachusetts. I also gave them a reading list and videotaped presentations by accomplished deaf adults who have not received implants. My goal was to drive home the point that Deaf persons do not need cochlear implants to be successful. Connecting clients with relevant community members is a common intervention of cross-cultural work. Wax (1996) described the advantages of including key people in the Deaf community as part of the therapeutic work, particularly those who also know about the hearing community and its resources. These people can then serve as “culture brokers”: they facilitate a client(s) gaining important resources and knowledge from both the Deaf and hearing communities. In Shirley and Leo’s case, this intervention would also join them together in conducting what might be called crosscultural research. I imagined their project’s title would be “Cochlear Implantation: Biomedical and Deaf Cultural Perspectives.” Several months later, Tommy and his parents arrived for their final session. Leo and Shirley announced that they had done their homework and had enjoyed it. They had met some “intriguing, bright, capable deaf adults.” And Tommy talked about the “cool” ASL fairy tale videotapes that he saw and a recent performance by National Theater of the Deaf. Both he and his parents reported that they were enthusiastic about learning to sign, regardless of whether Tommy got an implant. Their positions hadn’t swayed significantly. Tommy decided that it would be cool to have “bionic ears.” Leo was leaning slightly toward the no-implant option, and Shirley remained steadfast in her wish to “give our son every possible chance to be happy and successful.” But I was very pleased to see that both of them had become able to truly give their informed consent to whatever option they would chose.

9.

DOES GOD HAVE A COCHLEAR IMPLANT?

343

We bade each other a fond goodbye. And on the way out, Tommy gave me another drawing of an implanted Casper. Several months ago, I got a card from the proud family. They had decided to go ahead with the implantation and it had gone well. Tommy was applauded by everyone for his motivation with postimplant aural rehabilitation services. And the family was taking sign language classes. They were “cautiously optimistic” about the total outcome. I often think about the psychological and cultural shifts that Tommy undoubtedly experienced, even at his young age. First, he had normal hearing until the age of 6 when he incurred a profound hearing loss. Then, for the next 2 years, while his parents struggled with whether or not he should have a cochlear implant, he began to become acculturated to deafness and to learn sign language. Finally, he was implanted and began aural rehabilitation while his parents took sign language classes! It should be noted that Tommy’s is not the classic case that many deaf advocates would oppose, because he already had a first language and was largely enculturated into the hearing culture. These three “modes of being” shaped Tommy’s experience of himself and his world; first as a hearing person; then as a newly acculturated Deaf person; and finally in some gray area in between. His identity, of course, is also inexorably related to his being a product of a biracial parents. I look forward to hearing from Tommy as to which modes of being he finally chooses: deaf, hearing, Black, White. I also often think of my internal process as a therapist for Tommy’s family. The psychology literature describes three important dimensions of culturally affirmative psychotherapy: self-awareness, knowledge, and skills (e.g., Glickman, 1996; Pedersen, 1988, Sue & Sue, 1990). Although to some degree, this chapter has illustrated the knowledge dimension—specifically in regard to the medical-model verses Deaf-cultural model controversy surrounding cochlear implantation—to a much larger degree, I have focused on the dimension of self-awareness. As Sue & Sue (1990) aptly put it, [the therapist must become] aware of his or her own assumptions about human behavior, values, biases, preconceived notions, personal limitations and so forth. They understand their own world views, how they are the product of their cultural conditioning, and how (they) may be reflected in their counseling and work with racial and ethnic minorities. (quoted in Glickman, 1996, p. 8)

Recognizing and managing one’s countertransference issues is thought to be particularly important when working with any cultural minority population. In regard to Deaf persons, Sussman and Brauer (1999) wrote that “the extent to which countertransference is managed depends on a therapist’s clinical astuteness, understanding of deafness and its cultural aspects, and, of course, sign language competency.” I would add to their list the vital importance of the ancient Greek and Hindu advice to “know thyself.”

344

HARVEY

Knowing oneself is a never-ending challenge. Indeed, at least in my case—as well as many of my colleagues—achieving clarity about my countertransference reactions—or “conditioning”—to complex topics such as cochlear implantation, necessarily occupies much of my thoughts and, as the reader may discern, some of my fantasy life. After all, in fantasy, one can “try on” different professional and unprofessional scenarios and finally arrive at a course of action that feels ethically and clinically sound. In my opinion, we therapists need such opportunities, whether in our private thoughts or behind closed doors. There is a true story that took place in a well-known trauma clinic: Every week, the professional staff “vented” for 1 hour, behind closed doors and only among themselves. One day, they imagined that one particular man— who had raped his 2-year-old daughter—was standing in front of them while they shot obscenities at him; an extreme example to be sure. Although their behavior may be seen as unprofessional and judgmental, it is my belief that these clinicians were correctly aware of the need to first discharge and examine their human reactions. Then they could think, feel, and act professionally with real clients. After the staff completed their fantasized abuse of the man, they could look at his pain and humanity, feel compassion, and be ready to appropriately help him. As culturally affirmative therapists, our first task is to acknowledge our “politically incorrect” feelings. Our next task is to get past them. If therapists do not first acknowledge and then process our countertransference feelings, we will almost inevitably act unprofessionally. This is particularly important with cross-cultural work such as that between hearing therapists and deaf clients. And more to the point of this chapter, self-awareness is critically important when a therapist strives to do “culturally affirmative therapy” in the face of a client’s culturally disaffirming behavior. One night, as I was working on this chapter, I had another daydream. Tommy:

Mike: Tommy:

Mike: Tommy:

“Mike, there’s something else I’ve been wanting to ask you.” “Go ahead,” “Okay, I understand that you don’t have to be unbiased during daydreams. But were you unbiased while you were helping my parents decide whether or not to get me a cochlear implant, given that it can be categorized—as you delicately put it—‘culturally disaffirming behavior?’” “I tried to be, as much as possible.” “In other words, you were not unbiased.”

9.

DOES GOD HAVE A COCHLEAR IMPLANT?

Mike:

345

“Let me say it more precisely. I tried not to allow my biases to overly influence the treatment. But one cannot not have biases. I have humbly learned that I am inevitably conditioned by my status as a hearing, White, middle-class, middle-aged, heterosexual, Jewish, male (Harvey, 1993). One cannot not be oppressive sometimes, as you correctly pointed out to me earlier. The trick is awareness and management. With your parents, I had to own my biases. I put them ‘on the table.’ Hiding behind reflective listening or evasion would have been dishonest. My primary task, however, was to be open to their choosing an option for you that is discordant with Deaf culture. That’s my bias. But I knew you wanted an implant. And ultimately both of your parents agreed. And to be honest, I too have seen positive results with implants, leaving a subset of both children and parents nothing but thrilled and grateful. But the results are quite variable. And to take it a step further, I can’t help but be scared that someday humankind will have the capability of eliminating deafness and a host of other differences that society deems undesirable, of selective breeding and of cloning so-called ‘desired traits’. Where will it all stop? It gives me the heebie-jeebies.”

Tommy:

“So how did you keep your biases from polluting the treatment? I’m sure you’ve read about surrogate decision making (Lane, Hoffmeister, & Bahan, 1996): ‘Parents should be especially cautious in weighting their views of childhood implantation more heavily than the views of the DEAF-WORLD, because they are naturally advocates for their language and culture’ (p. 402). That goes for you, too, Dr. Harvey! And don’t tell me, ‘You’ll understand when you’re older’.”

Mike:

Tommy:

“I know better than that now. Well, I had to keep reminding myself that it wasn’t my job to make the decision for you and your parents; only to make sure they understood all the relevant information and knew their own minds well enough so that they could make a competent, well-informed choice. This meant them having a thorough understanding of the medical risks; of the limits and uncertainties of any benefits; and of the capabilities of nonimplanted deaf people.” “Even though you had a strong bias?”

346

HARVEY

Mike:

“Absolutely. But, again to be frank, my biases don’t seem so set in stone anymore. I used to be much more sure of right–wrong issues when I was younger. Now I find myself not knowing as much as I used to.”

Tommy:

“Could it be dementia, or have you just become wishywashy?”

Mike:

“No, Tommy. And I’m sorry to have to say this to you, but you will understand it when you get older. While at one time, generalized, definitive issues were black and white, now they come in many shades of gray. On the one hand, it seems self-evident that parents have the right to decide what’s best for their children. But what about abusive parents? In that case, our laws protect the rights of those children against their parents. Okay so far. But how do we define abuse? Excessive hitting or food deprivation are relatively easy criteria. What about the balancing act that parents do between imparting their own values to their kids—molding them in their own image—and acknowledging and nurturing their kids’ individuality and differentness? What’s not enough, what’s too much? You and your parents agreed to impose their hearing values and help make you less ‘hearing-impaired’ via implantation. But they could have opted to helped you relish your differentness as a deaf person. Did they do the ‘right’ thing? Again, suddenly things aren’t so clear anymore. In the last several years, I’ve met many implanted deaf adults and deaf adolescents who are devastated by failed expectations, medical problems arising from the surgery and ostracism from the Deaf community. On the other hand, I’ve met many others who view their implants as your Aunt Doris views her new toaster oven, as a gift from God! To them, it ‘levels the playing field,’ much like the Deaf Unit avoiding hearing-based idioms. So I still have my own opinion, but I don’t take it as written in stone the way I used to. Thankfully, I don’t have to make that decision for my children; other parents do.”

Tommy:

Mike:

“So maybe this is a good time for me to ask you once again: Does God Have a cochlear implant?” “How do I know! Go ask your Aunt Doris.”

9.

DOES GOD HAVE A COCHLEAR IMPLANT?

347

REFERENCES Biderman, B. (1998). Wired for sound: a journey into hearing. Toronto, Canada: Trifolium Books Inc. CBS Television News. (1992, November 8). 60 Minutes. Canadian Association of the Deaf. (1994, January 25). Press Release. Clay, R. (1997). Do hearing devices impair deaf children? American Psychological Association. 28(7), 29–30. DuBois, W. E. B. (1994) The souls of Black folk. New York: Dover Publications. Cochlear Corporation. (1994). Issues and answers: The nucleus 22 channel cochlear implant system. Gates, H. L., & West, C. (1996). The future of the race. New York: Vintage Books. Glickman, N. S. (1996). What is culturally affirmative psychotherapy? In N. S. Glickman & M. A. Harvey (Eds.) Culturally affirmative psychotherapy with deaf persons. Mahwah, NJ: Lawrence Erlbaum Associates. Harvey, M. A. (1993). Cross-cultural psychotherapy with deaf persons: A hearing, White, middle class, middle aged, non-gay, Jewish, male, therapist’s perspective. Journal of the American Deafness and Rehabilitation Association, 26(4), 43–55. Kuhn, T. (1970). The structure of scientific revolutions. Chicago, IL: University of Chicago Press. Lane, H. (1992). The mask of benevolence. New York: Alfred A. Knopf. Lane, H., Hoffmeister, R., & Bahan, B. (1996). A Journey into the Deaf world. San Diego, CA: Dawnsign Press. Pedersen, P. (1988). A handbook for developing multicultural awareness. Alexandria, VA: American Association for Counseling and Development. Sue, D. W., & Sue, D. (1990). Counseling the culturally different (2nd edition). New York: Wiley. Sussman, A. E., & Brauer, B. A. (1999). On being a psychotherapist with Deaf clients. In I. W. Leigh (Ed.) Psychotherapy with Deaf clients from diverse groups. Washington, DC: Gallaudet University Press. Wax, T. M. (1996). Mental health service and the Deaf community: Deaf leaders as culture brokers. In N. S. Glickman & M. A. Harvey (Eds.) Culturally affirmative psychotherapy with deaf persons. Mahwah, NJ: Lawrence Erlbaum Associates.

Epilogue: When the Therapist is Deaf Sanjay Gulati Harvard Medical School The American School for the Deaf Westborough State Hospital

I am late-deafened, and a late learner of American Sign Language. Patients usually respond well to my hearing loss and ability to sign. Rarely does one request a sign language interpreter.1 Nevertheless, when a fluently signing Deaf person sees me, a late learner of his native language, he alters his communication subtly. He slows his finger spelling. He uses fewer ASL idioms and more English ones. He resigns himself to repeating a sentence here and there and to the occasional paraphrasing I use to make sure I’ve understood correctly. He knows I will, at times, be distracted from understanding him as I work to understand what he said. Deaf people are often adept at matching the language of their conversational partners. Few hearing people have such patience or kindness—most take fluent communication for granted, and become frustrated quickly when it requires effort. Sadly, my native-signing clients know from the outset that they will not have perfect communication with me, an issue that never arises when a hearing therapist works with a hearing client. By contrast, having lived with a progressive hearing loss for 20 years, it is much easier for me to connect with hard-of-hearing patients. I know when one misses something, or fakes comprehension with a nod or smile. I can guess when she is tired and we should take a break. I’m ready to laugh at the inevitable breakdowns in our communication—two hard-of-hearing 1

I frequently request the assistance of a Certified Deaf Interpreter for clients who are not fluent in ASL or Pidgin Signed English, and for those who are psychotic, brain-damaged, or significantly language deprived.

349

350

EPILOGUE

people in conversation inevitably misunderstand each other. The conversation then dissolves into confusion or comedy. (Hearing comedians frequently choose hard-of-hearing people as targets of comedy: “eh?”) I feel confident confronting a hard-of-hearing patient when necessary with the negative consequences of her communicative behaviors, whether it is an adolescent who is uncomfortable asking a teacher to repeat something or an elderly person who refuses to wear hearing aids. I also feel confident empathizing and helping the patient move from anger to acceptance—I’ve been there myself, and know the terrain. I’m audiologically deaf. Along the way, I’ve experienced the entire range of being hard of hearing, from mild to profound. Years of involvement in the culturally Deaf world, both socially and professionally, have added another layer of knowledge and identity to my being. I’ve experienced deafness as a loss: I remember giving away music that I could no longer enjoy hearing. I’ve also experienced it as a gain: The feeling of peace and of belonging that I feel when arriving at a deaf institution is as mysterious as it is profound. Every other deaf therapist has his own unique multidimensional history and identity. Since each client is equally complicated and unique, there can be no such thing as a generic cultural affirmation. This epilogue explores what happens when the therapist is deaf. I hope it illuminates cultural affirmation from within—when the therapist is deaf, cultural affirmation shifts from a black-and-white issue of cross-cultural competence to a more shaded issue of what might be called intra-cultural competence. I performed a series of interviews with deaf clinicians with a broad range of backgrounds, who were in a variety of mental health settings. I then organized quotes from the interviews around the main themes that arose. Although I have disguised case material to protect the clients’ and therapists’ confidentiality, I have otherwise left the quotes intact and unadorned, to allow the interviewees as much as possible to speak for themselves. The subject considered here is not new, and has been explored in a more formal manner in Culturally affirmative psychotherapy with deaf persons (Lytle & Lewis, 1996; Zitter, 1996) and Mental health assessment of deaf clients: A practical manual (Elliott, Glass, & Evans, 1987). My hope here is to give a more personal treatment, highlighting the depth of the interviewees’ perceptions and the spirit they bring to their work. SHOULD DEAF CLIENTS ALWAYS HAVE DEAF THERAPISTS? Three viewpoints express the range of opinion: “Yes. I expect the hearing person to apologize for not being deaf. I love the hearing therapist who is always humble, who starts out by saying, ‘my signing is lousy.’ I apologize myself to visual/gestural clients that I might have trouble understanding … I want the hearing therapist to recognize that he is

EPILOGUE

351

taking a job from a deaf person. I want to him say openly that he would give it up if a qualified deaf person came along … No, I don’t want all the staff in my agency to be deaf. We should have a few sensitive hearing staff to use as examples, and for clients to use to practice hearing-world skills.” “On the cultural competence of deaf versus hearing therapists—our goal is to be able to ‘hear’ and understand the deaf client with a minimum of distortion. One could use an analogy of hearing aids; in this case, hearing therapists are the deaf ones! They bear the responsibility of obtaining a ‘hearing aid’ (knowledge of what it means to be deaf). They must regularly work to renew and reinforce that knowledge, kind of like replacing batteries. With this in place, they are better able to hear deaf people. Even so, there is something artificial that they receive through their hearing aids. It is not the same easy, natural understanding that deaf therapists possess. Can it be done? Yes! But it is an additional burden on the hearing therapist, another layer of complexity to be worked through before he is able to join with his client.” “Should Hispanic patients only see Hispanic therapists? Women only see women? Deaf only see deaf? Of course not. The first rule is that the therapist needs to be a good therapist … You can be the most fluent signer in the world—deaf or hearing—but be a cold person, and you won’t have clients … I tell hearing therapists, ‘Don’t apologize because you are hearing. Don’t pretend that you can understand 100%. Instead, take the attitude that, you’re right that I can’t know exactly how things are for you, and that I might be an oppressor myself. But I will try to understand you to the best of my ability.’” Interviewees listed the following advantages for deaf clients who have deaf therapists: • “With a deaf therapist, clients may feel they can express themselves more freely. They don’t need to worry that normal traits related to deafness or hearing loss will be construed as pathology.” • “I want to say there is immediate empathy, but that’s not exactly true. Maybe one of us was mainstreamed and the other attended a residential school. But we can both identify over what it was like to have grown up in a hearing family.” (The issue of matching or clashing language and culture is explored later in this list.) “My experience with deaf adults has been that the trust and comfort level is definitely higher from day one—there is less deference, less power difference. Little kids don’t really seem to notice. They like me ’cause I listen to them, and like them.” • The client can safely assume that the therapist has some type of knowledge about the deaf experience. “Too often, deaf clients feel that they have to teach their hearing therapists about the deaf experience.” As another interviewee put it, “my clients are tired of paying for this privilege.”

352

EPILOGUE

• The therapist immediately becomes a role model, living proof that deaf people can be successful. “The healing has already begun the moment the client realizes that I too am Deaf.” • ADeaf therapist might be better able to hear and understand Deaf rage, “without interrupting and taking the conversation somewhere else.” “A client might complain, ‘I didn’t get the promotion because I’m deaf, and using the telephone was an issue,’ and the deaf therapist can honestly say, ‘I know what it’s like.’ Sometimes you do have to be deaf to understand.” The client might feel more able to express anger at the hearing world, not needing to be concerned about protecting the hearing therapist’s feelings. “We can be blunt together about the negatives of the hearing world. We can share our cycle of engaging with hearing people and then needing a break. A hearing person trying to work with this kind of stuff would have trouble being nonjudgmental.” • Deaf therapists can use Deaf humor. “It’s like Jewish culture, in which humor is used to help defend against the horror of the history of persecution and pogroms—humor as a survival tool.” (As an example of this function of Deaf humor, consider the deaf mother who told me, “People ask if I have children. I answer, yes, I have two children. They’re both profoundly hearing. I love the rise that gets out of hearing people!”) • Deaf therapists can also utilize the cultural feature of the open expression of feeling through facial expression and body movement. “The most subtle body movements and gestures go right over the heads of hearing therapists, but can give away the whole story to a deaf therapist.” Clients can find it profoundly healing and validating to sense that they are allowed to be themselves culturally with a deaf therapist. One interviewee told the following story. “A client who was known for her anger seemed to me to have a lot to be angry about. She had grown up orally, and acquired ASL later, which then became her primary language. One day I was in the room with her when she began heating up. She stood up, and role-played a situation that had made her furious. She pushed me firmly on the arm. I understood this as communication, not as a threat. If she had pushed a hearing therapist, it might have been seen as a boundary violation. On the other hand, if she were not permitted to do this, she would not have felt able to communicate fully—the body language was part of the communication. When I told my outpatient team about this later, they asked if I had felt scared or endangered when she pushed me. I didn’t, but I think that was hard for them to understand.” Another said, “it’s true. If Deaf people are upset they show you. Hearing people raise their voices; Deaf people stand up and show you. I had one client who banged her cane so hard that I heard it and jumped—but she wasn’t aware of that, and she didn’t mean to be threatening.” A third therapist admitted having had a dramatic client in her office “almost hit-

EPILOGUE

•

•

•

•

353

ting me, but I knew it was just role play.” Although she had felt completely safe, and would allow the same thing again, she did not feel that she could tell her hearing colleagues about it. Deaf therapists can take advantage of Deaf cultural interpersonal bluntness, which might seem rude to hearing people. “I had a client once when I worked on an inpatient unit who said, ‘I can’t get up because I’m deaf.’ I lost it! ‘I got up at 5:30 this morning,’ I told her, ‘and so can you!’” Bluntness was recognized as particularly beneficial to personality-disordered clients. “I remember one case where I had a hearing cotherapist who was so enamored of the client’s beautiful signing skills that she completely missed the client’s narcissism. I could see how she was ‘feeding’ the client’s narcissism, and was able to do something about it.” Deaf therapists, on average, have better signing and communication skills than hearing “deafness therapists.” Deaf therapists are often far more skilled at working with patients who are immigrants, are from Deaf subcultures such as Hispanic Deaf, who have language deprivation, or who have language disorders (this issue is considered in more detail later on). Deaf therapists are more likely to have a wide experience of Deaf people, and therefore to be able to make more precise judgements about their clients’ mental states based on their language and behavior. They can also make use of shared knowledge about the Deaf community, such as local deaf athletics, theater events, or politics. “An incompletely culturally deaf child, for example one with hearing parents, may never develop the body language or expressions, and may be difficult to read. This has to be distinguished from withdrawal due to a mental illness, or decreased interest in life due to depression. I look into the client’s background to try to assess this.” One therapist felt that the experience of surviving a traumatic upbringing as a deaf person “helps me work with survivors of other types of trauma.”

On the other hand, one can imagine a situation in which a hearing therapist is better suited to work with a deaf client: • The hearing therapist may be a specialist in an area in which no deaf therapists are yet available. For example, “I had a client with OCD who chose to go to an OCD clinic with an interpreter rather than working with people who don’t specialize in his condition.” This is a problem with which every minority group struggles, and is clearly a conditional, real-world advantage; given the choice, the deaf person would likely choose a deaf-accessible OCD clinic over a hearing one. • Hearing therapists may have greater access to education or continued education in their work. They may be able to bring experiences from

354

EPILOGUE

work with a broad range of hearing clients into their work with the deaf (one hearing therapist said, “I became a much better therapist when I took some time off from deaf patients and worked mainly with hearing.”) • A hearing therapist might offer the deaf client a different type of validation—from across the cultural divide. Consider the analogous case of a White adolescent who held strong racist beliefs when he was first placed at a residential school. The program director addressed the student’s beliefs by suggesting that he attend a Black church every week. Scornful and angry at first, the student’s attitude softened over a period of months, until he realized that he loved the Black church and the people he had come to know there. At that point he consciously gave up his racism with a deep sense of having grown to be a better person. It can be argued that no White person could have as effectively helped this student as the Black man who was willing to take the student into his church every week. “With a hearing therapist, deaf clients can test their sense of themselves ‘in the hearing world.’ They can get information about how the hearing world functions. They can check on assumptions—‘am I paranoid to think this, or could it be real?’” • Hearing therapists may be able to connect better with hearing family members. They can serve as models of respect for deaf people, language, and culture. • Hearing therapists may not be prone to certain countertransferences that deaf therapists must master; but of course they will be prone to their own. See, “Is there a psychology of the hearing?” (Hoffmeister & Harvey, 1996). In summary, interviewees were conscious of having an array of advantages in their work with deaf clients. They saw a rich question of skills, experience, knowledge, feelings, and the particular personalities of the client and therapist. The ideal situation might be for each deaf client to have a wide choice of therapists, deaf and hearing. Sadly, this is rarely possible, which places an extra pressure on those deaf therapists who are available. The pressures and problems deaf therapists face in their work are considered next. OBSTACLES AND RESPONSIBILITIES “My Work is Three Times Harder.” Comparing her work with that of hearing colleagues who see hearing clients, one interviewee declared, “my work is three times harder than theirs.” The special difficulties experienced by deaf therapists can be divided roughly into two categories, obstacles and responsibilities.

EPILOGUE

355

Obstacles include: • Lack of internal resources in the therapist’s agency. A therapist who works at a clinic that serves both deaf and hearing clients says, “the hearing clients have their choice of many therapists. At my agency, the deaf clients’ choices are limited to exactly three.” Many agencies, of course, have just one or two therapists who work in deafness. “We have to be so creative about resources. Working through interpreters is harder and is expensive.” • The lack of external resources for one’s clients, such as accessible inpatient care, independent living services, parenting education, residential programming, day programming, job support, and a network of other deaf therapists to whom to refer clients when needed. This is one of the most serious concerns that everyone who works in deafness faces. “At times I feel forced to work in areas I don’t feel competent in, simply because there is no one else to do it. I also find myself doing a lot of the follow-up and social work, again because there are so few local agencies willing and equipped to work with deaf people.” “Hearing support agencies require education on deafness and advocacy on communication issues. The deaf support agencies lack resources—I often can’t get services when I need them.” • “My network is not wide. Patients come from far away, and when they need collateral help, I end up making phone calls trying to find services in their area. I had a case where deaf parents needed a local therapist for their hearing children—so I had to make calls to another state, where I didn’t even know who I was recommending.” • The potentially enormous amount of time involved. “Ahearing therapist only needs to find out, from curiosity, where the person went to school. A deaf therapist has to find out how much hearing the person had at each age, the philosophy of each school he attended, how good the interpreters were, whether he used hearing aids, how much support he had growing up, etc. And it’s like that for every part of the psychosocial history!” Gathering information takes longer. Language issues, the lack of past records, poor personal health information, and communication with collateral providers all take more time. “We share the TTY. The relay is slow. I have to share the interpreter with other deaf staff … I estimate that one deaf client takes me as much time as two hearing clients require from a hearing therapist.” • “Clients are often getting services from multiple agencies located in different geographic areas. Coordinating and getting them to agree is almost impossible.” • Deaf therapists face the problem that mental health programs may see them as less flexible, because they generally will only work with deaf clients. Therefore, deaf therapists may be discriminated against in hiring, potentially reducing the number who are available to deaf clients.

356

EPILOGUE

• Deaf therapists have greater difficulty finding continuing education, developing areas of expertise, and receiving appropriate supervision and mentoring due to communication barriers and lack of experts who can help them to grow. • “Dealing with hearing family members is harder.” • For better or for worse, “the Deaf community has a rating system for therapists. It’s a small community, and word gets around. There might be times that you need to work with the prejudices within the deaf community—get ready for your name to be dragged through the mud! Or a client who is angry with you might tell every other Deaf person around what a lousy therapist you are.” Responsibilities include: • “Expectations are higher. I have to be linguistically competent, culturally competent, fully educated in the history and traditions of deaf culture, and be a good therapist who is ready to experience vicarious trauma.” “I constantly get well-meaning but painful pressure to get more education and be more specialized. I’m expected to sell myself. What if that’s not me, to be so ambitious?” Neil Glickman, this volume’s co-editor, noted that “the agency’s ignorance about deaf people and the lack of other resources often mean the deaf (or signing) therapist needs to be all things to all deaf people, an impossible task.” • “A deaf therapist needs to have a skill like a Certified Deaf Interpreter, of taking in a huge amount of information and holding it, because you have to maintain eye contact. You can’t look down to write a note. You have to have ‘chunk memory.’” The deaf therapist always writes notes after a session, never during it, as many hearing therapists can. • “You’re the one a child will tell that he is being abused, so you’re the one who has to file with the Department of Social Services, and take responsibility for the child’s needs. Then you have to put up with the fact that DSS screens out 9 out of 10 calls you make; you know the system isn’t serving your clients well, so DSS doesn’t feel like the safety net its supposed to be.” • “You have the burden of undoing previous therapies with hearing therapists that have not worked, and which led the client to distrust therapy.” “Many deaf people have had hearing therapists before, and because of that, they simply won’t talk.” “A hearing therapist might not gauge his signing well. He signs too fast, and the kid feels he’s being yelled at.” • “I carry the burden of society’s view of deafness, on top of whatever other labels I have, such as my religion, my gender, or my socioeconomic background.” • “With language-damaged clients, those not used to introspection, or those with knowledge deficits about mental health—and these make

EPILOGUE

357

up the majority of deaf clients—there’s so much work in interviewing. You have to think about how to ask a question to get a good answer.” “Cases like that are more difficult to manage, more likely to be in crisis, and less likely to provide the therapist gratification by improving quickly.” • “Being late-deafened means I serve as a link between hearing service providers and deaf clients at times. I am educating the hearing on deaf cultural norms, and educating the deaf on ’those weird hearing people!’ Both sides consider me to be ‘like them’—at least in comparison.” HANDLING THE LINGUISTIC AND CULTURAL MATCH BETWEEN THERAPIST AND CLIENT “There are Plural Deaf Cultures.” Interviewees described carefully assessing the linguistic and cultural match with each client. Skilled hearing therapists give a similar description (e.g., Zitter, 1996). Presumably, deaf therapists with a wider repertoire of linguistic behaviors, a wider experience of deaf people, and a broader base of deaf cultural knowledge can make more finely tuned observations and show greater flexibility when they establish communication and rapport with their deaf clients. Other comments on this subject: • “I don’t feel that I have to exactly match the client’s culture. But it is important for me to understand the patient’s culture. Is he Hispanic Deaf, Black Deaf, oral, late-deafened, more or less involved in the Deaf Community? I try to respect and be sensitive to each.” “I had a late-deafened client who was Asian, and her culture made it difficult for her to learn to sign, because she had been taught not to show such expressions.” • “If I can’t match the language—I invite a CDI to join me.” • “If I can’t match the culture, I name it, acknowledge the difference, and explore it within the therapy.” • “I know a lot about a client’s culture and language the moment I know where and when he was educated.” • “When assigning a therapist at my agency we try to match the client’s (cultural and linguistic) needs.” • “A deaf clinician educated in mainstreamed schools and then a hearing college might not have the body language and expressions herself.” The last comment reflects the diversity within the ranks of deaf therapists. Interviewees noted a difference in the typical communication and presentation of younger and older clients. “Some clients look hearing from years of exposure to oral environments, nonaccepting hearing people, etc. I

358

EPILOGUE

think the younger generation feels freed to show more expression, and to be more Deaf. They use more body language and are more comfortable with themselves.” Asked about their role with late-deafened and oral deaf clients: • “This may seem prejudiced, but I don’t think it would work. First of all, due to the language barrier, assuming the late-deafened person did not sign, an interpreter would be needed. This would make communication even more difficult for the late-deafened client, trying to understand with an extra person in the room. Also, since most latedeafened people tend to hate their deafness, how could they talk about hating that part of themselves to someone who is culturally Deaf, has an identity, Deaf Pride etc. Many would never mention this hatred and therefore miss out on the opportunity to express something felt very strongly.” • “I do think that if we are signing deaf and work with oral clients they may feel uncomfortable with us. Either we represent the culturally Deaf people that may have rejected them in school, or remind them of what failure as an oral deaf person meant. I have had people drop out when they discover I sign. Others work through these transference issues. For late-deaf if varies; some see me as a role model, and some as a threat. If anything I think most of them feel more welcomed because I understand. I become a neutral person in their lives.” • “So many late-deafened people have trouble moving into the Deaf world. At the same time they have trouble getting by in the hearing world. I become ‘safe ground’ for them. Depending on where they are with their healing I may be more clinical in addressing their sense of loss and depression, more of a coach in developing coping skills and strategies for survival, or more of a philosopher who helps them ponder the meaning of this loss on their life.” • “With late deaf people it depends on their level of self-acceptance and communication needs. Those with a recent loss can have a hard time relating to me. Once they accept what they need to do to communicate, I think they welcome the energy that I bring to make communication happen.” • “Oral clients are the most difficult. I once went to the waiting room to meet a new client who was hard of hearing. I signed and spoke his name. He was appalled that I used sign—he felt that I was ‘one of them—Deaf.’ He was never able to connect with me, but a similar client was able to work through the transference with me … I find that oral deaf people will test me on my knowledge of hearing idioms and words. Narcissism—terribly fragile and demanding at the same time.” • “It’s like so many other opinions that you might have when you’re a therapist. If I have an opinion about a client’s language and cultural choices, I try to keep it to myself and accept who the client is.”

EPILOGUE

359

• Regarding cochlear implants, one interviewee voiced the hope that the Deaf community would be large enough to embrace deaf people with implants. “There’s a growing cochlear implant culture. It’s like in the past, when the Deaf community made fun of hearing aids. Now everyone wears them.” Particularly with children, adolescents, and lower-functioning adults, interviewees identified an ethical issue regarding the degree of teaching of cultural deafness that is appropriate for the deaf therapist to take on. “If the child’s parents don’t support ASL, and the child wants to be hearing, I would not start preaching Deaf culture. Instead, I would try to analyze what being hearing means to him. I would feel disappointment—and sadness for the child—but I would handle this in supervision. I would work with the parents—what are they looking for? What are they afraid of if their child is deaf?” On the other hand, another therapist stated, “I do teach Deaf culture, if I’m the only place that the client is going to get that. I won’t bring it up if they don’t first, but I might subtly point them in that direction, like making sure they know when there’s going to be a Deaf dance or event.” Overall, this appeared to be an extremely difficult issue, with no clear answers. On the one hand, interviewees felt it was their duty as therapists to be nondirective, and to be accepting of their clients’ identities. On the other, they felt some responsibility as deaf people to at least make sure that deaf clients were fully aware of options that they might enjoy but would not think of on their own. Finally, therapists were alert to the shades of confident Deaf pride versus a narcissistic feeling that “I’m special because I’m deaf.” “From the point of view of some hearing people, deaf people overvalue their deafness—but who is to say what is ‘overvaluing’ versus what is cherishing?” THE DEAF VIEW OF LANGUAGE DEPRIVATION The concept of language deprivation includes the notion that every child has a right to be exposed to a fluent language (I support this notion), and that it is the responsibility of the surrounding adults to make sure that the child is acquiring language at a normal rate. Someone who has suffered language deprivation is then seen as a human being who has been damaged in a particular way. The deaf therapists whom I interviewed, however, took a broader view of language. When they said “he’s low language,” or “he uses visual/gestural communication,” it was with sensitivity and compassion, retaining full respect for the person as a human being. As one put it, “the language of visual/gestural deaf people is colorful and expressive.” Another said, “I remember one deaf patient … I couldn’t understand a thing she said. Her arms were just flying … but it was so beautiful that it just inspired me!” With these clients, Deaf therapists tended to be more gentle, hopeful, and energetic than hearing: “Some of my clients are immigrants with no

360

EPILOGUE

sign language exposure. They process differently. I draw pictures, play, put in a lot of energy—this isn’t a burden, though—it’s more like the client’s situation creates a requirement for me to be creative in order for communication to be successful.” This therapist used the word differently to describe severely damaged language that would be a major obstacle and frustration for most hearing therapists, who might conclude that such a client was unable to engage in treatment. Echoing this feeling, another therapist said, “If they have normal intelligence, then they can learn.” A Deaf therapist objected to the term language deprivation on the grounds that “communication is possible—even completely nonverbal communication. If the therapist isn’t able to do it, then the therapist has language deprivation, not the patient! That’s a low-functioning therapist!” For those like me who have grown up hearing, the energy and creativity that Deaf people often bring to visual/gestural work can be completely inspiring. Asked about this, interviewees responded modestly. “I don’t know if every Deaf therapist has that energy. Perhaps those who grew up with ASL have the most.” “Deaf people are just natural hams,” said another. TRANSFERENCE Deaf interviewees described a variety of common transference situations: • The transference of the client idealizing the therapist, and imitating him or her. “I had one client who used me like a substitute ego for a while. She would say, ‘I’m mature, like my therapist.’” • The opposite transference in which the client devalues the therapist due to projection: “You’re deaf like me—you can’t help me … It’s impossible, a deaf person can’t help me.” Some clients challenge the therapist with their level of signing skill. “This relates to deaf narcissism, which can show up as a need to bring the therapist down in order to bring him or herself up.” Another therapist commented, “When they say, ‘you can’t help me because you’re deaf,’ I lick my chops—I know I’m in for a challenge.” • There can be magical expectations of the help that the deaf therapist can provide. “They’ll say, ‘You’re deaf, you understand!’ about issues that have nothing to do with deafness!” • Patients can often use the therapist in displacement, asking about her life as a way of thinking about their own choices, which can make the therapist consider self-disclosure: “When they ask me a question, I try to understand what they’re looking for, and make sure that they know their options. Depending on the situation, I might choose to tell them how I handled something similar because they don’t know their own choices.” • The transference of identification with the therapist: “One client tried to feel closer to me by telling me that everything in her life was the ‘same, same’ as everything in my life.”

EPILOGUE

361

• Transference based on a need or wish concerning the therapist’s particular Deaf/deaf/hard-of-hearing identity. A young woman in need of a deaf role model decides that her hard-of-hearing, but culturally competent, therapist is culturally deaf, ignoring information to the contrary. “You can understand me because I’m deaf,” she says. A client signs conspiratorially to his therapist, in English word order, “you and I sign ASL.” A client screams at the mainstream-educated therapist, “I’m deaf. You went to hearing schools. You can’t understand me!” Another decides that her therapist, because she sees her as an authority figure, must be hearing—“I could hear even less than she could!” • Transference expressed through details of sign language. “Some clients will teach me how to make a sign properly. Maybe it’s because I happened to use a different one, or maybe they need to have some control in the room.” • Transference related to communication trauma. If the client is used to being misunderstood by hearing people, or having to laboriously alter his natural signing to match that of interpreters or therapists, then the content of the transference may be essentially, “no one can understand me.” “One client repeatedly asked ‘You understand me, right?’ as if at midnight the deaf therapist would suddenly becoming hearing and forget how to sign.” Another “repeatedly emphasized that he was speaking in ASL, which meant the interviewer could not possibly be understanding him, even though she was fluent in ASL and he was being understood perfectly.” Some clients who are inured to deprivation and discrimination will assume that their connection with the therapist who finally does understand them is fragile, and will be taken away. “Sometimes my clients seem too scared to connect, now that they finally have the opportunity.” COUNTERTRANSFERENCE I am prone to slips of the fingers while typing that are often quite meaningful. Early in my own experience of hearing loss, I often slipped on the word “deaf” and instead typed “death.” At that time, I was experiencing the loss of my hearing as the premature death of a part of my body. Now—having come to terms with the “loss,” no longer consciously experiencing it as a loss, and having made many beloved Deaf friends—I often slip and type “dear.” If my early negative feelings about my hearing were so transparent as to pop up unbidden while typing, they must certainly have affected my clinical work at that time. Similarly, my current positive experience of Deaf friendships and the Deaf world must color every clinical interaction I have. As one interviewee put it, a deaf therapist “can only help a patient feel comfortable with deafness to the extent that she does herself.” This section considers a broad definition of countertransference—all the feelings that the therapist has toward the client.

362

EPILOGUE

The interviewees reported: • Envy toward those perceived to have had a better background, for example those with Deaf parents, residential school education, fluent ASL, or early-onset hearing loss. “I’m jealous of deaf people that had the chance to study at Gallaudet. I would have loved to go there, and then to have been an international student for a year.” Another said, “for me anyway, there is a little jealousy of the Deaf, their ease of communication, their feeling of belonging.” • The risk of being drawn in by patient, creating a miniature “us against them” deaf world in the therapy, and neglecting importance of hearing family/friends/environment. “If I play into that, then what happens when that patient then has hearing children, and passes the dysfunction on?” “If child is deaf and connects too hard, I try to figure out where that child’s needs are not being met.” “Deaf culture does not mean taking the child away from the hearing family.” “I am very aware of my own desire to teach power, to build up deaf people, to prove to the world that ‘we’ are capable, intelligent, awesome! I know it’s in part fueled by my experience growing up, feeling dumb because I couldn’t hear. I keep this in mind so that my needs don’t become mixed in with theirs.” • Joy. “I love when their eyes change—they go from dull eyes to bright.” “This work feels heavy, but also there’s a joy I feel when I see my client blossoming like a flower.” “It’s great when I watch their self-esteem rise, or when they go out and try something new.” “One of my favorite things is seeing a client who has been victimized finally gaining power. I worked with a deaf woman who needed to make a phone call to advocate for her child. At first, she was afraid to make the call (‘My English isn’t good. They don’t listen to Deaf people.’) I asked her what she wanted to tell them. Hesitantly, she began expressing her feelings and needs. With some encouragement and validation, she quickly began to rattle off what she wanted for her daughter. I wrote down what she was telling me. When it came time to make the relay call, she froze. I took over the typing for her, and left a message based on the notes I had just taken. She watched while I modeled. By the second call, she was no longer frozen. She took the TTY, ignored the ‘script,’ and very firmly and clearly typed her mind. What a transformation! Inside, there was a strong woman. She got results within 24 hours—and the experience stayed with her.” “A mom was unable to care for her children. She was hiding in the bathroom with the kids when social services was banging at her door. She was worried about discrimination—a sensible fear! I persuaded her to come in and voluntarily give up temporary custody to the state. She said that because I am deaf like her, she trusted my input and chose to work with the system—much easier than against them! She’s done great and now has her children back, and has managed to maintain a good working relationship with social services.”

EPILOGUE

363

• The risk of acting paternalistically and taking over the client’s life, perhaps needing to control the patient, or getting angry on the patient’s behalf: “You need to file a complaint with the Equal Opportunity people! You need to tell your boss about the ADA!” • When confronted with a discriminatory society’s effects on their clients, a deaf therapist can feel “an attack on my client is an attack on me also,” e.g., a therapist working with a competent deaf mother whose family believes that her deafness makes her unfit as a parent. The therapist testifies as an expert witness, feeling the frustration of needing to teach the judge, often by her own example: “look at me. I’m a deaf person and a competent parent. It can be done!” When the situation is less clear—perhaps the mother may indeed be unfit—“I go by my conscience.” “The skilled deaf therapist knows he cannot allow the desire to support a deaf client cloud the ethical obligation to the victims of the deaf client’s behaviors.” • Sadness and anger “at the world” when working with clients whose life experience included neglect or deprivation. “I feel moved. It does not make it harder for me to get up in the morning and face the client, no. It does make me careful not to show too much what I feel. I don’t know if seeing my pained reaction to the client’s life circumstance would be helpful or hurtful. I do think it is ok to show some empathy.” One therapist reported disappointment in this situation, a wish that the deaf client were more competent. She acknowledged that this reaction might represent a projection of her own feelings of incompetence and shame. Other therapists acknowledged the difficulty of working with deaf clients whose pain in some way mirrored their own. “I get upset about two clients who don’t have much language. When they were growing up, their families loved them, but couldn’t communicate with them. It’s like when I was growing up, I believed I would be hearing if I was good.” “I feel especially empathic towards the trauma deaf people go through in prisons.” (Perhaps to this therapist, imprisonment was a good metaphor for childhood experience.) Every interviewee was alive to the issue of vicarious trauma—the difficulty of tolerating the experiences of abuse and neglect that their clients had suffered at the hands of parents, schools, and “the hearing world.” All found themselves to some extent identifying with the client and grieving their own negative experiences. “The goal when you’re in that situation is to cultivate a non-possessive warmth, an ability to understand while retaining objectivity.” Interviewees reported: • “The language issue hurts so much … I get mad just thinking about it … Their memories don’t develop, and then I’m sitting there with someone who can’t remember her own childhood.”

364

EPILOGUE

• “I see my many of my clients having relationship issues that I believe are related to damaged attachment in early childhood … Attachment becomes primitive and oral … it’s all just feeding and babying. Or how many clients have you had who just spew everything out at you?” “There are problems with empathy, understanding that other people have feelings.” • “The hardest trauma is observing patients who appear to have elements of personality disorder based on communication trauma, pathological attachment with the parents, and sibling inequalities.” • Traumatic experiences commonly result from being the first to discover that the patient has suffered abuse or neglect. • “I remember working in a clinic where the Deaf people came from a rural area. They were isolated from one another, and didn’t have the self-image of being Deaf. They didn’t feel any Deaf pride. They’d come in to the clinic, where they’d see models of successful deaf people. They had never experienced deafness in a positive way before. They’d be so nervous about whether I understood them.” • “One client, a woman about 45 years old, had a horrible abuse history. She had suffered every kind of abuse—physical, sexual, and emotional—while being moved form one foster home to another: nonstop abuse. Some was due to being deaf, some due to speaking out—even the police abused her!” • Institutional abuse—dealing with the fact that the organs of hearing society that are supposed to protect people often do not protect deaf people. “One client, a woman in her 30s, was in an abusive relationship for 5 years with an antisocial hearing man. He used her name to get apartments, forced her to work to support them, and physically abused her. If the police were called, they never brought interpreters, and he was always able to easily talk his way out of the situation. She only finally was able to escape him when he was arrested and jailed for assaulting a hearing person.” “I get angry at societal systems that do not support deaf people. For example, it would make much more sense for me to follow the client from place to place, working out of a central office. It can be so difficult for clients to make transitions after forming attachments with deaf staff. Sometimes, they just can’t.” • “It’s hard when I see a client who has been forced to speak, or to have an implant or wear some piece of hardware or another like I was.” • “My clients come to me and just dump everything on me … I find myself with my arms full—help! I use a weekly meeting to decompress.” The interviewees prescribed self-care in large doses and strong connections with others doing similar work in order to avoid burning out. “I try to laugh, and get a massage every 2 weeks. I do everything I can to take care of myself for this work.” “Sometimes at my agency we use some pretty black humor, laughing at ourselves, at our patients, and at the crazy world.”

EPILOGUE

365

WORKING WITH HEARING FAMILY MEMBERS: THE EVIL THERAPIST Asked about working with hearing families, one interviewee said, “I become the evil therapist, telling them to learn ASL and to get a TTY, and preaching self-reliance for the deaf client.” Another said, “I’m not often evil, but I am often a peacemaker.” She explained that deaf clients often benefitted from realizing that, even if their parents had done a poor job of learning ASL or appreciating the positive aspects of having a deaf child, this was rarely due to meanness. “I try to help the deaf person reconnect with the hearing family, to help them understand that it’s not their fault, and that they still have good things about them.” For the most part, the interviewees were more realistic and forgiving than bitter in regard to the difficulties that hearing parents face. “One hearing mom with three deaf children found 1001 reasons not to sign. She was a good mother. But she doesn’t realize how much she is missing. As her children grow and become more sophisticated, she won’t be able to keep up with them.” “If the family is mean, I try to teach the deaf person to take care of himself.” All the interviewees were enthusiastic about the importance and the efficacy of working with hearing families. “It’s very productive. In some cases it’s therapy, sometimes counseling, and sometimes just touching base. It’s amazing to see what happens when you help hearing parents communicate, and try to persuade them, ‘you could do this on your own!’” “Working with young children has taught me that their progress, behavior, self-image, well-being … all depend to a huge degree on parent’s progress, behavior, well-being, and their feelings about a child’s deafness. Many parents naturally shy away from grief—they may also be reluctant to share their sadness with me, for fear of alienating me. I try to give them the message that it’s okay to grieve, to be sad, to be angry. It doesn’t mean you are rejecting your child, it means you’re grieving a loss. If this is indeed a loss, acknowledging and grieving it will free you to move to appreciating and enjoying your child for who he is, and for the cool gifts he has to offer.” “I love working with families. I like the musical chairs, and organizing the session. I remember one case with a hearing cotherapist in which the father kept his focus on the cotherapist. I thought he was having difficulty with me as a woman and as a deaf person who was more able to communicate with his daughter than he was. My cotherapist and I had fun subtly modeling more appropriate interactions. We showed the deaf girl that it was ok to say ‘I want an interpreter’ or ‘could you repeat that, please?’” One therapist observed that individual work with the deaf client could force the family system to change: “When the deaf person improves, the family improves—they have to.”

366

EPILOGUE

“Parents can relish their roles as helpers and rescuers of their deaf children, or can simply be unaware of the potential that their children have. The children can easily fall into a pattern of dependence and under achievement.” One interviewee gave an example of a case in which she needed simultaneously to bear her own grief about the client’s language deprivation and support the parents: “I took care of a 40-year-old man with elderly parents. Because of a movement disorder, he had been assumed to be mentally retarded. He was institutionalized, and not found to be deaf until he was a teenager, when he had his first exposure to sign language. The parents were so guilty, dealing with all the years of misinformation about their son.” Anger with hearing families was also evident. To me this seemed more subdued among the group of therapists than in the wider Deaf community. “One parent asked me, ‘Do deaf people have feelings?’” “I could hardly stand it when the parents of one deaf child I have, who signs, but whose parents won’t, wanted to take a Spanish class.” “Once I worked with a very difficult hearing family. I just couldn’t stand any more what they were doing to their college-aged deaf child. Finally, I talked to the father, ‘speaking as a deaf person—not as a deaf professional’—and let him have it. I’m not proud of this, but it felt like something I had to do.” One therapist noted that the Deaf therapist can be drawn into various roles in regard to the deaf child: “I can be made a substitute parent, a surrogate child to the parents (if I’m more accomplished than their deaf child, they may start to feel that they wished I was theirs), or a coparent/communication facilitator, where communication that should go straight from parent to child instead goes through me.” “Sometimes the therapist’s deafness prompts the family to improve their sign language.” “A therapist with good speech skills says, ‘sometimes families accept me more because I can talk.’ Some hearing families say, ‘You’re deaf—you should tell us what to do.’ Others say, ‘you’re deaf—you don’t know what you’re doing.’” POLITICS Q: “Where do you get the energy to advocate for your clients?” A: “We don’t. We just do it anyway.” Every deaf therapist is personally involved in deaf advocacy. One interviewee commented, “it’s easier now than it used to be. As there are more and more deaf professionals, the burden on each one for advocacy is reduced.” In many cases, self-advocacy, advocacy for others, or involvement in local politics becomes a subject of the therapy with deaf clients: • “Politics enters into doing therapy with deaf clients, both for us and for them.” “One client was an elderly woman who was becoming deaf. She was attending a sculpture class with a famous Italian sculp-

EPILOGUE

367

tor. He was very strict, but she couldn’t hear his instructions, and he was becoming angry with her. Through the therapy she was able to grieve her progressive hearing loss and then take action to demand a change in seating and an FM system. It wasn’t easy for her to do something she felt was rude!” • “Once we had to cancel all our appointments because we heard that the funding to our agency was going to be cut. We ran across the street to attend a rally. Not all our clients understood this. We tried to tell them, ‘we won’t be here to be your therapists if we lose our funding!’” • “It can be easy for a deaf person to languish in a system, and because there’s no good communication, no one really finds out what is going on. Imagine a mentally retarded client in the same workshop year after year, where the staff say, ‘oh, she’s fine, she’s happy.’ One time we got a CDI and good interpreter, and then the staff heard what was really going on. The client wanted this, and this, and that, and another thing … it was wonderful to see their jaws drop. They were shocked! They had thought that this was someone who could only communicate by pointing to pictures in a communication book. Sometimes you have to rock the boat!” • “There is also the problem of Deaf politics. Another Deaf provider might mistrust my language or communication skills, or might misunderstand my role as therapist. Talented clients who are adept at splitting often use Deaf politics like this as part of their arsenal!” COWORKERS AND SUPERVISORS I asked a hearing supervisor about the experience of supervising deaf therapists. She scowled, and told of chatting with some deaf therapists who knew she was a supervisor but didn’t realize she was hearing. “They were going on about the incompetence of hearing supervisors. When they found that she was hearing, they were pretty surprised! This is a sensitive topic for hearing supervisors.” Obviously, it is perfectly possible for a hearing supervisor to be sensitive and helpful to deaf supervisees—it depends on his or her knowledge of deafness, sign skill, and ability to provide feedback respectfully and in a culturally effective manner. It depends most of all on kindness, general skill as a therapist, and the ability to accept feedback from the supervisee without defensiveness: “I had a nice hearing supervisor. She knew nothing about deafness, she knew she was ignorant and tried to be sensitive. She would be surprised at how blunt I could be, but she always respected me. No, she wasn’t the perfect supervisor, but she could support me in my work.” Equally, however, it is too easy for an insensitive hearing supervisor to be in a position to do great harm to the professional development and personal feelings of a deaf supervisee; the power relationship between them

368

EPILOGUE

can too easily mimic the hearing world–deaf world power imbalance. To some extent, all the issues of cultural and linguistic matching that exist between hearing therapists and deaf clients reappear between supervisors and supervisees. Thus, one interviewee said, “a hearing supervisor can’t supervise me. She just wouldn’t know.” One therapist approached the issue by considering hearing supervisors, even those with no knowledge of deafness, to be adequate as “administrative supervisors.” If no “cultural supervisor” were available, she would turn to colleagues for peer supervision. Different issues arise when a deaf person has a deaf supervisor. “If the supervisor is unskilled or acts inappropriately, there is some ‘small town’ risk that it will be difficult for the supervisee to complain, as well as a ‘protect our own’ risk that the supervisee will not want to criticize a deaf person in a position of power.” On the other hand, “I think a deaf supervisor can expect more from deaf staff. Too often they’re given special leeway that they don’t really need. They don’t need to be saved.” “I think as a deaf supervisor I was harder on my deaf staff than their previous hearing supervisors. That would be an interesting thing to look at.” Interviewees had strong feelings about coworkers and the work environment. “Obviously, it’s easier to communicate with deaf coworkers and to get to know them. On the other hand, just because they’re deaf doesn’t mean I have to like them. With hearing coworkers, I’m dependent on an interpreter. In general it is good, but my relationships with hearing coworkers are probably more superficial.” Interviewees invariably had a role in educating colleagues—both those who also work in deafness and those who do not—about deafness. This could feel like a burden or an opportunity: “I spend so much time explaining deafness—yes it’s a burden, but it’s not their fault that they don’t know.” “They can feel like they ‘know it all.’ They handle their own anxiety by convincing themselves they know it all.” “They take advantage of my knowledge.” Some interviewees felt that it was difficult to establish mutually respectful working relationships with hearing colleagues, particularly those who did not work in deafness. “They see me as something strange. I have difficulty communicating and being understood.” A particularly hot issue in this regard was the difficulty of explaining the caseload differences. “They get mad that I don’t see as many clients.” This therapist’s hearing coworkers felt that it was unfair that she was permitted to see fewer clients. A critical mass of a deaf people changes an organization or a conversation. Deaf therapists who worked in environments with more deaf people and a greater level of awareness of the issues of language and culture seemed to feel more comfortable with their roles and their work relationships. When there is a critical mass of deaf people at a meeting or in an organization, spoken communication ceases to be taken for granted, and the interpersonal dynamics change—the setting becomes bilingual and bicultural, and deaf people can feel more comfortable. On the other hand, in

EPILOGUE

369

this type of environment, hearing people might be at risk of feeling like outsiders. “There can be jealousy from hearing coworkers of the strong bonds between deaf coworkers—like one who told me, ‘how can you contact that person so fast?’” One therapist wished that her agency had a wider variety of deaf people so that clients would have a wider experience. “I’d like it if we had an oral deaf person here, some variety—something to make the interpreters work hard!” Interpreters received praise, but also raised hackles: “When you’re a deaf therapist working in a hearing system, interpreters have a tremendous amount of power. You need to have the strength to fire them. I have no trouble firing them. If they’re not interpreting everything, then they’re misrepresenting me to others, and misrepresenting the world to me. I resent that! The quality of my work depends upon the quality of their interpreting.” “I sometimes encounter interpreters who feel they have to advocate for me. They’ll say, ‘the lights aren’t good enough.’ I can speak up for myself. I know some interpreters are used to deaf people who are not fully comfortable advocating, but as a professional I have to be. I find it patronizing.” The interviewees saw advantages to having hearing coworkers and to being in mixed-client environments: “I try to forge links between hearing and deaf clients’ experiences. It doesn’t bother me to hear stories from the hearing world. I learn from them. I’m interested in hearing about my hearing coworkers’ cases. When someone’s language is good, the symptoms become more eloquent. There’s very rich stuff in the hearing world. I’m curious about how their symptoms are affected by their auditory experience. I don’t want a deaf-therapy ghetto.” CONFIDENTIALITY Deaf clients can be reluctant to have a deaf therapist because of concern that the Deaf community is small. They may be unable to find anyone that they don’t already know socially, or worry about boundaries and gossip. These clients may prefer to seek out a hearing therapist with some cultural competence, or to work with a hearing therapist with an interpreter. Deaf therapists face the same problem. Even in a large city, they belong to a smaller Deaf community in which they must both socialize and maintain normal therapist–client boundaries. The best hearing-world model for how to manage this difficulty might be the work of therapists who live in rural areas or small towns, where everyone knows everyone else, and therapists cannot avoid frequent contact with their clients outside the therapy situation. All the therapists whom I interviewed took the approach recommended by Sherry Zitter, LICSW—to have the client take the lead in outside contact, to discuss potential contacts and role conflicts before events when possible, and to process feelings about contacts afterwards (Zitter, 1996). Aparticular difficulty occurs with Deaf clubs, which a therapist may choose to avoid, but at some personal social cost. One interviewee said, “I avoid the Deaf clubs—I have to.”

370

EPILOGUE

I am unable to attend a local meeting of therapists for the deaf, because one member is a client, and feels that it would be uncomfortable to be in that setting together. Naturally, I respect her wishes, but not without sadness about the loss to my professional development. The small town model requires that therapists be very aware of boundaries, able to set firm limits, clear in their documentation, and willing to refer clients to others when it does not seem possible to establish a useful relationship. In psychoanalytic experience, it has been found that that outside contact or excessive knowledge of the therapist’s life decreases the extent and depth of transference reactions. This may do no harm to supportive therapies (where the therapist may choose self-revelation as modeling for the client) but may limit the possibility of psychodynamic therapies. This is a loss for both client and therapist. Arelated problem, raised by almost every interviewee, was the difficulty of finding a personal therapist. “Where am I going to find a therapist? I know everyone in the community?” There is simply no good answer to this dilemma; it is a severe and unfair cost of choosing to become a therapist within the deaf community that one often gives up the possibility of seeing a nearby deaf therapist oneself. One interviewee felt that hearing therapists might sometimes be less aware of the “small town” issues related to working with deaf people, and therefore less careful about confidentiality. “One time I could lip-read a conversation between two hearing therapists about a deaf client—stuff that should have been discussed privately.” “I remind the team constantly how careful we have to be. Right now we have a well-known deaf woman at our clinic. We have to do all we can to protect her right to confidentiality.” CONCLUSION I was deeply moved by my interviewees’ compassion, their deep respect for deaf people of all types, their commitment to real communication, and their wisdom about knowing themselves and caring for themselves. Being a deaf person treating another deaf person makes some things easier, but others potentially more painful and sad. The interviewees were not reluctant to feel this pain, and were also willing to take joy in their successes with their clients. Reading a draft of this essay, one said, “this is inspirational!” I hope the reader has found it so too. ACKNOWLEDGMENTS I am deeply indebted to the interviewees for so kindly sharing their experiences and expertise: Kim Grebert, LICSW, Wayside Youth & Family Support Network, Waltham, Massachusetts; Morag MacDonald, RN, MSW, Capitol Region Mental Health Center, West Hartford, Connecticut; Susan K. Salinas, LCSW, Mental Health Unit for Deaf Persons, Westborough, Mas-

EPILOGUE

371

sachusetts; Justine Stohl, LICSW, Freedom Trail Clinic, Boston, Massachusetts; Allen Sussman, PhD, Gallaudet University; and, Allison Weiner, MA, The Learning Center for Deaf Children, Framingham, Massachusetts. In addition, I gratefully acknowledge the assistance of Jan DeVinney, MS and Jennifer LeComte, MA. REFERENCES Elliott, H., Glass, L., & Evans, J. W. (Eds.). (1987). Mental health assessment of deaf clients: A practical manual. London: Taylor & Francis. Hoffmeister, R., & Harvey, M. (1996). Is there a psychology of the hearing? In N. S. Glickman & M. Harvey (Eds.), Culturally affirmative psychotherapy with Deaf persons (pp. 73–98). Mahwah, NJ: Lawrence Erlbaum Associates. Lytle, L. R., & Lewis, J. W. (1996). Deaf therapists, deaf clients, and the therapeutic relationship. In N. S. Glickman & M. Harvey (Eds.), Culturally affirmative psychotherapy with Deaf persons (pp. 261–276). Mahwah, NJ: Lawrence Erlbaum Associates. Zitter, S. (1996). Report from the front lines: Balancing multiple roles of a deafness therapist. In N. S. Glickman & M. Harvey (Eds.), Culturally affirmative psychotherapy with Deaf persons (pp. 185–246). Mahwah, NJ: Lawrence Erlbaum Associates.

Appendix: Using the skill cards found on the CD-ROM Neil Glickman Skill Card Illustrator: Michael Krajnak

The compact disc which accompanies this text includes a variety of images, including illustrations from various chapters, assessment and screening tools, and psychosocial skill cards from the Mental Health Unit for Deaf Persons (Deaf Unit) at Westborough State Hospital. Psychosocial skill cards were designed for use with psychologically unsophisticated or illiterate deaf clients such as “John” in chapter 4. Our occupational therapist, Diane Trikakis, created our first cards using commercially available clip art. The skill card project took off with the involvement of Michael Krajnak, a talented artist able to produce effective visual tools at a moment’s notice. At the time of this writing, Michael serves as the Deaf Unit’s communication specialist. Our staff and patients responded enthusiastically to his work, and we ask Michael to create new cards almost daily. The name ’psychosocial skill card’ is a bit misleading, as the cards include both skill training and psycho-education. Hospital staff who were not familiar with our treatment program initially had some concerns about the cards. Some worried that the images were infantilizing or overly dramatic. Others took offense at the depiction of sexually explicit behavior such as masturbation. A hospital administrator asked why we were showing such pictures to our patients. Fortunately, this administrator came to understand, as most people who work with us now do, that we often needed to be blunt and explicit to communicate well. We do not suggest using skill cards with all deaf clients. They were designed for people who do not read English well or who have impaired cognition. We do not push the cards on our patients—we always offer the choice of pictures or words. Some patients who do not read well nonethe373

374

APPENDIX

less think they should try to use English so others won’t consider them stupid. When we explain that neither is better than the other, they often change their minds. Because the cards help to create a visual environment, so important for culturally affirmative treatment programming, we post some cards around our unit. Patients sometimes draw their own versions. Several have taped the pictures up in their bedrooms or asked to take them home after discharge. Though the Deaf Unit treats only adolescents and adults, we feel confident that our cards can be useful in work with children (Sanjay Gulati is experimenting with them in his outpatient practice). Staff can also learn from the cards. In particular, the psycho-educational cards often appeal to people with advanced education and visual learning styles. The use of cards presented in the chapters is described in the respective chapters. Some uses of the remaining cards are described below. We imagine readers will find new uses for the cards, and have ideas for many more. The images on the CD are organized in ten sub-headings, the first being material directly related to book chapters and the other 9 being various types of psychosocial skill cards from Westborough State Hospital. The images appear in miniature on pages 387 to 416. MATERIAL FROM AND RELATED TO BOOK CHAPTERS • Chapter 4 • Chapter 5 • Chapter 7 (this includes the written Communication Assessment tool, Substance abuse screening tool and other substance abuse tools described in this chapter) • Chapter 8 OTHER PSYCHOSOCIAL SKILL CARDS • • • • • •

Bad behaviors Good behaviors Coping skills Social skills Situation cards Substance abuse cards (includes various cards presenting alcohol and drug cravings, cards describing the effects of cocaine use, and specific recovery skills) • Medication side effects • Psycho-education regarding anxiety/panic symptoms, depression, mania and bipolar disorder, grief, and psychosis. • Miscellaneous skill cards A list of the specific cards found on the compact disc is presented here:

APPENDIX

MATERIAL FROM AND RELATED TO BOOK CHAPTERS • Chapter 4 (in alphabetical order) • Admit yes • Aggression is • Before me, now me • Deaf Unit treatment plan • Diary card • Goal what • Group participation forms • John treatment list • John’s cycle • Negative behavior • Out of pit • Paranoia • Runaway train • Self-monitoring—bad behavior • Self-monitoring—good behavior • Shield • Situation cards • Therapy Rating Form • Traffic light • Treatment menu • Volcano • Walls you must climb • Which way choose • You here hospital why • Chapter 5 • Anger thermometer • Anxious thermometer • Balloon vibrate • Bottlecap • Calm-alert chart • Candy basket • Feel good diary • Foxtail • Goldfish • High low • How feel • Ice cube • KooshTM basket • Level H, L, JR • Moodometer • Parachute

375

376

APPENDIX

• • • • • • • • • •

Pet dog Pillow hug Smell coffee Smell trash SMI chart SMI meter SMI problems SMI treatment plan SMI treatment protocol SMIs

• Chapter 7 (this includes the written Communication Assessment tool, Substance abuse screening tool and other substance abuse tools described in this chapter) • Appendix • Communication Assess Tool • Dan Grief Line • Grief Time Line • Comm Assess Tool • SA Assess Tool • Chapter 8 • Female exhibitionism • Male exhibitionism • Male masturbation Private • Public masturbate Female • Public masturbate Male • Sex no • Sex yes • Sexual look whistle • Touch breast • Touch buttocks • Unwanted hug ADDITIONAL PSYCHOSOCIAL SKILL AND EDUCATION CARDS Good and bad behavior cards These cards present pictures of common desirable and undesirable behaviors. We most often use these cards as part of self-monitoring programs. We illustrate both positive and negative behaviors and then ask the patient to assess whether or not the behaviors happened. A rating might be a yes or no, thumbs up or down, number from 0 to 10, smile or frown, etc. Readers

377

APPENDIX

should feel free to add titles to cards or otherwise modify them. For instance, if a patient is being asked to determine whether or not he or she hit someone, the self-monitoring form might look like this:

Hit Yes___ No ____

An additional column for a staff member’s rating can added alongside that for the patient’s rating. This may be useful for patients who are less then honest or who have a limited capacity for self-observation. These cards can also be used as tokens in a behavior plan. Each time a client demonstrates a positive behavior, he receives a copy of the appropriate card. When he has accumulated a specified number of cards, he earns a reinforcer. Good behaviors • • • • • • • • •

ADL’s Clean room Cooperate 1 Cooperate 2 Express self Focus Game Get Up Greeter

378 • • • • • • • • • • • •

APPENDIX

Idea Join group Meeting Practice traffic light skill Put food in trash Speak to group Shower Sleep Take meds 1 Take meds 2 With group Work

Bad behaviors • • • • • • • • • • • • • • • • • • • • •

2 fisted threat Calling 911 Gawking Hit Kick Lie Messy room Middle finger Provoke1 Provoke 2 Pull fire alarm Push Slam door Spit Spit in trash Stalk Stuff toilet Talk negative Talk nonsense Touch Yell

Coping and social skill cards The use of coping and social skill cards is explained in Chapter 4. Our most common use of these cards is simply to present a visual depiction and reminder of a skill and then use that as a prompt for demonstration and practice.

APPENDIX

379

Coping Skills • • • • • • • • • •

Breathing Distraction Laughter Notice feel PosSelfTalk Pray Red, Yellow, Green Self Accept Shield SMI

Social skills • • • • • • • • • • • • • • •

Agree Apologizing Asking for help Assertive Boundary Communicate Decision making Disagree Discuss group Good job Help others I’m good Listening Talk right Talk wrong

Substance Abuse This folder contains three sets of cards: Cocaine, Getting High and Recovery Skills. The substance abuse cards include depictions of drug using behaviors. Obviously, these are not skills we seek to teach but rather pictorial representations of client realities. We use these cards to help clients talk about the behaviors, attitudes, feelings, beliefs, and internal sensations associated with their alcohol and drug use. As with so much of cognitive-behavioral therapy, the first step is to “stop and notice” (the “red light” of the “red, yellow, green” coping method). As our patients frequently note, this first step may well be the most difficult part of the recovery process. Substance abuse is an area in which we are planning to develop many more skill cards in the future.

380

APPENDIX

Recovery skills • • • • • • • • • • • • • • • •

Ask for help Avoid drug using people Avoid place Excuses Explain how stay sober Explain why drugs bad Feelings Group high Honest Keep busy Notice cravings/desires Notice cravings drink Notice cravings drugs Tell your story Thoughts Want sober

Cocaine cards • • • • • • • • •

Anxiety Choices Crack, mood swings Emotions crash High energy High Loss of appetite Nose bleed Snort

Getting high • • • • • • • • • •

Cigarettes Cravings drug_alcohol 1 Cravings drug_alcohol 2 Drugs/alcohol Feel high Feel pain Feel sick Feel tired Friends get high Want

APPENDIX

381

Situation cards The use of these cards is also explained in Chapter 4. Basically, the cards are used to elicit role plays of stressful situations in which coping or social skills can be practiced. Many of the situations depicted here are typical for situations that involve patients or clients and staff (e.g., staff busy you mad) or situations that may occur in a hospital (e.g., Laundry wait or No privacy). While it is generally preferable to work from real-life situations that patients are currently coping with, it helps to have some “back up” situations ready in case one’s audience is less than forthcoming. • • • • • • • • • • • • • • • • •

Bed all day Bored Bossy staff Fast food complaint I am busy Job rejection Late for work Laundry wait Mad at parents More work No privacy NowNOW Rushed during meal Staff busy you mad Stop provoking Trip left behind Wait a minute

Medication side effects These cards are used mainly to teach patients about the possible side effects of psychiatric medications. They can also be used in self-monitoring forms with which patients report whether a particular side effect is occurring. In our hospital, psychiatrists are required to explain to patients the possible side effects of various medications, and patients or their guardians sign a form indicating that they understand and consent to the use of these applications. This process is reasonable enough with literate, educated mental health consumers, but it can presents a formidable challenge with non-literate, psychologically unsophisticated clients. Psychiatrist Bruce Hurter worked with Michael Krajnak to develop side effect cards. Bruce has used them in medication psycho-education groups and individual psycho-education sessions. As with other cards, the reader is free to add enhancements such as captions and a rating system. For instance, side effects for the commonly prescribed anti-depressant medication Prozac include headache

382

APPENDIX

and anxiety (nervousness.) If we choose the appropriate pictures and add an English title and a rating scale, then we have a self-monitoring form:

Headache 0 – 10

Nervous 0 – 10

We have made no effort to organize these side effects by medication or class of medication knowing that different clinicians will emphasize different symptoms and that it must remain the responsibility of each medical professional to determine how much about side effects to explain to each patient. Medication side effect cards • • • • • • • • • • • • • • • • • •

Blurry vision BP Low BP Normal Breasts leak Breathe hard Constipation Cramps Diarrhea Diet1 Diet 2 Dizzy Dry mouth Enlarged breasts Erection painful Fever Hard swallow Hard to pee Headache

APPENDIX

• • • • • • • • • • • • • • • • • • • • • • • • • • • •

383

Head cold Impotence Irregular heart beats Liver disease Menstruation schedule good Menstruation schedule wrong Mood stable Nausea Nervous NMS Orgasm delay Rash itchy Rash spots Restless Runny nose Seizure Snail, move slow Stiff Sun sensitive Sweating 1 Sweating 2 TD Tired Too much saliva Tremors Vomit Weight gain Weight loss

How anti-psychotic medicine helps We have also included some cards that we use to teach patients how antipsychotic medications can help. These cards also can’t stand alone, but can help anchor and concretize a discussion of medication and psychosis. • • • • • • • •

Confused to clear thinking Control anger Focus Less depressed Stop feel things Stop many thoughts Stop see things Stop voices

384

APPENDIX

Psychoeducation The cards in these folders are used to teach patients about some symptoms of mental illnesses. We make no attempt here to be comprehensive with regard to the many conditions in the DSM though we keep adding cards as our need for them arises. These cards work best when presenting clear, specific symptoms like inability to sleep. It is much more difficult to represent pictorially ideas that are more abstract (e.g., trauma, psychosis or depersonalization.) We use these cards in mental illness education groups. The cards are presented as springboards for discussion and can not, in themselves, substitute for a good discussion. Anxiety • • • • • • • • • • • • • • •

Breathing fast Can’t sleep Chest pains Difficulty breathing Difficulty swallowing Dizzy Dry mouth Fear of dying Fear of going crazy Forgetful Flashback Heart racing Nervous Sweating Tremors

Depression • • • • • • • • • • • • •

Can’t concentrate Can’t sleep Depression Feel worthless Loss of appetite Loss of interest No energy Sleep all day Snail move slow Thoughts of death Too much appetite Weight gain Weight loss

APPENDIX

385

• Withdrawn Grief (these are mostly not symptoms of grief but situations that evoke grief) • • • • • • • •

Broken heart Crash Deaf sick Divorce Dog died Kick out Moved Pop died

Manic-bipolar • • • • • • • • • • • • •

Awake all time Distractible Fast movement Grandiose Lots of energy Mood up and down Racing thoughts Sleep around bi Sleep around gay Sleep around hetero Speeding Spending money foolishly Very talkative

Psychotic thinking • • • • •

Feel things Paranoia Racing thoughts See things Voices

PTSD • Bad dreams: abuse • Bad dreams: monster • Can’t concentrate

386 • • • • •

APPENDIX

Flashback 1 Flashback 2 Hypervigilance Irritated Startle response

Miscellaneous We have used the cards in this folder for various purposes. For instance, we present “accept no” as an important skill for persons who become violence when their wishes aren’t met. “Talk balloon” and “think balloon” are used to draw attention to how people communicate and what they think. “Deaf school,” “hospital,” and “jail” have been incorporated into pictures developed with patients tell their life stories. • • • • • • • • • • • • • • •

Accept no Bored Broke Day hall Deaf school Hospital Jail Practice Talk balloon Think balloon Thumbs down Thumbs middle Thumbs up Wait Walking

CHAPTER 4

Admit Aggression

Aggression Is

Before Me, Now Me

Deaf Unit Treatment

Diary Card

Goal What?

Group Participation Forms

John Treatment List

John’s Cycle

Negative Behavior

Out of Pit

Paranoia

Red, Green, Yellow

Runaway Train

Self MonitoringBad

Self MonitoringGood

387

CHAPTER 4

(continued)

Shield

Situation Card 1

Situation Card 2

Situation Card 3

Therapy Rating Form

Treatment Menu 1

Treatment Menu 2

Treatment Menu 3

Treatment Menu 4

Treatment Menu 5

Treatment Menu 6

Treatment Menu 7

Volcano 1

Volcano 2

Volcano 3

Volcano 4

388

CHAPTER 4

Volcano 5

(continued)

Walls You Must Climb

Which Way Choose

You Here Hospital Why

389

CHAPTER 5

Anger thermometer

Anxious thermometer

Balloon Vibrate

Bottlecap

Calm-Alert Chart

Candy Basket

Feel Good Diary

Fox Tail

Goldfish

High Low

How Feel

Ice Cube

Level H, L, JR

Moodometer

Parachute

TM

Koosh Basket

390

CHAPTER 5

(continued)

Pet Dog

Pillow Hug

Smell Coffee

Smell Trash

SMI Chart

SMI Meter

SMI Problems

SMI Treatment Plan

SMI Treatment Protocol

SMIs

391

CHAPTER 7

Appendices

Comm Assess Tool-1

Comm Assess Tool-2

Comm Assess Tool-3

Comm Assess Tool-4a

Comm Assess Tool-4b

Comm Assess Tool-5

Dan Grief Line

Grief Time Line

Manage Can’t

Power None

SA Assess Tool-1

SA Assess Tool-2

SA Assess Tool2-1

SA Assess Tool2-2

SA Assess Tool2-3

392

CHAPTER 7

(continued)

SA Assess Tool2-4

SA Assess Tool2-5

SA Assess Tool-3

SA Assess Tool-4

SA Assess Tool-5

393

CHAPTER 8

Female Exhibitionism

Male Exhibitionism

Male Masturbate Private

Public Masturbate Female

Public Masturbate Male

Sex No

Sex Yes

Sexual Look Whistle

Touch Breast

Touch Buttocks

Unwanted Hug

394

GOOD BEHAVIORS

ADLs

Clean Room

Cooperate 1

Cooperate 2

Express Self

Focus

Game

Get Up

Greeter

Idea

Join Group

Meeting

Practice Traffic Light Skill

Put Food in Trash

Shower

Sleep

395

GOOD BEHAVIORS

Speak to Group

Work

396

(continued)

Take Meds 1

Take Meds 2

With Group

BAD BEHAVIORS

2 Fisted Threat

Calling 911

Gawking

Hit

Kick

Lie

Messy Room

Middle Finger

Provoke1

Provoke2

Pull Fire Alarm

Push

SlamDoor

Spit In Trash

Spit

Stalk

397

BAD BEHAVIOR

Stuff Toilet

Yell

398

(continued)

Talk Negative

Talk Nonsense

Touch

COPING SKILLS

Breathing

Distraction

Laughter

NoticeFeel

PosSelfTalk

Pray

SelfAccept

Shield

SMI

Traffic light

399

SOCIAL SKILLS

Agree

Apologizing

Asking for Help

Assertive

Boundary

Communicate

Decision Making

Disagree

Discuss Group

Good Job

Help Others

I’m Good

Listening

Talk Right

Talk Wrong

400

SUBSTANCE ABUSE / Recovery Skills

Ask For Help

Avoid drug using people

Avoid place

Excuses

Explain how stay sober

Explain why drugs bad

Feelings

Group High

Honest

Keep Busy

Notice Craving Drink

Notice Craving Drugs

Notice Cravings, Desires

Tell Your Story

Thoughts

Want Sober

401

SUBSTANCE ABUSE / Cocaine Cards

Anxiety

Choices

Crack, Mood Swing

Emotions Crash

High Energy

High

Loss of Appetite

Nose Bleed

Snort

402

SUBSTANCE ABUSE / Getting High

Cigarettes

Craving Drug_Alcohol 1

Craving Drug_Alcohol 2

Drugs_Alcohol

Feeling High

Feel Pain

Feel Sick

Feel Tired

Friends get High

Want

403

SITUATION CARDS

Bed All Day

Bored

Bossy Staff

Fast Food Complaint

I Am Busy

Job Rejection

Late for Work

Laundry Wait

Mad at Parents

More Work

No Privacy

Now Now

Rushed during Meal

Staff Busy You Mad

Stop Provoking

Trip left Behind

404

SITUATION CARDS

(continued)

Wait a Minute

405

MEDICATION SIDE EFFECTS

Blurry Vision

BP Low

BP Normal

Breasts Leak

Breathe Hard

Constipation

Cramps

Diarrhea

Diet 1

Diet 2

Dizzy

Dry Mouth

Enlarged Breasts

Erection Painful

Fever

Hard Swallow

406

MEDICATION SIDE EFFECTS

(continued)

Hard to Pee

Head Cold

Headache

Impotence

Irregular Heartbeats

Liver Disease

Menstruation Schedule Good

Menstruation Schedule Bad

Mood Stable

Nausea

Nervous

Nms

Orgasm Delay

Rash Itchy

Rash Spots

Restless

407

MEDICATION SIDE EFFECTS

(continued)

Runny Nose

Seizure

Snail Move Slow

Stiff

Sun Sensitive

Sweating 1

Sweating 2

TD

Tired

Too Much Saliva

Tremors

Vomit

Weight Gain

Weight Loss

408

HOW ANTI-PSYCHOTIC MEDICINE HELPS

Anti-Psy 1

Anti-Psy2

Anti-Psy 3

Anti-Psy 4

Anti-Psy 5

Anti-Psy 6

Anti-Psy 7

Anti-Psy 8

409

PSYCHOEDUCATION / Anxiety

Breathing fast

Can’t Sleep

Chest pains

Difficult Breathing

Difficult Swallowing

Dizzy

Dry Mouth

Fear of Dying

Fear of going Crazy

Flashback

Forgetful

Heart racing

Nervous

Sweating

Tremors

410

PSYCHOEDUCATION / Depression

Can’t concentrate

Can’t Sleep

Depression

feel worthless

Loss of Appetite

Loss of Interest

No Energy

Sleep All Day

Snail Move Slow

Thoughts of Death

Too Much Appetite

Weight Gain

Weight Loss

Withdrawn

411

PSYCHOEDUCATION / Grief

Broken Heart

Crash

Deaf Sick

Divorce

Dog Died

Kick Out

Moved

Pop Died

412

PSYCHOEDUCATION / Manic–Bipolar

Awake all time

Distractible

Fast Movement

Grandiose

Lots of Energy

Mood Up and Down

Racing thoughts

Sleeping Around~Bi

Sleeping Around~BiFem

Sleeping Around~Gay

Sleeping Around~Hetro

Sleeping Around~ HetroFem

Sleeping Around~Lesbian

Speeding

Spend Money Foolishly

Very Talkative

413

PSYCHOEDUCATION / Psychotic Thinking

Feel Things

Voices

414

Paranoid

Racing Thoughts

See Things

PSYCHOEDUCATION / PTSD

Bad Dreams~ Abuse

Bad Dreams~ Monster

Can’t Concentrate

Flashback 1

Flashback 2

Hypervigilance

Irritated

Startled Response

415

MISCELLANEOUS

Accept NO

Bored

Broke

Day Hall

Deaf School

Hospital

Jail

Practice

Talk Balloon

Think Balloon

Thumb DOWN

Thumb MIDDLE

Thumb UP

Wait

Walking

416

Author Index

A Abel, G., 311, 323 Acosta, F., 154 Adams, J., 99 Agresta, J., 191 Allen, C., 321 Arredondo, P., xi, xiv, 110 Ayres, J., 203, 210

B Balla, D., 134 Banning, A., 321 Bahan, B., xvii, 99, 327, 345 Baker, A., 59 Barabee, H., 306, 314 Barlow, S., 60, 61 Bartee, J., 57 Bavelier, D., 45 Baynton, D., 49 Becker, J., 311, 323 Beery, K., 127 Behrman, R., 54 Bellack, A., 191 Bellugi, U., 40, 45, 60, 99 Bender, L., 127 Berent, G., 50 Berkley, R., 268 Bernard, J., 25 Bernstein, J., 127 Bernstein, M., 48 Biderman, B., 331 Birnbaum, H., 322 Bishop, J., 34, 43, 50, 58, 94

Blozis, S., 279 Bond, D., 55 Bonvillian, J., 40, 41 Borges, J., 34 Braden, J., 113, 130, 136 Brauer, B., 29, 130, 136, 147, 343 Brinich, P., 58 Brown, D., 131 Brown, F., 54 Brown, L., 124 Brueggemann, B., 80 Bussiere, M., 310 Buck, J., 122 Bundy, A., 203 Burgess, A., 322 Campbell, R., 51

C Carpenter, E., 55 Charlson, E., 60 Chasin, J., 61 Christensen, K., 100 Churchill, A., 58 Cicchetti, D., 134 Clark, M., 99 Clark, T. 122, 137 Clay, R., 341, 342 Clibbens, J., 61 Coffey, S., 45 Cohen, L., 99 Cohen, N., 69 Cohen, P., 55 Colarusso, R., 127 Coleman, E., 318

417

418 Conners, C., 134 Corey, G., 281 Corina, D., 45 Coryell, J., 55 Court, J., 124 Crouch, R., 68 Cruz, S., 154

D D’Andrea, M., 29 Davies, S., 53 Davis, J., 60 DelBello, M., 74 Delgado, G., 100 Dolgin, D., 154 DuBois, W., 330, 331

E Egley, L., 313 Eichen, E., 43 Elliott, H., x, 83, 90, 100,l 350 Emmorey, K., 40, 45 Evans, J., x, 83, 90, 100, 350 Evans, L., 154

F Feller, L., 67, 69, 70 Fischer, R., 34 Fischer, A., 45 Fischer, S., 45 Fisher, A., 203 Folven, R., 41 Foster, S., 55, 58 Fryauf-Bertschy, H., 68

AUTHOR INDEX

Goppold, L., 52 Gorski, T., 314 Groce, N., xiii, 39, 99 Greene, R., 194 Greenfield, K., 39 Gregory, S., 34, 43, 50, 55, 58, 59, 60, 61, 94 Groth, N., 322 Gulati, S., 78 Guthmann, D., 279 Guy, S., 134

H Haas, L., 282 Haaven, J., 318 Hadadian, A., 93 Hammill, D., 127 Hannah, J., 130 Hanson, K., 310 Hardy-Braz, S., 130, 136 Hare, R., 311 Harris, D., 122 Harris, M., 61 Harvey, M., xiv, xviii, 54, 98, 99, 345, 354 Helman, E., 52 Herlihy, B., 281 Hill, P., 75 Hindley, P., 50, 55, 75 Hoffmeister, R., xvii, 98, 99, 327, 345, 354 Holcomb, T., 55 Holden-Pitt, L., 55 Hotto, S., 54 Hughes, T., 35 Hull, J., 34, 39 Humphries, T., 111 Hunter, R., 210

I

G Gantz, B., 68 Gary, T., 322 Gates, H., 330, 331 Gee, J., 52 Geers, A., 50, 51, 52, 60, 69, 130 Gingerich, S., 191 Glass, L., x, 83, 92, 100, 350 Glickman, N., ix, xiii,xiv, 26, 29, 99, 110, 150, 329, 343 Gioia, G., 134 Gold, R., 60 Goldin-Meadow, W., 62 Goldsmith, T., 74 Goodyear, R., 25

Isenberg, G., 161 Isquith, P., 134 Ivey, A., 29 Ivey, M., 29

J Jacobs, E., 190 Jackendoff, R., 46, 52, 99 Jamieson, J., 93 Jankowski, K., 61, 99 Jenson, H., 54 Jezzard, P., 45 Johnson, M., 46 Johnsen, S., 124

419

AUTHOR INDEX

K Kafka, 318 Kampfe, C., 57, 61 Kasen, S., 55 Kaufman, A., 122 Kaufman, N., 122 Keck, P., 74 Kelsay, D., 68 Kenworthy, L., 134 King, L., 210 Kisor, H., 47 Kitson, N., 75 Kliegman, R., 54 Klima, E., 40, 45, 99 Knoff, H. 122 Knutson, J., 79 Koester, L., 93 Kozak, V., 51 Kuhn, T., 329 Kumphaus, R., 134 Kuntze, M., 52

L Lakoff, G., 46 Lam, R., 213 Lane, H., xvii, 34, 35, 54, 68, 99, 130, 327, 329, 345 Lansing, C., 79 Laurel, M., 206 Lawson, D., 45 Lee, F., 54 Lehr, D., 54 Leigh, I., 55, 100 Leiter, R., 124 Leonard, L., 268 Lenneberg, E., 43 Levitan, L., 86 Lewis, J. 350 Lillo-Martin, D., 40 Linehan, M., 151, 152, 153 Lock, E., 45, 61 Lowe, R., 81 Lyberger, R., 279 Lytle, L., 350 Lucas, C., 124

M MacAlpine, I., 210 MacKay, S., 58 Mahshie, S., 53 Maller, S., 130

Malouf, J., 282 Mann, J., 48 Marenette, P., 40 Marschark, M., 93, 99, 123, 128 Marshall, W., 306, 314 Martin, J., 48 Matkin, N., 79 Mayberry, R., 41, 43, 45, 52 McCarty, L., 321 McDavis, R., xi, 110 McGuire, J., 314 McNeil, D., 40 McQuigan, S., 75 Meadow, K., x, 10, 97 Meadow-Orlans, K. 93, 134 Medwid, D., 99 Meichenbaum, D., 182, 190, 195 Mertens, D., 55 Meyers, J., 57 Miller, M., 314 Mindel, E., x Mittelman, M., 311, 323 Moeller, M., 268 Mondell, S. 122, 137 Moog, J., 69 Moore, M., 86 Morford, J., 41, 62 Morgan, A., 122 Morishima, J., 154 Mounty, J., 52 Moyers, P., 52 Mueser, K., 191 Mullen, E., 130 Murphy, R., 38, 39 Murry, E., 203 Musselman, C., 58 Myers, R., x

N Naglieri, J. 122 Nelson, K., 46 Newman, A., 45 Newport, E., 43 Neville, H., 45 Nicholas, J., 51 Nohara, M., 58

O Obinali, M., 279 Ogden, P., 99 Osborne, L., 41 Ouelette, R., 55

420 Oyler, A., 79 Oyler, R., 79

P Padden, C., 111 Parasnis, I., 99 Pedersen, P., 343 Perozzi, J., 268 Petitto, L., 40 Pinker, S., 42, 46, 99 Plummer, K., 321 Poizner, H., 45 Pollard, R., ix, 1, 17, 83, 112, 120, 123, 130, 136, 137 Poynter, W., 12 Prinz, P., 52 Prout, H., 122 Prutting, C., 268

Q Quin, W., 57

R Rada, R., 322 Raven, C., 124 Raven, C.J., 124 Rée, M., xiii, 35, 42, 44, 49, 51, 99 Rehm, H., 71 Reilly, I., 40 Reilly, J., 60 Remen, R., 39 Reynolds, C., 134 Ritter-Brinton, K., 48 Rogers, C., 149 Rose, S., 93 Rosen, S., 69 Rosenberger, B., 74 Ross, M., 230 Ryan, G., 317 Rymer, R., 34

S Sacks, O., 39, 99 Salazar, A., 154 Salter, A., 322 Sandberg, K., 279 Schaller, S., 99 Schein, J., 99 Scherer, M., 55 Schick, B., 50, 52, 60

AUTHOR INDEX

Schlesinger, H., x, 10, 50, 97 Schildroth, A., 54 Shapira, N., 74 Shattuck, R., 46 Sheldon, L., 34, 43, 50, 58, 94 Shellenberger, S., 205 Sherbenou, R., 124 Shulman, L., 25 Siedlicki, T., 40, 41 Simek-Morgan, L., 29 Siple, P., 40 Solange, S., 48 Smith, R., 99 Solomon, M., 33 Sparrow, S., 134 Spencer, P., 93 Steinberg, A., 81, 88 Stevens, R., 39, 60, 67, 97 Stewart, D., 48, 99 Stinson, M., 55 Strong, M., 52, 60 Stutsman, R., 130 Sue, D., xi, xiv, 110, 343 Sue, D.W., 343 Sue, S., 154 Sullivan, V., 81 Supalla, S., 52 Sussman, A., 29, 147, 343

T Thornton, K., 310 Tibbets, R., 61 Tranchin, R., 99 Trehub, S., 58 Trott, M., 206 Tyler, R., 68

U Urban, E., 55

V Vaccari, C., 93 Valli, C., 124 van den Bogaerde, B., 59 Vernon, M., x, 122, 131 Vincent, J., 52

W Waber, D., 127 Waltzman, S., 69

421

AUTHOR INDEX

Wax, T., 342 Wechsler, D. 123, 126, 130 West, C., 330, 331 Weston, D., 99 Williams, C., 52 Williams, M., 205 Wood, D., 58 Woodworth, G., 68 Wright, D., 47

Y Yachnik, M., 61 Yamamoto, J., 154

Z Zalewska, M., 59 Zitter, S., 350, 369

Non authored references: American with Disabilities Act, 8 Anonymous, 50 Canadian Association of the Deaf, 337 Center for Substance Abuse Treatment, 265 Challenging Case, 72 Cochlear Corporation, 327, 341 The Committee on Disabilities, 83, 86 Education of All Handicapped Children Act, 54 Mayo Clinic Health Letter, 279

Subject Index

A AA, see Alcoholics Anonymous Abel Screen, 311 Abbé de L’Epée, 35, 49 Abuse and Neglect, 77–78 Accessible Treatment, see Communication Accessibility Addiction, see Substance Abuse Administrative Pressures, 98–9, 367–369 Advocating for Clients, 98, 366–367 ADA, see Americans with Disabilities Act ADA Communication Services Coordinator, xxxv Affective Illness, 73–74 Against Medical Advice (AMA), xxv Aggression, 74–76 Alcohol Abuse and Dependence, see Substance Abuse Alcoholics Anonymous, 193 Alexander Graham Bell, 334 Altschuler, Kenneth, x American Sign Language (ASL) activation of right angular gyrus, 45 affecting psychiatric diagnosis, 74, 83–84 acquisition of, 40–42 critical period for learning, 42–43 difficulty of learning, 12 enhancing English acquisition, 45 glosses, xvii, 40 grammatical features, 40, 83 hallucinations in, 73 importance in cultural affirmation, 17–21, 251–253

in cognitive testing, 124 in the brain, 45 interpreters, 8–11, 81–83, 113, 256–258, 369 language deprivation due to late sign exposure, 43–44 motherese, 60 origin of, 39 Americans with Disabilities Act (ADA), xi, xiv, xxi, xxix, 8, 81 Anderson, Glenn, x Anger Management, 96–97, 187, 247 ASL, see American Sign Language Assessment Screening Tool, 265, 291–295, 391–392 Assistive devices, 21–22 Association of Late-Deafened Adults, 79 Association for the Treatment of Sexual Abusers (ATSA), 307, 313 ATSA, see Association for the Treatment of Sexual Abusers Attention Deficit Disorder, 76–77 Audiologist role in multidisciplinary team, 114–116 Auditory Hallucinations, 73

B Behavioral Disturbance, see Aggression, Sexually Offending, etc. Behavior Therapy, 88–90, 194–196 Behavioral Assessment Scale for Children (BASC), 134 Behavior Rating Inventory of Executive Function (BRIEF), 134

423

424 Bell, Alexander Graham, 50 Bender-Gestalt, see Visual Motor Gestalt Test Bilingualism, on Martha’s Vineyard, 39–40 use of ASL and English on Deaf Unit, 19–21 Bilingual/Bicultural Education, 53–54 Blind Trials of Medication, 77 Boston Center for Deaf and Hard of Hearing Children (BCDC), 113–120 Brauer, Barbara, x British Sign Language, 58 “British Study,” 43 Burnout, 31, 364

C Carich-Anderson Victim Empathy and Remorse Scale, 311 Certified Deaf Interpreter (CDI), 20, 82, 349 Child Behavior Checklist (CBCL), 124 Child of Deaf Adults (CODA), 139–141 Child Welfare League of America, 256 Chomsky, Noam, 40, 42 CID Preschool Performance Scale, 130 Clerc, Laurent, 39, 49 Clinical Interviewing with Deaf Clients, 81–85 Cochlear Implantation, 66–71, 327 adolescent and adult implantation, 67 controversy regarding, 37, 66–68 Deaf community opposition, 67–68 implantation of young children, 67–68 language acquisition with, 47 outcome research, 68–69 Cognitive Testing, 130–133 Performance section of WISC III, 123, 131–133 Verbal section of WISC–III, 131–133 Cognitive-Behavioral Therapy, see Psychotherapy Collateral Information, 85, 94–95 Combined Approach, 52 Comfort Box, 225, 227 Comfort Menu, 224 Communication, see also American Sign Language, Documentation accessibility, 8–14, 262–264 ball, 23 dynamics, 10–11, 22–24 excellence, 19–21

SUBJECT INDEX

in the clinical interview, 81–83 policy on the Deaf Unit, 23–24 sensitivity to, 113 specialist, 19–21 styles, 113 trauma, 3–7, 83, 90 Communication Assessment, 268, 284–290 Community Service, 246 Confidentiality, 369–370 “Conflict Resolution Group,” 192 Conflict Resolution Skills, 191–193, 247 Conners’ Rating Scale, 134 Coping Skills, see Psychotherapy Cotherapy, 21, 94–96 case examples, 94–95, 249–250 in sex-offender treatment, 313, 316–317 Countertransference, 24–28, 97–99, 361–364 Creativity and Humor, 96–97 Creole, 39 Cross-cultural Legitimacy, 1, 30–32 Cross-cultural Psychology, ix, 1–7, 24–28 case example, 27–28 Cued Speech, 43, 50, 51 Cultural Affirmation, x, 7–8, 87–88, 110–112, 344–345, 359 characteristics of culturally affirmative programs, 14–30, 263–264 dual relationship issues, 281–282 in children’s residential care, 249–250 in sexual offending treatment, 316–317 in substance abuse treatment, 262–264 through attention to transference and cultural biases, 24–28 through communication policy, 19–20, 22–24 through hiring of deaf staff, 17–18, 252–253 through physical environment, 21–22, 219–220 through Sensory Movement Interventions, 204 through separate programming, 15–16 Cultural Biases, 5–6, 24–28 Cultural Insensitivity, xi, 5–6 Cultural Promotion, x, xi, 359 Cultural Rejection, xi Cultural Sensitivity, xi Cultural versus Pathological View of Deafness, 34–36

425

SUBJECT INDEX

D Deaf capitalization of, xvii culture, xii–xiii, 35 identity as healing force, 88 nomenclature issues, xvii, 86 parents, 60–62 personality, 75 staff, unique role for, 20 therapists, 349 Deaf Community history, 35–36, 49–50 identity issues for deaf children, 110–112, 249–250 opposition to cochlear implantation, 67–68 policital advocacy, 366–367 sexual abuse issues, 313 “small town” boundary issue for clients and therapists, 248, 264, 305, 369–370 theater and arts, xi “Deaf and Dumb,” 86 “Deaf-of-Deaf,” 61 “Deaf-Mute,” 86 Deaf Unit, see Mental Health Unit for Deaf Persons Deafness as disability, ix as culture, xii, 35–36, 357–359 contrasted with blindness, 33–34 “expert,” xv, 11–14 prelingual, 34, 46–47 Deaf-of-Deaf Children, 61 Deaf Parents advantages, 61 level of anxiety around parenting, 53 preference for residential schooling, 55 Deaf Staff Members advantages, 17–21, 251–253 dual relationship issues, 281–282 “Professional Growth Facilitators,” 254 training for, 254–255 supervision of, 255–256 Deaf Therapists additional obstacles, 355 additional responsibilities, 356 dual relationship issues, 281–282 linguistic and cultural match with clients, 357–358

managing coworkers and supervisors, 367–369 supervision of and by, 255 working with hearing family members, 365–366 working within the Deaf Community, 248 working with late-deafened and oral clients, 358 Depression, 74 Developmental Scoring System for the RayOsterrieth Complex Figure, 127 Developmental Test of Visual-Motor Integration (VMI), 127 Diagnostic formulation, 116 Diagnosis affective illness, 73–74 depression, 74 mania, 73–74 organic illness, 71–72 psychosis, 72–73 Dialectical Behavior Therapy (DBT), see Psychotherapy Digit span, 84, 125 Disability, 35, 38–39, 87 Discrimination, see Cultural Rejection and Oppression Documentation and Staff Communication, 85–86, 253–254 “Dr. Implant,” 334 Drug Addiction, see Substance Abuse Drug Chart, 268, 297 Dual Relationships, 281–282 DuBois, W.E.B., 330–331, 334 Dynamic Risk Factors, 310

E Early Intervention, 55–56 Educating of Deaf Children, 46–56 bilingual/bicultural education, 53–54 dilemma for parents, 48 early intervention, 55–56 Education of All Handicapped Children Act, 54 inclusion, 54–55 “least restrictive environment,” 54 mainstreaming, 54–55 oral education, 49–51 residential schooling, 56 right to “free and appropriate” education, 48 Education of All Handicapped Children Act, 54

426 Elderly Deaf and Hard-of-Hearing people, 79 English, see also Spoken Language, Oralism, Cued Speech abilities of deaf children, 45 issues in teaching to deaf children, 51–53 use in psychological testing, 128–129 Extended Merrill-Palmer Scale, 130

F Family Therapy, 92–94, 242–243, 365–366 blaming families, 243 geographic barriers to, 244 language barriers to, 243–244 Family Week Assignment, 302 Feel Good Diary, 221–222 Feel Good Group, 229–236 Feelings Journal, 270–271 Female Sexual Offender, 321

G Gallaudet, Edward Miner, 49, 51–52 Gallaudet, Thomas Hopkins, 39 Gallaudet University, x Gloss, see American Sign Language Gooze™, 209 Grammar, see Language Grief Time Line, 270–271, 391 Group therapy, see Psychotherapy

H Haldol (haloperidol) given to deaf patient in case example, 4–5 Handicap, 39; see also Disability Handshapes, 40; see also American Sign Language Hard of Hearing, 78–80 lacking cultural identity, ix children with Attention Deficit Disorder, 76 clients in psychotherapy, 349–350 “Hearing-Impaired,” 86 Hearing Loss, age of initial diagnosis, 42 etiologies, 71–72 hard-of-hearing people, 78–80 unilateral, 79 Hearing Parents of Deaf Children behavior planning tailored for them, 88–90

SUBJECT INDEX

feelings about Deaf culture, 112 parenting challenges, 46–48, 58, 59 typical needs in family therapy, 92–94 Hearing Providers working with Deaf Clients, see Cross-cultural Legitimacy and Cross-cultural Psychology Hearing World, 35 Hippocrates, 33, 98 Hiring Issues, 17–18, 251–253, 280–281 Home signs, 41 House-Tree-Person test, 122 Hughes, Ted, 35

I Identity Issues, 249–250 Idioma de Signos Nicaragense (ISN), 41 “Illusion of Inclusion,” 8 Immersion Level of Identity Development, 26 Inclusion, 54–55 Infantilization of Deaf People, 35 Information Gathering, 85–86 Informed Consent for medication treatment, 91 for sexual offending risk assessment, 309 Integration, see Mainstreaming, Inclusion Intelligence Testing, see Cognitive Testing Internet, 84, 307 Interpersonal Reactivity Scale, 311 Interpreters, see American Sign Language interpreters Intra cultural Competence, 350

J Janet DeVinney and the United States of America v. Maine Medical Center consent decree, xxxv Johnson, Samuel, 33

K Kaufman Assessment Battery for Children test, 122 Kinetic Family Drawing, 122 Koosh™ ball, 23, 232

L Lakoff, George, 46 Lane, Harlan, 68, 337 Language

SUBJECT INDEX

deprivation, see Language Deprivation functions of, 117 grammar acquisition, 46 motherese, 60 origins of, 41–42 relation to thought, 45–46 vocabulary assessment, 117 Language Acquisition Device, 41 Language Deprivation clinical presentation, 62–6 deaf clinicians’ view of, 359–360 linguistic theory, 43–44 prevention through bilingual education, 53 relationship to behavior problems, 74–75 risk in cochlear implantation, 69–70 Late-deafened Clients seen by deaf therapist, 358–359 The Learning Center for Deaf Children, 239–420, 250–251 Legal System as ally in treatment, 76, 171, 313 Leonardo da Vinci, xiii Leiter International Performance Scale, 124, 131 Levine, Edna, ix Levison Victim Empathy Scale, 311 Lip-reading, xi, xvii, 35, 86 Literacy affecting psychological testing, 128

M Maine Human Rights Act, xxx Maine Medical Center, xxi Mainstreaming segregation versus integration in mental health programs, 16 Mania, 73–74 Manually Coded English (MCE), see Sign Language, Spoken Language, English Manual Communication, see Sign Language, American Sign Language Marie Jean Philip, 333 Martha’s Vineyard, 39–40 Massachusetts Association for the Treatment of Sexual Abusers (MATSA), 307 Massachusetts Mental health Providers for the Deaf and Hard of Hearing, x

427 MATSA, see Massachusetts Association for the Treatment of Sexual Abusers MCDP, see Minnesota Chemical Dependency Program Meadow/Kendall Social-Emotional Assessment Inventories, 134 Medication, 91 for aggression, 75 blind trials for Attention Deficit Disorder, 77 Mental Health Unit for Deaf Persons, at Westborough State Hospital description of clientele, 146 physical environment, 219–220 program description and history, 14–30 Sensory Movement Interventions at, 203 “Therapy, What?” group, 155–157 treatment contract, 154 treatment menu, 157–159 Mental Status Examination, 137 Mentoring, 17 Minnesota Chemical Dependency Program (MCDP) Assessment Screening Tool, 265, 291–295 aftercare issues, 278–279 behavior contract sample, 301 client profiles, 264 Communication Assessment, 268, 284–290 contact information, xvi Drug Chart, 268, 297 family week assignment, 302 Feelings Journal, 270–271 Grief Time Line, 270–271 initial evaluation, 267–269 outcomes, 279–280 primary treatment, 269–274 program history, 261–262 referral process, 265–267 relapse prevention, 274–278 Serenity Prayer, 272 step assignment samples, 298–300 Staying Sober: Relapse Prevention Guide, 274 treatment high, 274–275 Misdiagnosis, 73–74, 87–88, 137–138 Mixed Method, 52 Moodometer, 168, 220–221 Motherese, 60 Motivational Systems, 318 Motor-Free Visual Perception Test-Revised (MVPT-R), 127 Mullen Scales of Early Learning, 130

428 Multidimensional Self-Esteem Inventory, 311 Multiple Cultures, 80 Myklebust, Helmer, ix

N NA, see Narcotics Anonymous Narcotics Anonymous, 193 Neglect and Abuse, 77 Nicaragua, 41 Nonverbal IQ testing, 123 Normality, Handicap, and Disability, 35, 38–39, 87

O Obsessive Compulsive Disorder (OCD) in case example, 4–5 Oppression of Deaf People, 2–7, 35, 61 Oral Clients, 78 seen by deaf therapist, 358–359 Oralism risk of language deprivation, 44 versus manual communication, 49–51 Oral Sensorimotor Experiences, 217–219 Organic Illness, 71–72

P Parenting Deaf Children, 57–62 Parents and Friends of Lesbians and Gays (PFLAG), 2 Paternalism, 3, 35, see also Cultural Affirmation case example, 5–6 Pathological Model of Deafness, x, 35–36, 87 Pervasive Developmental Disorder, NOS (PDD), 73 Pet Therapy, 211, 215 Pidgin, 41 Pidgin Signed English (PSE), xii Plethysmograph, 311 Pollard, Robert, x, xv, 142 Post-Traumatic Stress Disorder, 77–78 Prelingual Deafness, 34 Prejudice, see Discrimination, Cultural Insensitivity, Cultural Rejection Progressive Matrices, see Raven’s Progressive Matrices “Precommitment,” 153

SUBJECT INDEX

Prejudice, see Cultural Biases, Cultural Insensitivity, and Cultural Rejection Pretreatment, 153–155 “Professional Growth Facilitators,” 254 Projective Tests, see Psychological Testing Psychiatric Diagnosis in Deaf People, see Diagnosis Psychodynamic Therapy, see Psychotherapy Psychological Testing (see also under individual tests’ titles) intelligence testing, 130 scoring, 129 selection of tests for use with deaf children, 130 projective tests, 136–137 use of English versus ASL, 128–9 visual acuity affecting, 127 Psychopathy, 311–312 Psychopathy Checklist-Revised, (PCL-R), 311 Psychosis, 72–73 Psychotherapy (and Related forms of Treatment), 28–30, 91–2, 150–151 “bad behavior” skill cards, 378, 396–397 cognitive-behavioral therapy (CBT), 151–152 “Conflict Resolution Group,” 192 conflict resolution skills, 191–193, 247 coping skill cards, 378–379, 398 coping skills, 187–189 deaf versus hearing therapists, 351–354 Dialectical Behavior Therapy (DBT), 151–153, 187, 204 diary cards, 163–164, 387 enactment, 185 family therapy, 92–94, 242–245 Feel Good Diary, 221–222 “good behavior” skill cards, 377–378, 394–395 group therapy, 184–187, 247 identity issues, 249–250 legal system as ally, 76, 171, 313 medication side effect cards, 381–383, 405–408 metaphors, used in treatment, 159–161 Moodometer, 168, 220–221 psychodynamic therapy, 150, 181–182, 200

429

SUBJECT INDEX

psychoeducation cards, 384–386, 409–414 psychosocial skill cards, 183–184, 373–374 recovery skill cards, 379–380 recovery skills training, 193–194 “Red, Yellow, Green” technique, 189, 379, 398 role play, 185–186, 317 seen as skill development, 155–156 self-instructional training, 190 self-monitoring, 163–170 self-monitoring skill cards, 387 sexual-offender treatment, 197, 313–319, 393 “Shield” technique, 190, 387 situation cards, 185, 381, 403–404 social skill cards 378–379, 399 social skills, 191–193, 247 storytelling techniques, 161 stress inoculation, 182 technique of asking permission, 162 videotaping techniques, 190–191 Psychologically Unsophisticated Clients, 147–149 treatment models that work poorly for them, 149–151 treatment ideas which may work better, 151–153

R Rapid Risk Assessment for Sexual Offense Recidivism (RRASOR), 310 Raven’s Progressive Matrices test, 124, 131 Recidivism in sexual offenders, 310 Recovery Skills Training, 193–194; see also Psychotherapy “Red, Yellow, Green” technique, see Psychotherapy Registry of Interpreters for the Deaf (RID), 82 Rehabilitation Act of 1973, xxix Relapse Prevention in sexual offending behavior, 314–315 in substance abuse treatment, 274–278 Relapse Prevention Contract Form, 278, 303 Residential Schooling, 56 Right Angular Gyrus, 45 Risk Assessment for sexual offending behavior, 308–310 Risk Factors for Sexual Offending Behavior, 310

Robinson, L., x Rockland Psychiatric Center, x Role Play, see Psychotherapy

S Schlesinger, Hilde, x Second Language Acquisition, 45 Self Help for the Hard of Hearing (SHHH), 79 Self-Monitoring, 163–170 Anger Thermometer Anxiety Thermometer diary cards, 163–164 Feel Good Diary, 221–222 Moodometer,168, 220–221 Self-Regulation, 187 Sensory Movement Interventions (SMI), 203 Anger Thermometer Anxiety Thermometer auditory and vibrational interventions, 216–217 Comfort Box, 225, 227 Comfort Menu, 224 environmental modifications, 219–20 Feel Good Diary, 221–222 Feel Good Group, 229–236 touch interventions, 207–209 olfactory (smell) interventions, 212–213 oral stimulation, 217–219 Moodometer, 168, 220–221 movement interventions, 210–212 SMI information board, 221, 223 SMI treatment plan, 225 SMI treatment protocol, 225–226 visual interventions, 213–215 Serenity Prayer, 272 Sexual Abuse, 77–78 case example, 241–242 Sex Offender Need Assessment Rating (SONAR), 310 Sexual Offending client interview, 312–313 cycle, 314–315 female offenders, 321 treatment of deaf clients, 313–316 treatment of substance abusing clients, 322–324 treatment of multiply diagnosed clients, 317–319 formal risk assessment, 308–310 “Shield” technique, 190, 387

430 Sign Language, see also American Sign Language, British Sign Language, etc. activation of right angular gyrus, 45 acquisition, 40–43 appearance before spoken language, 41 assessment of skill level, 117 cultural weight of, 34–35 home signs, 41 in the brain, 45 Manually Coded English (MCE), 51–53 non-universality of, 34 Signed English, 51–53 Total Communication (TC), 51–53 Signed English, see Sign Language Sinclair Seminars, 307 Skills cards, see Psychotherapy Skills training, see Psychotherapy Social Skills, 191–193, 247; see also Psychotherapy Spatial Grammar, 40 Speechreading, xvii, 86 Spoken Language acquisition, contrasted with sign language acquisition, 40–42 challenges for hearing parents, 59 literacy findings in deaf children who sign, 61 Manually Coded English (MCE), 51–53 oral methods for teaching, 49–51 Staffing a Culturally Affirmative Program, 17–18, 251–253, 280–281 Static Risk Factors, 310 Static-99, 310, 312 Staying Sober: Relapse Prevention Guide, 274 Step Assignment Samples, 298–300 Stevens, Ray, 39 Stewart, Larry, x St. Elizabeth’s Hospital, x Stokoe, William, 40 Substance Abuse, 261; see also Minnesota Chemical Dependency Program appropriateness of hearing AA and NA groups for deaf people, 193–194 in sexual offending clients, 322–324 relapse prevention, 274–278 assessment and treatment tools, 391–392, 400–402 Substance Use Assessment Screening Tool, 265, 291–295

SUBJECT INDEX

Subvocalization, 73 Suggested Readings, 99–100 Supervision demand versus support functions of supervisor, 25 of deaf therapists, 25–26, 255, 367–369 Sussman, Allen, x Swedish Sign Language, 53

T TDD (Teletype Device for the Deaf), xvii; see also TTY Test of Nonverbal Intelligence (TONI), 124, 131 Thera-Band™, 225, 232 Thera-Putty™, 225 “Therapy Interfering Behaviors,” 152, 157 “Therapy What?” see Mental Health Unit for Deaf Persons Thompson, Richard, 142 Total Communication (TC), 51–53 Traditionally Underserved Clients, 147 Transference, 24–28, 97–99, 200, 360–361 Trauma from Poor Communication, 3–7, 83, 90 Treatment Contract, see Mental Health Unit for Deaf Persons Treatment High, 274–5 Treatment Menu, see Mental Health Unit for Deaf Persons Trieschman Center, 256 TTY (Teletypewriter), xvii, 22, 149

U Unilateral Hearing Loss, 79 United States Department of Justice, xxxi Universal Grammar, 40 University of Rochester Medical Center and Deaf Wellness Center, x

V “Veil” Metaphor, 331 Vernon, McCay, x, 131 Vicarious Trauma, 363–364 Videotaping for language assessment purposes, 117 as a psychotherapy technique, 190–191

431

SUBJECT INDEX

Vineland Adaptive Behavior Scales, 124 Visual Acuity affecting psychological testing, 127 Visual Hallucinations, 73, 77–78 Visual Motor Gestalt Test, 127 Visual-Motor Integration, 127 Visual Phonology, 40; see also American Sign Language

W Walden School aftercare, 258–9 family therapy issues, 242–245 staffing issues, 251–256 program description, 239–240, 250–251 treatment program, 245–250

use of interpreters, 256–258 Wechsler Adult Intelligence Scale-III (WAIS-III), 123, 125, 126, 130–132 Wechsler Intelligence Scale for Children—3rd ed. (WISC-III), 130 Wechsler Preschool and Primary Scale of Intelligence—Revised (WPPSI-R), 126, 130–132 Westborough State Hospital, see Mental Health Unit for Deaf Persons Written Communication, see Documentation

Y YAVIS clients, 147