Challenging the Stigma of Mental Illness: Lessons for Therapists and Advocates

Challenging the Stigma of Mental Illness

“This book starts with a personal approach to stigma especially its horrendous consequences for individuals and families and ends with the important pronouncement that stigma is an example of social injustice. Along the way, it provides conceptually driven yet highly practical and useable strategies for combating stigma at multiple levels. An invaluable resource for anyone interested in countering the huge issue of mental illness stigma; bravo!” —Stephen Hinshaw, Professor and Chair, Department of Psychology, University of California, USA

“This is a book for everyone for our patients, healthcare professionals and the general public. The issues surrounding stigma are raised without underestimating complexity, while still making the concepts understandable. Challenging the Stigma of Mental Illness explores the promising pathways, as well as those that will have unintended consequences. It ends, as all books on this subject should, with a rallying call for parity for those with mental illness.” —Til Wykes, Professor of Clinical Psychology and Rehabilitation, Institute of Psychiatry, King’s College London, UK

Challenging the Stigma of Mental Illness Lessons for Therapists and Advocates

Patrick W. Corrigan David Roe Hector W. H. Tsang

This edition first published 2011 Ó 2011 John Wiley & Sons Ltd. Wiley-Blackwell is an imprint of John Wiley & Sons, formed by the merger of Wiley’s global Scientific, Technical, and Medical business with Blackwell Publishing. Registered Office John Wiley & Sons Ltd, The Atrium, Southern Gate, Chichester, West Sussex, PO19 8SQ, UK Editorial Offices The Atrium, Southern Gate, Chichester, West Sussex, PO19 8SQ, UK 9600 Garsington Road, Oxford, OX4 2DQ, UK 350 Main Street, Malden, MA 02148-5020, USA For details of our global editorial offices, for customer services, and for information about how to apply for permission to reuse the copyright material in this book please see our website at www.wiley.com/wiley-blackwell. The right of Patrick W. Corrigan, David Roe, Hector W. H. Tsang to be identified as the author of this work has been asserted in accordance with the UK Copyright, Designs and Patents Act 1988. All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, except as permitted by the UK Copyright, Designs and Patents Act 1988, without the prior permission of the publisher. Wiley also publishes its books in a variety of electronic formats. Some content that appears in print may not be available in electronic books. Designations used by companies to distinguish their products are often claimed as trademarks. All brand names and product names used in this book are trade names, service marks, trademarks or registered trademarks of their respective owners. The publisher is not associated with any product or vendor mentioned in this book. This publication is designed to provide accurate and authoritative information in regard to the subject matter covered. It is sold on the understanding that the publisher is not engaged in rendering professional services. If professional advice or other expert assistance is required, the services of a competent professional should be sought. Library of Congress Cataloging-in-Publication Data Corrigan, Patrick W. Challenging the stigma of mental illness : lessons for therapists and advocates / Patrick William Corrigan, David Roe, Hector W.H. Tsang. p. ; cm. Includes bibliographical references and index. ISBN 978-0-470-68360-6 (cloth) 1. Mental illness–Social aspects. 2. Mentally ill–Public opinion. 3. Stigma (Social psychology) I. Roe, David, 1966- II. Tsang, Hector W. H. III. Title. [DNLM: 1. Mental Disorders–psychology. 2. Mental Disorders–therapy. 3. Attitude to Health. 4. Mentally Ill Persons. 5. Prejudice. 6. Social Perception. WM 140] RC455.C66 2011 362.1960 89–dc22 2010035848 A catalogue record for this book is available from the British Library. Set in 10.5/13pt Minion by Thomson Digital, Noida, India Printed in 1 2011

We dedicate this book to those fighting the good fight against stigma.

Contents

About the Authors

ix

Foreword: Robert Lundin

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Preface

xiii

Acknowledgments

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1

Stigma is Personal

1

2

Understanding and Measuring Stigma

23

3

Challenging the Public Stigma of Mental Illness

55

4

Addressing Self-Stigma and Fostering Empowerment

115

5

Addressing Structural Stigma

169

6

Stigma as Social Injustice

189

References

199

Learn More About It: Resources and Chapter References by Jennifer D. Rafacz

207

Index

225

About the Authors

Patrick W. Corrigan is Professor and Associate Dean for Research at the Institute of Psychology, Illinois Institute of Technology in Chicago. Prior to that, Corrigan was Professor of Psychiatry and Executive Director of the University of Chicago Center for Psychiatric Rehabilitation for 14 years. Dr. Corrigan has spent most of his career working to provide and evaluate services for people with psychiatric disabilities and their families. Realizing that the effects of psychiatric rehabilitation are limited by mental illness stigma, he has spent the past decade broadening his research agenda to include the prejudice and discrimination of mental illness. His work has been supported by NIMH for much of this time to, among other things, develop and lead the Chicago Consortium for Stigma Research; he is its principal investigator. Recently, the Consortium evolved into a national collection of researchers with support from an NIMH developing center grant. The National Consortium includes colleagues from Yale, UPENN, and Rutgers. Corrigan has authored more than 250 journal articles and 10 books. He is also editor-in-chief of the American Journal of Psychiatric Rehabilitation. David Roe is Associate Professor and Chair of the Department of Community Mental Health, Faculty of Social Welfare and Health Sciences, University of Haifa, Israel. His research focuses on the psychosocial processes of recovery from serious mental illness and the evaluation of psychiatric rehabilitation interventions and services. Dr. Roe’s research has been funded by local and international sources, including NIMH, The Israeli Ministry of Health, The Israel National Institute for Health Services Research and Health Policy, the

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Israeli National Insurance Institution, and the Tauber and Rich foundations. Dr. Roe has published nearly 100 peer-reviewed journal articles and book chapters. He serves on the editorial board of the Psychiatric Rehabilitation Journal, American Journal of Psychiatric Rehabilitation, and the Israel Journal of Psychiatry and Related Sciences. Hector W.H. Tsang is Professor and Program Director of the BSc(Hons) for Occupational Therapy at the Department of Rehabilitation Sciences, the Hong Kong Polytechnic University. His research interests focus on supported employment, social and independent living skills training, and stigma pertaining to people with psychiatric disabilities. His research on social skills in the workplace won the Best Cross-regional Case Study Award in 1996 at the XIVth International Conference on the Social Sciences and Medicine organized by the International Forum for Social Sciences in Health (IFSSH), Scotland, UK. Prof. Dr. Tsang has received research grants from various local and international funding bodies, including the Research Grants Council, Quality Education Fund, Health and Health Services Research Grants, and NIMH. In 2007, he spent a sabbatical at Yale focusing his research on neurocognition and schizophrenia. He has published more than 100 peer-reviewed journal articles and co-authored 15 books. Prof. Dr. Tsang is now serving as editorial member or reviewer for prestigious journals such as Schizophrenia Bulletin, Schizophrenia Research, Psychiatry Research, American Journal of Occupational Therapy, and American Journal Psychiatric Rehabilitation.

Foreword

It’s satisfying that Corrigan, Roe, and Tsang understand that mental illness stigma should be reduced to the personal story. True, stigma cuts a wide swath on certain issues such as insurance parity, the bias of media reporting, and employment and housing discrimination. But Corrigan and colleagues understand that it is in the world of stories, down to the individual person, and to the individual event, that stigma comes into sharp focus. In my personal experience, as a person with a schizoaffective disorder, broad issues tend to have less immediacy than a specific occurrence that happened to me personally. The conception of employment discrimination as an issue is one thing, but when I was fired from a data processing job because it was determined that, as a mentally ill person, I was untrustworthy and likely to hack the mainframe computer, that stung. These days, when I put a face on employment discrimination, this is the experience I use. In this book, the authors exhaustively chronicle the stories of individuals. The reader should read on for that alone. That said, while this book is comprehensible by the nonprofessional, Corrigan and colleagues do not overlook the scientific studies that have underpinned the understanding of mental illness stigma. There is a substantial body of scientific literature on stigma, labeling, and discrimination. The authors have contributed much to these studies. I’ve had the opportunity to work with Pat Corrigan on some of his best studies on stigma reduction, that is, ways to ameliorate stigma in the general population. The authors present these in detail in this volume. Otherwise, to understand Corrigan et al., look at their choice of language. They use powerful adjectives in condemnation of the phenomenon:

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venomous, poisonous, criminal, discriminatory. The authors are passionate about their work to reduce stigma in society; they recognize the pain and suffering for which stigma is responsible. Repeatedly, Corrigan, colleagues, and many in the anti-stigma movement refer to stigma as something of an animate object. It is the snake that spits venom; it is a criminal that robs people of their dignity. Thus stigma is looked upon as an enemy, an opponent, a villain out to rob people of their self-respect and make the lives of innocents, who never choose to have these no-fault disorders, miserable and wretched. Are these proper attitudes to be taken by researchers? Is the research done by the authors subject to bias because of their priorities? By all means no! Most investigators in the field of medicine take on a disease or affliction with the bias of eradicating it. The only difference that lies in psychiatry is that the symptoms of the disorder are behavioral. For instance, a person with bipolar disorder spends too much money. A person with paranoid schizophrenia wears amulets around his neck to protect him from evil spirits who are chasing him. These are indeed symptoms of an underlying disorder but they are behavioral and not readily measured by a CAT scan or a blood test. Likewise, society’s stigmatizing behaviors are the targets of Corrigan, Roe, and Tsang’s attacks. Their mind-set is equally as valid as the attack mentality that other researchers have heaped upon HIV, tuberculosis, and polio. This book will bring out the truth about mental illness stigma and the terrible effect that it has on people stigmatized by it. In co-writing Don’t Call Me Nuts: Coping with the Stigma of Mental Illness (Recovery Press, 2000) with Pat Corrigan, I discovered how deep his expertise runs. In the last two decades, Corrigan and colleagues have done serious and voluminous research on mental illness stigma, and in the pages of this book a great deal of that expertise can be absorbed. I can’t emphasize enough how, for many people with mental illness, in all countries and cultures, stigma is to blame for a great amount of their angst and suffering. A thorough examination of the topic is not only warranted, it is fundamental. When Pat Corrigan asked me to write a foreword to a book on stigma for an international market, I had a moment’s hesitation, primarily because I had been away from academia for five years. But then again, in that interim, as the consumer member on two different Assertive Community Treatment (ACT) teams, I have worked on dozens of real-life cases. I’m no longer in an ivy tower. I am learning a fascinating but heartbreaking education into the real stigmas facing people in America who must cope with chronic and severe mental illnesses. Their lot and mine are different but much the same. This book is written for us all. Robert Lundin Glen Ellyn, Illinois

Preface

The stigma of mental illness robs people of their rightful opportunities in work, relationships, housing, health care; all arenas in which a full life is achieved. Just as research has uncovered some best practices for helping people with serious mental illness1 overcome their disabilities, so there are similar “treatments” for erasing stigma, replacing it with affirming beliefs and actions. Interventions that promote stigma change are obviously different from what has been developed for the illness. Still, there is a collection of principles and practices that can stop the harmful effects of stigma, just like evidence-based skills manuals that help people live independently. Evidence is beginning to coalesce, suggesting strategies that are effective for challenging the public or self-stigma of mental illness. The distinction between public, self, and structural forms of stigma is key to the organization of the book and discussed more fully in Chapter 2. Briefly, public stigma is the harmful effect that occurs when the general population endorses prejudice and subsequently discriminates against people with mental illness. Self-stigma occurs when people internalize the stigma and beat themselves up with. Structural stigmas are the social forces that emerge after many years of public stigma.

1

Language is a major consideration in understanding mental illness stigma. Referring to psychotics or patients frames people in a light that perpetuates discrimination. Alternatively, and consistent with the zeitgeist, we use person first language. Hence, instead of schizophrenic we write persons with schizophrenia, not those mental patients but people consuming mental health services. Person first language reminds members of the public about personhood, namely, that the individual is first known as a person and all its intricacies with illness taking a distant backseat.

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Advocates of all stripes have come to understand the harmful impact of stigma over the past decade and have joined together to challenge it. Since 1996, the World Psychiatric Association has been a leader in developing antistigma programs with its Open the Doors program. Professional groups of psychiatrists adopted the WPA model with programs emerging in more than 30 countries. More recently, the World Health Organization convened a 2005 meeting in Helsinki solely on the issue of stigma and discrimination against people with mental illness. Individual countries have also recognized the call for change and provided significant resources for broad anti-stigma programs. In 2000, Australia launched beyondblue, a grass-roots program meant to increase public understanding about such disorders as depression, anxiety, and substance abuse. Other countries have only jumped into the fray in the past year or so: New Zealand’s Like Minds, Like Mine; Britain’s Time to Change; Canada’s Opening Minds; and the US’ What a Difference a Friend Makes. Of many benefits, common to all of these are websites where the interested viewer might learn more about mental illness and obtain more and personal help. One of the most interesting, and perhaps unintentional, anti-stigma efforts occurred in Japan. In 2002, the Japanese Society of Psychiatry and Neurology replaced the standard term for mental illness “Seishin-Bunretsu-Byo” (MindSplit Disease) with “Togo-Shitcho-Sho” (Integration Disorder). They reasoned that, among other things, public stigma of mental illness would decrease with a more disorder-sensitive term. Many of the national anti-stigma programs mentioned in the preceding paragraphs are society-wide, adopting media-based approaches to changing the message. Experts call this social marketing and frequently include public service announcements (PSAs), support materials, and online guidance, all for the general population. These provide factual information about mental illness and witness to first-person testimonies, life stories by real people with mental illness and their experiences with recovery. PSAs and related campaigns have benefits and limitations. They offer a venue to disseminate a message to the largest possible group of people. For example, the program in London logged more than 100,000 hits on its webpage in the month after Time to Change was rolled out. The US Substance Abuse and Mental Health Association, sponsors of What a Difference a Friend Makes, found an exponentially higher hit rate. PSAs often have dramatic voice that motivates the masses. “Singing to the choir” is one effect of social marketing campaigns. PSAs have little effect on people who are of unaware of problems due to stigma: “Not me! I don’t discriminate against the mentally ill.” Instead, PSAs sing to the choir; they are a clarion call to socially active people who are already sensitive to issues of prejudice and discrimination on any minority group. These calls organize people who, for example, are already mindful of

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social ills like racial injustice, teaching this motivated group that mental illness stigma is also an issue of prejudice and discrimination. In this light, PSAs provide direction for nascent advocacy groups to challenge stigma and spread affirming messages.

Stigma Change is Targeted and Local Alternatives to PSAs and social marketing may be understood in terms of targeted and local. Tip O’Neill, speaker of the US House of Representatives from 1977 to 1987, used to say “all politics are local.” He meant that successful election to government office is achieved only by pressing the flesh and meeting constituents in one’s district. Mr. O’Neill, now deceased for 15 years, might question the twenty-first century’s fascination with marketing and media to spread the message and get out support. He would say advocacy groups should also consider targeted and local approaches to change. Targeted means the program attempts to change stigmatizing attitudes and behaviors of key groups in the lives of people stigmatized for their mental illness; for example, employers, landlords, health care professionals, teachers, police officers, and legislators. These groups are defined in terms of relative, potential power over the person with mental illness. Employers might have power regarding the person getting back to work, the property owner in terms of housing, and legislators in terms of resources for mental health programs. Targeted anti-stigma programs have significant effects because they are crafted to include content and processes relevant to the interests and concerns of a particular group. A program for employers might include activities that address whether a person with mental illness will be a risk to co-workers or may not be able to meet productivity goals. Employer “peers” are likely to sway attitudes and behaviors more than other group leaders, because of their automatic credibility with business leaders. The stigma of mental illness will likely interact with other prominent social forces. Prominent among what we call local effects are ethnic differences which combine with mental illness stigma for compound effects. People of African backgrounds living in Western Europe experience a different sense of culture and opportunity from the majority. “If you think being mentally ill is hard, try also being black and poor!” One project by Corrigan on African American Chicagoans showed their faith communities to have a markedly greater impact on stigma than experiences of people with European roots. “Admitting to mental illness is letting your church down!” Local diversity issues are not limited to ethnicity. Gender, socio-economic status, education, and sexual orientation are also factors that may potentially impact stigma. We would

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expect, for example, the personal decision to disclose one’s mental illness would be measurably influenced by gay and lesbian experiences about coming out. Incorporating them into programs is likely to yield a program with more potent influences on stigma change. The focus on target and locality leads to benefits not necessarily had by PSAs and social marketing. Targeted and local provide an avenue for advocates themselves to pursue stigma change rather than relying on more macro-, typically government-based, efforts. It would be nice if the whole world would stop their biases but I am not sure this can be done. At the end of the day, what I really want is for employers to hire me and landlords to rent to me, for them to stop stigma and say, ‘‘You can do it!’’

Targeted approaches focus the critical lens from the seemingly massive focus of PSAs to the beliefs and behaviors of more immediate groups.

Don’t Call Me Nuts! Coping with the Stigma of Mental Illness Whether it is local or society-wide, there is an armamentarium of strategies from which advocates might select to challenge stigma. In 2001, one of us (PWC) partnered with Robert Lundin to write Don’t Call Me Nuts! Coping With the Stigma of Mental Illness.2 The first pages of Don’t Call Me Nuts accepted the premise that the quality of life of people with mental illness is wounded by stigma. From that assumption, we focused on an array of strategies that might diminish mental illness stigma. A decade has passed since then and the research evidence on stigma has increased by about fivefold, from 52 in 1988 to 247 in 2008. These data have begun to be used, in part, to identify the strengths and limitations of anti-stigma programs. Challenging the Stigma of Mental Illness is an update of many of the ideas in Don’t Call Me Nuts. Some sections were taken directly from Don’t Call Me Nuts. It was then colored by what is known about stigma change in the recent research literature. Investigator and practitioner were sometimes odd bedfellows in writing Challenging the Stigma of Mental Illness. Scholarly books often lose the practical reader in esoteric consideration of methods and analyses. For this reason, we purposefully decided to keep research references 2

The last section of the book – Learn More About It: Resources and Reference – provides information on relevant references including recommended readings.

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in Challenging the Stigma of Mental Illness to a minimum and in favor of “how to” prescriptions.3 We direct interested readers to existing research-based texts including two by our group (Corrigan, 2005; Corrigan & Shapiro, 2010).

For Whom is this Book Written? We have thus far referred to advocates as the agents of change in anti-stigma programs. The book is primarily meant for the doer, for the activist per se, a bit of a different readership from most professional books target. Advocate is a multi-level term, however. It includes several different kinds of stakeholders. Prominent among these is the group charged in most cultures with addressing psychiatric illness and disease: the mental health service provider, the “therapist.” This is the provider who, through their education, experiences, and commitment, builds personal and therapeutic relationships with people seeking assistance for mental illness. We define therapists in terms of their helper role and challenge them herein to broaden their approach from just the problems of the person to those of the community in which the person lives. “Therapist” is broadcast in the book’s title because it is an important group for comprehensive stigma change. Therapist is a complex idea frequently split into professionals and paraprofessionals. Some professional disciplines seem to naturally be in touch with the stigma problem: social workers, for example, because of their sensitivity to problems “in the world” and psychologists who have learned the kind of social cognitive ideas that are basic to mental illness stigma. Challenging the Stigma naturally corresponds with readers of this kind. But psychiatrists, nurses, and other medical personnel have an equally important role, if not more so, as therapists taking on the stigma mantle. They are the groups in many parts of the world with legal authority over services provided to people with mental illness. This legal role reflects our assertions about social injustice. Alternatively there are paraprofessionals. These are non-degreed providers who often work in the trenches and hence are more available to people as they struggle with their mental illness and the stigma that accompanies it. There is irony in including therapists in such an important role. Research often suggests mental health professionals are among the most stigmatizing groups of the general population. At first thought, this seems counter-intuitive, that the group of people who choose themselves for such a therapeutic 3

Still, we do cite important papers where corresponding evidence-based ideas are available. We start these citations in Chapter 1.

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relationship should be among the more prejudiced. One reason might be the skewed picture drawn of therapists. Simply put, the mental health provider only sees people when they are acutely ill. When they seem better, they move on from the helping relationship. This is especially noticed at inpatient settings where people are psychotic. Whatever the reason, psychiatrists, social workers, and others need to be actively recruited to assume their rightful place in the stigma change movement. Obviously, then, a prominent group of readers are people in the helping professions. The message of the book has relevance to both in-service and preservice efforts for them. Grand rounds and other programmatic activity in public and social psychiatry are natural venues for in-service programs. Of equal, if not greater, importance is the agenda to educate early career professionals so they are not tainted by some of the stigma that has already infected the professions. Hence, the book has a role in graduate courses in social work (especially in clinical social work and adult psychiatry) and advanced courses in both clinical and rehabilitation psychology. Advocates have put special efforts into medical students and residents, often presenting first-person accounts of recovery to medical students. As said earlier, stakeholder is multi-level. We have just described the role of therapists in the anti-stigma agenda. Also important, in fact the lead agent, are people with mental illnesses themselves. They are the group directly harmed by stigma and hence most invested in stigma change. Still, even the idea about person is complex, and varies with the way the person frames his or her mental illness. One way this has been defined is in terms of user (or consumer in some places), ex-patient, and survivor. Users are people with mental illness who are choosing, at a specific time, to meet with a professional or paraprofessional to address some problem or goal related to the mental illness. Ex-patient sometimes refers to people who, at another time, are not consuming services. Note that the person with mental illness can move back and forth between user and ex-patient roles depending on need. Other advocate groups, however, view ex-patients as an angry term; they are people who, not only are no longer in need of services, but believe “breaking off ” from such services is an important step in recovery. Survivor reflects this anger even more. In most advocacy communities, survivors do not represent people who have survived the illness, but rather the treatment. Obviously the level of energy and assertiveness varies depending on the way the person sees him- or herself. Keep in mind that there are many people who do not find this three-group definition meaningful. Patient is promoted more by some research participants and in many others, just person with mental illness is sufficient. The book also interchangeably refers to mental illness and serious mental illnesses. In part, this lack of precision represents our mixed opinion about

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mental illness stigma. Some research has shown that public stigma varies with diagnosis, with alcohol and substance abuse viewed most negatively and depression more benignly. Research of this ilk illustrates an interesting point; namely, that the type of stigma varies across diagnoses. One diagnostic group is not universally disparaged. It is not surprising to find substance abuse viewed as more dangerous than schizophrenia, which in turn is judged more harshly than anxiety disorders. However, prognosis (The person won’t get better!) is another important stigmatizing attitude. In this case, people with developmental disorders are viewed most negatively. In addition to the difference of stigma across diagnoses, there is also evidence of a nonspecific effect. Namely, regardless of the diagnosis, there are negative judgments about people merely known as having a mental illness. Considerations about nonspecific and diagnostic effects are important processes in developing anti-stigma programs, especially self-stigma efforts. There are additional stakeholder groups relevant to understanding stigma and developing anti-stigma programs. Families, for example, are important. Namely, many cultures in the world view family members as blameworthy in terms of their relative’s mental illness, or disgusting and an important group to avoid. Family stigma varies by family role. Parents are stigmatized differently from siblings, who are different from spouses. Already in existence are family programs (e.g., Enosh, Israel’s Mental Health Association; Rethink in the UK; Norway’s People to People Foundation; and the National Alliance on Mental Illness in the USA) which may be natural avenues in recruiting relatives for anti-stigma efforts. Stigma is an international problem. Note the paradox. As a local enterprise, stigma is an international problem. We know of no society where the stigma of mental illness is not present and potent. Although we might expect stigma to be a common phenomenon across cultures, in fact local mores are essential to consider. We would expect stigma to be similar across societies, but find that stigma notably varies across cultures. For that reason, the book is written by authors from North America (PC), the Middle East (DR), and Asia (HT). It was written especially for Western European and other English-speaking readers including advocates from the United Kingdom. But we suspect the lessons here are applicable in most other nations. Our decisions on authorship have influenced the many examples in the book meant to illustrate our assertions. This decision brings diverse perspectives to the material. We began the preface with the message we revisit here at the end: Stigma is an issue of social injustice! It is not a product of disease, an end point of disability, or a flaw in the person with mental illness. Resolution of most of the symptoms and disabilities focuses on the person with mental illness. The focus of stigma change rests with the community and society. There are times in the book where we examine changes in self-stigma, where cognitive therapies are touted

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as a way to get rid of irrational and hurtful stigmatizing attitudes. But this should not lead to misguided notions that stigma is the problem of those with mental illness and their families. Race is not the problem of people of color. Both social woes are overcome only by concerted and focused efforts to stamp out the stigma and replace it with rightful opportunity.

Acknowledgments

Many people have influenced our ideas about stigma and stigma change. These include Beth Angell, Galen Bodenhausen, Thom Bornemann, Jennifer Brown, Rosalynn Carter, Jennifer Crocker, Larry Davidson, Robert Drake, Sue Estroff, Kelvin M. Fung, Shenghua Jin, Anthony Jorm, Shlomo Kravetz, Chow Lam, Jonathan Larson, Yueh-Ting Lee, Ada Leung, Bruce Link, Barbara Lurie, Paul Lysaker, Steven Marcus, Fred Markowitz, Chris Marshall, Emeline Otey, Victor Ottati, Rebecca Palpant, David Penn, Bernice Pescosolido, Jo Phelan, Nicolas Rusch, Mark Salzer, Norman Sartorius, Jenessa Shapiro, Kan Shi, John Strauss, Amir Tal, Graham Thornicroft, Paolo del Vecchio, Otto Wahl, Amy Watson, Perla Werner, and Phil Yanos. Special to our work are people with mental illness who have actively joined the battle: Jean Campbell, Patricia Deegan, Daniel Fischer, Virginia Goldrick, Martin Juricek, Robert Lundin, Jay Mahler, Joseph Rogers, Susan Rogers, Yvette Sangster, and Ilil Tzin. Finally, appreciation goes to our families, who have supported us through our interminable scholarship. We are only able to bring our messages alive through your love. To my wife Georgeen, and children Abraham and Elizabeth (PC), my wife Galia, and children Shanee, Eyal, Alon, and Netta (DR), and to my wife Wai Ming and child Kevin (HT).

1

Stigma is Personal

All great things are simple, and many can be expressed in single words: freedom, justice, honor, duty, mercy, hope. Winston Churchill Stigma is not some kind of heady abstraction experienced by an overly sensitive few. It is a social injustice that discredits many people with serious mental illness, terribly harming them in the process. Resulting injury is broad and cutting. Public endorsement of the prejudice and discrimination of mental illness robs people of such rightful opportunities as a good job, agreeable housing, and intimate relationships. Internalizing the stigma of mental illness and directing stereotypical negative attitudes towards one’s self leave people feeling unworthy and incapable. Many people seek to avoid stigma altogether by keeping away from places where individuals are tagged mentally ill, perhaps most notably mental health clinics in their various guises. “That guy, Harry Black, just came out of Dr. Johnson’s psychiatric clinic; Harry must be crazy.” The threat of stigma, and the effort to avoid the label, are so powerful that more than half of the people with mental illness who would probably benefit from psychiatric services never obtain even an initial interview with a professional. Stigma hurts and it is personal. We seek to give voice to stigma here by considering examples of personal stories; a collection of tales meant to illustrate private experiences of mental health and stigma. These personal stories especially make sense in the most blatant port for stigma – the media. Stigmatizing images of mental illness in Challenging the Stigma of Mental Illness: Lessons for Therapists and Advocates Patrick W. Corrigan, David Roe, and Hector W. H. Tsang Ó 2011 John Wiley & Sons, Ltd

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movies, newspapers, television, online, and advertisements are provided as especially poisonous sources of prejudice and discrimination. We attempt to make sense of stigma and the media by examining key points in history related to public impressions of mental illness and stigma. We then jump in with our first strategies for stigma change; sensitizing people to stigma which parallels a discussion about appropriate language. We end this chapter by revisiting the personal nature of stigma. We imply by the very existence of this book that stigma continues to hurt. A series of population studies has allowed us to actually examine this assertion. In 1950, Shirley Star and colleagues from the National Opinion Research Center (NORC) conducted face-to-face interviews with a representative sample of 3,529 American adults (cf. Phelan, Link et al., 2000). Of the many goals of the survey, Star (1952, 1955) examined public impressions of people with mental illness. Most important to the point here was whether research participants viewed people with serious mental illness as violent. In 1996, NORC repeated items from the Star survey as part of a snapshot of NORC’s annual snapshot of contemporary life. On one hand, we expect to show a decrease in viewing people with mental illness as violent consistent with popular notions that the general public are more educated about mental illness than 1950 cohorts. A more sobering response would show no change in attitudes between 1950 and 1996. What is found? Figure 1.1 summarizes relevant data analyses (Phelan et al., 2000). Stigmatizing attitudes got significantly worse! People in 1996 were 35 30 25 20 15

1950 1996

10 5 0

Figure 1.1 A summary of research on the dangerousness of people with serious mental illness. These data were collected in 1950 and 1996. Findings reflect percentage of survey participants whose description of mental illness includes perceptions of violence.

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about two and a half times more likely to view individuals with serious mental illness as dangerous compared to 1950. Researchers in the 1996 study conducted a second interview in 2006 and had similar sobering findings (Martin et al., 2009, personal communication). Comparisons of 2006 with 1996 data are not totally completed at the time of publishing this book. However, the investigators did report no significant reduction in attitudes between 1996 and 2006. Things have not really improved. Think how sobering these finds are. They fail to reflect the hope that more education would lower stigma. One reason is the change of the face of media around the world during these 40 to 50 years. We discuss this point more fully later in the chapter.

Some personal stories Stigma is a personal thing that can have broad impact on people labeled as mentally ill. In part, it reflects the varying shades of mental illness. More importantly, the impact of stigma varies with the unique qualities of the person. Bob was first diagnosed with a serious mental illness in high school which led to a three-day hospitalization. It was not until five years later that he showed signs of serious psychosis. One night, during a lightning storm, Bob was sure the United States was being bombed by the Russians. So, he went to tell the university’s chancellor; luckily he was detoured to the local emergency room. Symptoms like these were followed by crippling anxiety attacks. Bob was hospitalized more than ten times in the subsequent decade or so. After a long struggle, Bob found a psychiatrist with whom he built a strong partnership, who identified Bob’s illness as schizoaffective disorder, and found medications that helped him manage his disorder. Bob was then able to obtain a full-time job at a major university, lived independently in his own condo, and traveled greatly across America and to international ports of call. Flash forward to 1998. Bob has become an acknowledged journalist, with evident skills in reporting and photography. He developed his network as a freelance writer. He was worried that more face-to-face work with newspapers would lead to discovery that he is a person with mental illness, and as such is not competent to do the kind of work at which Bob excelled. So he would travel to newspaper headquarters early in the morning and slide stories and photos under office doors.

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Challenging the Stigma of Mental Illness Bennett has a terrible fear of elevators. He panics and runs out of them before the door closes. It has become a major problem since his company moved to the 35th floor of a downtown building. He had to quit his job and is unable to find further work because of his phobia. Bennett’s income is falling quickly and he has had to file for bankruptcy to handle delinquent bills. None of his classmates from Harvard thought he would end up with such problems. He is terribly ashamed of his weakness and has withdrawn from friends. Nobody at work ever knew that about once a year, Emil would have a manic episode followed by a severe depression. He wasn’t able to go out for about three weeks after. Fortunately, Emil had a close set of friends who would help him through the episodes. They would sleep over, cook, and otherwise keep him company. With appropriate help from his psychiatrist, Emil was eventually able to get back to work without ever being hospitalized. His support network helped Emil to avoid the harsh light of public stigma. This same network diminished a sense of shame for his “failings.” Betsy suffered from terrible test anxiety. Before she learned relaxation strategies, she could barely get into a classroom to take exams. However, after a few audiotapes, she learned breathing exercises and became a whiz at tests! Stigma never really became an issue for her.

Which one of these people has a mental illness and suffers the impact of stigma? Whose psychiatric disorder and corresponding experiences with stigma are the most severe? In some ways, Bob represents the prototype of mental illness; he has a diagnosis that includes psychosis which started in young adulthood and led to severe symptoms. Bennett has what is usually considered to be a milder psychiatric diagnosis, a phobia or irrational fear of something in his environment. But consider the impact of the two illnesses. Bob, despite having schizoaffective disorder, has learned how to manage the illness, has obtained a respectable job, and has become a world traveler. Unable to work, Bennett’s world is tumbling down around him. Bob was able to box off stigma, sliding his work under the door in order to maintain a successful writing career. Bennett internalized stigma terribly, which only worsened the sense of alienation from family and friends. Emil’s experience with mental illness is like a tree falling in an empty forest; is it a mental illness if no one knows? He escapes the label and all the harm which stigma creates. Betsy suffered what professionals might consider

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the minor headache of mental illness, test anxiety. Most readers might dismiss this altogether from the category of major psychiatric disorders. But, while in college, tests for Betsy were as painful as someone else’s experience with major depression or psychosis. Moreover, the impact of test anxiety remaining untreated could have had major repercussions; failing classes, dropping out of school, and not attaining the career to which she aspired. Stigma will wax and wane with her experiences. This book is about the stigma of persons with serious mental illness. What we have taken for granted is a definition of what exactly mental illness is and who is labeled mentally ill. Sorting out who is and is not mentally ill seems like such an easy task. . . .

Psychotics to the left; neurotics to the right. You’re mentally ill; you’re normal. Insane people are obvious!

However, when we take a closer look at these assumptions, we find that simple definitions distinguishing those with mental illness from those without elude us. The place to begin to make better sense of these definitions is history – how has the stigma of mental illness appeared over time and across cultures?

Why the stigma of mental illness By no means is stigma a recent creation. Much of written history has examples of the broad-based prejudice and discrimination with which the public has branded people labeled with mental illness. Most often, stigma has emerged when people of different eras try to understand mental illness as a punishment of god or a mark of the devil. Two recent books (Hinshaw, 2007; Thornicroft, 2006) effectively review this history; prominent examples are presented here to orient the reader to the foundations of stigma. The authors trace stigma back to the Greeks of the classical era. The prominent belief of Homeric times was that mental illness represents displeasure of the gods. Dramas and comedies showed an angry and powerful deity damning a human with psychotic symptoms, for example, or those of depression and bipolar disease. As a result, people were robbed of the opportunities commensurate with their station in life. This kind of “theological” presentation had perhaps its most heinous history during the Middle Ages. People with mental illness were viewed as products of the devil with symptoms being outward manifestation of their wickedness. Mental illness was seen as a moral danger to society which had to be rooted out and

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eradicated before the devil’s work took other victims. Sometimes, this showed itself as exorcisms where the clergy forcefully tried to push out the demons in an emotional and spiritual war. Other times, a community sought to erase the wickedness of mental illness through executions, including such barbaric acts as burning the person at the stake. Thus far, we have provided a Eurocentric review of mental illness and history. Sadly, there is compelling evidence that Asian, African, Middle Eastern, Native American, and Australian peoples also stigmatized, discriminated against, and harmed people labeled “mentally ill.” Examination of relics from Egypt around 5000 BC has shown, for example, an attempt to cure a young princess of demonic possession, of mental illness. The Old Testament urges “disturbed” behavior to be punished by death. Hindu cultures dressed people with mental illness in religious garb and, in some settings, related to them as divinities. Mayan and Aztecan groups sought to throw out demons in an individual as well as in their community by human sacrifice. Evidence from the Koran and other Muslim writings framed some psychiatric behavior as a threat to the spiritual. A second, oft-repeated alternative to mental illness stigma as moral shortcomings was mental illness as “illness.” Classical Greece not only represented mental illness as a sin but also as a disease process. Contemporaries of Plato and Aristotle developed seemingly sophisticated models of psychiatric illness in terms of physiological or anatomic aberrations. Hippocrates described psychiatric behaviors as an imbalance in the humors. Galen, the great secondcentury anatomist, argued that relative temperatures of the brain accounted for mental illnesses. Current depictions of mental illness reflect a biological perspective that mostly evolved from the industrial age. The mechanical mind is a collection of processes and actions; events that interfere with these actions lead to mental illness. This paradigm calls for treatments and applications meant to halt diseased activity; unfortunately, many practices in the industrial age reflected the injustices and harms of earlier times rather than some enlightened and efficient process of the era. Practices of the eighteenth and nineteenth centuries included misguided notions of Celsus, actually a physician of ancient Rome. As transposed to the 1700s and 1800s, his followers emphasized restraints, extreme hunger, living in total darkness, and intentional fright. Asylums were little better than prisons in the 1800s. People with mental illness were confined to cells or chained to walls, with little consideration to such very basics needs as food and clothing. Sadly, tourists of the times traveled to these asylums as a fun outing, similar to seeing animals at the zoo. Historians estimated that 19,000 gawking visitors toured through Bethlehem hospital in England in a single year. Physicians tried to address the suffering patient of the era but treatments were rarely effective and actually at times barbaric.

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Common was bloodletting, opening a vein so that bad “humors” were ejected and replaced by sane fluids. There was also twirling people in a chair, tying them down for excruciatingly long periods, and dunking them in tanks filled with water. Also seizure-based treatments appeared, reflecting the rationale that the extreme chaos of seizures “resets” the brain, yielding normal brain processes. Insulin shock and electroconvulsive strategies were prominent examples. Despite what was hoped to be able approaches to stemming mental illness, treatments and places where these treatments occurred remained terrifying. Convergence in the progressive ideas of societal leaders resulted in what has been called moral therapy. Pussin and Pinel in France, Chiarugi in Italy, Tuke in England, and Rush in America were all voices of anger believing that notions of asylum, confinement, and deprivation were fundamentally immoral and must be replaced by more humane approaches. Moral treatment led to the establishments of true asylums; pastoral locales removed from the stress of daily living where people could gently return to the noise of the contemporary world. Pinel coined the term “moral” treatment, based on two assertions. First, mental illness affected a person’s moral (psychological and social) faculties, while leaving reason relatively intact. People with serious mental illness were, therefore, human at the core. Second, notions that people with mental illness were beasts needed to be replaced with visions of hope and opportunity. This could only be achieved in settings of kindness and respect. Great leaps were taken with the development of psychotropic medications starting in the twentieth century. In 1952, two French psychiatrists – Jean Delay and Pierre Deniker – showed Thorazine to “tranquilize” the symptoms of schizophrenia without worsening the person’s depression. Called antipsychotic medication, psychiatrists for the first time had a tool to help people with serious mental illness managing their symptoms. Length of hospital stay decreased significantly, returning people to the community. Unfortunately, Thorazine and drugs like it frequently had significant side-effects impacting almost every organ in the body. Prominent among these were marked emotional distress, as indicated by an inability to sit still, sensitivity to light, and a dry mouth. Atypical anti-psychotics emerged after several decades of research, first in Europe, and then in America in about 1990. These medications showed marked reduction in psychotic symptoms without the pronounced side-effects found with Thorazine, though it is important to note that the atypicals had a set of side-effects to be reckoned with in their own right. Also in the 1950s, Kuhn and Kline introduced tricyclic or anti-depressant medications which were shown to control many of the symptoms of major depression. Unfortunately, these drugs also caused significant side-effects. The introduction of a set of medications called serotonin-specific re-uptake

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inhibitors (SSRIs) reduced depressive symptoms with diminished harm. Towards the beginning of the 1950s, an Australian psychiatrist named John Cade introduced lithium as an effective medication for addressing the symptoms of bipolar disorder. The significant achievements of medications fostered a medical model of illness and treatment. These models have largely defined the core of clinical research. They have dominated the twentieth-century clinical agenda; namely, identify, develop, and evaluate medical strategies (largely medications) that will heal the person by suppressing psychiatric symptoms. Consider some contemporary agendas. In 2008, the National Institute of Mental Health spent more than 1.4 billion dollars in research, with the overall agenda clearly dominated by physiological models and corresponding treatments. Their efforts were hugely advanced by drug companies in search of products that will ameliorate mental illness; they spent billions a year in developing and distributing effective psychiatric medications. Drug company commitment to this process is mostly driven by increasing profits for investors.

Stigma today Many advocates believe medical models, which are often derisively described, are the source of much of the stigma of mental illness. Viewed traditionally, the medical model represents physicians and allied health colleagues as experts who should therefore dominate decisions about mental health treatment and psychiatric care. Supposed insight of the doctor spreads to more general life decisions; for example, people with mental illness are incapable of understanding their illness and thus need a parental figure to make appropriate decisions for them. These decisions are often conservative because the doctoras-expert believes relapse to be the result of rapid and ill-considered treatment. Common is the recommendation that people with schizophrenia should not try regular work, should live in nursing homes where they can be carefully monitored, and should be dissuaded from forming intimate relationships. Powerful reactions to models that rob people of self-determination and personal empowerment led to important grassroots approaches. Ex-patient Clifford Beers, for example, wrote about his experiences in hospitals in A Mind that Found Itself (1905). Beers’ efforts led to the founding of what is now called Mental Health America, a group of community advocates seeking to improve the quality of services for persons with mental illness. In the 1950s, persons released from state hospitals in New York City gathered together on the steps of the Public Library to provide support and counsel; fundamental relationships like these were often dismissed in mental health care as not potent or germane

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to the biological basis of the illness. This group of people called themselves WANA (We Are Not Alone) and built an essential support network that helped them when returning to the city. At about the same time, GROW began in Australia when Con Keogh and other former mental patients sought a group of peers in a sharing and caring community. They felt alienated from a community which could not understand their experiences and chose to view these differences as weird or wrong. GROW was set up as a 12-step program meant to develop a “sharing and caring community” to promote mental health where these people lived and belonged. In the 1970s, survivor groups appeared such as the Insane Liberation Front in Portland and the Mental Patient’s Liberation Project in New York City. These groups emerged frustrated with mental health services that did not see them as people. Efforts of survivor groups were crystallized in Judy Chamberlin’s 1978 book, On Our Own: Patient Controlled Alternatives to the Mental Health System. Survivor has an interesting meaning here: not surviving mental illness! Survivor means having withstood the dehumanizing and disrespectful reactions of society and its agents charged with treating mental illness. MindFreedom International is a current and energetic group meant to carry on the survivor tradition (www.mindfreedom.org). One of its more provocative events was a 2003 hunger strike meant to highlight “challenges” to the American Psychiatric Association (APA), US Surgeon General, and NAMI. Prominent among these were a challenge to produce incontrovertible proof that mental illness is a brain disorder. Led by MindFreedom advocate David Oaks and seven peers, the group was able to sustain their hunger strike for more than a month. Notable from this effort was forcing the APA and NAMI into a public debate about these issues.

Other efforts to erase the stigma Insights of people like Beers, Chamberlin, and Oaks are important in their historical significance. Their viewpoints challenged the very core of mental health practice. Other contemporary concerns about stigma and discrimination are not as radical. For example, NAMI – a group started by parents for persons with severe mental illness – completed a ten-year campaign to identify and correct misconceptions about severe mental illness. In no way does this group believe that biological models of schizophrenia are a myth and that psychiatry perpetuates this falsehood. NAMI is a major benefactor of research that seeks to identify and cure the biological causes of severe mental illness. Members of the group recognize the insidious effects of stigma and misconception.

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Seeking a balance between medical models and personal empowerment are now echoed by many state mental health systems, traditional guardians of biological interventions for mental illness. States have developed, for example, offices of consumer affairs to promote interactions between persons with mental illness and the citizenry as a whole. These consumer advocates present themselves and peers as examples of recovery and successful living. The US Government further advances this priority. Its Substance Abuse and Mental Health Services Administration (SAMHSA) has an office on consumer empowerment and funds extramural projects that attempt to discount stigma. SAMHSA has gone online with a website that nicely lays out resources to address stigma in various different settings: work, housing, schools, and neighborhoods (www.stopstigma.samhsa.gov). SAMHSA has also sponsored two large media campaigns. Most recent is “What a Difference a Friend Makes!” The take-home message is that mental illness is around us all and therefore it needs not be frightening or avoided. Instead, family members and peers are a fundamental structure from which dealing with mental illness begins. About six years earlier was the Erase the Barriers Initiative, an eightstate effort to decrease stigma using public service announcement and public education strategies. Even service groups made up of private citizens have shown their concern about stigma. Rotary International, for example, inaugurated “Erase the Stigma,” a campaign to educate business leaders from across the United States about the truths and misconceptions of severe mental illness.

Stigma and the media The media are a large, some believe the principal, source of stigma. Hence, we examine their dominance to understand the twenty-first-century context. Media in its various forms have suppressed stigmatized groups since humans first began recording their thoughts and behaviors. Socially given stereotypes partly represent cultural lore about a group, handed down by community elders and others in authority; these are our myths and legends. Many centuries ago, these myths were learned around the campfire, often as stories from respected elders. Mass media serve this role in modern times. Noted social psychologist Sam Keen authored Faces of the Enemy (1986), where he reviewed ways in which the written word and artistic creations have been used to stigmatize groups beyond those labeled mentally ill. Prominent in Europe and America is the impact of media vehicles such as magazines, movies, television, and newspapers. Western countries, for example, have a truly horrible record of disrespecting

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Africans and Asians as animals, frequently as monkeys. Such representations seem to legitimize laughing at or more directly harming people from these groups. Consider how most of the Western world, and across much of the globe for that matter, sought to hold down women through the media. Women who are demure, subservient, and obedient are the ideal; those who are assertive are portrayed as ignorant and out of touch. Lastly, consider the Western agenda about gays, lesbians, bisexuals, and transgenders. Gays are described as effeminate, child molesters who are met with disgust. Lesbians are another version of the assertive and disparaged woman. Governments, especially in America, believe single-sex marriage is an abomination and seek to stop gays and lesbians from sharing marital benefits (most notably, health care). If there is a positive side to this picture, it may be that public media supporting the stigma of ethnicity, gender, and homosexuality have been muted. Less common is the stigma from television, movies, and the print media related to ethnicity and gender. Disrespectful images of women and people of color were gone from many newspapers and magazines, and greatly diminished in movies and television. The relationship between media and sexual orientation remains a bit troublesome, though there seems to be significant improvement here too. We do not mean to presume the stigma of gender, ethnicity, and sexual orientation has been erased.1 Depictions of people with mental illness are still prominent, however, and frequently represent them as dangerous or inept. All the reader needs to do is listen to talk radio on the way home from work and count the number of times the host says “crazies,” “daft,” “wacko,” or “nutters.” The stigma of mental illness is in the forefront and hurtful. Otto Wahl wrote a trenchant book called Media Madness (1995). He found that 70 to 80 percent of the time, media portrays people with mental illness as dangerous, unpredictable, or otherwise people to be feared. Wahl’s book is now 15 years old; one might hope his examples are stale and irrelevant. His work might seem out of date because stigma should have mellowed since then. Findings from American research on violence perceptions reviewed earlier in the book shatter such notions. The stigma has been getting worse over the past 50 years. There are current and compelling examples of stigma and the media. In July 2002, for example, Trenton State Hospital in downstate New Jersey had a fire. The hospital is familiar to many because it is the setting that Nobel Laureate John Nash from A Beautiful Mind was admitted to when his illness worsened. Luckily, no one was injured in the fire but the damage was still significant. The next day, the local Trentonian ran a shocking headline.

1

Some social scientists have called this pattern of change “modern racism” (Blatz & Ross, 2009), namely social pressures have caused prejudice and discrimination to go underground. They are still active, just not apparently so.

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Challenging the Stigma of Mental Illness “Roasted Nut!”

There are many, many examples like this. Groups have emerged that track these examples and respond, when especially disrespectful or otherwise harmful. The United Kingdom’s Rethink assumes this role, a collection of volunteers organized into more than 340 services including its anti-stigma arm. StigmaBusters, part of NAMI, has created an online community dedicated to tracking and, when appropriate, responding to stigma in America. StigmaBusters posts monthly alerts listing troublesome examples. Consider this example from November 2008. In a recent episode of ABC’s hit show Desperate Housewives, mysterious Dave Williams moves to the neighborhood; gossip quickly spreads that he was recently released from incarceration at a program for the criminally insane. In the same episode, Dave kills his psychiatrist and sets a popular nightspot afire. Examples like these perpetuate the most difficult stigma; namely, people with mental illness are dangerous, unpredictable, and hence should be avoided. Many more examples follow from television, but also from movies, newspapers, advertising, and magazines. Headlines in the London Evening Standard read “Maniac killed twin sisters” in April 2005. At the same time, the Daily Mail posted “Knife maniac freed to kill. Mental patient ran amok in the park” in February 2005, “Violent, mad. So Docs set him free” (The Sun, February 2005), and “Royal stalkers are ‘dangerous psychotics who need help’” (Telegraph, October 2008). The news media are similarly harsh in Asia. In response to a murder in May 29, 2009 by a suspect thought to be mentally ill, the Hong Kong Apple Daily printed comments by a legislative councilor: “Government discharged those psychos to the society in an inappropriate way may endanger the safety of the innocent citizens.”

There are too many examples Halloween is a yearly event where the stigma of dangerousness and mental illness is exploited. Fright Night Scream Park in Clovis, California is an example. In 2009, the park included two attractions: The Asylum, a psych ward gone very wrong. Recently the patients have taken over. Nurses and doctors are being twisted into the very patients they meant to help. Enter the Asylum and test the limits of your sanity! Psychosis, where the clowns are out to play! This world of sensory alteration and fantastic perceptions is not “clowning around.” Dazzle your senses in a world of three dimensional doom as the freaky circus psychos roam.

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In 2007, entrepreneurs bought the Weston Hospital in Weston, West Virginia, renamed it the trans-Allegheny Lunatic Asylum, and provided year-long venues for being exposed to the dangerous patient. They provide ghost tours, but not for the faint of heart. “The Asylum has had apparition sightings, unexplainable voices and sounds, and other paranormal activity reported in the past by guests and staff. Step back in time and see how the mentally insane lived, and died, within these walls.” Even civic-minded groups unintentionally fall into the fright-fest trap. In 2004, the Gainesville Jaycees advertised an Insane Asylum Haunted House for the holiday. October 2004 featured Universal Orlando Theme Parks as hosting the most terrifying Halloween event ever. Media kits marketing the event included committal forms and straitjackets for journalists reporting the program. Recent movies are troublesome, perhaps mostly because they engulf viewers in disrespectful portrayals. In Batman: The dark night, Batman describes one of the Joker’s henchmenas a paranoid schizophrenic, “the type of mind attracted to the villain.” Three years earlier was Batman begins. Here a corrupt psychiatrist had planned to put a drug in the water supply which would cause people to have psychotic episodes. In the comedy Tropic thunder, characters in the movie repeatedly use the word “retard.” Lionsgate Entertainment distributed a dark comedy called Wrist cutters: A love story. Of particular concern to about 20 advocacy groups was their media campaign which included cutouts of characters jumping off a bridge, electrocuting, and hanging themselves. Commercial ventures also use mental illness stigma. Advertisements are background noise that faintly, but repeatedly, influence the public. Wahl listed examples in his 1995 book: a clothing store uses an image of Beetle Juice saying, “Maniac out of control: All our merchandize is first quality.” A car dealership has a man in a straitjacket with the headline, “To offer these deals we’d have to be committed.” A record store uses a silhouette of a person with mental illness with the tag “Crazy Eddie Record & Tape Asylum.” The message in advertising is subtle but widespread. More recent examples can also be found. About five years ago, a printing company in a small town in Ohio dressed up its front window in a horrid way. The storefront showed a desk and kicked-over chair with someone’s legs hanging from above, obviously suggesting a recent suicide. At the bottom of the window was the message, “Contemplating Suicide?” Get your notes printed here. More recently, Burton Snowboard Company of Vermont unveiled its Promo line in 2008. Their snowboards prominently included graphic images of self-mutilation on the top surface of the board. In 2006, Archie McPhee & Company in Seattle distributed an offensive toy called the Obsessive Compulsive Action Figure. It included a surgical mask and sanitary towelette as well as a 10-point self-assessment of obsessive–compulsive disorder on the back of the box. A recent advertisement for Wendy’s, an American hamburger chain, has a customer who cannot decide what to order

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because he suffers from multiple-personality disorder. The Vermont Teddy Bear Company featured the “Crazy for you Bear in a straitjacket.” It comes with a committal report and symptoms that include “Can’t eat, Can’t sleep. My heart’s racing.” A Nintendo full-page advertisement featured a scene from a community room in a mental institution. The advert showed a patient with a horrified facial expression, wrapped in a straitjacket. Two uniformed guards, each with a superimposed grotesque cartoon head and facial expressions, were standing watch, with the headline asking, “Ever had the feeling you’re going bonkers?” The media source with the greatest impact on Western nations is television. In October 2007, contestants on America’s Next Top Models perfected their runway walk while wearing straitjackets on a set laid out as a psychiatric ward and coaches decked out as nurses. Show producers reasoned that contestants had to be able to withstand the high-stress, high-stakes world of super-modeling. In 2006, Fox TV aired a reality show – Unanimous – where contestants in an underground bunker determined who would receive a $1.5 million award. One of the contestants named Richard admitted that he had once been treated in a mental ward (for depression and alcohol abuse). Reactions among contestants soon degenerated into a stigma fest; Richard is “crazy as a crap-house rat,” “a whole bunch cuckoo,” and “not working with a full deck.” The Women’s Entertainment Network aired an original reality short called Bridezilla in 2006. Brides on the show change from sweet and innocent to dangerous and “certifiable.” A bride on their website is viewed as “engaged” to “enraged” to “committed” where she ends up in a straitjacket. A September 2004 episode of Dr. Phil showed the program’s host blaming parents for the serious psychiatric disorders of their children. The 2004 MTV Movie Awards Show was troubling. The show’s opening scenes featured fast-moving animated clips of people in a psychiatric hospital, including a person chained to a wall, another receiving electroshock therapy, an evil-looking girl in a room with blood-smeared walls, a set of fighting dogs that apparently were delusions, and people sitting in a “group room” laughing maniacally. Let us reconsider the surprising research discussed at the beginning of this chapter; namely, survey research showed the dangerousness stigma of mental illness had increased by almost 2.5-fold. In response to findings like these, we would expect social advocates to be discouraged and wondering how this could happen. After considering the breadth and depth of media and mental illness, an alternative question seems more appropriate. “How could people do anything but fear and want to avoid people with mental illness?” Newspapers and magazines. It is especially ironic to think that the arm of society entrusted with providing facts often perpetuates stigma. News sources are expected, perhaps naively so, to print honest and objective information. Unfortunately, research shows that this is not the case. Consider a 2008 issue of

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the Reader’s Digest which titled an article: “Normal or Nuts?” The author provided a silly and sophomoric discussion of ways in which people experience mental illness. 1. Chances are, you don’t sound stupid most of the time. 2. Even if you do say something idiotic once in a while, so what? Everyone does. 3. Most people are so self-absorbed, they aren’t paying as much attention as you think. In 2006, the same magazine published a distasteful joke: “How do crazy people go through the forest? They take the psychopath.” Comics in newspapers also run storylines that disrespect the experiences of mental illness. Consider a cartoon by Gary Larson, a very talented humorist of the 1980s and 1990s. The single panel showed a therapist taking notes in his chair with the patient talking freely on the couch. On the pad of paper, the doctor writes, “Just plain nuts.” Not only does the public laugh at people with mental illness, but so too the therapist; the person with years of education and an expert on psychiatric ideas sees the client’s troubles as funny. Tabloids run blatant examples of stigma almost every day. Headlines from the New York Post screamed “Freed Mental Patient Kills Mom.” The Daily News, also from New York City, had these headlines: “Get the violent crazies off the street.” But these arewhat tabloids do,write provocativeand hurtful thingsto get people to pick up and buy them. Unfortunately, more respected newspapers make similar errors, though not for such a blatantly economic reason. Chicago’s Reader, a highly esteemed and recognized weekly, ran this headline in 2001: “Is this man a monster?” The story recounts Lee Robin who killed his wife and daughter in a drug-induced psychosis. Robin then spent 13 years in a forensic inpatient unit. At the time of the story, the author noted that Robin’s symptoms were well controlled by medication. His prospective neighbors, however, believed him still to be a monster. The Reader example is important. By most standards, the journalist did a balanced job in considering the issues. The author was trying to cover both sides of an important argument. But the headline was the concern. It was sensational and we suspect that most people who glanced over the front page most recall the equation of mental illness and monster.

Positive use of media Since 1997, the Jimmy and Rosalynn Carter Center in Atlanta Georgia has administered the Rosalynn Carter Fellowships for Mental Health Journalism.

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The Fellowship endows a project proposed by active journalists from all imaginable media. Fellows are paired with experts in mental health policy and the stigma of mental illness for guidance during the year-long venture; Otto Wahl was one such expert. Journalists then use the year to finish their product. The program has an international following. Paul Diamond from New Zealand produced a radio piece interviewing two Maori women who surmounted significant hurdles to become leaders in their mental health system. Subashni Naidoo, a reporter with the Sunday Times in Durban, South Africa, wrote about how white male suicides seemed to be on the rise, perhaps because of economic challenges. American Kathi Wolfe wrote compellingly about mental illness and the gay community. There are also examples from the entertainment field that challenge the stigma and promote more positive conceptions about mental illness. Since 2005, SAMHSA has sponsored the Voice Awards, hosted annually in Hollywood. The Awards recognize movies and television that actually challenge the stigma of mental illness. Television examples from 2008 include episodes from Dirt (a central character of the show, the photographer, overcomes schizophrenia and visual hallucinations as he successfully does his job), General Hospital (where the central character, Sonny Corinthos, successfully struggles with bipolar disorder), and Monk (a perennially respected show where the detective astounds viewers with his deductive skills all the while struggling with obsessive–compulsive disorder). The Voice Awards also recognize feature films and documentaries. Is there a place for sarcasm? Many of our readers are from the West where lampooning groups is central to our culture. Hence, we might expect social critics to dismiss our summary of the media as political correctness and that mental health advocates should back off. We would not be surprised if some readers quietly chuckled at the punch-lines. Do mental health advocates need to lighten up a bit? Sarcasm serves an important goal in many societies. It provides a chance for the common person to poke fun at those in power. When an editorial cartoonist helps us to laugh at government officials, we remind politicians and ourselves that we are all from the same stock. No humans can view themselves as higher caste. Unfortunately, sarcasm and the media do not help those who suffer prejudice and discrimination rise to similar middle ground. Instead, it further reminds those one step down that below the threshold is where they remain. Recall that the “step-n-fetch it” humor of previous generations had this purpose for African Americans. Humor that represented Blacks as less intelligent, or less hardworking, or more brutish, were trying to, and in effect did, keep this group down. We would be horrified if ethnic humor continued today. In like fashion, humor against persons with psychiatric disability keeps them under the thumb. It dehumanizes their troubles and allows a frequently

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hostile community to continue in its disrespectful and discriminatory actions against them. It is also important to state here that answers to the question of “What is stigma?” hugely surpass concerns about language and the media. Disrespectful images hurt the person, but changing the media will not wipe away stigma’s harmful impact. If anything, the media reflect society. Media depictions will decrease when cultures are able to corall their disrespectful images. That is the focus of much of the rest of the book. The next chapter provides a common conceptual base for understanding stigma. Stigma is a complex phenomenon that has been described from such diverse perspectives as social psychology, sociology, cultural anthropology, and socio-cultural history. Indepth review of these perspectives far exceeds the goals of our book. Even more, digging into theoretical models may distract readers from our purpose: erasing the stigma. Hence, most of the book’s remaining chapters focus on ways to challenge the stigma. We seek to balance findings from the research literature with hands-on techniques meant to advance an advocate’s agenda.

Where to begin stigma change There are some overall issues that we address here with strategies meant to generally orient the reader. The first is an exercise to sensitize a person to the stigma of mental illness. Stigma is both a subtle and broadly felt experience. The advocate needs to make obvious the stigma before attempting to change it. A second bit of evidence shows everyday language to perpetuate stigma. Hence, we review an approach to help make the person aware of language effects.

Sensitizing persons to mental illness stigma Most people are unaware of how commonly mental illness is stigmatized. Figure 1.2 provides an exercise that sensitizes persons to what might seem to be relatively minor statements about mental illness. It includes two steps. First, individuals filling out the worksheet are asked to list various statements about persons with mental illness heard on the radio, seen on television, or read in the daily newspaper. Rather than asking the individual to listen for stigma, they are encouraged to identify “over-generalizations and misattributions about mental illness.” Most participants are quickly amazed at how

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Challenging the Stigma of Mental Illness

Make a list of over-generalizations and misattributions about mental illness that you hear on the radio or see on television. For example: "That person acts that way because he's crazy." "All psychos are violent." "Crazy people can't take care of themselves." "Psychotics should all be locked up."

Replace terms like crazy and psycho with the name of an ethnic minority group. For example: "That person acts that way because he's Black." "All Latinos are violent." "Irish people can't take care of themselves." "Jews should all be locked up."

Most people who might have thought these were harmless statements about mental illness quickly become horrified at the similarity between disrespecting persons with mental illness and persons of color. In fact, some advocates for disability have equated the experience of mental health stigma with the injustice of disrespecting ethnic and religious minorities.

Figure 1.2 An exercise that sensitizes persons to mental illness stigma.

many stigmatizing attitudes they can generate and how many the media still perpetuates. Second, individuals are asked to replace key words in statements that represent mental illness (e.g., crazy, wacko, mental case, psychotics) with a term that describes an ethnic (Latino or Black) or religious minority (Jews). Most Westerners have become sensitized to inappropriate language used against people of color. Hence, they are frequently dismayed to discover the injustice that has been perpetrated against an ethnic minority still continues when such language is used to describe mental illness. This kind of exercise works effectively in schools with youngsters as well as at church gatherings and adult service club meetings. Participants soon become aware of the disrespectful language about mental illness that permeates our culture.

Stigma is Personal

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Language and stigma change Many advocates support person-first language to challenge stigma. In this view, people are referred to as a “person” plus the condition: a person with mental illness, people with schizophrenia, people taking medication. This language reminds us that individuals with mental illness are people first; namely, their character and assets centrally reside in their identity as a person. Experiences with mental illness and the mental health system are incidental and in many ways extraordinary. Perhaps they have relevance in a service setting, but in much of the rest of the world they are just people, or perhaps also spouses, parents, co-workers, and neighbors. We always teach our students that people with mental illness share infinite goals, interest, desire, and skills. “They” are very much like “us.” Only a small aspect of their life – albeit a prominent part for many people – defines their mental health experience.

Back to the personal story The stories earlier in the chapter were written to highlight important and recurring questions about stigma. Many of these stories represented a mix of people we (the authors) have encountered personally or professionally. The first one, however, is true; it is about friend and colleague Bob Lundin (pronounced Lun-deen). Bob has struggled with schizoaffective disorder for more than 30 years. One of us (PC) worked with Bob for almost a decade while we were employed at the University of Chicago Center for Psychiatric Rehabilitation. His thoughts were extremely important to us as Center faculty and peers sought a felt model of recovery and empowerment. Bob and I wrote the first edition of Don’t Call Me Nuts! Of special importance to us then were Bob’s life experiences, what it means to struggle with a serious mental illness and, despite his successes, the ongoing pain of dealing with stigma. As part of his job at the University Center, Bob led colleagues on advocacy projects regarding mental illness stigma. We remember one time he got a group together at a movie house in DuPage County to protest the release of Me, Myself, and Irene. Strategies on tackling problems like these were immensely useful for the rest of us. Mental illness and mental illness stigma are personal for the authors of this book too, especially PC. I have been struggling with mental illness that is somewhere between Emil and Betsy. During college, I showed the signs of major depression and anxiety. Despite some significant emergencies, most times I was able to stay out of the hospital with the support of family, friends,

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Challenging the Stigma of Mental Illness

mental health professionals, crisis programs, and psychiatric medication. Nevertheless, my struggle with mental illness took its toll. During a sevenyear period, I dropped in and out of colleges and jobs, moving repeatedly in the process, all in an effort to deal with my symptoms. It is interesting to note that despite many years of graduate school and earning a doctorate in clinical psychology, I did not realize I had a major mental illness until meeting a young resident who asked me during a crisis interview how long I had been struggling with depression. Are the subtle effects of stigma so treacherous that I would not and could not recognize the mental illnesses thwarting my life goals? I did not publicly identify myself with mental illness for more than 25 years. I think it is likely that my professional interests in research and practice related to psychiatric disability and rehabilitation resulted from these experiences. Until only the past few years, however, have I publicly discussed my encounters with mental illness. Perhaps the pressure for mental health professionals to seem above the fray has led to some of this reluctance; I am a licensed clinical psychologist after all who has learned to help people with other problems, not my own. Moreover, I have always felt that my struggles with mental illness were not as severe as the experiences of people like Bob. Framing my challenges at their level somehow lessens the stories of others. For many years I believed that mental illness was only a small part of me and my past. Hence, while I might include my experiences with mental illness as part of the “I am” statements that describe Pat (I am a person who has been overwhelmed by depression; I am a person who has had to live with mental illness), these kinds of statements have been far down on a list of preferred ways in which I would describe myself (e.g., I am a husband and father and have a good career). But, as I work more on issues related to stigma and stigma change, both as a social scientist and as an advocate, I better recognized “I am” statements about mental illness. One might think that both my scholarly and personal interests and actions about stigma would protect me from some of the prejudice traps that are discussed in this book. Unfortunately, this is not so. I remember the piercing shame of having to seek out a professional during crisis times; a mixture of I must be weak and my family is embarrassed. One might think this kind of stigma would ameliorate as I live with the disorders. More recently, I was sharing my experiences with depression and anxiety among a men’s group at our Unitarian church. Bob, sitting to my right, and a close friend, patted me on the shoulder and sincerely said, “You have done pretty well for yourself, Pat, given everything!” “Oh, no Bob,” I replied, “No, no, I’m not like them!” I remember about a year ago when I was being admitted to a hospital, this time for a physical problem, that I told my wife on the phone, “Make sure you tell Abe and Liz (our children) this admission is for an infection. I am not going into the hospital this time because I’m nuts again.”

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Mental illness stigma has been personal for another author of this book (DR). I experienced the stigma of being a family member, as my beloved younger sister, Becca, with whom I was very close, suffered from serious manic depression. In addition to the pain and concern for her, I felt ashamed and defensive. What did the fact that Becca suffered from a mental illness imply about me and the rest of my family? Becca’s illness, so I felt, meant that something must also be wrong with me, or alternatively that my family or even I myself might have caused Becca’s illness. Feelings of guilt and shame were common and I struggled with how much to share with others and concern about how they might respond. Becca took her own life at the age of 23. A few weeks before that, in one of her last letters she wrote, “I wish people were more understanding towards people with mental illness.” Nearly 20 years have passed and a major force in my life has been to try to do what Becca wished for – try to make people more understanding. Mental illness stigma is personal! We authors shout out this assertion. Some of the ways we have learned to deal with our own stigmatizing experiences make it to the pages herein. But, we bring an important and perhaps more unique perspective to these problems. Namely, we examine many of the assumptions of stigma and stigma change with the bright light of social science. Sociologists of the research enterprise know that “knowledge is power”! We seek to arm the world of advocates with the tools that emerge out of this knowledge. We must admit: stigmas are interesting theoretical phenomena, stimulating many of our research juices. Frankly, we believe our group has put together some interesting perspectives on mental illness stigma. But this is personal. Advocates do not want to understand stigma better. They want to erase it. We do begin with overall information about what stigma is. But we do that only as a platform from which stigma change strategies supported by research are proffered. They are questions that demand action. Some of these answers are the focus of the remaining chapters.

2

Understanding and Measuring Stigma

What we anticipate seldom occurs; what we least expected generally happens. Benjamin Disraeli Stigma may seem to be an obvious problem but in reality poses a vast and perplexing predicament for society. To beat it, we need to understand its scope and comprehend the obvious as well as the subtle ways it raises its ugly head. We must grasp the breadth of its impact and determine the insidious ways it infects public opinion against those with psychiatric disability. Fortunately, mental health advocates and social science researchers have been studying stigma and ways to change it for the past several decades. In this chapter, we review what is known about stigma: how widespread its venom and inglorious its impact. Only with this kind of information are we able to handle its challenges. It is becoming evident, based on cross-cultural studies, that the meanings, practices, and outcomes of stigma differ. In fact, cultural factors play a significant role in shaping the experience of stigma and at the same time determining the response to stigma in a particular society.

Challenging the Stigma of Mental Illness: Lessons for Therapists and Advocates Patrick W. Corrigan, David Roe, and Hector W. H. Tsang Ó 2011 John Wiley & Sons, Ltd

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Challenging the Stigma of Mental Illness

The scope of the problem Stigmas about mental illness are widely endorsed by the general public. Studies suggest that the majority of people in the United Kingdom, Western Europe, and North American countries endorse stigmatizing attitudes about mental illness. Although there is mixed evidence about stigma in Asian and African countries – perhaps the communal nature of these societies decreases stigma – most researchers remain concerned about negative attitudes towards persons with mental illness across the world. Stigmatizing views about mental illness do not seem to be limited to uninformed members of the general public. On the other hand, there are also reports suggesting that societies in Asian cultures have more severe stigma against mental illness. It has been suggested that Chinese culture attaches more importance to the collective representation of families, and having a mentally ill relative is considered something one should feel ashamed of, for it can imply an inferior origin of the family, failure of the parents, or even a sin committed by ancestors. Hence, many Chinese families have concealed their relatives’ mental illness in order to avoid stigma. This results in social isolation, which leads to limitations of emotional and practical resources important for dealing with the illness. Stigmatizing attitudes are not limited to mental illness. Persons with physical illness and disabilities are also the object of disparaging opinion. However, the general public seems to disapprove of persons with severe mental illness significantly more than persons with physical disabilities such as Alzheimer’s disease, blindness, or paraplegia. Research suggests severe mental illness has been viewed as similar to drug addiction, prostitution, and criminality rather than physical disability. Unlike physical disabilities, persons with mental illness are perceived to be in control of their illness and hence, responsible for causing it. Members of the general public are less likely to pity persons with mental illness, instead reacting to psychiatric disability with anger and believing that help is not deserved. Stigmatizing attitudes like these have a significant impact on mental illness. First-person accounts in Schizophrenia Bulletin, a professional journal published by the National Institute of Mental Health, repeatedly describe the pain of stigma and discrimination. Consider these excerpts: I knew what I had to do to stay in the community and did what was needed, but my attention was focused on my child. I chose to closet my illness, so my child would not feel stigmatized. I never talked of my illness to anyone except my immediate family and my psychiatrist. I became isolated regarding my illness; but I knew the stigma well and knew if my illness were known, neither I nor my child would be treated “normally” any longer. I was part of coffee klatches,

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shopping excursions, and lunches out with my friends and our children. It was fun, but I had an ache deep inside me – I wanted to be liked for who I was, someone having an illness, but I was afraid to reveal my illness to even my closest friends. (Valerie Fox, 2004, p. 763) “Erin, you are a scientist,” they’d begin. “You are intelligent, rational. Tell me, then, how can you believe that there are rats inside your brain? They’re just plain too big. Besides, how could they get in?” (Erin Stefanidis, 2006, p. 422)

More carefully sampled, survey research supports these accounts; one study found that 75 percent of family members participating in a nationwide survey said that relatives with mental illness had been affected adversely by stigma (Wahl & Harman, 1989). Family members in this sample believed that stigma decreased self-esteem, hindered ability to make friends, and undermined success in obtaining employment. Persons with severe mental illness living in New York City viewed stigma with similar concern (Link, Cullen, Struening, Shrout & Dohrenwend, 1989). They believed the public would exclude them from close friendships or competitive jobs because of their mental illness. The impact of stigma is not limited to the individuals diagnosed with mental illness. One in five respondents in the family survey reported lowered self-esteem and strained relationships with others because of stigma (Wahl & Harman, 1989).

Concepts for understanding stigma Now that we know stigma is widespread, how do we understand it? There is a variety of terms all related to understanding this idea of stigma; the terms used on the next several pages and throughout the book are summarized in Table 2.1. One way to understand stigma is as negative attitudes about persons with mental illness (Corrigan & Kleinlein, 2005). Attitudes combine seemingly factual statements that represent real-world observations (Those dogs are black) with values or emotional reactions to the fact (I hate black dogs!). Emotional reactions can be either positive (I think all black dogs are cute!) or negative (I think black dogs are mangy looking). Stereotypes are especially efficient types of attitudes about social groups. They are “social” because they represent collectively agreed-upon notions about groups of persons. For example, some might “believe” that the social group called Irish is prone to drink. Stereotypes are “efficient” because people can quickly generate impressions and expectations of individuals who belong to a stereotyped group; for example, that man in the uniform is a police officer, so he will likely be a good person to seek out when I need help.

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Table 2.1

Definitions of the various terms used to describe aspects of stigma. Examples provided are also especially relevant to mental illness.

Term Attitudes

Prejudice

Discrimination

Examples

The combination of seemingly factual views of the world and our values or emotional reactions to these facts. Attitudes can either be positive (representing something as valuable or reacting to with pleasant emotions) or negative (viewing something as lacking value or yielding unpleasant emotions). Stereotypes are attitudes about groups of people. They help us to think efficiently because we are able to understand persons quickly based on their group membership. Stigmas are negative stereotypes. Like attitudes, stereotypes are both positive and negative. Stigmas are negative stereotypes. Just because persons are aware of a stereotype does not mean they agree with them. Prejudice occurs when a person endorses a negative stereotype about a group. Discrimination is the behavioral action that results from prejudice. It represents the unfortunate ways people act when they believe and agree with a negative stereotype.

Desserts are sweets which provide a wonderful end to a meal (positive attitude). Desserts make me fat; I hate them at the end of a meal (negative attitude).

That man at the front of the room writing on the chalkboard is a teacher; he’ll know the answer (positive attitude). That woman on the park bench is talking to herself; she must be crazy (negative attitude).

That’s right, all men are insensitive clods. Ain’t it the truth. All mentally ill are dangerous. That guy’s mentally ill. He can’t pull his own weight. I’m not going to hire him. She just got out of the psych hospital. Those people are all dangerous. I’m not renting her an apartment.

Challenging the Stigma of Mental Illness

Stereotypes

Definition

Understanding and Measuring Stigma

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Stereotypes do not necessarily represent a group in a negative light. The police example is evidence of this. Stigma is stereotypes that reflect a group negatively. Research by British and American researchers has uncovered three sets of stigmatizing attitudes (or negative stereotypes) about mental illness that are commonly endorsed by the average person (Corrigan, 2005). 1 Fear and exclusion. Persons with severe mental illness are dangerous, should be feared, and, therefore, be kept out of most communities. 2 Authoritarianism. Persons with severe mental illness are irresponsible; their life decisions should be made by others. 3 Benevolence. Persons with severe mental illness are childlike and need to be cared for.

Perceptions about (how we view) mental illness Note how we said that attitudes seem to represent factual information. In reality, attitudes represent our impressions of fact – how we perceive the world, but not necessarily how it really is. Humans rely on careful observation of their world to understand it; the sights and sounds of interactions with others teach us who is useful and should be enjoyed versus who is dangerous and should be avoided. Unfortunately, cognitive researchers have shown that our ability to perceive and understand the world is often fooled rather than driven by fact (Levin & Simons, 2000). Stereotypes influence ways in which we comprehend stigmatized groups and frequently lead to misperceptions about group members. More specific to the concerns of this book, stigma affects the public’s view of persons with mental illness. The same person is viewed differently depending on the perceiver’s expectations of that person. These expectations, or labels, actually influence what we see or hear. Consider this statement by a person recently released from a psychiatric hospital. Sometimes I’m just not sure. I have these visions about what to do. But they disturb me greatly and I just don’t know how to act. I get so pent up inside I could scream. I want to run into the street, grab someone, and say, “Hey, do you know what this all means!”

Given stereotypes about mental illness, a member of the general population might perceive this as evidence that the person is psychotic (“I have these visions about what to do”), unable to control her emotions (“They disturb me greatly and I just don’t know how to act”), and likely to be dangerous (“I get so

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Challenging the Stigma of Mental Illness

pent up inside I could scream. I want to run into the street and grab someone”). Note, however, how perceptions change when we label the person as a frustrated community advocate who wants to stop gang violence in his neighborhood. He has a vision about how to change things. He is overwhelmed by the emotional experiences related to his dreams. This frustration and desire make him want to rile his neighbors. The same dialog produces very different interpretations of the meaning behind the statement. The impact of stigma is not limited to how we currently see and experience people around us. It also affects our recollections of persons in the future. Stigma can actually bias our memory so that persons with mental illness are recalled in a more negative light. Take, for example, Sam, a college student who relays 10 facts about himself during a job interview. Five of these facts are appropriate to an aspiring student (“I have ambitions of becoming a successful engineer”) and five represent “weird” experiences of a young adult (“Sometimes things are so stressful that I feel like I am living outside my body”). How would Sam be remembered if, during the interview, he was labeled a psychiatric patient? When the job interviewer sits down to write up her report about Sam a week later, she is likely to remember more “weird” things. Sam has out-of-body experiences; he may be a mental case. Few positives would be listed. If, on the other hand, Sam were labeled a hardworking dorm counselor, then the job interviewer would be likely to remember more appropriate facts: “Let’s see; that guy was taking a bunch of classes to become an engineer.” The effects of stigma and stereotypes are so broad they affect our memory of interactions with others. These conclusions suggest the general populace perceives and remembers persons with severe mental illness in a biased manner. Think of the problems this may pose for changing society’s stigma. Any information which is presented to the public about mental illness, even material that challenges psychiatric stigma, may be perceived inaccurately. Hence, stereotypes seem to be resilient to evidence that challenges them. ADVOCATE:

PERSON FROM THE GENERAL PUBLIC:

Did you know that most persons with severe mental illness are not dangerous, even in stressful situations? So you’re saying they are so socially inept that they can’t be assertive even when faced with tough situations.

The advocate is trying to challenge attitudes about pairing mental illness with violence. The person from the general public cannot hear this new information because she believes that most people with mental illness are incapable of caring for themselves. Unlearning stereotypes is a bit more

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difficult when information that contradicts these stereotypes is perceived incorrectly.

Prejudice – what we feel about mental illness Almost everybody is aware of stereotypes. We have all heard such nasty statements about the Irish as drunken sots, Catholics beholden to the Pope, and the mentally ill being dangerous. You cannot, for example, live in a Western culture without having learned statements like these in the past. Nor are there societies in the world which do not have stereotypes about a group. However, being aware of these stereotypes does not mean that a person agrees with them. Just because I have heard that all persons with mental illness are incapable of making decisions does not mean I concede that assertion. Agreeing with stereotypes is the definition of prejudice. Saying “That’s right, all Micks are drunks” is prejudicial to Irish. Admitting that all persons with mental illness are incompetent is prejudice. Prejudice can be public; for example, openly stating that all persons with mental illness are homicidal maniacs. Alternatively, it can be private. It might take the form of haphazard agreement with stigma; “I suppose that news story about all mentally ill being homeless is right.” Alternatively, it may appear as a person who fully endorses negative stereotypes about mental illness, but chooses not to let others know. I’m sure psych patients are dangerous but I’m not going out on a limb and say anything at the school board meeting.

Behaviors (how we respond) towards mental illness Perhaps the worst part of stereotypes and prejudice is its behavioral consequence, discrimination. People react to prejudice with discrimination: . . .

Ali is mentally ill and unreliable. I’m not going to hire him. Phil has been in a psych hospital. No way I’m going to rent an apartment to him. Sachi has spells of depression. I’m not letting her daughter Laura come to our play group.

Although being viewed negatively by the majority may generate anger or self-reproach, it is loss of jobs, unfair housing, diminished income, and the countless other kinds of discrimination that cause the greater misery. Hence,

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strategies that seek to change society’s reaction to mental illness must not only replace stigmatizing attitudes with more informed opinion, but must also change the ways people act towards persons with mental illness. Behavioral discrimination occurs most obviously when one person is in a more powerful role compared to the person with mental illness. Property owners do not rent an apartment to a person because he was in a psychiatric hospital. Employers fail to offer a job interview because the person has not worked recently. A store clerk will not accept a credit card from a person because the person seems depressed. Neighbors fight against a proposal for opening a halfway home in the area. Research shows the very sobering impact of discrimination. Investigators reviewed data on Medicare recipients who were age 65 and older and were hospitalized for heart attacks in 1994 and 1995 (Druss, Bradford, Rosenheck, Radford & Krumholz, 2000). More than 5,300 of these persons were also diagnosed with mental disorders such as schizophrenia, depression, and substance abuse. The researchers wanted to know the extent of service received by these persons with mental illness compared to the rest of the population. The results were staggering: . . .

28 percent were less likely to undergo catheterization, the “gold standard diagnostic test” for heart disease; 25 percent were less likely to undergo angioplasty (in which a small balloon is inflated inside an artery to clear away fatty buildup); and 32 percent were less likely to have bypass surgery.

These data clearly show the impact of discrimination; it may kill people with mental illness because they do not receive the kind of medical care that is standard for everyone else! Behavioral discrimination also takes more subtle forms. Train passengers move their seats when a person with facial tics sits next to them. Members of the general population refuse to work at homeless shelters because “you know they are all cast-offs from the psych hospital.” Mothers do not permit their children to play with a classmate whose father is known to suffer from mental illness. This kind of pulling back is hurtful to persons with mental illness who are trying to fit into their community. Stopping discriminatory behavior is not enough. Affirming actions are also needed. Affirming action begins with the kind of legal efforts that require hiring a person or leasing property regardless of membership in a stigmatized group. Affirmative action also includes efforts to reach out to persons with mental illness and include them as full members of the community. Churches, synagogues, and mosques need to actively encourage people with mental illness to join them. Social clubs and civic groups need to pursue them.

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Politicians running for elective office need to seek their grassroots support. The general public needs to join the stigma-busting agenda. Just as racial injustice is the problem of the entire population (not just persons of color), so stigma against mental illness needs to become the concern of all, not just people vested with personal interests. What is the relationship between attitudes and behaviors? How do we change discriminatory behaviors and promote affirmative actions? One of the prominent questions of research psychology is whether behavior change first requires improvement in attitudes (Ajzen & Fishbein, 2005). Does a person change the way she acts towards a group (e.g., a wealthy executive stops talking down to blue-collar workers) when her attitude towards that group improves (“I now realize blue-collar employees are hardworking like me”). This assumption is mapped out in the flow chart in Figure 2.1. According to this diagram, people behave based on their perceptions of the world. First a person sees or hears someone to whom she or he must react. Obviously, reactions will differ depending on who was seen and what that actor was doing; we would respond differently to a mugger versus our grandfather. The example in Figure 2.1 has a person sitting on a bench talking to herself. Perceptions by themselves are not enough to come to conclusions about someone. Attitudes and other knowledge structures add interpretation to perceptions. They help make sense of perceptual experience. Based on personal history, the general public has developed attitudes which lead them to believe the person on the bench is rehearsing lines for a play, talking aloud a problem with her boss, or grossly psychotic. Members of the general public then decide how to respond to a stimulus based on their interpretation. The person representing the general public may be intrigued by the young actress and sit down to talk. In the stigmatizing example of Figure 2.1, the person from the general public is frightened by the “dangerous psychotic” and moves away. This chain of events suggests behaviors can be improved by starting with the first link in the chain. Hence, one way to stop discriminatory behaviors is to change attitudes from “that person is crazy” to “that’s a person about whom I need to know more.” Perceptions and attitudes are the place to begin in changing discrimination. Education programs target attitudes and perceptions (see Chapter 3). Despite this carefully tested model, there is evidence that attitude change frequently does not affect behavior. We all know people who resolve to change their health habits (“I need to eat better; I am going on a diet”) but who in fact continue the same old ways (“Despite my intentions, I’m going to a eat those greasy potato chips”). Changing discrimination may require two attacks. Efforts need to target attitudes and perceptions. However, when these efforts

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Behavior

Attitudes

Stigma Example

I see a person on the park bench who is crazily talking to herself.

People who talk to themselves are dangerous.

I leave the park and call the police.

Open-Minded Example

I see the person on the park bench who is talking to herself.

I do not know that person. I have no attitude toward her.

I sit on a nearby bench.

Figure 2.1 The relationship between perceptions, attitudes, and behaviors.

Challenging the Stigma of Mental Illness

Perceptions

Understanding and Measuring Stigma

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are too slow, stigma-busters need to be more demanding. In these cases, discriminatory behaviors should be challenged directly. Protest and boycotts (also discussed in Chapter 3) are effective tools for this goal.

Where do we learn stigma? Given how immoral stereotypes and stigma are, from where do we learn them? Two answers to this question are summarized in Table 2.2 (Park & Hastie, 1987). Stereotypes that are constructed by experience are acquired through regular contact with members of a particular group. The public learns stereotypes about mental illness by directly interacting with persons who have a psychiatric disability. This kind of approach assumes the public acts as a statistical scientist. If I meet ten people with mental illness, all who are homeless and poorly dressed, I learn that mental illness results as an inability to care for oneself and ending up on the streets. If I meet zero persons with mental illness who work, I infer that persons with mental illness are incapable of obtaining and keeping a regular job.

Unfortunately, as any good statistician can tell us, numbers are wrong. What might be concluded about the Irish if they were only encountered in taverns? Hence, stereotypes based on limited experience can be full of errors. They are typically overridden by the second way in which stigmas are learned. Socially given stereotypes represent cultural lore about a group handed down by community elders and other authorities (Devine, 1989). They come from our myths and legends. Many centuries ago, these myths may have been learned around the campfire. Mass media serve this role in modern times. Movies, newspapers, radio programs, the internet, and television are common sources of information about severe mental illness. Unfortunately, much of this information is inaccurate and leads to stigma. Consider the discussion in Table 2.2

Two ways in which stigma are learned.

Constructed by experience

Socially-given stigma

We develop attitudes about groups based on the sum of our interactions with them. Persons with limited experiences of a group will develop limited attitudes. Attitudes are learned about groups based on our lore, myths, and other representations of them. In America, television, films, and other media are the biggest source of this kind of stereotype.

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Chapter 1; given these examples, it is no wonder that the average person learns, from a very young age, that persons with mental illness are dangerous and cannot care for themselves.

Signals that lead to stigma How might someone know who would be hurt with mental illness stigma and to whom it does not apply? What are the “signals” that a particular person has a mental illness? How does the average member of the general population recognizes that person as wacky and as someone who should be avoided, while another is “normal”? Erving Goffman (1963) suggested that cues which signal the stigma of mental illness might not be readily apparent; he illustrated this point by distinguishing easily hidden from readily obvious kinds of stigma. Examples of each group are summarized in Table 2.3. The group with relatively obvious characteristics that lead to stigma include persons from a cultural minority with an apparent physical trait that is obvious to the public; for example, Africans have dark skin. Persons with easily hidden stigma, on the other hand, can conceal their condition; they have no readily manifest mark that identifies them as part of a stigmatized group. For example, most do not know whether a person is gay unless that person reports it. The public cannot determine whether some people are mentally ill by looking at them. The general public must infer mental illness from four signals: labels, psychiatric symptoms, social skills deficits, and physical appearance. According to labeling theory, persons who are called mentally ill (that guy at the front of church is “mentally ill”) or are otherwise known to have such a label (like

Table 2.3 Examples of stigmatized groups that are easily hidden versus readily obvious. Easily hidden Sexual orientation Religious background Criminal past Mental illness history Substance abuse history Marital status Educational attainment Vocational class Social status

Readily obvious Race and ethnicity Gender Physical disability Overweight Homelessness Poverty

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being observed coming out of a psychiatrist’s office), are the object of stigma and discrimination (Link & Phelan, 2001). Results of one study showed, for example, that persons who were publicly labeled “mentally ill” had less income and were more likely to be underemployed compared to a similarly impaired, but unlabeled, group. Critics have countered labeling theory by arguing that bizarre behavior, and not the label per se, is the source of negative responses from the public. They concluded that labels are not really a problem. Bruce Link and Jo Phelan (2001) tested this opposing view in a series of experiments where label and odd behavior were manipulated; results showed members of the general public were likely to stigmatize a person labeled mentally ill even in the absence of any behavior consistent with psychosis. Hence, Phelan and Link (1999) posed a modified labeling theory where they conclude that although a psychiatric label does not lead to mental illness, it certainly is associated with negative societal reactions which, in turn, worsen the course of the person’s disorder. The power of labels is huge; consider how it discourages people who might benefit from treatment from actually pursuing services. One body of population-based research has shown that nearly two-thirds of people with a diagnosable psychiatric illness will not obtain services (Corrigan, 2004). Even more, two-thirds of people who start treatment drop out before it is completed. Many reasons might explain this, with trying to avoid stigma as a prominent factor. We call this phenomenon label avoidance. No, no. Not me. I’m not nuts! I don’t need to see a shrink.

People distance themselves from mental health clinics, psychiatrists, and college counseling centers so they are not associated with the kinds of places that mean they are somehow mentally insufficient. Label avoidance is one of the most harmful consequences to the stigma of mental illness.

Specific cues As suggested by Link’s research, another set of signals which may lead to stigma results from the ways in which persons with mental illness behave. Many of the symptoms of severe mental illness – inappropriate affect, bizarre behavior, language irregularities, and talking to self out loud – may be obvious to the public. Symptoms like these tend to produce more stigmatizing reactions than those associated with labels alone. Hey, that guy talking to himself on the park bench must be crazy.

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Moreover, poor social skills that are a function of psychiatric illness also lead to stigmatizing reactions. Deficits in eye contact, body language, and choice of discussion topics potentially mark a person as mentally ill and lead to stigmatizing attitudes. Finally, research suggests personal appearance may signal stigmatizing attitudes. In particular, lack of physical attractiveness and poor personal hygiene may indicate mental illness and lead to stereotyped responses, such as, “That unkempt person at the hamburger stand must be a mental patient.” Note, however, the potential for misidentifying as mentally ill based on appearance. For example, many street people with slovenly appearance are believed to be mentally ill when, in actuality, they are poor and homeless.

Putting it all together The harmful impact of stigma has been described in various ways. We consider four constructs in making sense of this: public stigma, self-stigma, label avoidance, and structural/institutional stigma. Public stigma occurs when the general population endorses stereotypes about mental illness and acts in a discriminatory manner. Public stigma is the phenomenon that readily comes to mind when most readers consider the idea. Members of the general public agree with and endorse stigmatizing stereotypes so that large and important groups act on them and discriminate against the individuals labeled mentally ill. People who internalize the prejudices of mental illness are self-stigmatizing, harming themselves both cognitively and behaviorally as a result (Link, 1987). We talk here about the person with mental illness who “self-harms” as a result of agreeing with the stigma. Four constructs comprise perception of the mark and subsequent impact (Corrigan, Larson & Kuwabara, 2007): awareness, agreement, application, and harm. . . .

Are individuals aware of the link between marks of mental illness and corresponding stereotypes? If they are aware of the stereotype, do they agree with it? Thus far, stereotypes have not been internalized and hence yield no self-stigma effect. Do individuals apply the recognized and agreed-upon stereotype to themselves? Consider the person who agrees that individuals with mental illness are to blame for their disorder, applies the stereotype to himself or herself, and concludes, “I have a mental illness, so I must be to blame for my illness.”

Understanding and Measuring Stigma .

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Does applying the stereotype to one’s self harm the individual’s self-esteem and self-efficacy? This is a form of discrimination that differentiates people who “beat themselves up” about stigma from those who use coping skills to ignore its effect.

In addition to decrements in self-esteem and self-efficacy, the discrimination of self-stigma may have a direct effect on the pursuit and accomplishment of life goals, such as getting a job, living independently, and developing meaningful relationships. Called the “why try” effect, absence of self-efficacy undermines one’s confidence (i.e., “Why should I try to get work? Someone like me is not able to handle a job!”) (Corrigan et al., 2007). The why try effect also occurs because of diminished self-esteem (i.e., “Why should I try to live on my own? Someone like me is not worthy of such goals!”) As discussed earlier, stigma can harm a third group: individuals who have not been diagnosed with a mental illness, but avoid mental health care so as not to be marked with the label, what we call label avoidance. Research suggests as much as one-half to two-thirds of individuals who might benefit from psychiatric services never receive them (Corrigan, 2004). Several factors may explain this phenomenon, including a dearth of mental health resources in a particular community or government policies that dissuade participation in care. In addition, stigma is thought to block treatmentseeking. This process is different from the types of experiences as a result of public stigma or self-stigma. Public stigma is what the population does to a group by endorsing and implementing the stereotypes, prejudice, and discrimination that comprise mental illness stigma. Self-stigma is what people within a group do to themselves. Label avoidance is dodging a group altogether to escape the negative effects of public stigma and self-stigma. Those who avoid the label are aware of the stereotypes and may even agree with them. However, they are strongly inclined to not apply the stigma to themselves and avoid any group that will lead to this mark. One way to obtain group identity is by associating with the group, but people who are known to receive mental health care may be labeled as crazy or weak. Hence, people who do not pursue treatment escape mental illness prejudice and discrimination (Link & Phelan, 2001). There are models of stigma meaningful at the societal level. A macrosocial level of analysis uncovers a separate set of factors that lead to discriminations against people labeled as mentally ill. Two such factors of interest are: policies of private and governmental institutions that intentionally restrict opportunities of people with mental illness (structural stigma) and policies of institutions that yield unintended consequences that hinder the options of

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people with mental illness (institutional stigma). Intentional institutional discrimination manifests itself as rules, policies, and procedures of private and public entities in positions of power that consciously and purposefully restrict rights and opportunities. For example, Jim Crow laws, extending from the end of the nineteenth to the middle of the twentieth centuries, were examples of public institutional discrimination against people of color. There is evidence of institutional discrimination of people with mental illness in both the public and private sector. A good example from the public sector is legislatures that enact laws that restrict the rights and opportunities of people with mental illness. A prominent example from the private side of the equation is representations of people with mental illness in the news media. In some types of structural discrimination, despite a commitment to neutrality, a policy or principle may result in less opportunity for a stigmatized group than for the majority (Pincus, 1999). For instance, public policy that favors good business and cost-effective economic principles, both central to capitalism, would not seem to favor particular groups. Nevertheless, there are examples of unintended, discriminatory consequences based on this value. Insurance companies, for example, charge increased premiums in African American communities where the crime rate is higher. Banks are less likely to provide mortgages to buyers in African American neighborhoods where less collateral is available to secure a loan. Although both of these decisions seem to represent wise business practice and do not seem to represent prejudicial intent on the part of the insurers and lending companies, the result is still limited financial resources being available in African American communities. Societal concerns about cost-effectiveness and decisions representing good business also seem to yield structural discrimination and are especially relevant to mental illness as well as race. Problems with mental health insurance parity are a prominent example of structural stigma related to mental illness. Interest in parity began soon after the Clinton administration failed to shepherd health care reform through congress in 1993 (Levinson & Druss, 2000). Backed by a Coalition for Fairness in Mental Illness Coverage, Senators Pete Domenici (R-NM) and Paul Wellstone (D-MN) crafted the Mental Health Parity Act (MHPA). The Act sought to cap limitations in mental health benefits to a level currently provided for other, physical health services. Strong opposition was heard from the business community citing the kind of cost concerns that are frequently used to justify other examples of structural discrimination. Lobbyists for the business sector argued that parity requirements could bankrupt small businesses by raising health care costs (Levinson & Druss, 2000). Senator Gramm (R-TX) said that the MHPA might force businesses to drop any kind of mental health coverage as a result.

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Suggestions for challenging mental health stigma As outlined thus far in this chapter, stigma appears in different forms and causes a variety of problems for persons with mental illness. The media, including newspapers, movies, and television, disperse stigmatizing images and slogans about severe mental illness throughout our community. Messages from parents and other authorities teach children that persons with mental illness are dangerous or cannot care for themselves. Observations of labeled “patients” like the homeless lead to biased attributions about mental illness. We have grouped these various problems into three areas. Each area corresponds with the next three chapters of this book: . . .

Challenging public stigma Addressing self-stigma through disclosure and empowerment Righting structural stigma through legal remedies. We review these three parts briefly here.

Challenging public stigma Protest, education, and contact are three approaches to challenging public stigma. Protest strategies highlight the injustice of specific stigmas leading to a moral appeal for people to reverse their thinking, to “stop thinking that way.” Such strategies, however, may have limited impact for changing public attitudes, and may even yield a rebound effect so that prejudices remain unchanged or actually become worse (Corrigan, River et al., 2001; Macrae, Bondenhausen, Milne & Jetten, 1994; Penn & Corrigan, 2002). Although there are both cognitive and social explanations of this kind of rebound, perhaps the simplest is the construct of psychological reactance (Brehm & Jones, 1970), such as, “Don’t tell me what to think!” Educational approaches to promoting change in stigma aim to contrast myths with facts about mental illness and, as such, are very popular due to the ease with which they can be implemented. In the past, such strategies have included public service announcements, books, flyers, videos, and other audiovisual aids to dispel myths about mental illness (Pate, 1988). Although there is some evidence to suggest that people with a better understanding of mental illness are less likely to endorse stigma and discriminations (Brockington, Hall, Levings & Murphy, 1993; Link & Cullen, 1986; Link, Cullen, Frank & Wozniak, 1987) and that educational programs produce short-term improvements in

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attitudes (Corrigan, River et al., 2001; Corrigan, Rowan et al., 2002; Holmes, Corrigan, Williams, Canar & Kubiak, 1999; Penn, Kommana, Mansfield & Link, 1999), there is also some evidence that suggests the magnitude and duration of improvement may be limited (Corrigan, River et al., 2001; Corrigan, & Rowan et al., 2002). Contact with members of the stigmatized group has long been considered an effective means for reducing intergroup prejudice. Since the mid-twentieth century, research has consistently presented evidence to support the “contact hypothesis”; that “optimal” contact interventions must contain the following four elements (Allport, 1954; Pettigrew & Troop, 2000): equal status between groups, common goals, no competition, and authority sanction. The benefits of interpersonal contact are further enhanced when it involves someone who moderately contradicts the stereotypes about their group (Johnston & Hewstone, 1992; Weber & Crocker, 1983).

Addressing self-stigma through disclosure and empowerment Mental illness is largely hidden and hence so is the stigma. People can be battling significant psychosocial problems, depression, or distress and those around them are unaware of this turmoil. People with self-stigma need to decide whether they want to come out of the closet to attack its roots. This means the person must be able to recognize mental illness and admit they are challenged by it. This can occur at a private level. People may also benefit from coming out publicly (Cass, 1979; Cross, 1971). There are several benefits to this; coming out is frequently experienced as relief, that the person need not be ashamed of or hide an important part of who he or she is. Coming out also facilitates identification of other people in a social setting with similar experiences (work, church, neighborhood pot luck), and with whom mental illness and stigma experiences might be shared. The more people come out, the more public stigma is challenged. The public will see that mental illness actually comprises a larger group of people than what might be expected. The loss in self-esteem and self-efficacy caused by self-stigma is viewed as anchoring one end of a continuum, with personal empowerment anchoring the other. People who believe they have control of treatment and their lives are less likely to be plagued by self-stigma. Several factors influence personal empowerment, with group identification prominent among the options. People who purposefully affiliate with advocacy groups and publicly admit these relationships are less overwhelmed by stigma and more in control. Consumer-operated services are one way to promote group identity; these are

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programs developed by people with serious mental illness, for people with serious mental illness (Clay, 2005). Specific examples of consumer-operated services include mutual help programs, advocacy training, and drop-in centers. Common beliefs across consumer services include personal empowerment and accountability, choice and self-determination, recovery orientation, and spirituality focus.

Righting the social injustices of structural stigma Resolution of social injustices has partly been realized via specific and potent law. Most governments around the world have statutes and administrative directives meant to suppress discrimination and support social justice. The United Kingdom’s Disability Discrimination Act (DDA, passed in 1995) and the Americans with Disabilities Act (ADA, passed in 1990) provide useful prototypes of an omnibus and flexible statutes that provide a formal approach to addressing the injustices of stigma. Employers do not have to hire persons with disabilities according to the DDA/ADA. The legislation does not establish affirmative actions or quotas through which persons with disabilities can expect an advantage during the hiring process. Some governments have proffered affirmative action as an effort to promote opportunities for persons of color and women by setting hiring quotas. Instead of affirmative action, the DDA/ ADA attempts to level the playing field in the application process. Individuals who can complete the essential functions of the job, with or without reasonable accommodation, are qualified for the job. The DDA/ADA requires employers to “accommodate” or otherwise change a job so that persons with disabilities can complete all essential functions; the goal is to remove barriers that would prevent people from doing the job because of their disabilities. Accommodations can conceivably apply to any aspect of the job; specific tasks (e.g., how a typist word-processes the boss’s correspondence), work environment (how the work area is constructed), schedule (when the employee reports for work), dress policy (whether any special clothes need be worn), and co-workers (whether any changes can be made to fraternization rules).

Stigma and world diversity Stigma is a world phenomenon. It is present in almost every culture and nation around the globe. Stigma is diverse in presentation and severity.

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Advocates and researchers frequently seek the reasons underlying the diversity in its presentation. Based on research in the United States, Hong Kong, and mainland China, two of the authors (Corrigan and Tsang) posed a lay theory as a useful paradigm for understanding stigma as an international phenomenon (Lam, Tsang, Chan & Corrigan, 2006). Unlike most Western nations, China is a fairly homogeneous culture with 95 percent of its population belonging to Han Chinese. There are core Chinese values that have significant influence on understanding and interpreting mental illness and its stigma. These folk values and beliefs are rooted in the philosophical and religious beliefs of Confucianism, Taoism, and Buddhism. These values include (1) a harmonious view of nature, (2) the family as the core unit of daily life and resource for support, (3) harmonious social and interpersonal relations, and (4) avoidance of extreme emotional reaction. Perceptions of mental illness are also influenced by fundamental religious beliefs in China, referred to as shamanism. Shamanism is a spiritual belief about a person who can connect the inner with the outer world, the body with the soul, and the living with the dead. While Confucianism and Taoism have more influence among intellectuals and the ruling class, folk religion and shamanism, especially in rural areas, remains an important influence on Chinese perceptions. Folk religions continue to have an impact on the daily life of many Chinese. Some people believe that illnesses are supernatural in origin. Women in particular seek out shamans to solve family problems and heal illnesses, including mental illness. According to this view, a person’s illness may result from little respect for ancestors, especially failing to carry out duties vis-
a-vis one’s ancestors. Shamans can communicate with the spiritual world and help people settle their problems and heal their illness. In China, mental illness is described as “dian” and “kuang,” which means insane and crazy. The Mandarin character “kuang” denotes a class of mentally disordered behaviors. The character literally means a dog biting fiercely and indiscriminately. This interpretation reflects the original Chinese belief that madness is derived from the bite of a rabid dog. On the other hand, Hong Kong Chinese – the Cantonese – often use the term “chi xian” which means shortcircuited in the brain, or going haywire or crazy, which insinuates the neurological nature of the illness. Prescriptions that might arise from lay beliefs include moral lapse, weak character, punishment for one’s transgression in this life or in previous ones, failure to carry out duties vis-
a-vis one’s ancestors, and even eating foods that should be avoided during pregnancy. Many of these beliefs contribute to stigmatizing representations of mental illness in the culture.

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We do not pretend to explain mental illness and stigma in China in this short space. Instead, we want to hint at the complexity of the intersection of stigma and culture. In part, this suggests research teams need to include social science disciplines not frequently found in writings about mental illness stigma, such as cultural anthropologists, historians, and sociologists. Even more important, however, is the inclusion of people from an ethnic community as primary agents if advocates seek to develop and use an anti-stigma program for that community. One way to do this is through community-based participatory research (CBPR) discussed more fully below. CBPR means effective program development, implementation, and evaluation requires a diverse set of stakeholders from a community to be actively involved in and control the enterprise.

Assessing stigma Assessment plays an important role in making sense of problems wrought by stigma. It can offer an opportunity for personal insight and for participants in anti-stigma programs to get some sense about how they might stigmatize mental illness, which can be an important first step in challenging stigma. Assessment is also the basis of program evaluation, and determining whether specific anti-stigma strategies, in fact, change prejudice and discrimination. This latter goal is often hard to complete because many advocates conducting the program lack the necessary research skills. We briefly consider this issue herein but user-friendly approaches to program evaluation are difficult to lay out in a short chapter. Hence, we direct the interested reader to www. stigmaandempowerment.org, where two additional documents can be obtained to parallel the ideas laid out here. 1 A comprehensive outline of strategies for examining anti-stigma programs (A User-Friendly Guidebook) for the Anti-Stigma Program Evaluation Plan (ASPEP-10); and 2 A Toolkit for Evaluating Programs Meant to Erase the Stigma of Mental Illness. These materials can be obtained for free on the website and can be copied or otherwise used in any way that promotes understanding of stigma and stigma change. Tables of Contents for the Guidebook and Toolkit are reproduced in Figures 2.2 and 2.3.

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1. Introduction .....................................................................................

3

2. The Role of Research and Program Evaluation ...............................

4

3. The Anti-Stigma Program Evaluation Plan (ASPEP-10): Ten Steps ...

7

4. Ten Step Plan Summaries . . .. . ........................................................ 18 5. An Example of an Anti-Stigma Evaluation Plan (ASPEP-10) ........... 19 6. Cross Group Differences ................................................................. 18 Figure 2.2 From A User-Friendly Guidebook for the Ten Steps to Evaluate Programs that Erase the Stigma of Mental Illness. This work was made possible by grants MH62198-01 for the Chicago Consortium of Stigma Research, plus MH66059-01, AA014842-01, and MH08598-01 with P. Corrigan, P.I. All the materials herein solely represent the research and subsequent opinion of the P.I.

Table of Contents 1. Introduction .....................................................................................

3

2. The Anti-Stigma Worksheet ............................................................

5

3. Evaluating Programs for Public Stigma ........................................... Overall Assessment Concerns The Attribution Questionnaires The Resource Allocation Test The Family Questionnaire

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4. Evaluating Programs for Self-Stigma .............................................. 28 The Self-Stigma of Mental Illness Scale The Recovery Assessment Scale 5. Evaluating Programs for Label Avoidance ...................................... 38 Corrigan et al. currently have not developed and evaluated measures relevant to label avoidance. 6. Other Measurement Areas .............................................................. 39 The Level of Familiarity Scale Figure 2.3 From A Toolkit of Measures Meant to Evaluate Programs that Erase the Stigma of Mental Illness. Stigma Research, plus MH66059-01, and AA014842-01 with P. Corrigan, P.I. All the materials herein solely represent the research and subsequent opinion of the P.I.

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Obtaining personal insights The book includes two sets of exercises that help people participating in an anti-stigma program gain some sense of this thing called “stigma.” In this chapter, we provide a worksheet to help program participants understand the stigma of mental illness in terms of the prejudice and discrimination experienced by other groups, such as people of color or women. In addition, the reader is referred to subsequent chapters where assessment is used as a strategy to sensitize people to public stigma (Chapter 3) or self-stigma (Chapter 4). Assessment as personal insight is based on a fundamental consideration about measurement; the very nature of the process yields relatively obvious information to research participants about whether and how they might stigmatize. The act of completing data tasks is an intervention in its own right. The instrument we include here is strong in face validity; namely, that which the instrument is meant to assess is relatively obvious. Those familiar with the rigorous principles of tests and measures know that face validity does not equate to reliability or construct validity. In fact, sometimes measures high on face validity actually lack other qualities of strong assessment. In this setting, however, it is face validity that commends the task. The goal is to help people assess for themselves where they lie in terms of stigma. In practice, the raw number generated by the measure is not the important product. In fact, some people will misreport test items in order to convince themselves that they are open-minded and to present to others as not a bigot. Typically, advocates using this kind of task will not ask program participants to report their scores publicly during the anti-stigma session. Instead, it is the private nature of the task that is important. People can run through their own mind to determine how they react to these issues. This kind of task might then motivate the person to understand better where stigma falls in their life, if they accept prejudice, and whether they act on discrimination. Putting stigma into perspective. Figure 1.2 in Chapter 1 provides a worksheet that helps program participants gain perspective on mental illness stigma; namely, understand psychiatric prejudice in terms of biases experienced by other, more familiar, groups. Most participants in anti-stigma programs know about stigma, prejudice, and discrimination because of the salience of this issue in general Western culture. Most know about the prejudice of color and gender. They learned from Mahatma Gandhi, for example, about the power of civil disobedience and its impact on Indian history. Examples by Nelson Mandela and Desmond Tutu suggest equality in South Africa may be accomplished without repressing another group. The suffragette movement in Europe and around the globe has promoted equal and rightful opportunities for women. None of these movements has ceased its importance; there

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continues to be priorities in each. Still, their perspectives may serve as a firm foundation for understanding the stigma of mental illness. The worksheet in Figure 1.2 helps sensitize people to what might seem to be relatively minor statements about mental illness. First, individuals filling out the worksheet are instructed to list various stereotypes about persons with mental illness, especially things heard on the radio, seen on television, noted on the internet, or read in the newspaper. People participating in this exercise are told to get beyond verbatim comments and hit on the pithy statement, overgeneralization, and misattribution. “People with mental illness are violent maniacs!” “All persons with psychiatric disorders are going to end up on the back ward of a mental hospital!” These are meant to be meaty expressions that get to the heart of the prejudice. Most participants are amazed at the frequency with which mental illness is disrespected in the media. Next, individuals are asked to replace key words in these statements about mental illness (e.g., crazy, wacko, mental case, psychotics) with a term that describes an ethnic group (Black), religious minority (Muslims), or gender. They end up with telling remarks. “All Blacks are unable to live a fruitful life!” “All Muslims are violent maniacs!” Note how this task is especially poignant; consider the use of a group whose social status is in disarray in the West such as Muslims. Most people are dismayed to see the same kind of injustice that has been perpetrated against people of color or different faith communities continues when such language is used to describe mental illness. This provides an opportunity for discussion, beginning with the ideas at the end of the worksheet. “What do you think of the idea that mental illness is stigmatized or discriminated against as much as racial groups, women, or religious minorities?” Perhaps at the heart of this discussion is the idea that mental illness stigma is just like any other bias. This kind of exercise works effectively in schools with youngsters, as well as at church gatherings and adult service club meetings. One goal of stigma change in this light is called consciousness raising. Many people do not realize that prejudice and discrimination are important issues for people with serious mental illness. “I did not know that the stigma of mental illness is similar to the kind of biases experienced by Blacks.” For some, conscious raising is an important first step in personally changing the stigma of mental illness. People influenced by conscious raising are now going to pay attention to anti-stigma strategies. As considered elsewhere in this book, an especially important focus of consciousness raising is the choir, as in “preaching to the choir.” Most prominent in the choir are advocates already aware of the pain of stigma and active in programs meant to erase it. The sensitization exercise helps to activate their energies. The choir also includes people concerned about mental health issues, but who are less aware of the problems of stigma. The exercise briefly and succinctly orients them to the need

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for anti-stigma programs in a comprehensive system of mental health care. Last in the choir are people with an affinity towards social justice concerns. The American Civil Liberties Union and the African National Congress, for example, are ready-made collections of liberal-minded folks who might quickly jump on the anti-stigma wagon when sensitized to the problems of mental illness prejudice and discrimination. Assessment and insight into public stigma and self-stigma. The selfassessments included in this book are provided to help people understand themselves better. Sometimes, both test-takers and professionals make the “grand error of truth” in using assessment information. They assume that if a test says so, then it must be true. “I didn’t think I self-stigmatized. But I scored higher than 32, so I must disapprove of myself.” This kind of view is further compounded by concerns of self-doubt. “I must be really screwed up if I was not even aware how much I hated myself.” Self-doubt can lead to more selfstigma and more reasons to give up control of one’s life. “I’m totally out of touch with myself. No wonder I’m such a bad person. I need a counselor to tell me these things.” Information in these tests is meant to help people consider issues of public and self-stigma. The final judge of whether test information is right or wrong is the person taking the test. If the information makes sense or helps the person to stop and think over an issue, then it is probably useful feedback to which he or she may wish to heed. But if test results seem strange and do not reflect the person’s experience, then the information may be incorrect. Some tests just don’t work right for some people. In these cases, it may be best to ignore the information altogether. One final point about the assessments used in this book: researchers spend many years developing tests that are reliable and valid. Unfortunately, these kinds of tests are frequently not useable by persons with mental illness; they tend to be cumbersome to score and difficult to interpret. In this book, we provide assessments that can be easily self-administered, scored, and interpreted. Although these measures are based on research conducted by the authors over the past several years (Corrigan, 2005), we do not suggest they are psychometrically rigorous and, hence, should be used cautiously.

Doing practical evaluations A second goal of assessment may be to evaluate the impact of anti-stigma programs. Unfortunately, this can be a complex and difficult task to complete. For this reason, we developed evaluation guidebooks comprised of readily usable directions, forms, and worksheets to achieve some semblance of a

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reliable and valid evaluation. These materials are provided at www.stigmaandempowerment.org: the ASPEP-10 (guidebook) and the measurement toolkit. Before that, however, we discuss benefits of program evaluations for advocates offering anti-stigma programs. In many ways, the steps of program evaluation parallel more complex research studies: define the question and hypothesis, specify measure(s) meant to test the hypotheses, complete statistical analyses, and make inferences based on these analyses. It is the last point that describes a sit-down moment for the program; namely, advocates from varied stakeholder groups sit down and use the data to decide whether the intervention is good and resources should be sought to continue it, should be discarded for another, or, most likely, should be amended in different ways. Readers seeking a more comprehensive discussion of these issues are directed to a recent review by Corrigan and Shapiro (in press). Community-Based Participatory Research(CBPR). Stigma robs people of rightful opportunities; hence, these people need to be at the research table as investigators take on the task of understanding stigma and stigma change. Community-Based Participatory Research (CBPR) provides that opportunity (Minkler & Wallerstein, 2003; Rogers & Palmer-Erbs, 1994); including these people in the research process facilitates empowerment, helping them to better take on and bring about stigma change programs. Understanding stigma in terms of power clearly calls for stakeholder participation in all aspects of research and evaluation related to stigma and stigma change. Stakeholder is a diverse concept defined by varied perspectives on demographics of advocates (e.g., ethnicity and gender), advocacy role (consumer or family member), and provider role (rehabilitation psychologists, psychiatrists, or social workers). CBPR teams need to recruit diverse stakeholders to promote research that parallels grassroots interest. Two principles illustrate the significance of CBPR vis-
a-vis measurement of stigma change: perspective and politic. By the intrinsic virtue of diversity, dissimilar stakeholder groups vary in comprehension of stigma and stigma change, and in research reactions used to test these perspectives. For example, research suggests that interests and goals of people with Western European roots tend to be individualistic when compared to East Asian cultures, where individuals with mental illness are understood in terms of a collective, usually the person’s family (Triandis, 2005). Goals defining the rehabilitation plan of Westerners are defined first and primarily in terms of individual consideration of costs and benefits. However, Easterners will include the active participation of authority figures who represent the needs and desires of the broader collective. These authorities are often family elders, but might also include health care providers or leaders of faith communities. Religious differences also distinguish West from East. Based on the Koran, Muslims living in the

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European Union understand the social sphere differently from the JudeoChristian philosophies embodied in the Bible. Efforts to promote personal empowerment define much of the current energy of services in Western Europe and the United States; for example, user-operated services like mutual help programs or drop-in centers, and users providing actual interventions to peers. These approaches may wholly differ in mental health services in China or the Muslim world. Politicy stakeholders as advocates are the group that will consume research findings in order to actually try to erase the stigma. They are most likely to have a sense of key policy issues in local and regional mental health authorities and use new information about stigma change to affect legislative activity (e.g., passage of budget and other mental health bills that promote a recoveryoriented system of care) and administrative efforts (actual, day-to-day directives that make the vision of a recovery-based system a reality). CBPR members have a history of interest and authority with politicians who are likely to respond to constituent efforts in the case here; a mental health agenda that is undermined by stigma. We have been discussing the generic term “diverse stakeholder.” Difference is not limited to demographics, however. Definitions of “who” is the service user may vary across type of psychiatric disability. Are the stigma issues for people with depression the same as those with schizophrenia? What about those with substance abuse disorders who are reactively depressed? Distinct service communities already exist in understanding and treating substance abuse disorders versus psychiatric illnesses; models of stigma and stigma change probably differ across these groups. In fact, the research literature on the stigma of mental illness and of substance abuse disorder is fairly independent, including having different professional journals and conferences where innovative ideas about stigma change are meant to be swapped. This may not always make sense. Epidemiologists have shown that people with disorders across both communities (the dually disabled) are at least half the sample of adults with mental illness or those with substance abuse disorder. Evidence-based services for those with dual disorders are integrative (Drake, O’Neal & Wallach, 2008). Rather than separate spheres of mental health and substance abuse treatment, providers from both communities need to come together and mix approaches into a sensible and solid approach for the individual. We expect, therefore, to find integrated anti-stigma programs best in addressing the prejudice and discrimination of people with dual disorders. The idea of user-stakeholder may also vary in terms of functional role. Advocates with mental illness have been labeled user, ex-patient, and survivor (Covell, McCorkle et al., 2007). Inclusion of people from different roles will influence the quality of CBPR efforts. Other stakeholders may also need to be included in a CBPR team. Family members of people with serious mental

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illness often have different priorities from the kin of people with other disabilities. Providers assume important roles in facing the stigma of mental illness and attempting to abolish it. Hence, a CBPR needs to consider if and how the agenda of physicians (in most cultures) differs from the agenda of those responsible with psychosocial tasks (e.g., social workers in Western cultures who seek to help the person be successful in his or her community despite the illness). Finally, if one approach to stigma change is targeting persons in powerful roles, then representatives from those groups might be valuable members of the CBPR team. For example, it seems reasonable to include employers in an anti-stigma research project on hiring people with mental illness. Who better knows the prejudice and discrimination which employers may hold against individuals with mental illness? What exactly do we mean when we say stakeholders are to be real partners in evaluating stigma change programs? Given that specific responsibilities and duties of various CBPR teams include active consideration and proposal of hypotheses, methodological design (including operational decisions, such as hiring consumer to administer measures and managing data), and data analyses, all CBPR team members are meant to be equal partners in these tasks. At least one, frequently a user, is picked as co-principal investigator and directs all aspects of the project with the other co-PI who has a strong research background. Some people wonder whether this is just rooted in political correctness – that the consumer co-PI is just a token. True, many user co-PIs do not have the sophistication to enter into an intricate discussion of measuring stigma, though some CBPRs include a training program to provide practical information about methods and the decisions needed to yield the best outcomes. But research decisions are not limited to considerations of design; fundamental to evaluation of hypotheses recognizing the priorities and possibilities that define real world stigma change. Consumer or family stakeholders are more familiar with this arena than the researcher members of the team. An important distinction is needed here. Focus groups of users and family members are a necessary first step in changing public stigma; learn firsthand about the impact of stigma from people who are the targets. CBPR, however, is not focus groups. The CBPR collective, as part of its work, might decide to gather together peers to address the types of research questions that might be addressed by focus groups, but the job of CBPR is to make sense of the findings for subsequent program development.

A user-friendly guidebook for the ten steps anti-stigma program evaluation plan (ASPEP-10) The ASPEP-10 is an outline for CBPR teams to help them conduct a somewhat robust program evaluation without extensive research education or

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experience. The Table of Contents for the guidebook is provided in Figure 2.2. Specific components of the ASPEP-10 are briefly reviewed here and correspond to sections of the ASPEP-10 at www.stigmaandempowerment.org. 1 Describe the anti-stigma program. Programs as listed in this book might target public stigma or self-stigma. Hence, the evaluation needs to communicate clearly whether it is meant to address change of public or self-stigma. Public stigma change is essentially divided into protest, education, or contact strategies. Self-stigma change includes approaches related to consideration of disclosing, strategically coming out, and participating in programs that empower peers. The program description should include adoption of an existing program manual or completion of focus groups to identify composite principles and activities. 2 Specify the target. Central to a program meant to change public stigma is specification of the target. The prejudice and discrimination of which groups (e.g., employers, property owners, and health care providers) are meant to change as a result of the program. Also, the CBPR team list specifics of the anti-stigma program that is to be examined in the evaluation; this includes logistics such as when and where the program will be provided and who will be recruited. 3 Name the various stakeholders that comprise the CBPR team. Identify CBPR leaders. Divide various evaluation tasks as sub-committees, led by CBPR members and populated by CBPR peers, or other “experts” who might be drawn into the special interests of the sub-committee. Sub-committee tasks might include providing anti-stigma program, fidelity, and satisfaction data, data collection and entry, data analyses, and making sense of the data. 4 Spell out the general question meant to guide the evaluation. For most antistigma program research, the question will be something like “Does the indexed anti-stigma program have positive impacts on participants?” 5 Identify the measures to be administered to research participants. Researchers sometimes propose mightily elegant designs, including multiple measures reflecting in different factor structures. In an attempt to keep things simple and understandable, however, a slimed-downed design is recommended – no more than three outcome measures should be used. The ASPEP-10 proposes measures as single items from previously researched instruments (like those in the Measurement Toolkit). 6 Research designs are comparisons. The research plan might compare a measure obtained before program participation with one collected immediately after. Or the research plan might compare people who have completed the anti-stigma program with those in a no-intervention control group.

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7 Collected data are then entered into a table or spreadsheet. Columns in the spreadsheet represent the comparisons. Space for up to three time comparisons is provided: pre-program exposure, post-program exposure, and follow-up. Alternatively, space for three groups is available: indexed program, versus some other program, versus a no-intervention control group. Rows are spaces for test results collected from each participant. Space is allowed for up to 24 participants; this is at the low end of sample size, but may still yield valid results. Averages are entered in the bottom row of the table. Averages are then entered into vertical bar graphs; higher averages are represented as taller bars. The number of vertical bars depends on the design. Two or three bars may be determined for time (either pre- versus post-test or pre-, post-, follow-up designs). Two or three bars may be determined for group (either indexed program versus control group or indexed program, control, and other anti-stigma program). One graph is needed for each of the measurements described in (6). Significant change might be inferred for graphs where some bars are higher than others. Each graph also includes space to determine whether the bars in the graph are, in fact, different. Statisticians call these t-tests. Differences are examined across the averages in the bottom row of the table. Time differences, for example, may represent the subtraction of pre- from post-test averages. Group differences may be indexed program versus control group. 8 All the graphs and ratios need to be gathered into one place. A summary of all the ratios might suggest the program is mostly negative (more negative versus positive ratios) and should be stopped. Alternatively, the summary may disclose mostly positive ratios and should be continued. More likely, however, the summary of the ratios will show evidence about program outcome is mixed. Information from two parallel sources provides specific information to improve the program: fidelity and satisfaction. 9 A fidelity measure is developed from the original manual. It is a list of specific activities which program advocates are expected to show when they are doing the anti-stigma approach. Research assistants unobtrusively sit at the back of the room and check to determine whether program leaders are conducting the anti-stigma intervention as previously laid out. Activities that are not shown by advocates may suggest one direction for program change, namely, program leaders may need to be taught to use specific activities when leading the program. Alternatively, advocates responsible for the overall program may wish to consider whether missing activities are no longer important to the program and hence should be omitted or need to be changed to represent program goals better. 10 Directions for program change may also be determined from participant feedback about the program. Participants are asked to rate their satisfaction

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of program activities laid out in the fidelity measure. Individual ratings are then averaged for all program participants; hence, summary satisfaction averages are provided for each activity in the program. Individual activities with a high satisfaction average are viewed quite positively by participants and should be included in any future evolution of the program. Conversely, items with low ratings are probably ripe for change. The worth of the entire evaluation enterprise rests in generating a “to do” list. What specific activities need to be changed to improve the program? Essentially, targeted activities might either be amended or might serve as the focus of additional leader training.

The Measurement Toolkit of instruments meant to evaluate programs that erase the stigma of mental illness Specific measures that may be used in the ASPEP-10 are summarized in the Measurement Toolkit (also available for no cost at www.stigmaandempowerment.org). Toolkit measures include those that assess public stigma and selfstigma separately. The Table of Contents summarizing the measures is reproduced in Figure 2.3. CBPR team members may decide to use another measure for a more complete assessment of a program than that which comes out of the ASPEP-10 and the Measurement Toolkit. In all, the ASPEP-10 and Toolkit have been developed to help people invested in anti-stigma programs evaluate its impact and amend programs in ways likely to enhance program effects.

Summary Only by understanding stigma can we hope to beat it. As shown in this chapter, stigma and its impact are described by a complex picture. In part, stigmas are thoughts or attitudes that we have about persons with mental illness. Sometimes these thoughts might be positive, but stigma, by definition, is largely negative. These beliefs cloud our perceptions of mental illness. They lead to negative emotions towards persons who are mentally ill. Negative beliefs (or prejudice) yield discriminatory behavior. Stigma’s impact is not limited to people with mental illness. Relatives are also plagued by the effects of stigma and should be included in anti-stigma programs. Stigma varies with societal influences. Hence, stakeholders from ethnic communities need to be actively involved in developing and evaluating stigma programs. This complex description of stigma suggests three ways to fix it (which constitute the remaining chapters of this book):

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1 Advocates challenge public manifestations of mental illness stigma using variations of protest, education, and contact. 2 People diminish the harm of self-stigma through considerations related to disclosure and empowerment. 3 Structural and institutional stigma highlights the role of social injustice at the root of problem. Legal remedies including affirmative action are important for resolving these injustices.

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It is because of the devotion or sacrifice of individuals that causes become of value.

Julian Huxley

The stigma of serious mental illness is not just a problem of persons with these disorders or of their families. Nor is it merely a harsh reality of the world which we must all learn to overcome. Stigma and discrimination are problems for all society. Everyone must examine their beliefs and actions which undermine the opportunities of persons with mental illness. Advocates need not wait passively until the public changes its attitudes and behavior. Three strategies for stopping public stigma are presented in this chapter: contact, members of the general public who regularly interact with persons who struggle with mental illness will be less likely to stigmatize; education, members of society who know more about mental illness are less likely to endorse shameful myths about it; and protest, discriminatory behaviors may decrease when important segments of society clearly state “these actions are not acceptable.” Before reviewing stigma-busting strategies, let us consider the effects of stereotype and discrimination on society. This discussion is important because it suggests what anti-stigma advocates like you might target for changing society’s reaction to mental illness.

Challenging the Stigma of Mental Illness: Lessons for Therapists and Advocates Patrick W. Corrigan, David Roe, and Hector W. H. Tsang
2011 John Wiley & Sons, Ltd

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The impact of mental illness stigma on society We argued in Chapter 2 that stigma is a grave injustice for persons with mental illness and their families. Its harmful impact does not end there, however. Stigma also harms society and those in it. It promotes injustices which undermine some of the basic assumptions of a community. It robs society of an important resource: persons with mental illness who could be gainful members of the neighborhood. Stigma perpetuates the personal fears of all people about becoming mentally ill and losing control. Each of these influences needs to be understood before there can be any broad changes effect on societal stigma.

The injustice of stigma infects a community Clearly, members of the general public who agree with stereotypes about mental illness and choose to act on those stereotypes harm persons with psychiatric disorders. However, the damage does not end there. Any kind of prejudice undermines the ethical assumptions of the entire culture. For example, people of many societies believe individuals should have a fair opportunity to prove themselves, based on their actions and accomplishments. Stereotypes mean persons lose their chance to be successful because they belong to marked groups. Stereotypes like those experienced by persons with mental illness challenge this fundamental belief. Stereotypes about mental illness are just one of many concrete examples of simple-minded thinking about groups of people. This kind of naive categorizing ignores the unique and interesting differences among people. Instead, it paints all members of a group the same. You know mentally ill people. They are all alike: weak, dangerous, unable to care for themselves.

Once these groups are identified, they can be quickly segregated from the majority. Black persons are different from White. Women are different from men. Mentally ill are different from normal. Some may argue that recognizing these distinctions is nothing more than reflecting physical characteristics. Persons who promote these arguments, however, forget that the advancement of distinctions and differences undermines the sharing of resources: There’s not enough to go around to begin with. Why should I share it with that guy from another group?

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Stigma robs communities of an important resource Communities lose out from discrimination, too. Instead of being productive members of society, many persons with mental illness unnecessarily must rely on handouts from their neighbors. They could be out working, earning a reasonable wage, and living independently. Instead, because of society’s ignorance, they are deprived of job and housing opportunities and must be supported by government assistance. There is also a more intangible loss that results from this kind of discrimination. Segregating persons with mental illness robs the community of the possible kind of interactions these individuals might bring. Persons with mental illness are kept from becoming active participants in the interchange among people. One of the wonders of melting pot societies like Australia and America is the diversity of perspectives represented by cultural and other differences. Through history, humans have discovered that excluding groups deprives society from vital segments.

Stigma maintains personal fears Fear of mental illness is personal; almost everyone worries at some time in their life about having a “nervous breakdown.” People believe they are able to cope because of some personal strength and that mental illness is moral weakness. Persons with mental illness, so the theory goes, failed to choose a healthy lifestyle: With a little effort, they could overcome their trials.

Social psychologists refer to this kind of logic as an example of the “just world” hypothesis. Persons who experience significant life problems like mental illness must have a character flaw. A just world would never deal people such an unfair hand. Hence, persons with mental illness have earned the disrespect of their community. Stigma maintains personal fears. “If I were weak, I would become mentally ill like that homeless guy talking to himself.” This kind of ignorance limits people’s understanding of mental illness. In addition, it distances the general public from its own brushes with anxiety and depression. Instead of trying to understand how life events converged to cause emotional upset, persons steeped in stigmatizing beliefs deny their own woes so they are not associated with “these weak mentally ill.”

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What is the reader’s role in changing society? As discussed in Chapter 2, stigma has three different effects on people: it influences what we think about, how we think about, and how we act toward persons with mental illness. Each one of these needs to be targeted for society’s stigma to stop. As we said earlier, there are three ways to change these targets: contact, education, and protest. Before reviewing these strategies, we consider the individual’s role in society’s change. Changing society’s attitudes and behaviors is a hefty goal. How can one individual tackle such large problems? How can I, a person with mental illness, possibly assume an important role in stopping society’s stigma and discrimination?

Both an exciting and awesome element of this challenge is that one person can make the difference! The spirit is possible. Trying to change society’s attitudes also helps the person with mental illness cope with stigma. As discussed in Chapter 5, any effort that returns power to the person with mental illness helps individuals overcome a sense of shame. What better way is there to grab this power than by assuming some role in stigma-busting? Some readers may be thinking, or perhaps worrying, that given the difficulties with psychiatric disability, they could never be an important voice for changing stigma. Hopefully, a person recognizes this as another form of self-stigma. There is nothing about the disabilities of serious mental illness that would prevent the motivated person from joining the stigma-busting effort. Challenging stigma occurs in a variety of ways; some fit with special skills while others are better suited for peers. Persons who choose to join the struggle bring their unique talents to the cause.

Targeted and local stigma change Who should be the object of anti-stigma approaches? Current programs aim to change either an entire population (all television-watching Germans, for example) or a subsample of important targets. Population-based stigma programs (e.g., public service announcements (PSAs)) are believed to impact a relatively large group. Consistent with social marketing principles, careful design of PSAs can have their greatest and broadest effects. Alternatively, advocates focus on important and local groups of people to evaluate stigma change (Corrigan, 2004). Targets are important when they assume a powerful role vis-
a-vis people with mental illnesses (Fiske, 1993; Link & Phelan, 2001). Consider an example. Generally, lawyers are in a position of power (especially

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compared to other disenfranchised groups) and have control over their options. People who are prejudiced towards lawyers are not stigmatizing them unless these attitudes block or otherwise detract from lawyerly pursuits. Compare this to people with psychiatric disabilities; they are often unable to achieve the basic goals of most adults because “potent” targets endorse the prejudices of mental illnesses. Important target groups include employers, as well as property owners, legislators, educators, and health care providers. Description of a power group is defined by specific prejudices and discrimination. The employer might believe, “People with mental illnesses are not able to do real work,” so the employer does not interview people with mental illness for job openings (Bordieri & Drehmer, 1986; Farina & Felner, 1973; Farina, Felner & Boudreau, 1973; Link, 1982, 1987; Wahl, 1999). The property owner may think, “People with mental illnesses will trash my apartment,” and hence do not rent to them (Farina et al., 1974; Hogan, 1985, Page, 1995; Segal, Baumohl & Moyles, 1980; Wahl, 1999). Prejudice and discrimination specific to a targeted group line up neatly with the message and behavior which then inform anti-stigma efforts. One goal of a contact or education-based antistigma program would be to replace myths about those with mental illnesses unable to work a real job with ideas that most people with mental illness can work a regular job, especially with in vivo support. It is then the behavior of a target group that describes important outcomes that document stigma change. A stigma change program for employers is at least partly successful when participants interview more people with mental illnesses for openings and then hire them. Stigma change is not only targeted, but also local. Past speaker of the US House of Representatives Tip O’Neill once said, “All politics are local!” Stigma change is fundamentally a political endeavor, getting one group to change their beliefs and actions about another group (Corrigan, Watson, Byrne & Davis, 2005). This activity is done locally. Targeting employers to change prejudice and discrimination is good. But challenging the stigma of employers working in the Greater Lawn neighborhood of Chicago is more potent. Describing this community in terms of diversity (e.g., by ethnicity and SES), economic opportunity (availability of jobs), and resources (available mental health or educational programs) advances anti-stigma programs.

PSAs and social marketing Major anti-stigma campaigns have been developed and undertaken in the United Kingdom, Australia, Canada, and other Western countries. Readers unfamiliar with PSAs and social marketing should review definitions below. A good example was seen at the time of writing the book, in a collection of PSAs and related materials led by internationally known film actress Glenn Close.

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On October 21, 2009, Close and associates released a well-done and compelling PSA. Set in a large train station, actors wore yellow t-shirts, half of them labeled with a mental illness, half by a related loved one. One man’s shirt says “schizophrenia,” next to him in a similar shirt is “mom.” Another reads “posttraumatic stress disorder” partnered with a person whose shirt says “battle buddy.” “Bipolar” with “better half.” Glenn Close has a yellow shirt “sister” standing next to her real-life sister Jessie with “bipolar” on her shirt. The video can be seen on YouTube; search for “Change a Mind About Mental Illness.” There are benefits to these kinds of PSAs; Close’s star power was huge, as evinced by the TV and online buzz created by the announcement. “Change a Mind” was widely distributed to TV stations, radio programs, and all sorts of paper and online media that third week of October. It had potentially communicated a vital message to millions of Americans!

Definitions relevant to public service announcements and social marketing Social Marketing: Application of the principles and practices of marketing to address goals related to social justice and inequities. For example, social marketing has been used to address the stigma of mental illness so people who might benefit from psychiatric services ignore stigma and seek care. Public Service Campaigns: Campaigns represent the overall social marketing plan. Public Service Announcements (PSAs): PSAs are prominent in anti-stigma campaigns. Traditionally these are about 60-second television or radio announcements meant to be disseminated within a targeted population. More recently, campaigns have availed online strategies including Facebook. Key to this kind of effort are strategies meant to reach out to the population rather than be sought by interested parties. Public Education Campaigns: Campaigns often include educational materials sought by members of the public after being alerted by PSAs to the importance of the topic. These may be news stories or materials provided on the internet. Educational materials often include facts about mental illness and corresponding treatments. Alternatively, they may be compelling stories about one person’s experience with mental illness and stigma. Campaign Websites: An important asset of public service campaigns are websites, home to education campaigns. Webpages can also connect viewers to related mental health and advocacy services.

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What might evaluations on PSAs tell us? These kinds of efforts require a multi-tiered evaluation process. The first level of research addresses questions about market penetration. How many people have noted the announcement? The answer lies with two points related to memory. Consider this self-test to make sense of the issue. Ask how many people in a group of your friends remember seeing the PSA video or hearing the audio copy. This kind of recollection is the strongest evidence that “Change a Mind” penetrated a market. Especially important about Close’s PSA, compared to other examples of the genre, is the recognition she already has in the media. “Oh, you mean the commercial by Glenn Close.” Many people, however, are unable to recall a TV advert or radio jingle, but recognize it easily in the future. So the second task is to go online to view the video (or listen to the audio) and ask everyone whether they recognize it. At the end of the day, our hunch is that amazingly few recall or recognize the advert. Why might the PSAs be so infrequently remembered? Consider TV as an example. Broadcast networks in many Western countries must air PSAs as part of their daily responsibility to the public. This might seem good for mental health stigma campaigns until it is realized that “Change a Mind” must compete with PSAs that focus on children, breast cancer, and supporting the troops, among others. Many networks address their public service responsibility by running PSAs at off hours when fewer are viewing TV. Even if the PSA is seen on TV, they seem to be quickly pulled from the air. Most producers and networks have contractual relationships with actors in the video that stipulate the length of time in which the video may be broadcast, often one year. Distributors have to pay residuals to actors in cases when the PSA is used beyond the year. Most PSAs are produced and originally distributed using charitable donations and/or public funds. Rarely are additional monies available to keep them on air. Instead, anti-stigma groups are often able to collect “new” monies to develop an alternative public campaign rather than work to keep the original message on line. The recently distributed What a Difference a Friend Makes in the United States (c. 2008) was preceded by the national Erase the Barriers Initiative released in 2003. These, by the way, are all television examples. Online presentations have even bigger hurdles. Most viewers can skip through PSAs, and commercials for that matter, to hurry to the video or story of interest, further winnowing the sample of people who can recall or recognize the campaign. An equally important aspect to PSAs is the impact of the message. What did the PSA change? Concerns about attitudes versus behaviors discussed in Chapter 2 apply here. While it may be laudatory to change the prejudice related to mental illness, actual change in behavior is more important. Advocates must ask, what is the participant to do differently as a result of observing the PSA? This kind of outcome can be difficult to assess by sampling

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members of the general public who ostensibly have seen or heard the materials. Alternatively, impact can be assessed using an experimental sample recruited especially for this task. Just as discussed in the Guidebook, groups can be randomized to intervention versus control and means of impact indicators compared across conditions. This approach would assume that improved scores in the experiment would reflect population effects of the PSA. The Mental Health Commission of Canada completed just this kind of study in their Opening Minds program. They found that 92 journalism or health studies students who had participated in a half-day symposium consistent with Opening Minds showed significant reduction in attitudes about dangerousness and untrustworthiness. Reductions were also found for a measure of social distance. Unfortunately, highly controlled studies of this kind lack the context in which PSAs are observed; for example, other people present around the TV who may enhance or suppress effects. Context is the very force that yields potentially positive effects of PSAs Previously, we argued that targeted and local stigma change is an important factor for developing the most potent anti-stigma effects. As an anti-stigma strategy, PSAs are limited on both counts. By their very nature, PSAs eschew local for the broad brush – e.g., not London but all of the United Kingdom – and are unable to fine-tune the message; instead of employers, all members of the general public, which may trickle down to employers. Implied in the targeted and local anti-stigma program is specificity. Program content and processes can be adjusted to reflect the idiosyncratic goals of the targeted group. This kind of specificity is lacking in many PSAs. What, for example, is the TV viewer to do differently after watching the compelling message of Glenn and Jessie Close? PSA effects on public or self-stigma and on label avoidance. PSA impact may vary in terms of the type of stigma: public stigma, self-stigma, and label avoidance. Changing the prejudice and discrimination the general public aims at those with mental illness may be difficult. On the other hand, evidence suggests social marketing campaigns may have their biggest impact on label avoidance. PSAs efficiently and poignantly illustrate the distress and hurt of mental illness, directing those suffering from psychiatric disorders to places where more complete information is provided by diagnosis as well as immediate links to relatively local mental health services for the interested parties. One PSA, Beyond Blue, in Australia shows an office worker, tormented by depression, beginning to deal with his sadness by obtaining Beyond Blue resources. At their website (www.beyondblue.org.au) people may review symptom checklists that help them distinguish between depression and illnesses related to anxiety, bipolar disorder, and postnatal depression. The website then lists relevant treatments: medical treatments, to be sure but also psychological interventions (including cognitive behavior therapy and family

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therapies), and alternative treatments (e.g., St John’s Wort, physical exercise, and massage therapy). The potential consumer is taught to be critical in their considerations of interventions, with the website providing summaries about the evidence for different interventions; for example, there is poor or no evidence that suggests ginseng and color therapy are good interventions for depression. The page also includes a prominent “get help” button which directs the interested person to actual services in their area. The US PSA What a Difference a Friend Makes has an especially clear and pointed message: people watching the PSA have a variety of resources they might call on to aid a loved one or peer in need of the kind of support that frequently is the first step in receiving appropriate services. Data on the US announcement demonstrate the benefits of these kinds of PSAs on label avoidance. More than 400,000 people went to the website in the first year of the campaign. It is assumed that people who go to a campaign’s website will become more involved in clinical services for themselves, family, or friends, a hypothesis that has not yet been tested. Canada heeded concerns about targeted approach in their Opening Minds campaign (www.mentalhealthcommission.ca/English/Pages/OpeningMinds. aspx), where they announced two foci in developing their anti-stigma campaign. They said 12 to 18 year olds were important because 70 percent of adults with psychiatric disorder can trace onset to before age 18. They also targeted mental health service providers because users frequently report this group as among the most stigmatizing. Uncertain is the PSA’s impact on self-stigma. As discussed in the next chapter, interventions that enhance personal empowerment work against the loss of self-esteem and self-efficacy common to self-stigma. Recovery and empowerment parallel each other so one might expect effective anti-stigma messages to focus on recovery to support empowerment and weaken selfstigma. Hence, PSAs with a recovery message might be an approach that suppresses self-stigma. To our knowledge, this kind of study has not yet been done. In part, this would require some random approach to identifying and recruiting people with serious mental illness in the viewer world. Then, changes in stigma, self-esteem, self-efficacy, and empowerment would need to be assessed. Finally, some kind of proxy of the kind of behavioral suppression that emerges from a “why try” effect – “Why should I try to get a job? Someone like me is not worthy of those kinds of opportunities” – is needed to assess impact on self-discrimination. PSAs have one, perhaps uniquely important, impact. Earlier, we called it speaking to the choir; directing the efforts of people who are likely to embrace this civil rights issue when educated on it. Put another way, PSAs may rally the troops. Its impact is on people who already agree that the stigma of mental illness unjustly harms people with mental illness; these are potential advocates

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who might sign up for and volunteer to bring about anti-stigma efforts. PSAs can mobilize an essential commodity in the anti-stigma agenda; energetic and committed individuals ready to stamp out the stigma. There are notable concerns about public service campaigns. (1) Stakeholders are left out of development and implementation of the anti-stigma approach. This concern may be diminished if the group developing the approach includes community-based participatory research in the development process. Although service users and other stakeholders may have prominent roles in a CBPR approach, they still may be marginalized in the day-to-day implementation of the program. (2) PSAs often require specialized services, resources, and talents like those of the advertising council which had a lead role in developing What a Difference a Friend Makes in the United States. These campaigns require substantial financial backing; most of the examples here were supported by national governments. (3) Monetary resources to develop campaign media, a website, and paper materials are not available for targeted approaches. Hence, targeted approaches are limited by investing in a more population-based approach. This point, by the way, makes explicit an assumption throughout this book. Targeted anti-stigma interventions, like clinical treatments, require funds to support a cadre of individuals dedicated to developing and implementing anti-stigma approaches. This is not a groundfloor enterprise. Opening Minds and the Resource Center to Promote Dignity and Social Inclusion Associated with Mental Health, the sister service of What a Difference a Friend Makes, have catalogs of hundreds of advocacy groups already targeting stigma change. If we could quantify effect sizes – a number representing the breadth of stigma change – we might expect bigger and better outcomes for PSAs by virtue of the number of people engaged in the approach. Just the potential millions responding to Glenn and Jessie Close seem to support conclusions about impacts, many compared to a hundred or more in targeted approaches. For this reason, PSAs seem to be worth the monetary appropriation. Earlier, however, we said PSAs may have little impact on public stigma, especially compared to targeted groups. This dampens the PSA effect size; many participants true, but an infinitesimal impact on meaningful outcomes. The last concern about PSAs reflects their poignancy: Glenn Close’s 60 seconds were compelling. Examples from other countries are equally stirring. Unfortunately, we are ironically concerned that the power of the message will distract people from the more central goals: ongoing resolution of the prejudice and discrimination of stigma. This problem reflects an important principle of social marketing and other approaches to stigma change: repeated presentation of the intervention over time. The concern is equally important to targeted and local strategies; they will have better effects when the targeted group is repeatedly exposed to the anti-stigma message. Most people habituate to the

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same person making the same anti-stigma message at a face-to-face meeting. This limitation can be addressed by the cadre of people supported by public funds to develop a variety of anti-stigma approaches and then take these approaches out to the workplace, realty groups, faith-based services, and hospital grand rounds.

Strategy I. Provide contact with persons with mental illness Research has shown one of the most effective ways to change public attitudes about mental illness is to foster interactions between the public and the persons with mental illness! Ignorant attitudes are easy to maintain when members of the general public do not encounter persons who have overcome their psychiatric disabilities. Meeting persons with mental illness who are productive members of the community challenges stigmatizing attitudes. Wow, they don’t all have horns. Hank said he has schizophrenia. But his life is a lot like mine.

Individuals with mental illness have a central and essential role in changing attitudes about mental illness.

Tell a story of struggle and recovery The place to begin is to find a place to tell one’s story about struggling with and meeting the challenges of mental illness. Many advocacy groups in the United Kingdom and the rest of the West have speakers’ bureaus through their local affiliates including those of advocacy groups listed in our Learn More About It section at the end of this book. These speakers’ bureaus can hook up with local churches, school groups, civic organizations, and others to share their poignant experiences. Telling a story works best when the speaker and participants are clear on the purpose of the meeting. The advocate does not want to be added to a program as an afterthought. In a typical presentation of this kind, the storyteller might be given an hour’s time. Thirty minutes could be used to present the story followed by 30 minutes for questions and answers, as well as general discussion from the audience.

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Challenging the Stigma of Mental Illness

As examples, we have included stories developed and presented by two advocates. Moshe Levi struggled with manic depression for more than seven years. He is now pursuing his social work degree and has a steady girlfriend. Bob Lundin has had a similar struggle with schizoaffective disorder. He has been a freelance writer and publications director at the University of Chicago Center for Psychiatric Rehabilitation and currently works as a member of an assertive community treatment team in DuPage County just west of Chicago. He is also founder of Awakenings, consumer art shows and poetry across the United States. Bob has told his story at public events throughout the Chicago area and the country. Moshe and Bob’s stories illustrate some of the common struggles and successes of persons challenged by mental illness. Yet, they also show that persons struggling with the same illness lead very different lives. This is perhaps one of the messages the public learns through contact: persons with mental illness are unique human beings with different approaches to life . . . just like the rest of the population.

Moshe Levi’s story Hi. My name is Moshe Levi and I’m here to tell you about a disease I have called bipolar disorder or manic depression. The disorder I have, when it’s untreated, can cause severe mood swings. The actual disorder occurs in the brain and neuro-pathways. Illnesses like depression, manic depression, and schizophrenia are referred to as neurobiological brain disorders. I was diagnosed with manic depression seven years ago. Upon completing high school, at age 18, I was drafted like all of my friends and peers to three years of mandatory military service in the Israeli Defense Forces (IDF). I was a very motivated soldier eager to serve my country. My father and two older brothers had served in combat units and they would often share their experiences during our family “Shabbat” dinner where I listened curiously. I was drafted to an artillery unit and was generally a good and responsible soldier. I got along well with my peers and had no special difficulties. I completed basic training and went on to a nine-month-long professional course during which I was invited to apply to “officer school.” To my surprise I was turned down. I continued in the professional course but it did not feel the same. I felt like my peers were not taking our tasks seriously enough. I began getting up early and waking them up so that we would have more time to prepare. When they protested I got irritable, which led to confrontations and even fights. I had some ideas about ways to improve the unit functioning which I

Challenging the Public Stigma of Mental Illness wanted to share with my officers and therefore asked to meet with them. When the meeting was scheduled for the following week I felt frustrated and angry that they did not realize how valuable and urgent my suggestions were and I burst into their office demanding they meet with me immediately. I was refused and got very upset. I do not remember this too well but at a certain point I was brought to the military psychiatrist who took me to a psychiatric unit where I was given medication which made me sleepy. After a week I was sent home. I began to feel depressed. I wanted to go back to my unit but was told that it would take a while. I waited a while only to be told that it would take a little longer. Gradually I began to understand that it might take a long time, and worse yet, that they might not take me back at all. I began feeling even more depressed. This is not a depression that most people think of as depression. There should be a different word for what those of us with a mental illness experience. It is like a paralysis of the brain – nothing like what I used to call depression! I began thinking about ending my life. I honestly felt physically disabled – as though I’d had a stroke or something. The thought alone of getting out of bed and brushing my teeth seemed like an unbelievable challenge. There was no joy in anything! My parents would suggest we do things together which I used to really enjoy, like hiking and bowling, but I just wanted to stay home. Preferably in bed or on the sofa watching TV. Before all of this manic depression business I lived a life much like anyone else, I guess. I am the youngest of three boys. We have loving and supportive parents and come from a middle-class background. I was always active in school with sports and friends and was quite popular in high school. I don’t tell you any of this to impress you, but to impress upon you that my life was not abnormal from the go! My own stereotypes of mental illness made it impossible for me to accept the diagnosis at first. I can’t recall ever actually meeting a “bipolar.” Like everyone else I would occasionally read in the newspapers or see on the TV news how these people were involved in different crimes and violent behavior, but never really met anyone with a mental illness. So how could I be one of those people? I was not a “weirdo” as a child. I grew up in a normal family and nothing “twisted” happened to me. Therefore, when the doctors told me what they think I have is manic depression I was certain they were wrong! The first time I got sick like this was the most painful thing that’s ever happened to me – to know your mind can go off like that with no warning and that you could think and do such goofy things is terribly frightening.

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Challenging the Stigma of Mental Illness There is so much shame involved with the illness. I went home from the military psychiatric ward and fell into a severe depression that lasted six months. I lost all my self-confidence. The few times I went out to do some chores I dreaded that I would meet someone I knew. When I did, I tried to avoid them for I was afraid they would ask me what I was up to, and why was I at home, and why was I not in the military and in uniform. My only focus was to make sure no one found out about my illness and try to look “normal” at all times. It was the beginning of hiding my big ugly secret. For a long time my illness was kept under control, but I was the sickest I’ve ever been. I was sick in my heart and in my soul. I’m certain that I was experiencing hell on earth! So much of this illness has to do with stigma. In my experience most of the stigma was self-induced. I did more damage to myself than anyone could have! I worried so much about what people would think if they knew. I lived in utter fear that people would find out. I worried my friends wouldn’t want to hang out with me and that no girl would ever want to date me. I worried about what my family “really” thought of me. I even went so far as to think of what the mail carrier thought because a few times I got mail from the military psychiatric unit I was consumed by fear of being found out and loathed the self-knowledge. I hated the life I had been dealt! After six months, the military accepted me back on the status of a “volunteer.” They did not let me return to my artillery unit, nor was I given back my gun. I was given a clerk’s job not too far from where I lived and went back and forth every day. The work I did was not that interesting but boy was I happy to have my military uniform. It made me feel like a “normal” 19 year old and I was less scared that I would be “found out.” For a year I was doing well. I got a bit of my confidence back and made some friends in my unit. I convinced myself that this whole mental illness thing was a fluke and I didn’t need the medication I was taking because I’d be fine without it. I went off my medication. Two weeks later I had my second episode and was hospitalized again. Same scenario: bipolar disorder, military psychiatric ward, isolation room, restraints, anti-psychotic drugs, and suicide watch. The reality that I could no longer deny this illness was staggering. I slowly began to accept that I had this illness and would have to find ways to live with it somehow. I began to get better the more I learned to deal with my illness! I did this through educating myself. I read all the books I could find about manic depression. I also joined a support group which helped me see that I was

Challenging the Public Stigma of Mental Illness not the only one with such an illness and that people do recover. I found a new doctor who is very supportive and encouraging and has never made me feel that I’m in any way responsible for my illness. Nor has he made me feel my parents are! The one thing I’ve done that has improved my recovery the most is talk about my illness. What I have come to find out is that mental illnesses are extremely common and nothing to be ashamed of. In talking about my illness privately and publicly now for four years I feel totally liberated and healed. I coordinate the speakers’ bureau at Enosh, the Israeli nonprofit Mental Health Association, and encourage other people with mental illness to speak out about their experience. We go out to colleges, high schools, community centers, etc. I have actually found that my illness is something I can derive tremendous reward from. That, in fact, without the illness I would never know the reward I now experience. I would not be someone who would be doing public speaking otherwise! I am consistently amazed and pleased by the number of people who come up to me after I speak and share their stories of mental illness – either their own or a family member’s and friend’s. I have, since my diagnosis, completed my military service and am now studying social work at college. I have a girlfriend for a year now and my life seems quite similar to those around me. I have come to realize that my illness may never be gone, but I feel recovered. I feel I have triumphed over this illness personally and I know I am doing a lot to help other people recover by sharing my experience and by being open about my illness. I know it would have made a difference to me if I had seen someone like me talk at my high school or college about their illness. I used to think mental illness was someone digging in garbage cans and mumbling to themselves. That was my whole vision of mental illness. Now I know people with mental illness are people like me.

Robert Lundin’s story My name is Robert Lundin and I live with a serious mental illness. I have a relatively common sickness called schizoaffective disorder. It’s a mood and thought disorder. A schizoaffective disorder can cause abnormal swings in a person’s moods. In my life, I’ve had long, severe depressions, alternating with periods of mania and overactivity. And I’ve had many episodes of psychosis where the disorder has made my

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Challenging the Stigma of Mental Illness thinking grandiose, irrational, even absurd. I’ve had these problems for nearly 30 years. Of course, I can remember how life was before I became mentally ill. It seemed a lot simpler then. I’d like to tell you a little about my life. As a child I was reared in upstate New York. My father was a professor at a small college in Clinton, called Hamilton College. I remember when our new house was built in 1963. It was a big white house. In the back was a hill that was just perfect for sledding and skiing. I used to sled with my sister, who’s three years older than I am. Her name is Sara. She isn’t mentally ill at all. She works for a medical research company in Wilmington, North Carolina. My family moved down south when I was eight years old. After that, I grew up in a small college town in Tennessee called Sewanee. It was a lovely place. Sewanee was located in a mountainous area known as the Cumberland Plateau, just west of the Appalachians. There were creeks, and coves, huge forests, and cliffs; it was like a paradise for me since I liked to hike and camp and do other outdoor sports. I went to a very small prep school, called St. Andrew’s-Sewanee School, just outside Sewanee. Many on the staff were Episcopal monks. I thought they were elegant, but austere. I loved it there and I excelled in high school. I was a varsity athlete, I won many awards for academics, but I think my best talent was as the photographer for the school’s yearbooks. We were proud of our yearbooks and they won awards. Then, after high school, the summer before I went to college, I had my first psychiatric break. One night in Atlanta, with a friend of mine, I smoked some pot that, unknown to me, was laced with PCP, a powerful and dangerous drug. It triggered a psychosis in me. I became so disturbed and demented that I tried to commit suicide. It was not that I was depressed; rather my crazed thinking led me to consider it. I went to the psychiatric unit of a local hospital for three days before the doctor discharged me and I went home. But I remember seeing a man in the unit who had slit his own throat. That image stayed with me for many years. The next fall I entered a liberal arts school in Ohio called Kenyon College. My psychiatric problem stayed away. I finished college with good grades, a love for the theatre, and a major in psychology. Between 1976 and 1977, my junior year, I had the privilege of going to England to study literature and drama at Exeter University. But after leaving college I was entirely unsure what career I wanted to pursue. That’s not too unusual, I think. So, taking some advice from my

Challenging the Public Stigma of Mental Illness sister, I decided to study for a Masters of Business Administration at Vanderbilt University. I was desperately unhappy. It was a lot of stress. Maybe it was the stress, maybe not, but after a year and a half I got really sick. The psychoses I had tasted after high school came back. But this time I wasn’t smoking street drugs. One night, during a lightning storm, I was very psychotic and I was sure the United States was being bombed by the Russians. So, immediately I thought I should tell the university’s chancellor. By a fortunate mishap instead of driving to his residence I drove to the hospital. Now the doctors feared I had a serious mental illness. But not for another year would a doctor diagnose me with manic depression, in another 10 years I would be diagnosed with a schizoaffective disorder. In the meantime the illness was disastrous to my life. I had never been a quitter. I had never failed at anything I put my mind to. But now the playing field was very different. I started having more serious delusions and attacks of anxiety. They were crippling. Sometimes the anxiety left me paralyzed and exhausted. The delusions wreaked havoc on my judgment and ability to get along with people, especially employers. In two short years I had to quit graduate school and I was fired from a prestigious job I had won at the college. I would never get as good a job from them again. Fortunately, most people never have to cope with terrible blows like this. But in between the delusions and mania I had to cope with a series of severe depressions. A doctor prescribed lithium and Tegretol; I take them today. They are drugs that are commonly prescribed for bipolar disorder, but they didn’t really help my prolonged depressions. I just had to live through them. But they never came back. It’s funny that the best psychiatrist I saw didn’t say, “I’m going to cure your depression.” He said, “Hang on, it will eventually go away.” And it did. But that wasn’t nearly the end of my problems. Next I had a series of manic and psychotic episodes, which went on for years. I would think I had special powers, like ESP or expert judgment, or I’d be on a mission. Good heavens, I remember the missions. When the mania got bad, I would think I was a famous person or a religious entity. Sometimes I would think a newscaster on the television would speak to me alone. All sorts of mundane daily events would have special meaning or significance. Over a number of years I’ve seen many different psychiatrists, then finally, in 1991, one doctor in Evansville, Indiana seemed to get it right. He put me on a combination of drugs – mood stabilizers and an

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anti-psychotic medication – and since then my illness has been quite well controlled. I still have problems, but they’re manageable. Best of all, I started making friends, I took my own apartment, and I started working. Starting work after 10 years of mental illness isn’t easy. My resume was full of gaps. I expected that most companies wouldn’t consider my qualifications, so I made a career as a freelance journalist and newspaper photographer. As an independent contractor you don’t really need a resume. You just show your editors that you can produce. I remember when I started, I was so shy that I took my photos to the local paper and slipped them under the front door at night. Then I saw them published. I was thrilled. Eventually, I worked up the courage to introduce myself to the local editor and that began my career in journalism. I made my way up the ladder until I started writing for the Chicago Tribune. Journalism gave way to a journey back to academia, and next, for seven years, I was employed by the University of Chicago as an editor and research assistant. Working in psychiatry opened up a new world to me. I liked the people there, and I could be open about my mental illness. Today, I work in clinical psychiatry as a peer counselor on an Assertive Community Treatment team. The work is difficult and challenging, but I relish it. There are still issues in my life which are problematic, but I’ll never give up on my recovery. You can’t give up. If you give up you’ll waste away. I’d like to say a few things about stigma. People often say that the worst part of living with mental illness is not the disease itself as much as the negative attitudes which people have toward the disease – the stigma. I remember after I tried to take my life after high school many of my close friends learned about my impulsive act. I guess it made great gossip. Some of them never looked at me the same way again. Instead of feeling comfort and sympathy, I felt shame and distress. I denied my problem, I hid it. But after college my illness was so bad that I could no longer deny it or hide it. Subsequently, I was socially isolated. I had health insurance taken away from me. I faced a life where employers could ask if you had a “nervous condition”; where members of the opposite sex would abruptly end a conversation if they got a hint of your disability; where even members of my own family accused me of “goldbricking” because I couldn’t work. To many I was not so much Robert Lundin as I am a mentally ill man, and all that means. Think of your own attitudes toward mental illness.

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The stigma isn’t right. I hope this story will get you to think a little differently about mental illness. Discussion questions How many people here have known someone with a mental illness [show of hands]? How many mental illnesses, besides manic depression, can you name? What are some of the negative attitudes that go along with mental illness? What are some of the positive attitudes of mental illness? What can we do here to fight stigma?

Elements of a good story Moshe and Bob’s stories illustrate some of the essential elements of stigmabusting presentations that are likely to change public attitudes (see below). First, the story needs to be personal. It needs to reflect meaningful experiences and impressions. This is accomplished by using first-person words like “me,” “I,” and “my.” The presenter should not talk about experience in the third person and steep it in formal language; The experiences of persons like yours truly, the speaker, are comparable to those exigencies unfavorably put upon all alienated outgroups.

Bring it home by telling good stories illustrated with concrete experiences. Note how Moshe and Bob both illustrated their stories with specific persons, places, and times. People learn much better by explicit example (“Sometimes I would get so depressed that I would lie in my bed and cry for three days or more”) not heady abstraction (“Depression is like a dark cloth causing utter sadness”). Listeners find it much easier to imagine being in bed for 72 hours; the dark cloth metaphor is vague and more difficult to make sense of. At the same time, don’t avoid professional terms when they illustrate a point. It may provide an opportunity to inform listeners about an important issue related to mental illness. Notice how Bob Lundin educates his audience about psychosis: A psychosis is where you completely lose touch with reality and become very disoriented.

This also communicates to the audience that persons with mental illness have expertise about mental illness worth learning from. Presentations need to be

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truthful; don’t try to embellish them. The story should not be told in an overly positive light: Mental illness isn’t that bad. I survived my three suicide attempts easily.

Listeners might get the idea that depression was not really challenging or that the person did not have a “real” mental illness. Nor should a stark and bad picture dominate: “Being in a psych hospital is like living in a rat-infested slum.” Although it is true that losing the liberty to come and go from an inpatient ward is demoralizing, some people are likely to think the person has a political agenda and is misrepresenting experiences when solely extreme examples are used. Moreover, when a person strays from the facts he or she is likely to say something that is not truthful – “Were you really in restraints and not fed for an entire week?” – and lose credibility. Be reassured that a story of struggling with mental illness is compelling enough to get most listeners’ attention.

Elements of a story about mental illness .

Be personal. Talk about one’s experiences. write from the heart not too formal Be concrete and to the point. Use and define professional terms where needed. Be truthful. don’t hide facts don’t over-embellish Only discuss those things one is comfortable talking about. Keep it short and focused. Provide specific examples of illness where needed. No skeletons in the childhood closet. the impact of disease onset struggling with some failures the impact on family slowly coming to grips and winning Tackle the impact of stigma head on. the effect of other’s judgments Remember the moral of the story. “I work, live, and play, just like everyone”

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There may be some aspects of mental illness with which the person is still struggling and does not want to talk about publicly. Don’t feel all materials should reflect everything. Respect one’s own sense of privacy. If, for example,

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a person feels uncertain or embarrassed about an unrealistic fear of riding in elevators, there is no need to air this problem publicly. Only share those concerns that have resolved in one’s life. Don’t get pushed into telling stories in public until ready. Talking to the public about mental illness can be an empowering activity, but it can also be risky. Don’t expose oneself to these extra challenges unless the person feels he or she will benefit from the experience. Bob and Moshe’s stories included several areas in which the speaker might want to provide specific examples. Talk about childhood and the absence of skeletons in the closet. Bob, for example, talked about a pleasant upbringing in New York. Moshe noted that he had loving parents and was not traumatized as a child. This kind of message challenges the notion that mental illness results from bad parents and stunted development. Share feelings about the sudden impact of mental illness. Bob illustrated this point well: Then, after high school, the summer before I went to college, I had my first psychiatric problem. One night in Atlanta, with a friend of mine, I took some drugs and they triggered a psychosis.

This discussion elicits empathy from listeners. Everyone understands the terror of a successful life grinding to a halt because of the sudden intrusion of serious mental illness. Talk about how the impact of mental illness lasted beyond the relatively brief period of onset. Listeners need to hear that this is not just another short-lived emotional crisis. The person was struggling with a biological disorder that derailed life goals just like any major physical illness. Bob said, The illness was disastrous to my life. I had never been a quitter. I had never failed at anything I put my mind to. But things were very different.

The advocate might also describe how experiences with mental illness affected the family. Speakers may relate how parents and siblings are frequently overwhelmed by mental illness. Family members may progress through a variety of reactions that include anger at the person for his or her mental illness (“Some members thought I was goldbricking,” said Bob), sadness at the interloping symptoms, and acceptance of the disability. This kind of message opens the door to a discussion of the stigma experienced by families. The take-home message in Moshe and Bob’s stories comes next; this should be a climactic moment in the presentation. Despite the challenges of mental illness, I have come to grips with my disabilities and am now achieving life goals. Moshe talks about the meaning of his achievements:

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Challenging the Stigma of Mental Illness I have, since my diagnosis, got a steady girlfriend and am back in college pursuing my diploma in social work.

Bob said: I remember when I started, I was so shy that I took my photos to the local paper and slipped them under the front door at night. Then I saw them published. Eventually, I worked my way up the ladder until I started writing for the Chicago Tribune in DuPage County.

This point directly challenges the myth that mental illness is insurmountable. Disabilities are overcome. Most persons with mental illness live fruitful lives. The story cannot end here, however. The person needs also to tell listeners how stigma worsened their experiences of mental illness. Bob said: I remember after I tried to take my life after high school many of my friends learned about it. I guess it made great gossip. Some of my friends never looked at me the same way again.

Moshe added: I lived in utter fear that people would find out. I worried my friends wouldn’t want to hang out with me if they knew or the neighbors wouldn’t let their kids play with mine.

The audience needs to be punched with this point; a stigmatizing public only makes the tough course of mental illness that much worse. These assertions lead to the moral of the story: I work, live, and play just like you! Persons with mental illness are capable and can accomplish. They look for no special favors. With appropriate support, all the person needs is the same opportunities granted all peoples. Suggestions on how to tell the story. Public speaking can be a daunting task, even when telling one’s own story. There are several values, listed in Table 3.1, which may help to improve one’s style of presentation. First, speakers need to feel confident about their presentation. This feeling is achieved by telling one’s self that the story is important: my story challenges society’s stigma.

The person should also recognize the importance of making the presentation interesting. Masters of public speaking say that sharing a personal story is one of the best ways to get an audience’s attention. As one toastmaster put it, “People like to hear human-interest accounts, blow-by-blow details about what happened in your life.”

Challenging the Public Stigma of Mental Illness Table 3.1

Some values to keep in mind when public speaking.

Values

Handling the Jitters of Public Speaking

Preparation

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Confidence Importance Interest Humility Enthusiasm Energy I’m Glad I’m Here I’m Glad You’re Here I Know What I Know And I Care About You (from Dorothy Sarnoff) Preparation is essential to calm and effective public speaking

Also recognize one’s story is humble. The speaker is not trying to give the definitive statement about mental illness. Nor is the storyteller trying to bring down all stereotypes in a 30-minute presentation. The goal is to provide listeners with a brief glimpse into the life of a person with mental illness who does not act like stereotypes suggest. Remember the importance of enthusiasm and energy; they are infectious and impel an audience to hang on the words of the story. Enthusiasm shows the audience the speaker believes the message to be important and interesting. Enthusiasm is communicated through energy. Never sit down when presenting a story: stand up, walk around, and gesture when needed. Meet the audience head on and look them in the eye. Speak loudly and vary the emotional tone of voice and facial expression. Perhaps the single most important public-speaking consideration is preparation. Regardless of the amount of pre-speech planning and legwork, the person needs to feel prepared and ready to face the audience.

How much should I prepare my presentation ahead of time? Figure 3.1 is a worksheet that will help write out a biography that reflects the key parts of a poignant story. Some may want to use this worksheet to plan all details of presentations. Others may wish to use it as a loose outline for an extemporaneous, off-the-cuff, speech. There are advantages and disadvantages to extensive preparation versus extemporaneous speech; these need to be considered so a person can choose the style that works best for her or him. By extensive preparation, we mean writing out the presentation entirely or preparing a thorough outline with specific examples of each point. Extensive preparation also includes dress rehearsals with a friend who will provide gentle

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HI, MY NAME IS AND I HAVE A SERIOUS MENTAL ILLNESS CALLED.............................................. MY CHILDHOOD WAS NOT THAT UNUSUAL. List some events from youth that are typical of most people. 1 2 3 4 5 Make sure to stress that mental illness was not due to bad upbringing. MY MENTAL ILLNESS STARTED WHEN I WAS ABOUT........ YEARS OLD. List some of the difficult things that happened when mental illness was first beginning. 1 2 3 4 5 UNFORTUNATELY, MY MENTAL ILLNESS DID NOT GO AWAY QUICKLY. List some of the things people struggle with the past several years due to mental illness. 1 2 3 4 5 DESPITE THESE PROBLEMS, I HAVE ACHIEVED PERSONAL GOALS. List some of the things accomplished in terms of work, relationships, and other personal goals. 1 2 3 4 5 DESPITE MY ACCOMPLISHMENTS, I HAVE EXPERIENCED SOME STIGMA AND UNFAIR RESPONSES TO MY ILLNESS. List some of the unfair experiences and harsh reactions experienced from society. 1 2 3 4 5 I END WITH TWO KEY POINTS. 1 I, LIKE ALL PERSONS WITH MENTAL ILLNESS, LIVE, WORK, AND PLAY JUST LIKE YOU. 2 SO PLEASE TREAT ME THE SAME. DO NOT VIEW ME OR RESPOND TO ME BASED ON ANY UNFAIR STEREOTYPES.

Figure 3.1 A guide to setting up a story about experiences with mental illness.

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feedback about strong points of the story as well as suggestions for changing the presentation. Specific advantages to extensive preparation are many; speakers will tell a well-organized story, cover the essential elements, make fewer errors, and be better prepared for reactions from the audience. Some speakers might also prepare visual aids to illustrate key points in the worksheet. For example, one might present photographic slides from childhood illustrating the normalcy of early life. On the downside, extensive preparation may lead to a stale presentation because of rote practice. Moreover, some speakers might find repeated consideration and critique of their stories to be anxiety-producing. Sometimes, it is better to just do the speech and not spend a lot of time worrying about how it sounds. Finally, extensive planning requires several hours of preparation before the presentation, time which many busy people may not have. There are several benefits to speaking off the cuff. Some experts are able to provide an engaging summary of their experiences with mental illness and stigma with nothing more than a half-dozen notes. They believe this approach is fresh and allows the speaker to weave in talking points that address the specific interests of the audience. For example, Clarence noticed his audience was comprised of several homeless persons. So, he decided to talk more about his own experiences living on the streets. There are disadvantages to an extemporaneous style, however. Many persons are unable to present an organized story without some upfront preparation. Without this kind of careful organization, the audience may become confused about the purpose of the presentation; the effect on stigmatizing attitudes may be muted. How does telling a story affect the speaker? Putting experiences with mental illness into a cogent story and sharing it with others will benefit not only the audience, but the speaker too. For some, it serves a therapeutic process. It helps make sense of the challenges and take stock of accomplishments. It may also outline areas in life that need further attention. Telling one’s story can also be empowering. Telling a story helps to recognize that the speaker is no longer a passive responder to mental illness, or to a society that puts down their disabilities. Instead, speaking publicly about illness is evidence that the storyteller accepts his or her responsibilities to society (to become a productive citizen and supportive neighbor) and demands the rights these responsibilities entail.

Telling a family story As we discussed earlier, parents, siblings, spouses, children, and other family members are often victimized by the stigma of mental illness. They, too, benefit

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from sharing their stories publicly. Below is the story of Liu Ying and her son, Chow. In some ways, the story is outlined much like the presentations made by Moshe and Bob. Liu Ying present Chow as a “warm and loving son.” Unfortunately, he was struck by a brain dysfunction that interfered with his early schooling. Liu Ying wrote eloquently about Chow’s challenges and his heroic effort and struggle.

The story of Liu Ying and Chow Hello, I’m Liu Ying. Chow is my son who has been suffering from schizophrenia since the age of 18. He’s now 25 years old and has not been employed for a few years. This chronic and distressing mental illness does not only affect Chow but also has devastating effects on his father, Fong, and me. We always look after Chow with love and devotion. However, we experience heavy burdens resulting from the responsibility and lack of support from the government and the mental health services in Hong Kong, the Special Administrative Region of the mainland China. Chow had always been lovely and nice when he was a little boy. He liked to speak with us a lot, he was very friendly and Chow had many friends in kindergarten and primary school. A dramatic change happened when he was promoted to the secondary school where English is used as the teaching medium although our mother tongue is Chinese. Chow told us from the beginning that it was hard for him to study all subjects in English. Since his admission, Chow had become quiet and passive. He did not share his school life with us and always stayed in his bedroom alone. He no longer had many friends and social activities. Chow began to show difficulties in logical thinking and reasoning, essential for mathematics and science courses. On the other hand, he did well at Chinese language and art. Academic performance plummeted and his self-esteem soon followed. He started to develop some strange behaviors, such as not grooming or bathing himself, wearing the same uniform for many days, and screaming loudly during classes. In addition, he became very impulsive and impolite to others. He often argued with his teachers and his classmates. Eventually his teacher expressed concern to the school’s head, which brought the matter to our attention. We met and discussed his problems with the teacher. His teacher did not seem to realize that his disruptive behaviors at school were due to his

Challenging the Public Stigma of Mental Illness developing mental illness and offered no solution to us. What was sure was that Chow would not be allowed to stay if his behaviors showed no improvement. We were very worried about his condition and did not know what to do. After knowing that we had met with his teacher, Chow became very suspicious and did not trust us anymore. We found him talking to himself, crying in his bedroom, and frequently skipping classes. We thought that there must be something wrong with his mind. We eventually decided to bring him to a psychiatrist. Chow was diagnosed with schizophrenia. He was found to have had delusions and hallucinations for a year. Chow was hospitalized for three months in a mental hospital. It was hard for us to accept what was happening to him. We were sad and could not accept his changes in his personality. We were given little information about his mental illness and treatment, which frightened us even more. What we knew was that the medical staff put him on different medications to stabilize his mood and control the symptoms. The side-effects that developed after medication intensified our worries. After Chow was discharged from the hospital, he was still aloof and not willing to communicate with us. We tried to get him back into school to finish his secondary education. The teachers, however, did not want him back after knowing that he had been admitted to a mental hospital. They worried Chow would cause further trouble if he was allowed to continue his study at their school. With much negotiation, Chow was allowed to return to the school again. Unfortunately, he was rejected by his classmates and some of his teachers. They thought that he was dangerous or strange. Chow was frequently bullied and ridiculed at school. They labeled him as “idiot.” Chow experienced various kinds of stress, which came from peer, teachers, and poor academic results. Finally, he expressed that he did not want to study anymore. We had no other option but to allow him to quit. After leaving school, he idled at home throughout the day and had nothing meaningful to do. Neighbors started to gossip about him; they thought that there was something wrong with his mind and regarded him as “mad” and “insane.” They stayed away from us. They even thought that Fong and I had done something bad or evil in our “previous lives,” that we were now penalized by the “Heaven or God.” They did not want to speak with our family. They even “educated” their children not to greet us when they saw us at the lobby. Their discriminatory actions made me miserable and depressed. We started to believe that this might be my fault which resulted in Chow’s mental illness.

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Challenging the Stigma of Mental Illness Fong and I thought that we should do something to deal with this problem. We tried to seek help from the mental health services in the community. What we eventually received was outpatient service where Chow received medical consultation by a psychiatrist every three months. The consultation time lasted for only 10 minutes. The psychiatrist seemed reluctant to answer our queries after he had filled the prescription form. We found an organization providing vocational training for people with mental illness. However, the waiting time was extraordinarily long. While we were still waiting for this employment program, we pushed Chow to hunt for jobs in the job market although he was not motivated at all. Chow was employed by a fast food shop and was responsible for cleanup. Although he could manage the job, he had problems communicating with co-workers. His colleagues saw his strange behaviors and tended to stay away from him. He was very nervous during work, fearing that he would make any mistakes. He quit the job after three weeks. Our story shows that the community stigmatized and discriminated Chow and our family in many different ways. With his mental illness, he could not receive further education and engage in employment as other people. This created many blocks to his recovery. It is particularly obvious in a Chinese society where people have limited knowledge on mental illness. Fong and I feel helpless with the current situation and bleak about Chow’s future. We really hope that the public can accept people with mental illness and support them in their rehabilitation process. The government should do more to reduce public stigma.

A family member’s story differs from those written by consumers in two ways. First, the pain experienced by persons with mental illness is equally terrifying for family members. They often sit by helplessly and watch their innocent child withstand these tortures. Families frequently feel alone and without support as they deal with these difficulties. Liu Ying said: The church was just not there for parents of a mentally ill child. It seemed the minister couldn’t even talk about mental illness. We thought he wouldn’t talk or preach about it because it might in some way stigmatize him.

Chow’s story illustrates the second important point of the family story. The shame of mental illness stigmatizes family members too: We felt a little ashamed and looked deep within ourselves thinking, ‘What did we do wrong, where did we go wrong?’ Even though you’re being told it’s not

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your fault, these things happen. You think you have control – why didn’t we take better care of the situation?

The same principles for how to tell a personal story apply to how to tell a family story. Be honest, be concrete, and be personal. We provide a worksheet for preparing family stories (in Figure 3.2) to help family members who might decide to take on this task in their community.

Other factors that facilitate contact The effects of contact on stereotypes and stigma have been researched by a large number of social psychologists who have identified several factors that enhance the effects of stories on public attitudes. Contacts should mildly disconfirm stereotypes. Stories have little effect on public attitudes when they greatly differ from stereotypes about mental illness or when they unintentionally reinforce the stigmatizing attitude; examples of these kind of stories are provided in Table 3.2. Some listeners will question the honesty of stories that grossly diverge from stereotypes: “I just don’t believe it happens that way.” Others will likely view the story as irrelevant to the issue of mental illness if it seems radically different from public expectations: I don’t care what he says, I don’t believe that guy is really mentally ill. I still think all schizophrenics should be locked up.

As a result, people discount or ignore stories that grossly differ from their expectations about mental illness. Stories that reinforce or otherwise support stereotypes are equally problematic. People who hear a speaker say she is not capable of working will fail to change their belief that persons with mental illness can live independently. These kinds of presentations actually strengthen stigmatizing attitudes. See, I told you all mental patients needed a guardian. They just can’t care for themselves.

The best kind of story mildly disconfirms stereotypes. Coming up with these kinds of stories requires a delicate balance. On one hand, common concerns about mental illness need to be acknowledged. Speakers agree that they have a significant illness that periodically returns and requires regular treatment and support. This kind of admission “qualifies the person” as one who struggles with serious mental illness and knows something about stereotypes. On the other hand, stories need to include a message that challenges the stigma. The

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HI, MY NAME IS AND I HAVE A SON/DAUGHTER/BROTHER/SISTER/RELATIVE/CLOSE FRIEND WHO HAS A SEVERE MENTAL ILLNESS CALLED............................ HIS/HER CHILDHOOD WAS NOT THAT UNUSUAL. List some events in his/her youth that are typical of most people. Make sure you stress that this mental illness was not due to bad upbringing. 1 2 3 4 5 HIS/HER MENTAL ILLNESS STARTED WHEN ABOUT YEARS OLD. List some of the difficult things that happened when you first noticed the mental illness beginning. 1 2 3 4 5 UNFORTUNATELY, HIS/HER MENTAL ILLNESS DID NOT GO AWAY QUICKLY. List some of the things he/she has struggled with the past several years due to mental illness. 1 2 3 4 5 THE MENTAL ILLNESS WAS ALSO VERY HARD ON THE FAMILY. List some of the things family members have struggled with during the past several years due to mental illness. 1 2 3 4 5 DESPITE THESE PROBLEMS, HE/SHE HAS ACHIEVED SEVERAL ACCOMPLISHMENTS. List some of the things he/she has accomplished in terms of work, relationships, and other goals. 1 2 3 4 5 Figure 3.2

A guide to setting up a story about family experiences with mental illness.

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DESPITE THESE ACCOMPLISHMENTS, HE/SHE HAS EXPERIENCED SOME STIGMA AND UNFAIR RESPONSES TO HIS/HER ILLNESS. List some of the unfair experiences and harsh reactions he/she has experienced from society. 1 2 3 4 5 MY FAMILY HAS ALSO EXPERIENCED SOME STIGMA AND UNFAIR RESPONSES AS A RESULT OF THIS SEVERE MENTAL ILLNESS. List some of the unfair experiences and harsh reactions family members have experienced. 1 2 3 4 5 I WANT TO END WITH THREE KEY POINTS. 1 MOST PERSONS WITH MENTAL ILLNESS, INCLUDING MY SON/ DAUGHTER/BROTHER/SISTER/RELATIVE/CLOSE FRIEND LIVE WORK, AND PLAY JUST LIKE YOU. 2 GIVE THEM A BREAK. DO NOT VIEW THEM OR RESPOND TO THEM BASED ON ANY UNFAIR STEREOTYPES. 3 AND GIVE THE FAMILIES A BREAK TOO. Figure 3.2 (Continued)

speaker said he was able to hold down a responsible job and participate in a happy family life despite some recurring problems. Advocates need to avoid the trap of overselling their accomplishments, even if they are true. Persons with mental illness who say they worked their way through Harvard Medical School may be discounted as not representative of the typical “mental patient.” This problem can be avoided by framing accomplishment in terms of the moral that needs to be stressed in anti-stigma stories: I work, live, and play, just like you. Hence, their accomplishments are no different from the average person who is struggling with making a living, raising a family, and dealing with daily stressors. Daily stressors for the presenter include some recurring symptoms of major mental illness. Members of the general public should interact with contacts. Telling the story is a good beginning to challenge public stereotypes. Contact has an even greater effect when people interact with the speaker and engage in an exchange of ideas. One way to do this is to provide a question and answer period after the story. Note that Bob Lundin listed several questions after his biography above. Some of these were quite personal, hoping to draw in listeners: “How many people

A story that reinforces the stereotype

Persons with mental illness are unable to care for themselves, work in competitive jobs, or live independently.

I was first hospitalized with schizophrenia when I was 18. I then spent six years in and out of psychiatric hospitals. Then, on my 24th birthday, I decided to stop giving in to my illness. I put myself through law school, spent a few years in the DA’s office, and then became a county court judge.

I have been hospitalized several times and still suffer frequent psychotic symptoms. I am not able to hold a real job nor am I capable of handling my own money. I cannot maintain a committed relationship with a loved one and need to live in a sheltered environment for the rest of my life.

Persons with mental illness are dangerous and need to be locked up to protect the community.

I have paranoid schizophrenia which makes me suspicious of people. However, I never raise my voice or even get angry at people. I always handle differences with others in a responsible and direct manner.

I have schizophrenia and am incapable of controlling my anger. Sometimes I think I am going to explode. When people make me angry, I want to kill them. I need to be put away so I don’t hurt others.

A story that mildly challenges the stereotype I was first hospitalized while in Army boot camp. I dropped out and spent the next several years trying to learn to deal with my symptoms. I was able to get through community college with some support and now am a mechanic at a large auto dealership. Even though I have occasional flare-ups, I’m able to keep my marriage alive as well as be a good parent to my two kids. Sometimes I become manic and get angry at the world. One time I was on a street corner yelling at people for breathing my air. But, then I started taking lithium and my mood disorder is under better control. Sure, sometimes I get angry at people. But don’t we all. I’m able to control my symptoms and myself.

Challenging the Stigma of Mental Illness

A story that grossly differs with the stereotype

Example of stereotype

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Table 3.2 Stories that grossly disconfirm, unintentionally reinforce, or mildly challenge stereotypes about mental illness.

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here have known someone with a mental illness?” Others are related to the central point of the presentation: “What are some of the negative attitudes that go along with mental illness?” In addition, speakers should encourage listeners to ask questions, be active participants in the storytelling: Bob, do you really mean to say that you can hold down a job like normal folks? This sounds too good to be true. Are you really mentally ill like I see on TV?

Some of these questions can be alarming. But the presenter needs to remember that many attending the group are going to be skeptical about the message. That’s good. These are parts of the public that especially should be reached. Skepticism means their stereotypes about mental illness are being challenged. Unfortunately, this skepticism may come out in the form of jarring questions. The task is to try to provide a polite and direct answer: That’s a good question. Yes, I can work like others. In fact, I’ve held my current job for seven years and have risen to quite a responsible role. Am I mentally ill like those people on TV? Well, I’m not sure what you’re referring to on TV. But I had a bona fide serious mental illness that caused numerous hospitalizations, doctors, and medicines for more than 20 years. It’s something that I continue to struggle with, just like a person with diabetes.

Bob was not defensive in his reply. In fact, he acknowledged that this was a good question and proceeded to answer each concern directly. Interactions should not be limited to intellectual topics. Program participants also need the opportunity to mingle with the speaker in a less structured setting; a social hour after the presentation provides a good opportunity. In this way, participants will see that the presenter is a genuine person with the same strengths and foibles as others. The story was not just a well-prepared act. Finally, interacting with people on a common task is an excellent way to challenge stigmas. One activity we have found useful is for speaker and audience to agree that stigma is a problem in their community and join together in developing some stigma-busting project. This might entail identifying local examples of images that are disrespectful to mental illness – for example, the neighborhood ice cream store’s advertising campaign “You must be crazy not to buy our chocolate soda” – and brainstorming some way to encourage the store to change their slogan. The section on protest later in this chapter discusses stigma-busting efforts like these more thoroughly. The point here is that personal stereotypes are challenged when people interact with speakers on tasks like these and see at firsthand that they have the same social skills and limitations as the average person.

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Institutions should support contact. Speakers are likely to have greater impact when presenting to established groups rather than trying to assemble a bunch of the public together for this one event. Established groups have organized membership, regular meetings, and a common place to rendezvous. The purpose of churches, synagogues, and mosques make them especially appropriate groups to contact; their mission is to promote moral views of society that should include open-mindedness to groups like persons with mental illness. Several civic, service, and social groups are also excellent venues for presenting one’s story on mental illness. Rotary International, for example, inaugurated “Erasing the Stigma,” a campaign to educate business leaders about the truths and misconceptions of serious mental illness. Still, seeking out groups like Rotary is like speaking to the converted. Speakers may also wish to contact other groups in the area. Adult education provides another place where presenters may seek out people to tell their story. Growing numbers of adults are returning to community colleges, either to improve career opportunities or participate in stimulating courses about areas of interest. Frequently, instructors in servicerelated disciplines – nursing, social work, psychology, pastoral ministry, education, and recreational therapy – would find the story of a person with mental illness to be an interesting addition to their curriculum. The speaker may also wish to contact children. Schools and service groups (like the Scouts) would benefit from these stories and provide a stage to present them. A presentation is further enhanced when authorities of these institutions publicly support the story. For example, impact on a church group would be even greater if the pastor welcomed the speaker in front of the congregation and encouraged participants to listen carefully to the message. Similarly, school principals and civic group presidents should endorse the presenter in front of the audience. Sometimes, group leaders may not be aware of the importance of their public endorsement so speakers should talk with leaders before the presentation and encourage them to provide an introduction that supports the message. The leader’s introduction should include the following parts: . . . .

I am a person who has successfully met the challenge of mental illness; I have come to discuss with the group the fact that mental illness, like most disabilities, can be overcome; I wish to inform the audience about society’s stigma; and everyone in the audience can assume an important role in changing stigma by listening to the speech and supporting strategies.

Find opportunities for frequent, “real-world” contact. Going to various church and civic groups as an invited speaker, and interacting with members after the

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presentation, are excellent ways to introduce the public to ideas that contradict stereotypes about mental illness. This beginning can be expanded further when opportunities to interact regularly with the public is found. One way to do this is to become a member of the group (e.g., a church or civic committee) and participate in activities. Joining alongside people in “everyday, normal” activities communicates a key message in a subtle way: I’m just like you. For this kind of interaction to have significant impact, the person needs to interact with fellow group members as equal members. They will have greatest impact on peers in the group when they assume equal status. Equal status is earned when the person meets all responsibilities of membership; for example, attend meetings, volunteer for tasks, and assume authority roles. Such goals are not achieved quickly. It takes everyone several months or years to be fully accepted into a new group. But this kind of acceptance is perhaps the best evidence that stereotypes are beginning to be torn down in the community.

Responses from the audience Audiences frequently have strong reactions to stories about mental illness. The speaker is presenting a stirring tale that challenges some long-held viewpoints. Public responses vary from polite acceptance to angry denial. The desired response is “sign me up.” These are individuals who recognize their stigmatizing attitudes and vow to stop them. In addition, they hope to amend past mistakes by joining the stigma-busting effort. Sometimes, these people respond with a “me too.” The “me too” listeners may be struggling with a psychiatric disability and have experienced firsthand the injustice about which the presenter spoke. They may be family members who suffer stigma because of the trials of their loved ones. “Me too” respondents may be persons who are challenged by physical disabilities or are members of other society’s outgroups (like ethnic minorities or gay and lesbian groups). Regardless of the source of stigma, these individuals understand the injustice which the speaker relates and want to stand up and support the message in the meeting. Perhaps the most difficult group to deal with is the I don’t believe it crowd. These are the folks who ask tough questions about personal experiences; there approach may take several forms. They may say they do not believe someone who is functioning so well can be mentally ill. Or they may discount accomplishments altogether: “getting out of the hospital and overcoming ten years of psychosis is no big deal.” Or they may think the person is an oddball, an exception that does not represent real “mental patients.” They might say people are whining and need to toughen up: “Aw c’mon. Stigma isn’t really that bad against mental patients.”

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Having someone stand up after the presentation to challenge the message can be frightening. Consider these persons – individuals who publicly question the message – as the success stories in the crowd. They represent the important group of listeners who once believed the stereotypes about mental illness. The story challenges their belief and changes the way they view the world. Now they are trying to set the world back the way they knew it by questioning the message. Remember, though, that every question that challenges yields a response that threatens their stigmatizing attitudes. AUDIENCE MEMBER:

SPEAKER: AM: S:

AM: S:

You tell a great story and obviously have done okay for yourself. But you’re not really mentally ill. Not like mental patients we see in the newspaper. What would you consider being really mentally ill? Well like you lose touch with reality, or hear voices, or, I know, get locked up in state hospitals for a while. But that’s me. I have an illness called schizophrenia. At times in my life I have heard voices. I have had delusions where I thought the radio was talking to me. I have been hospitalized for up to three months at a stretch. But mental patients don’t get jobs. Yes, sir. We do get jobs, frequently good ones. We may still need some help, but many of us are able to hold on to them and make an income.

One of the more difficult responses to presentations are listeners who politely accept the message. They seem to offer no arguments, nor do they seem to want to join the stigma-busting campaign. It is hard to determine whether the polite acceptors have heard the message and challenged their stereotypes or ignored its meaning and experienced no real change in attitudes. Polite acceptors may need repeated exposure to persons with mental illness to experience any real change in opinion.

Strategy II. Changing stigma through education Some people may need more factual information about serious mental illness to challenge its stereotypes. Education programs help identify the myths of mental illness and facts that challenge these myths. Many stigmas fall away in the face of this kind of evidence. Persons with mental illness and family members are excellent resources for conducting this kind of education program. This can be done while telling one’s story, defining terms that might

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be foreign to listeners in the process. Alternatively, the advocate might provide basic facts about mental illness in a public lecture. An education program like this would require learning key points about serious mental illness. Having this kind of knowledge provides the advocate with more credibility in the eyes of listeners in the audience: Gee, it seems this guy really knows something about the facts of mental illness. He’s not just talking about his limited experience.

But learning the basic facts about mental illness is a lot of work. Some readers may wish to pair up with a psychologist, psychiatrist, or other mental health professional who knows a lot about mental illness and is sympathetic to the overall goals of stigma-busting (more than likely, a local advocacy office like those listed in the Learn More About It section of this book can supply a list of professionals who would work with the advocate for no fee). Advocates can act as the overall facilitator of the presentation and let the mental health professional review basic facts. The goal of education sessions is not for the listener to learn the extensive literature on mental illness. This kind of effort takes professionals many years to master. Rather, the goal is to provide listeners with some simple facts so that many of the public myths about mental illness crumble. Understanding and treating serious mental illness is a complex business. There are, however, a few key points which provide a clearer picture of mental illness. This information is summarized as handy fact sheets in Table 3.3; a speaker might decide to photocopy the fact sheets and hand them out when educational presentations are provided. The fact sheets are divided into sections that address two central questions for understanding serious mental illness: . .

What is the experience of serious mental illness like? Given this experience, what are effective ways to diagnose and treat serious mental illness?

Myths and contrary facts about mental illness Education on the experiences of serious mental illness and effective treatments for them may change some stigmatizing attitudes. An even more forceful way to use facts about mental illness is to contrast them with the common myths that are the foundation of stigmatizing attitudes. Research suggests that people are more willing to give up these attitudes when they realize the myths are false. Myths can be falsified by challenging them with corresponding facts about

92 Table 3.3

Challenging the Stigma of Mental Illness Severe mental illness fact sheet.

Facts about the experience of the disease Defining characteristics of severe mental illness

Diagnoses

Exclusionary diagnoses

Breadth of disability

Prevalence of diagnoses

Length of disability Schizophrenia Manic depression Major depression

Examples of key symptoms

Psychotic symptoms

Negative symptoms Depressive symptoms

Manic symptoms

Psychiatric diagnoses commonly associated with severe mental illness include schizophrenia, major depressive disorder, and manic depression. Diagnoses like mental retardation, autism, substance abuse, and Alzheimer’s disease are usually not what is meant by severe mental illness. Some persons, however, may have dual diagnoses that include one of the severe mental illnesses plus substance abuse or mental retardation. Persons with severe mental illness suffer problems in many life domains, including work, relationships, housing, physical and emotional wellness, income, education, recreation, and spirituality. Persons with severe mental illness struggle with their disabilities for many years. About 1 in 100 people develop schizophrenia. As high as 3 in every 200 people develop manic depression. As many as 25% of all women and 12% of all men have a major depressive episode in their life. Hallucinations (hear voices), delusions (believe you are Jesus Christ), thought disorder (not talking clearly), significant agitation. A state of profound disinterest in the world. Deep sadness, loss of enjoyment, inability to sleep well, significant change in appetite and energy, suicidal wishes, feelings of worthlessness. Feeling invulnerable, grandiose ideas (I am so smart I invented the computer), flight of ideas (ideas racing through your head), not sleeping for days, intense energy.

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(Continued) Anxiety symptoms

Development and course of mental illnesses

Acquiring the disorder Childhood

Onset of the disorder The illness over time

The biology of severe mental illnesses

Long-term outcome or prognosis Nerve cells

Profound worry, unreasonable fears, pounding heart, shortness of breath, chills or hot flashes Persons are usually born with the potential for severe mental illness. These disorders are not caused by bad parenting. Unlike developmental disorders, persons usually do not show obvious signs of severe mental illness in childhood. Major symptoms usually start between 16 and 40 years. Onset can be slow or abrupt. Many persons move among stages where symptoms are quite pronounced (acute stage), they are fairly well controlled (residual stage), and they are gone altogether (remission). Most persons are able to learn to cope with their disabilities and achieve their life goals. Severe mental illnesses are likely caused by the inability of nerve cells (neurons) to communicate with each other effectively.

Facts about assessment and treatment Diagnosing the disorder

The DSM-IV

How diagnoses are made

Medication

The goals of medication Antipsychotic medications

Antidepressant medications

The Diagnostic and Statistical Manual of Mental Disorders is the text used by professionals for diagnosis. There is no single test or easy way to diagnose. It is based on a careful assessment of symptoms, onset, course, and disability. Medications reduce symptoms and protect the person from relapse. Often prescribed for schizophrenia and manic depression, these medications have been shown to be particularly effective in reducing agitation, inappropriate affect, and hallucinations. These drugs are effective in treating the sadness of major depression and other severe mental illnesses. (Continued )

94 Table 3.3

Challenging the Stigma of Mental Illness (Continued) Mood stabilizers

Beware of sideeffects

Rehabilitation and support

Goal assessment and motivation

Community support

Skills training

Cognitive rehabilitation Family education and support

Mutual help

These drugs include lithium and typically are prescribed to treat the euphoria and agitation of mania. Most of the medications prescribed for severe mental illnesses have nasty sideeffects, including dry mouth, drowsiness, trembling hands and legs, and restlessness. Rehabilitation needs to reflect the person’s goals, no one else’s. This kind of assessment examines the person’s life plan, strengths, limitations, and motivation to pursue various life directions. Many persons are able to achieve a variety of vocational and independent living skills when they have the regular support of a counselor. This kind of support occurs in the person’s home or place of work, as often as the person needs it, and should be relatively limitless. Skills training teaches persons the social, coping, and self-care skills they may need to achieve their goals and meet the unforeseen demands of daily living. Some persons are better able to cope with life when they learn ways to think about the world. Families who learn about the course of severe mental illness (are taught skills to cope with the illness and receive the support of others) are better able to deal with the illness and help the family member challenged by it. Also known as self-help, persons benefit when they interact with others who have mental illness.

mental illness. In Table 3.4, we review eight myths that are particularly troublesome for mental illness, essential information for education programs against stigma. A point-by-point contrast of myth and facts can be a powerful addition to an education program.

Challenging the Public Stigma of Mental Illness Table 3.4

Eight myths and corresponding realities about mental illness.

1

Once crazy, always crazy. People don’t get over it

2

All persons with mental illness are similar

3

Severe mental illnesses are rare, just like lepers

4

The mentally ill are dangerous, one step away from a maniacal killing spree The mentally ill can never survive outside the hospital The mentally ill will never benefit from psychotherapy The mentally ill are unable to do anything but the lowest level jobs Bad parents and bad upbringing cause severe mental illness

5

6

7

8

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Long-term follow-up research suggests that many, many persons with the worst types of schizophrenia and other severe mental illness are able to live productive lives. Persons with mental illness are as diverse a group of people as any other. Saying all persons with mental illness are alike is similar to saying all Latinos are the same. Not true! Actually severe mental illnesses like schizophrenia, manic depression, and major depression may account for up to 8 to 10 percent of the population. That means 640,000 people in a metropolitan area the size of Chicago, enough folks to fill Omaha, Nebraska and Des Moines, Iowa combined. Very, very few people with mental illness ever murder someone. In fact, persons with mental illness are usually no more likely to be violent than the rest of the population. The vast majority of persons with mental illness live personally successful lives in their community. Carefully controlled research has shown that support and rehabilitation have a significant impact on the lives of persons with mental illness. Persons with mental illness perform at all levels of work, just like the rest of the population. Schizophrenia and the other severe mental illnesses are biological diseases. They are caused by genetic or other embryological factors.

The myth of personal responsibility. There is one additional myth that has a powerful effect on the public’s misconceptions; persons with mental illness are responsible for their symptoms and disabilities. As the result of bad life choices, personal weakness, or just not caring, they cause their mental illness and are responsible for its consequences. The public belief that a person is accountable for his or her mental illness leads to a loss of sympathy (“I don’t pity someone who caused their own problems”) and an unwillingness to help (“I’m going to save my support for someone truly who deserves it”). This kind of attitude also leads to blame for problems (“That person caused his mental illness. He’s just weak”), anger in response to blame (“I’m sick of these people

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who can’t pull themselves up by their bootstraps”), and a call for punishment to meet one’s anger (“Let’s lock them up in hospitals until they can make it on their own”). Studies suggest that challenging the responsibility myth through education has significant effects on both attitudes and behaviors. Simply informing people that mental illness is a biological disorder of which the person has little control can significantly improve attitudes and behaviors towards persons with mental illness. One way to do this is to compare mental illness to better-known diseases like diabetes or cancer. “You don’t blame someone for taking insulin because they are diabetic!” NAMI in the United States had supported a similar campaign: Open Your Mind: Mental Illness is a Brain Disorder.

On bumper stickers, letterhead, flyers, and pamphlets, this brief slogan broadly educates the public about mental illness. It’s not a choice for which persons are responsible. It is the unfortunate result of heredity; the person is no more to blame than the individual plagued with cancer! These kinds of campaigns offer a lesson in developing anti-stigma programs. There is research that suggests use of slogans such as “Mental Illness is a Brain Disorder” yields both positive and negative responses. People who hear these messages are less likely to believe a person with schizophrenia is responsible for her or his disease, a positive effect. But hearing this kind of message also leads to worse prognostications: “people with serious mental illness do not get better because it is hard-wired.” This brief lesson stresses why stigma change needs to be accompanied by useful program evaluation strategies, like those summarized in the Learn More About It section at the end of this book.

Education and values self-confrontation Sitting passively and listening to personal stories about mental illness may fail to stir listeners and force them to think differently about their stigmatizing attitudes. Participants might believe that the person’s story does not apply to them: “Other people might be narrow-minded, but not me.” Values selfconfrontation forces program participants to look at their own attitudes. In this technique, program participants confront their stigmatizing attitudes about a group. Research suggests that persons are likely to change their attitudes when they find out that, rather than being open-minded, they really stigmatize a group.

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Wow, I always thought I had a fair and unprejudiced attitude towards the mentally ill. But it looks like I have some bigoted views about them.

The exercise takes about 15 minutes to complete and is usually introduced at the beginning of education programs. After a brief introduction to open the education program, the speaker hands out the first worksheet (part 1) in Figure 3.3 with the instructions,

Name ................................................................................... Date ........................................................ Your beliefs about persons with mental illness are greatly affected by your values about society. How important do you believe the following values are for a free society like the United States? Circle the best response for each of the four items. 1. Equal opportunity for all Not important 1

important 2

2. A chance to pursue your dreams Not important 1

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very important 4

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important 3

very important 4

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3. Fair opportunity regardless of race, creed or disability Not important important 1

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very important 4

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4. Respect and admiration for your accomplishments Not important important 1

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very important 4

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Now determine your total score by adding up each of the four numbers you circled. Your total score should fall between 5 and 20. + + + = number from number from number from number from total score item 1 item 2 item 3 item 4 20

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F R E E D O M I N

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S O C I E T Y

Finally, enter your total score on the Freedom in Society scale to the left. To do this, write down your total score on the right side of the scale. Then draw a line across this scale at your score. Finally, blacken in the scale below that line. 20 For example, Morton got a 10 on the scale. He marked the right side between 8 and 12. He then drew a line across the scale at this point. Lastly, Hector blackened in the scale below the line. line

16 12 10

8 4

0

Figure 3.3 Values and mental illness worksheet (parts 1 and 2).

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How important to a free society do you believe the following opportunities are for persons with severe mental illness? 1. To work in fulfilling jobs that pay a living wage Not important important 1

2

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very important 4

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2. To live in the neighborhood of their choice Not important important 1

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3. To marry and start a family Not important 1

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very important 4

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important 3

very important 4

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4. To enjoy a good time in their community Not important important 1

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very important 4

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Now determine your total score by adding up each of the four numbers you circled. Your total score should fall between 5 and 20. + + + = number from number from number from number from total score item 1 item 2 item 3 item 4 20

16

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F R E E D O M &

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M E N T A L

Next, enter your total score on the Freedom and Mental Illness scale to the left. To do this, use the same procedure you used in Part 1. First, write down your total score on the right side of the scale. Then, draw a line across the scale at your score. Next, blacken in the scale below the line. I L N E S S

20 For example, Hector got a 6 on the scale. He marked the right side between 4 and 8. He then drew a line across the scale at this point. Lastly, Hector blackened in the scale below the line.

16 12 8 6

line

4

0 Finally, compare your score on the Freedom in Society scale to the Freedom and Mental Illness scale. Which one is taller?

Figure 3.3

(Continued)

Your attitudes about persons with mental illness are strongly affected by your values. In particular, values about freedom and opportunity have a significant impact on the ways you approach persons with mental illness. Hence, the place to begin is to determine your views about basic attitudes in a free society. Please answer the four questions on the top of the Values and Mental Illness Worksheet,

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Part 1; circle the number that corresponds with how important you feel each value is.

Give participants about five minutes to do the top half of the worksheet before continuing with instructions. Now I would like you to determine your total score. Add up the numbers representing your importance ratings for each item. You can do this on the bottom of the worksheet. Then mark that number on the right side of the “Freedom in Society Scale.” Draw a line across the scale at that point and blacken the area below the line. It should look like the reading on a thermometer. This score represents your view about freedom and opportunity in your society.

The exercise provides a baseline rating of the participant’s view of freedom. Given the importance of this value in Western societies, most participants come up with a total score well above 12. Next, hand out the second worksheet (Values and Mental Illness Worksheet, Part 2). On the first worksheet, you reported your values for freedom in society. Now I’d like you to consider your views about opportunity for persons with mental illness. Like before, I’d like you to rate how important you believe the four items are on the top of the sheet. Circle the number that corresponds with your answer.

After giving them five minutes say, Now I would like you to determine your total score in this area. Add up the numbers representing your importance ratings for each item in the allotted space at the bottom of the worksheet. Then mark that number on the right side of the “Freedom and Mental Illness Scale.” Draw a line across the scale at that point and blacken the area below the line.

At this point, participants have a rough measure of their overall view of freedom plus their openness to opportunities for persons with mental illness. Finally, participants compare their perspectives. Now I want you to compare your perspective on freedom in society and freedom for persons with mental illness. An easy way to do this is by holding the two worksheets up to the light and compare the blacked part of the scales. Make sure that the horizontal line 0 on the bottom of each scale overlap. If you have equal respect for freedom in society and opportunities for mental illness, then the two scales should line up evenly. Many people, however, have a much higher “Freedom in Society Scale” score; for example, their Freedom in Society Scale is two fingers taller than their “Freedom and Mental Illness Scale.”

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These people need to reconcile the difference. “How is it that you could be fairly supportive of freedom for society in general, but willing to limit the opportunities of people in mental illness?”

Many participants will show differences between their views about freedom and hesitancy to provide opportunities to persons with mental illness. The values self-confrontation exercise clearly illustrates this point. The education program speaker should inform people who show big differences across scales that these differences may exist because they believe myths about mental illness. Hence, reviewing these myths, and discussing more basics facts about them, may help change attitudes. Some speakers repeat the values self-confrontation exercise at the end of the education program. Hand out a new set of worksheets and find out whether the two scales are now much closer.

Three special groups to target for education programs The education programs described in this chapter will help most change their stigmatizing attitudes. Three groups in particular should be the focus of education efforts. School children. Prejudice is not the sin of adults alone; children do it too. Childhood prejudice is evident at a fairly young age. Four-year-old children have been known to recognize differences across groups and belittle the outlier. Look at that person with dark skin. He’s different from me. I don’t want him around.

Or, more specific to mental illness: Look at the person who acts different from me. He’s bad.

Schools are natural places to start education for children. Students are familiar with videotapes and training programs that attack racial stereotypes. These methods might be used to help children develop a more enlightened perspective about mental illness. Persons with mental illness might pair up with teachers at local schools and review the mental illness fact sheet with their students (Table 3.3). They could also use this time for the person with mental illness to tell his or her story to the class. High school age children might benefit from the values self-confrontation exercise.

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Stigmatizing attitudes are learned from parents. Mothers and fathers who talk about their dislike of “crazies running wild in society” will produce children with the same attitudes. Parental attitudes seem to be especially influential when children are about 10 to 13 years old. Hence, parents of children in this age range should especially be included in education efforts. They could be invited to special assemblies on mental illness and stigma. These programs are successful when they have the official support of the school board and the principal is present to host the show. School homework could also include anti-stigma exercises which might be completed with parents. Student professionals. The stigma of mental illness is not just a problem of the uninformed public. Survey research has shown that many mental health professionals agree with these myths. This is particularly troublesome given that the community turns to mental health professionals for information about psychiatric disability and for policies about how to act towards them. Hence, leaders in the mental health field have called for programs to educate future mental health professionals. Special training programs have been developed for psychology interns, psychiatry residents, and social work students at schools in the United Kingdom, Western Europe, North America, plus Asian countries, including Japan and China. Several curricula are available to help advocates impact these groups. Curricula focus on attitudes which foster empowerment and undermine any stigmatizing foundation which new students may bring to their training. The advocate may wish to find out whether professional training schools in their area provide similar training. Faculty in these programs does not assume that traditional coursework prepares students for a career in services to persons with mental illness. These special training programs provide indepth review of the material in the serious mental illness fact sheet. They also hire persons with mental illness and family members to come to class and tell their stories about mental illness and recovery. Training like this should not stop when the graduate diploma is earned. In-service programs must continually address issues of stigma in professionals. Persons with mental illness are important speakers at these programs. These in-services might occur at professional conferences or as part of regular training at the treatment center. For example, most clinical programs that serve persons with mental illness have weekly or monthly intramural seminars. Persons with mental illness might call the director of training at the agency and ask to be put on the schedule to tell their story about mental illness and stigma. Stigma is not likely to seep into staff minds when they regularly hear stories like these. Opinion leaders. Perhaps an even more effective way to change attitudes is to target the opinion of leaders in the community. These are persons who influence the attitudes of large numbers of people. Leaders have a “bully

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Table 3.5 Opinion leaders and their communities. These are great targets for education because they have a “bully pulpit” to which a significant following looks for guidance. Opinion leaders Elected officials and politicians Religious leaders and clergy Business leaders Reporters and entertainers Teachers and youth-group leaders

Their followers Their constituency Their congregation Employees, co-workers, and other entrepreneurs The media-consuming public Their class and group members

pulpit” from which they may change local opinion. Hence, if the leader’s views change through contact and education, attitudes of their community follow. Table 3.5 lists types of opinion leaders that may be targeted in contact or education programs. Citizens elect government officials at the local, county, state, and federal level to make decisions about issues that affect daily living. In this capacity, mayors, governors, legislators, and prime ministers seem to be ready-made champions for changing stigma about mental illness. Anti-stigma programs tend to be more effective when conducted at the grassroots level; that is, among people who politicians view as their voters. Towards this end, the interested reader may wish to join efforts in nationally organized advocacy groups that sponsor an array of formal and informal meetings with politicians, using these forums to educate officials about mental illness and stigma. Meetings like these are especially effective during election times. The presence of persons with mental illness is essential for them to hear stories of recovery and empowerment. Religious leaders may be better suited for influencing the masses. Faithbased communities regularly turn to them for moral guidance; the injustice of psychiatric stigma is clearly a moral issue. Hence, education and contact programs for the clergy provide an excellent opportunity for changing societal attitudes. Religious leaders, in turn, develop programs for members to consider their prejudicial ways and to include persons with disabilities in their congregations. A Catholic group in the Archdiocese of Chicago, for example, started “Open Doors, Open Minds” to identify and overcome barriers that prevent persons with disabilities from joining its mission. This program has developed a special “Faith and Fellowship” to encourage persons with mental illness to have active roles in their congregations. Another source of opinion leaders is the business world. Employers, work colleagues, and entrepreneurs look to business leaders for their vision of society. Hence, business leaders are an important target for education and

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contact. A variety of civic groups cater to businesspersons. Many of these groups adopt public action efforts as part of their mission. Rotary International’s Erasing the Stigma (ETS) campaign is one example of business leaders seeking to sway public opinion on mental illness. This program seeks to educate members about one particular myth: persons with mental illness are unable to get back to work. What is especially impressive about the ETS campaign is not only education, but an actual commitment to hire persons with mental illness. Once the business and community leaders understand the facts about mental illness, we inform them of qualified individuals who have completed psychiatric rehabilitation and are ready to return to the work force. (From the ETS brochure)

Strategy III. Protest discriminatory practices Sometimes, education does not yield a fast or strong enough impact on stigma; despite efforts to change one’s community, large segments continue to express ignorance about mental illness and dangerousness. Other times, opinion leaders or media outlets continue to misrepresent mental illness despite public education programs. For example, elected officials play on community fears and attribute neighborhood problems to “those mentally ill homeless.” A movie producer distributes yet another psycho killer film. These kind of efforts actually spread stigma and disaffection with mental illness. Still other times, change is observed in attitudes but not behavior; people report they are more open-minded about mental illness, but still refuse to hire persons with psychiatric disabilities or rent them apartments. Protest is needed in cases like these. The targets of protest are fundamentally different from education and contact in several ways. .

.

The stigma targeted by protest is public: talk radio hosts are trashing mental illness, greeting cards are making mental illness the butt of jokes, or advertisers are selling products using disrespectful images. Education and contact programs target relatively private attitudes: what people think about mental illness. The targets of protest, by nature of being public, have broader and potentially more offensive impact: persons with mental illness are insulted by talk show hosts, children learn disrespectful messages from greeting cards, and people continue to believe myths because of advertising. Private thoughts don’t affect anyone, but the person thinking the thoughts and the handful of people with whom they share their attitudes.

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Public stigma leads to unfair behaviors. Property owners buy into these attitudes and fail to lease property to persons with mental illness. Employers don’t want to interview individuals with a history of psychiatric disability. Legislators believe stigma and fail to support government programs that provide persons with mental illness a fair chance. Health care providers withhold treatment because of misguided attitudes.

Specific examples of protest targets. Table 3.6 lists several examples of groups that should be targeted for protest. Common to these examples are companies that generate products or services that perpetuate myths about mental illness. Newspapers and magazines frequently do this by only running headlines that focus on sensational aspects of mental illness. Compare the number of stories on John Hinckley’s mental illness (“Man who Shot Reagan was Wacko”) versus reports on the amazing advances in practice related to schizophrenia (“Clozapine Brings Significant Cures”). Television and radio newscasters are Table 3.6

Specific examples of groups that should be targeted for protest.

Group Newspapers and magazines Television shows

Movie production companies Radio stations Greeting card companies Advertising companies

Businesses Legislators and public commentators

Employers Property owners

Example of service or product that promotes stigma Sensational headlines about “crazed killers.” Video magazines that focus on the “dangerous mentally ill.” Situation comedies that disrespectfully portray mental illness. Studios that produce homicidal maniac films. News stories that focus on dangerousness. Talk show hosts that use disrespectful language. Companies that produce cards that joke about mental illness. Marketers who sell products using disrespectful images, for example, a peanut distributor packaging their product in a bag that looks like a straitjacket with the slogan “certifiably nuts.” Companies that use advertising like this. Individuals who try to push their agenda on misconceptions of mental illness, for example, “There should be more gun control because mentally ill will get weapons and shoot people.” Businesses who won’t hire people if they have a history of mental illness. Real estate offices and property owners who won’t lease homes to persons with mental illness.

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equally guilty of focusing on the violence related to mental illness. Movie studios have created an entire genre that stretches this truth: slasher films that suggest all persons with mental illness are only one stressor away from killing someone. Many groups make fun of persons with mental illness and should be targeted for change. Advertisers and greeting cards freely use words like wacko and crazy to highlight their products. TV shows and movies frequently feature a silly and crazy guy to generate some laughs. Some politicians and commentators use mental illness to advance a personal agenda; “We need to have gun control because too many psychos are packing pistols.” Some employers won’t hire persons with mental illness. Some property owners won’t lease properties to persons with psychiatric disability. While these last two groups are important targets of protest, there are laws which prevent this kind of discrimination which should also be considered. Ways to use these laws are discussed in Chapter 5. How protest works. As outlined below, protest has two components. First, protest carries a moral message: “Your advertisement showing psychosis is wrong. Mental illness is not funny.” The message is meant to be direct and clear. People and the community must accept blame for prejudice and stop it. This kind of message appeals to the community’s sense of integrity and honor. The fundamental components of protest are: . .

A moral message that stigma and discrimination are wrong! A negative consequence for public stigma and discrimination.

Second, protest entails a negative consequence to stigma. Disrespectful representations of mental illness or discrimination against persons with psychiatric disability are met by a reaction which discourages such future practices. In some ways, protest is meant to punish public stigma and discrimination. Protest hinders this kind of behavior in two ways. First, protest holds up stigma to public scrutiny and disapproval. Did you realize that Smith Press1 published a book called Beware of the Psycho Killer. This book is grossly disrespectful. Shame on them.

Second, this kind of public condemnation can lead to financial repercussions. “Do you want to buy books from a publishing house that sells things like that.” Businesses are likely to respond to this kind of economic incentive. The effects of interest here relate to changes in stigmatizing behaviors. Protest is essentially an external aversive event; for example, not buying 1

Smith Press is fictional. We in no way intend it to reflect any existing business or enterprise.

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products from a stigmatizing store. People stop acting discriminatively in order to stem these kinds of repercussions. In Chapter 2, we mention rebound effects; efforts to stop prejudicial attitudes through protest can actually lead to worse attitudes, a “don’t tell me what to think” effect. Protest and attitude suppression are discussed below. The point here is that protest is indicated for stopping discrimination, not for changing attitudes. If an advocate is intent on soliciting civic-minded members of a service club to hire more people with mental illness by changing their thoughts about mental illness, protest will not help, but if anything will make it worse. On the other hand, if the goal is to get a local movie house to stop using stigmatizing jingles on its marquee (“Come see Friday the 13th, Freddie Krueger is an insane loony!”), protest by trying to decrease ticket sales may be effective.

What might specifically be done to protest There is a variety of ways in which one might protest public stigma or discrimination (see Figure 3.4). Some of these can be done alone; others are more effective when conducted by a group of people. One letter may get someone’s attention, but 1,000 letters demand a response. Almost all of the mental health advocacy groups listed throughout this book (and summarized in the Learn More About It section) are supporting a stigma-busting campaign. Strategies vary in the amount of discomfort experienced by the persons who are the object of protest. Some are relatively mild because they are nothing more than a private communication between stigmatizing group and

causeslittle discomfort Letterwriting Phonechains Publicdenunciation Marchesandsit-ins Productorserviceboycotts causesmuch discomfort

Figure 3.4 The progressive ladder of protest.

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mental health advocates. Others represent more public expressions of dissatisfaction, trying to seek public condemnation for the company’s behavior. Still others are direct assaults on the profits of the company. The advocate should carefully consider the pros and cons of using painful versus mild forms of protest. Relatively painful approaches are likely to be experienced as an attack by the company. The advocate must consider whether this kind of assault is an overreaction. More mild and private approaches, like letter writing, are less likely to be seen as an attack. These kinds of approaches are especially useful if the intent is to build and maintain a working relationship with a group in the future. For example, a protest-based campaign may not wish to boycott a greeting card manufacturer because they have distributed one stigmatizing card. Instead, the company may be very responsive to a letter writing campaign pointing out the disrespectful message. This kind of gentle approach might then lead to an alliance which will continue to promote positive images in the future. Many advocacy groups typically start with relatively benign protests (letter writing) and only escalate if companies or individuals are unresponsive or further disrespectful. Writing campaigns. Frequently, members of the entertainment industry, news media, and other groups stigmatize mental illness without considering its implications. Receipt of several letters expressing concerns is often sufficient to derail such practices. An example of a letter from this kind of campaign is provided in Figure 3.5. Stigma-busting letters need to be specific. Do not write to a company expressing general concerns about prejudice. Begin the letter by identifying a specific product or service found to be stigmatizing (I found the enclosed birthday card in the racks. It says, “If you think I’m nuts about you, wait until you see the wacko at the crazy house”). Let them know where the product was found, naming the vendor as well as the city and state in which it occurred (I was shopping at Brown’s Department Store in Newcastle). The issue may be a problem of the local vendor and not the company; providing the location allows the company to check it out. State clearly why the product or service is offensive (Words like nuts, wacko, and crazy house are disrespectful and perpetuate false perceptions about mental illness) Many people still do not realize that terms like crazy and psycho are disrespectful. Take the opportunity to educate the person about mental illness. Provide a few facts from the serious mental illness fact sheet (For your information, about 8 to 10 percent of Americans have serious mental illnesses like major depression, schizophrenia, or manic depression. With appropriate care, most are able to live independently, work jobs, and build a family). Also educate the correspondent to the impact of stigma (Unfortunately, one problem they experience is stigma and discrimination. Society has a lot of ignorance about mental illness).

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December 12, 2009 Patrick Corrigan 1122 Green Street Smalltown, IL 60430 Mary Jones Chief Executive Officer Smith Press, Inc. 1234 Main Street Newcastle, UK Dear Ms. Jones: Recently I was shopping at Brown’s Department Store in Newcastle when I found the enclosed birthday card in the racks. It says, “If you think I’m nuts about you, wait until you see the wacko at the crazy house. Happy birthday.” This card is patently offensive to persons with mental illness. Words like nuts, wacko, and crazy house are disrespectful and perpetuate false perceptions about mental illness. For your information, about eight to ten percent of British people have serious mental illnesses like major depression, schizophrenia, or manic depression. With appropriate care, most are able to live independently, work jobs, and build a family. Unfortunately, one problem they experience is stigma and discrimination. Society has a lot of ignorance about mental illness. Please help us stop this stigma and ignorance. I would appreciate your company discontinuing this greeting card, and others like it, that disrespect persons with mental illness. Thank you for your consideration. I look forward to your reply. Respectfully, Patrick Corrigan Figure 3.5 Example of a stigma-busting letter.

Letters should be sent to the person in charge. Company presidents and CEOs are exquisitely sensitive to the image of their company and often willing to respond unilaterally to repair this kind of problem. Middle managers may be more concerned about covering up the issue. Send it to the president or CEO by name. This kind of personal approach is likely to get a reaction. The president or CEO’s name and mailing address can be easily obtained by calling the company or searching online.

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Make sure the letter calls for a way to rectify the situation (Please help us stop this stigma and ignorance. I would appreciate your company discontinuing this greeting card, and others like it, that disrespect persons with mental illness). Ask the company to remove the product. In fact, ask them to remove similar products of which the group is unaware. End the letter with a request for the CEO to reply and let the group know how he or she responded to the letter. Sign the letter and provide a mailing address. Do not send a letter anonymously; companies will ignore letters like these. These letters are forceful when received by regular mail or through the internet. Two other qualities should be noted about the sample letter. First, be brief. Never send a letter that is longer than one page. Company presidents are very busy and unlikely to consider requests that are lost in several pages of explanation. Second, be polite. Do not accuse the company or otherwise attack it. This kind of language shows the same kind of respect demanded from the company in return. Sometimes more is needed than simply discontinuing a product. For example, a local newspaper that published a misleading article about homelessness that led to municipal policies against housing programs needed to print a retraction. In this case, the letter should include a request for a prominently placed retraction. The letter may even include language which they might include in their correction. In a recent article, we suggested that all persons with mental illness are homeless because they cannot care for themselves. We suggested that more hospitals be opened and that money stop being spent on housing programs in our community. We were wrong. Recent information provided to us by a local advocacy group suggests most persons with serious mental illness become useful members of the community with appropriate support. This information is based on research sponsored by the Royal College of Psychiatry. We have reconsidered our position and now support community-based housing for persons with serious mental illness.

One last point should be considered about letter writing. When a group is sponsoring a letter writing campaign, make sure each writer varies their content in some way to represent his or her own opinion. Companies that receive 30 letters that are all alike will be less influenced than companies that receive the same number of letters that reflect the unique interests of each writer. Letter writing campaigns are effective. Take, for example, newspaper and poster adverts for a film titled Crazy People. The original advert included a picture of a cracked egg with hands and arms and the caption, “Warning: Crazy people are coming.” Paramount Pictures changed marketing strategies after receiving numerous letters and meetings with several advocacy groups. The new advert had pictures of the film’s stars, Dudley Moore and Daryl Hanna, with a revised header, “You wanna laugh tonight?”

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Phone calls. If writing letters does not work, another way to get a target’s attention is to phone it. Phone calls are more conspicuous and demand a response. A script should be developed that several advocates might use to call up the company. The script should include all the parts of a stigma-busting letter. Once again, make sure individual scripts are amended so they reflect the specific style and interest of the caller. Phone calls should be directed at one person in the company. CEOs and presidents are probably not the best person to contact. They frequently have several levels of secretary and receptionist insulating them from the public and hence are not likely to get them on the phone. Many companies have a customer affairs office; the director of the office might be an appropriate person to call. Alternatively, the marketing department is typically concerned about community response to a product. The head of this office might also be a good target. Make sure to have a specific name and number in mind when members of the group call. Preparatory work before beginning the phone chain may be useful by calling the company’s central switchboard to identify the name and number the group will all call. Public denunciation. Letter writing and phone calling are relatively private efforts to get the company to respond to concerns. If these are ineffective, going public may be necessary. Let the community know of public disapproval and rally them to express similar dissatisfaction. One way to do this is to write a letter to the editor of the local newspaper. This is something that can be done when an individual is unhappy about the way a company is stigmatizing mental illness. The letter to the editor should contain all the elements of the letter in Figure 3.5. A stigma-busting group seeking a broader impact might send out a press release; an example of a press release is provided in Figure 3.6. Editors and producers of daily newspapers or local television stations usually require that news stories arrive at their desks in the form of a press release. Press releases can be written without much trouble. Make sure to include the organization’s return address, a contact person with his or her phone number, and the gist of the story. Note the press release in Figure 3.6. After the address and other contact information, the words hhPRESS RELEASEii are written across the page followed by the words “For Immediate Release.” Sometimes a title for the story is written here. Then, begin the body of the press release with a dateline as shown in the first paragraph. It’s important to include in the body of the press release names of the principal players in the story, in this case Bill Dekirk, Sally Evert-Dekirk, and Citizens for Accurate Reporting on Schizophrenia (CARS). In the topic sentence of the first paragraph, briefly provide the content of the story. Use later paragraphs to add background and quotes. Make sure facts are straight, names correctly spelled, and story thoroughly proofread for spelling and grammar. Send it by mail, fax, or webmail to

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Citizens for Accurate Reporting on Schizophrenia Box 123 Leeds, UK For additional information: Bill Dekirk, President Tel: 1-800-555-1234 Sally Evert-Dekirk, Vice President Tel: 1-800-555-2345 << P R E S S R E L E A S E > > For Immediate Release Mental Illness Advocates to Protest Newspaper Offices (Newcastle, December) On Monday, December 15, at 12:00 noon Citizens for Accurate Reporting on Schizophrenia (CARS) is planning to picket outside the offices of the Anytown Reporter to protest the newspaper’s insensitive and misleading series of editorials about the homeless in Anytown. In two recent opinion pieces, the paper implied that the homeless were lackadaisical and immoral, and their failure to work was due to weaknesses in their character based upon poor family upbringing. CARS believes that many homeless persons are disabled with untreated mental illness worsened by the unavailability of community mental health services to care for them. CARS is a grass roots organization that was founded last year by Anytown residents Bill Dekirk and Sally Evert-Dekirk whose daughter has schizophrenia. They were offended at inaccurate reporting on schizophrenia in their local media outlets. Figure 3.6 Example of a press release.

targeted media outlets. These can usually be found in the Yellow Pages or through a Google search. In fact, it is often a wise tactic to call the newspaper, TV, or radio station and secure the name of a news editor or reporter beforehand who covers the health beat or community news. Send the release directly to that person. Call the editor or reporter and ask him or her if they have received the press release. The press release is meant to be an informative bite of the whole story. A reporter will likely call the number listed on the release if more information is needed. Reporters may want to talk at length and arrange for photographs to support the story. If a TV station becomes interested, they may want to send a crew to a place mutually convenient to advocates and camera crews.

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Creative press releases often capture public attention. For example, Mind Freedom, located in the San Francisco area, put together a hunger strike with demands including evidence that psychotropic drugs correct a chemical imbalance, decrease the likelihood of suicide, and do not increase the overall likelihood of violence and suicide. Six people began the hunger strike. These and related facts were put out on a media advisory fact sheet sent our August 13, 2003. Marches and sit-ins. One way of garnering media attention is to stage a march or sit-in. Both forms of non-violent protest create a controversial distraction which directs public attention toward a political issue. Both require good organization and a committed group of protestors. Many remember marches and sit-ins from the 1960s and 1970s for civil rights and against the war in Vietnam. They were tremendously successful in shaping public attitudes about racial equality and the war. These actions, however, raised the ire of segments of the population; resistance against participants of a march or sit-in supporting mental illness should be expected. Moreover, countless marches and sit-ins have not earned media attention and have gone down in the annals of obscurity. Good organization will minimize this. Remember, advocacy groups have a right to freedom of assembly, specifics which may vary by country. Municipalities may require obtaining parade permits for large gatherings. In many Western nations, the city government cannot determine which groups do or do not get permits. They cannot discriminate except where public safety is concerned. However, sit-ins on private property – for instance, at a theater showing an objectionable film – may result in trespassing charges and the theater might seek to have the group removed. In most instances, it is wise to notify the police of protest-related activity so they are not surprised by your presence. An example of useful slogans for pickets is summarized below. Examples of slogans for signs and placards are: . . . . . . . .

Persons with mental illness are people just like everyone. Most persons with mental illness don’t need to be cared for. They work just like everyone. It’s not rare. One in five people have a major mental illness. Mental illness does not equal violence. Murderers are evil, not mentally ill. Homelessness is not caused by mental illness. It’s caused by poverty. Persons with mental illness live in their community, not hospitals. You don’t call me crazy. I don’t call you fool.

Boycotts. There is another pro-active way to put forward the agenda of the mental health user. Simply stop buying, selling, or using products or services of

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companies that behave poorly towards persons with mental illness. Boycotts have yielded some remarkable successes. For example, boycotts against segregation by Gandhi in India, Desmond Tutu in South Africa, and Martin Luther King, Jr. in the United States were all successful. It is not only possible to boycott a product such as an offending movie or a firm that uses hurtful advertising, also consider boycotting the advertiser or media source in which advertisements appeared. In that way, both the company and its media outlets know of public anger and that their behavior was stigmatizing. This kind of boycott might generate a news story. Like a successful march or sit-in, boycotts require widespread organization and communication. Unlike marches or sitins which can be colorful mini-events, a successful boycott generally requires a large number of participants. Participation can be comparatively anonymous, such as refusing to pick up an item in the grocery store. Participation in marches and sit-ins is more direct and may require bolder commitment on the part of a protestor. In terms of specific tips for effective boycotts, do not boycott a single product that a company produces; boycott all their wares. In this way the protest reverberates throughout the company, not only in one division. Let the offending company know they have been targeted for a boycott. Notify the president, media relations department, and board of directors of the intention to economically stymie them until they respond positively to anti-stigma requests. In addition, fax a notice of the protest, in the form of a press release, to local, regional, and national news outlets. Inform the public and rally the constituency through meetings, newsletters, and phone calls. Do not forget to reappraise the boycott after a pre-decided amount of time. Collect information on the success of the effort. Determine if the company has changed its offending behavior. Share this information with allies and the media.

Protest and social reward Protesters punish media groups that stigmatize mental illness. In like fashion, they should reinforce the media and business community when it does a good job. A short letter or a telephone call to an editor or reporter who has written a sensitive and fair story on the issue is likely to lead to more positive articles in the future. Therefore, call the persons responsible and tell them that they did a great job with a specific article or radio segment. There are already several positive examples like this. The popular media have produced films and television shows that disseminate stigma-countering information. For example, NAMI worked with CBS to produce the “Marie

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Balter Story,” a movie about the struggle and successes of a woman who had been institutionalized for more than a decade. CBS and Hallmark Cards aired a 1986 film, “Promise,” where James Woods and James Garner depicted the real-life interactions of a man with schizophrenia and his brother. These media efforts are especially promising because they efficiently educate large numbers of people about mental illness stigma.

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Addressing Self-Stigma and Fostering Empowerment

Every person wants to be recognized as a special and unique marvel. Each and every one of us has dreams, desires, and needs. In most cases we know what they are and ever so often we also know how to achieve them. Ilil Tzin Self-stigma refers to the state in which a person with mental illness has come to internalize the negative attitudes about mental illness and turns them against him- or herself. During this process, a person often “loses” previously held identities (e.g., as student, worker, parent, etc.), while the stigmatized “illness identity” becomes the dominant one. In extreme cases, people may feel, or be perceived by others, as though they have “become” the illness, or “engulfed” by it. Self-stigma often takes the form of “I am” statements such as those outlined in the following list of self (“I”) statements that result from internalizing stigma: . . . . . . .

I really am unable to care for myself. I’m dangerous and could snap at any minute. I’m no different from a child. I can’t handle responsibility. I’m a bad person. I’m weird. I’m not worth the investment of time and resources.

Challenging the Stigma of Mental Illness: Lessons for Therapists and Advocates Patrick W. Corrigan, David Roe, and Hector W. H. Tsang Ó 2011 John Wiley & Sons, Ltd

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Not surprisingly, people who come to believe and internalize these sorts of “I am” statements suffer from negative consequences. It is demoralizing to experience oneself in such a negative manner, hard to set personal goals when people feel they are not worthy of having goals and difficult to achieve them when feeling incapable. This chapter will focus on trying to understand how self-stigma develops and is sustained and, more particularly, what can be done to reduce it. Before we set out to do this, however, we briefly pause to make a loud and clear statement about self-stigma to avoid any possible misunderstandings: self-stigma is not a person’s fault; nor is it a part of the person’s illness! If the public did not hold negative and stigmatizing attitudes in the first place, these would never have become internalized, causing people the painful and disabling experience of self-stigma. Thus, while self-stigma manifests itself as a personal subjective experience, it is the consequence of social forces. Eventually stigmatizing attitudes towards people with mental illness vanish and self-stigma with it. This chapter focuses on overcoming self-stigma in the interlude. Beginning to learn about what self-stigma is and appreciating its crippling impact pose the basic question: how does it develop in the first place? By gaining a better understanding of the process by which it emerges, it is possible to develop more effective ways to prevent it.

How does self-stigma come about? Some sociologists focus on labeling theory (Link & Phelan, 2001), which assumes that all people have learned the stereotypes of mental illness. These stereotypes become personally relevant to people who find themselves “labeled” mentally ill, causing self-esteem to suffer. Individuals then constrict their social networks and opportunities in anticipation of rejection due to stigma. This in turn leads to a host of negative outcomes such as isolation, unemployment, and lowered income which, like a vicious circle, further decreases self-esteem and self-efficacy. Estroff (1989) described the transformation of a once-valued person into someone who is dysfunctional and devalued by self and others, the process by which some people who have been diagnosed with mental illness “lose” their sense of self, or the self has been so altered that it seems as though a different identity has taken over. The process by which stigma comes to be internalized has been termed “roleengulfment” and was originally described by Lally (1989). He defined engulfment as acceptance of the “patient role” as the primary definition of self. Consider this example; Jane introduces herself by saying, “I am a 35-year-old

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schizophrenic.” In other cases it may be more subtle and be expressed by a person’s attitude (“I can’t try for a job as a clerk. That is too demanding for a ‘patient’ like me”) or behavior (e.g., being extremely intimidated during interactions with people who do not have a mental illness, because they are not “patients”). As someone becomes increasingly engulfed with his or her illness, “patient”-related activities may gradually expand to a point where they have, in effect, taken over one’s entire life and become the main, or even the only surviving, context for self-evaluation.

What is the impact of self-stigma? There is substantial evidence that self-stigma has profound negative effects on both the objective and subjective components of recovery for people with mental illness (Corrigan, Watson & Barr, 2006; Lysaker, Roe & Yanos, 2007). More specifically, studies have shown self-stigma to be inversely associated with hope, self-esteem, self-efficacy, and social functioning. Self-esteem refers to the evaluative aspects of oneself, how favorably one perceives him- or herself and subsequent personal regard. Try to imagine how people who buy into self-stigma think about themselves. They often believe they are bad, weak, unworthy, and not entitled to basic resources available to others. Not only am I trying to cope with my illness and the losses it generated, but I must be awfully weak and fundamentally bad.

Many people with low self-esteem believe they are not worthy of their own respect, recognition from others, and support from peers. People are just wasting their time on me. I won’t amount to anything.

This kind of a feeling is often accompanied by guilt. People search their life history to find out what they did wrong that brought on this damnation. With the deprivation of self-esteem typically comes loss of hope. Not only do people believe they are currently inferior and worthless, but they come to think things will not get better in the future. Loss of hope and poor selfesteem feed each other in a continuous spiral, deepening over time. People with low self-esteem and little hope also lose confidence in their ability to succeed. Consequently, they feel a decreased sense of self-efficacy, and believe that they are incapable of performing in a manner that will help them make progress towards achieving their goals. This leads to a “why try” attitude.

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Why try for a real job? Why try to live on my own? Why try to develop an intimate relationship? I can’t handle it. And if I get a job or a good place or a decent mate, I’ll blow it.

With these kind of helpless and hopeless attitudes, even successes are dismissed as quirks. People who self-stigmatize do not give themselves credit for their accomplishments. Instead, they attribute their successes to other people, while they see failure as their fault alone. I didn’t get that job because of my abilities. They hired me because they wanted to hire a consumer to be politically correct and show off to their friends.

What determines whether and how self-stigma will develop? The examples above illustrate how lower self-stigma can be crippling. Interestingly though, while many people indeed suffer from profound and disabling self-stigma, there are many others who do not. This raises the important challenge of trying to identify processes and factors that influence whether or not people with mental illness internalize public stigma or alternatively, succeed in rejecting it and preserve positive “non-illness” self-concepts. Gaining a better and more complete picture about the mechanisms involved in self-stigma may help guide the development of tailored and effective strategies to illuminate it. Those who closely identify with the stigmatized group but consider stigma to be illegitimate (“I have a mental illness and I’m not ashamed”) will experience righteous anger (“I won’t allow others to treat me unfairly”) rather than decreased self-esteem because of internalized stigma. They are more likely to be active in group advocacy and empowerment efforts. Opposite them are people who do not seem to identify with the group and thus appear relatively indifferent to selfstigma, regardless of their perceptions of its legitimacy. They do not experience stigma being directed towards them because they do not perceive themselves as part of the group. Finally, the group of concern in this chapter: individuals who self-stigmatize and identify with the stigmatized group, but view the negative stereotypes and resulting discrimination as legitimate, and suffer a decrease in self-esteem. The intensity to which a person is affected by stigma is mediated by how contingent his or her self-esteem is on the domain in question (e.g., honesty, work ethic, attractiveness). Lysaker and colleagues (Lysaker, Roe & Yanos, 2007) looked at this in a different way. They hypothesized that the impact of being aware of having a mental illness is moderated by “meanings” that the person attaches to having

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a mental illness (i.e., how the illness is conceptualized and what the conception signifies for the person suffering it). For example, if a person’s acceptance of having a mental illness is accompanied by the belief that he or she is not capable of achieving valued social roles (i.e., holding the belief that “people with mental illness have nothing to offer, they can’t work, volunteer, be a friend or a parent”), then higher awareness (“I am aware of having psychiatric problems”) is expected to be associated with greater hopelessness and less motivation to try to cope with problems and achieve life goals. However, if one becomes aware of having a mental illness, but does not believe that it precludes chances for a satisfying life (i.e., “I have a mental illness but this does not mean that I can’t contribute to society by having a job, doing volunteer work, or being a supportive friend”), then awareness may help the recovery process. Their model suggests that people are actively involved in constructing and negotiating the meaning of the illness (Roe & Davidson, 2005; Roe et al., 2008). People often actively try to make sense of their situation and explain it in their own terms. Often, constructing meaning out of these experiences helps people feel more in control and a greater sense of agency. Recent research (Lysaker et al., 2007) has provided evidence for the view that the meanings people attribute to their illness and the amount of self-stigma they attach to it influence the impact of being aware of having a mental illness on the recovery process.

Self-stigma assessment Before discussing how self-stigma impacts persons, we provide a brief self-test. Readers should answer the questions in Figure 4.1 to determine whether they beat themselves up with stigma. Alternatively, readers might administer this test to family members, clients, or peers who may struggle with self-stigma. The key for the test as well as the interpretation guidelines can also be found in Figure 4.1. The test was divided into two sections. Section A determines whether readers identify themselves as individuals with past or current mental illness. Persons who have no history of mental illness, or who admit to no diagnosis or problems with psychiatric disability, are not likely to suffer from psychiatric stigma. This is not meant to imply that denying one’s mental illness is a strategy for dealing with self-stigma. Rather, we are only alluding to the obvious; people who do not believe they have a mental illness are not likely to stigmatize themselves. Hence, if the participant did not answer “yes” to the statement in

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Self-stigma Assessment Scale Section A I currently, or in the past, have struggled with a mental illness (check one):

yes

no

If no, stop here and proceed to the Interpretation Guide on the next page. If yes, what was the diagnosis? ..................................................................................................................................................... ..................................................................................................................................................... What problems or disabilities did you have as a result of this mental illness? ...................................................................................................................................................... ...................................................................................................................................................... ...................................................................................................................................................... Section B Now rank how much you agree with the following statements using this agreement scale. strongly disagree

disagree

neither agree nor disagree

agree

strongly agree

1

2

3

4

5

........... 1. Persons with mental illness are morally weak. ........... 2. I am morally weak because I have a mental illness. ........... 3. Persons with mental illness can’t care for themselves. ........... 4. I am unable to care for myself because I have a mental illness. ........... 5. Persons with mental illness are dangerous and could snap at any minute. ........... 6. I’m dangerous and could snap at any minute because I have a mental illness. ........... 7. Persons with mental illness are no different than children. ........... 8. I’m no different from a child because I have a mental illness. ........... 9. Persons with mental illness can’t handle responsibility. ........... 10. I can’t handle responsibility because I have a mental illness. ........... 11. Who would want to live next to a person with mental illness? ........... 12. Who would want to live next to a person like me with mental illness? ........... 13. Everyone can plainly see persons with mental illness are weird. ........... 14. Everyone can plainly see I’m weird because I have a mental illness. ........... 15. Persons with mental illness are not worth the investment of time and resources. ........... 16. I’m not worth the investment of time and resources because I have a mental illness.

Figure 4.1

Self-stigma assessment scale (parts 1 and 2).

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Interpretation Guide for the Self-stigma Assessment Scale Section A Self-stigmawillhavenoimpactonyouifyouhavenocurrentorpasthistoryofmental illnessordonotadmittoitsimpact.Hence,ifyouansweredNOtothestatement “Icurrently,orinthepast,havestruggledwithamentalillness,”thenself‐stigmawill havenoimpactonyou.Moreover,ifyouareunawareofyourdiagnosisorbelieve thatmentalillnessresultedinnoproblemsordisabilities,thenself-stigmawillnot likelyhurtyoueither. Section B Scoring:AddupthescoresofalltheEVENnumbereditemsandenterthetotalinBox1 below.ThenaddupalltheODDnumbereditemsandenterthetotalinBox2. Box1 even numbered items

Box2 odd numbered items

MIPublic Stigma

Selfstigma

ThetotalinBox1representsyourtendencytostigmatizepersonswithmentalillness. ScoresinBox1thataregreater than 32suggestyoustigmatizementalillnessandare likelytoblamepersonswithmentalillnessfortheirproblemsanddisabilities.Ifyouare anMIstigmatizer,makesureyoureadChapter3tolearnwaystochangeyourattitudes andbehaviorstowardspersonswithmentalillness. ThetotalinBox2representsyourtendencyforself-stigma,orhowtoughyouwillbeon yourselfbecauseofyourmentalillness.ScoresinBox2thataregreater than 32suggest youself-stigmatizeandthatyoubeatyourselfupbecauseyouhaveamentalillness. Moreover,if the score in Box 2 is greater than the score in Box 1,youstigmatizeyourself MOREthanyoustigmatizeothersbecauseofmentalillness.Ineithercase,pleaseread theremainderofChapter4forwaystodealwithself-stigma.

Figure 4.1 (Continued)

Section A, or are unaware of their diagnosis or disabilities, then they probably are not bothered by self-stigma. Section B of the self-test provides two scores. The Mental Illness (MI) Stigma score represents how much the person stigmatizes others with mental illness. People are asked to self-administer the 16 items of Section B using the fivepoint agreement scale (5 ¼ highly agree). Scores are then summed: all of the odd items are added together to yield an MI Public Stigma Score. High scores on this scale (greater than 32) suggest the participant may be prejudiced against mental illness and are likely to discriminate against persons with psychiatric disability. They might benefit from anti-stigma interventions for public stigma (see Chapter 3). All even items are added together to yield a self-stigma score. This score indicates the degree to which the person turns stigma against himor herself and internalize negative statements about mental illness. High scores on this scale (greater than 32) mean the person beats him- or herself up with self-stigma. They may need to learn alternative ways to handle stigmatizing

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self-statements before they become overwhelming. The strategies in the rest of this chapter are to handle these kinds of self-statements.

Ways to cope and overcome self-stigma Research has shown that just because there are negative stereotypes about certain groups does not mean people from these groups necessarily agree with them or apply them to themselves. The public’s stigmatizing attitudes are still hurtful and demoralizing, but these people do not internalize them. For example, some individuals may develop a positive identity through their interactions with peers from the stigmatized group and as a result develop more positive self-images, particularly when they experience positive group support and help one another view stigma as not legitimate. I always felt that I was rotten and had to hide. I felt like this for years. It was not until I started to go to self-help groups that I came to feel that I am OK. That I am a person just like everyone else. People respected me there for who I was.

There is more appreciation for the internal strengths and effective strategies consumers develop and use to protect from turning stigma onto themselves. So far this chapter has focused on defining self-stigma, exploring its determinants and mechanisms as well as its unfortunate, painful, and crippling consequences. The remainder of this chapter will focus on a more optimistic aspect of self-stigma: strategies that have been found effective in helping people cope with it and minimizing its negative impact on his or her life. These strategies include employing cognitive behavioral strategies, disclosing mental illness, becoming the protagonist of one’s constructed narrative, and fostering personal empowerment.

Employing cognitive behavioral strategies Cognitive behavioral therapy (CBT) has been shown to be an effective strategy for helping people change cognitive schemas that lead to anxiety and depression. Although some readers might be concerned that people with serious psychiatric disorders are unable to benefit from CBT, British clinicians have documented its benefits for psychotic disorders (Kingdon & Turkington, 1994; Tarrier, Wells, & Haddock, 2000). This approach targets distressing psychotic symptoms and maladaptive understandings of mental

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illness using a collaborative empirical framework. The therapist helps the client explore his or her distressing and often delusional cognitions, attempting to reframe them as beliefs rather than facts, empathically discussing how one might arrive at such beliefs (but also recognizing their emotional costs), reviewing evidence for and against the beliefs, and trying to find less distressing alternative interpretations. The main target of this approach is what is called cognitive schema, an internal representation of the world which, on the one hand, helps organize and interpret it, but on the other, contributes to stereotypes, making it difficult to retain new information that does not conform to the established schemas. Recent developments in CBT suggest that self-stigma may result from a maladaptive cognitive schema which develops largely as a result of socialization. Thus, people often experience a range of negative feelings that are disproportionate to a situation and thereby considered “irrational.” A widely used technique to do just that is called “cognitive restructuring,” which typically follows six steps, as summarized in Figure 4.2. This figure can be photocopied and used as a worksheet. First, the person identifies a distressful feeling (sadness, anxiety, despair), the thought that accompanied the feeling, and the core belief related to that thought. For example, a person identifies a distressful feeling of anger. A common thought accompanied with this feeling could be, “I’m being treated unfairly.” Another example of this is a feeling of sadness or depression. A common thought accompanied with this feeling could be, “things are bad and they won’t get better.” Second, the person considers the evidence for the thought in a balanced way as if he or she were a scientist or a jury trying to come to a verdict. Consider the following thought: “I’m nothing but a failure and my life is just a continuous downhill.” He or she could proceed to look for evidence disproving this thought: “The fact is that I moved into an independent apartment, made two friends, and am trying to find work. The evidence does not support that I’m a failure.” Third, sometimes it is easier to evaluate a thought in a more balanced and accurate manner when one distances oneself from it a little. It often helps to consider how a friend would look at the situation. Alternatively, the person might consider how he or she would view a friend with a similar issue. For example: I would say “stop being so self-critical and beating yourself up! I know it has not always been easy, but you have come a long way, and with your strong will things are likely to get even better.”

Fourth, a person could try coming up with different words in order to describe themselves or the situation. For example,

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Step 1: distinguish between thoughts and feelings – identify the thought Thought: .................................................................................................................... Feelings: .................................................................................................................... Step 2: Examine the evidence for the thought. Evidence for the thought: .................................................................................................................... ........................................................................................................................................ Step 3: Describe how you would look at the situation if a friend shared that thought with you. Description: .................................................................................................................... ........................................................................................................................................ Step 4: Try to come up with different words to describe yourself or the situation. Think of words that are more accurate and less judgmental. Different Words: .................................................................................................................... ........................................................................................................................................ Step 5: Think of what the advantages and disadvantages are of the way you are thinking. Advantages: .................................................................................................................... ........................................................................................................................................ Disadvantages: .................................................................................................................... ........................................................................................................................................ Step 6: Take action by preparing a specific, detailed written plan that can be followed up A plan: .................................................................................................................... ........................................................................................................................................ Figure 4.2 The steps to challenging an “irrational” self-stigmatizing idea.

I’m not a failure nor is my life just getting worse. It would be more accurate to say that in some things I have succeeded while in others I didn’t, and that there were times that things got better and other times they got worse, but this is true for most people.

Fifth, a person could explore the advantages and disadvantages of selfstigmatizing thought. For example the advantages of this thought may be:

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Thinking this way reduces my anxiety, because if it is known that I am a failure I get an exemption from trying and I avoid possible disappointments.

Alternative disadvantages may include: Thinking this way makes me feel that there is no sense trying since things will only get worse anyway, and so I end up not even trying or doing anything at all and make no progress towards my goals and end up discouraged and depressed.

Lastly, a person could put thought into action by preparing a specific, detailed, written plan that can be followed up. For example, the client weighs the evidence that supports and opposes his belief that “I’m nothing but a failure and my life is just a continuous downhill.” Though he still reports feeling like a failure, he also recognizes that there may not be as much evidence as he thought to support the self-stigma. In addition, he realizes that while protecting himself from potential disappointments by reducing his hope to zero holds some advantages, he is less confident this is a good way to go, as he comes to acknowledge how passive and depressed this makes him. Not without ambivalence, he decides to “give this a chance” and prepares a table to track his thoughts that generate negative emotions and evaluate their evidence. A helpful addition to the cognitive restructuring can be efforts to collect evidence to test the degree to which one’s beliefs are balanced and/or accurate. (1) One way people can check out whether the irrational belief is true is by surveying friends, co-workers, and others. They could literally poll people: “Do you think I can’t have a romantic relationship because I have a mental illness?” People should carefully consider whom to include in this survey, asking people who are likely to be supportive, not individuals who might say mean things in retaliation. I think people in my book group are reasonable people. I’ll ask them. No point trying this at work. Those guys wouldn’t take it seriously. They would all ridicule me.

(2) People often have personal mentors; individuals they believe have got things figured out in life. These might be their pastors, an older brother, a wise friend, or a quiet co-worker. Asking these people can be an especially powerful way to challenge irrational beliefs. (3) Finally, irrational beliefs can be challenged by directly testing them. For example, Amy thought she, like most people with a mental illness, was weird-looking. To test this she showed pictures of five acquaintances, two with mental illness and three without, to a group of co-workers, asking them to pick out the “weird-looking people with

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mental illness.” They couldn’t do it, which helped to challenge the self-stigma that “I must be weird-looking because I’m mentally ill.” Despite the effectiveness of these strategies it is usually hard to get rid of self-stigma altogether since the undermining and irrational thoughts are often stubborn. Hence, it is often helpful to develop counters. These are comebacks to the irrational beliefs that keep them in check. Some examples are: . . .

I’m not bad because I misfiled that chart. It was a mistake like most people make. I don’t have a weak personality because I was late for an appointment. Everyone is late once in a while. I am not out of control. Everyone gets angry once in a while.

This kind of talking back to irrational beliefs provides control. It normalizes the event instead of letting it spiral into the kind of irrational and hurtful feelings that torment people. People frequently write the counters down on a small card and keep it in their wallet. Then, they can pull out the card when they are beating themselves up with self-stigma and remind themselves that the stigma is false. People don’t look at me and say I look weird because I have a mental illness. Most people do not even know my history with mental illness.

Reducing self-stigma via disclosure Deciding to disclose one’s personal experiences with mental illness is not an easy decision. There are both advantages and disadvantages for people who decide to disclose their mental illness. There is a variety of reasons why a person might decide to disclose or conceal his or her experience with mental illness. These could be considered costs (reasons why they may regret disclosing) and benefits (reasons why disclosure will help them). Several of these are summarized in Table 4.1. Let us consider the benefits first. These are the reasons why letting other people know about one’s psychiatric disabilities might be experienced as helpful.

The advantages of disclosing One advantage of disclosure is that one no longer needs to worry about their secret getting out. People often fear that when others find out, they will disapprove or humiliate them. A pleasant benefit of disclosure might be the

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The costs and benefits of coming out of the closet.

Benefits The person does not have to worry about hiding their mental illness The person can be more open about their day-to-day affairs Others may express approval Others may have similar experiences The person may find someone who can help them in the future The person is promoting their sense of personal power The person is living testimony against stigma

Costs Others may disapprove of their mental illness or their disclosure Others may gossip about them Others may exclude them from social gatherings Others may exclude them from work, housing and other opportunities The person may worry more about what people are thinking of them The person may worry that others will pity them Future relapses may be more stressful because everyone will be watching Family members and others may be angry they disclosed

contrary, receiving approval and support from others. Most people are coping with some kind of personal trial or tribulation, even if it is not mental illness. They may be impressed and supported by the person’s ability to cope and respect you for it. The person who decides to disclose may be pleasantly surprised to find out that others have similar problems. Frequently, people discover that when they admit to psychiatric problems, others respond “me too.” This may help to build friendships with those who have similar problems. These friends can then be available to help them in the future. Betty told me she gets depressed sometimes, too. That really helped. Next time I was feeling a little sad at work, I dropped by Betty’s desk and we talked. She was able to say the kind of things that would get me through the day.

People often describe how disclosing their experiences with mental illness is the first step to finding an entire support network of people dealing with similar issues. Self-help groups provide a place where people can let their secrets out. They are places where people with mental illness can be with kindred spirits, not worry about disclosure, and get support. Alternatively, finding a small group of friends who know their problems can be equally liberating.

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Keeping a secret about mental illness fosters a feeling of shame. For a person to tell their story often promotes a sense of personal power which is the opposite of being victimized by shame. I was surprised when I told the book group about my experiences with manic depression. I didn’t feel like a meek lamb any more. I had something to say, I looked them in the eyes, and I said it.

This sense of power over one’s life is a major step towards dealing with stigma. Finally, when a person tells his or her secret it often challenges many of the stigmatizing attitudes others have about mental illness. The person becomes living testimony against many of the said and unsaid myths about psychiatric disability! It was such an education working next to Jim. I thought mental patients were all dangerous and could never work. Jim was the best employee in the shop and one of the biggest gentlemen a guy could meet.

The costs of disclosing Although there are several benefits to disclosure, one needs to consider the costs as well. These are the reasons why people currently are not telling others about their experience. They are also reviewed in Table 4.1. One major group of reasons why people may not disclose is the repercussions from others. Some people may disapprove of them telling their experiences. They fear mental illness or are offended by people that have been hospitalized. Others may resent people for asserting their right to tell. I’m sick and tired of all these oppressed people whining. Blacks, Latinos, guys in wheel chairs and now Sid because he’s mentally ill. Why do I have to bleed for all these other guys?

Co-workers might start talking about the person who decided to disclose. Gossip is the bane of offices and neighborhoods. Others may shun the person at social gatherings when they hear the story. They may have ignorant views about people with mental illness being dangerous and want to protect themselves. Some people may actually exclude the person with mental illness who decided to disclose from work or housing opportunities. A supervisor might keep them from a good job because of hostility; “I’m not having that crazy on my squad.” Or the supervisor might become overly protective; “I was going to promote him to the day shift but I don’t think he can handle it.”

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Weighing the costs and benefits of disclosing At the end of the day, it is the consumer who judges what the various costs and benefits mean for their decision about disclosure. The Cost and Benefits Worksheet in Figure 4.3 is provided as a way to help a person make this decision. The worksheet has two columns. Benefits for disclosure are listed on the left side and costs on the right. Remember, benefits are the reasons why a person would want to disclose. The person should ask him or herself, “How will letting other people know about my mental illness help me?” Costs are the disadvantages to disclosing experiences with mental illness: “How will talking to others about my experiences hurt?” Some people like to carefully consider all the benefits first, listing as many as they can think of. They

Setting: ............................................................................................. Benefits

Costs

Short term

Long term

• Don’t censor any ideas. Write them all down. • Put a star (*) next to costs and benefits you think are especially important. Given these costs and benefits: I have decided to disclose my mental illness I have decided NOT to disclose my mental illness I have decided to put off my decision

Figure 4.3 A blank sheet for deciding to come out.

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then write down the costs. Others just start writing down costs and benefits as they come to mind until they have them all listed.

Two tips for deciding about disclosure We propose two tips (summarized below) to guide any final consideration of strategies for disclosing mental illness. The first suggests caution. To paraphrase a Supreme Court judge, “It is impossible to quiet the sounded bell.” Once a person has disclosed, it is near impossible to retract the news. According to the Rule of Minimal Risks with Little Information, disclosing and then recanting is much harder than being conservative and letting people know slowly. I told some people at the club about my manic depression. And then that guy murdered a bunch of people when he was psychotic. Now, all my buddies are looking at me suspiciously.

This woman would not be in her predicament if she had waited to tell. Rule 1 counsels caution in disclosing such private information. Tip 1: Minimal risks with little information Those with no information, pose no risks. Hence, when not certain, don’t tell. Tip 2: Delayed decision is lost opportunity When putting off tough decisions until later, benefits are lost now. Hence, when looking for support, take a chance. Tip 2 suggests caution may lead to unnecessary delay. There will always be hostile and ignorant people who will chastise others from talking about their mental illness. To think, all this time I was afraid of telling my Bible group that I was hospitalized for schizophrenia. They were amazingly supportive. I’m glad I finally got it out because now we’re much closer.

Although these tips represent wise advice to guide this tough decision, they obviously contradict each other. That’s because there is no clear answer to the question about disclosure. Only people with the decision can weigh what is appropriate in the moment. They must weigh all the costs and benefits and decide for themselves what to do.

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Becoming the protagonist of your self-constructed narrative Coping with one’s disorder is often employed as a reaction to a stressor. Coping also manifests itself through actively making meaning of events and seeing oneself as an active agent (Roe, Yanos & Lysaker, 2006). There is empirical support that people with mental illness can deliberately choose to construct identities alternate to a “patient” identity, and that this process has important implications for recovery (Yanos, Roe & Lysaker, 2010). Many people actively negotiate the personal and social meaning of their illness, as part of the process of constructing alternate identities that replace previously held “patient” identities. For some individuals, achieving mastery in the process of constructing and negotiating meanings may be a major part of their recovery from self-stigma. In the past, every time I got back to the hospital I felt like it was proof that I am a failure, you know that I can never get better. It is not like I came to like it or something (laughs), it still does not make me feel good about myself. But I know it is not the end. That I will bounce back.

This process not only includes “change” in appraisal of a stressor, challenging and irrational beliefs as illustrated in the earlier section, but also experiencing and perceiving oneself differently. For example, a person may generate an internal dialogue that redefines how he or she feels about disappointments derived from the illness, which influences how strongly such setbacks impact perceptions of self and the subsequent self-stigma. A new, group-based intervention to decrease self-stigma among people with serious mental illness (Yanos, Roe & Lysaker, 2010), titled Narrative Enhancement/Cognitive Therapy (NECT), emphasizes the role of narration. NECT combines psycho-education to help replace myths about mental illness with empirical findings, cognitive restructuring geared towards teaching coping skills to challenge negative beliefs about the self, and recovery-oriented narrative principles. NECT attempts to help people not only challenge stereotypical images they may have internalized but also support their journey of selfdefinition, as they begin to recover from their “patient identity.” NECT, thus, aims to help participants gain a sense of “who I am,” beyond the illness which is essential to taking steps towards achieving personally desired goals. It is difficult to form relationships or find and keep a job without having a sense of “who I am.” Through exercising storytelling within an interpersonal context, participants are offered an opportunity to realize that they can construct consensually valid stories, and then to evolve that story in a way in which a rich life is possible within the confines of reality. Relevant exercises are included in Figure 4.4.

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Exercise 1: Write a story about yourself. The story can be about an event from your past or a more recent happenstance. It can be about one single moment or be about a period of time, perhaps several years of your life. You could tell a story about a single incident in high school, for instance or tell a story about yourself across all the years you went to high school. It could be about a happy event, maybe something you achieved, or a sad event, such as the death of someone you loved. But it should be a STORY about YOU. You may talk about other people as you tell your story but it is important to focus on yourself, the person who is seeing and describing events. You should make sure and talk about your perceptions, opinions and emotions. .............................................................................................................................................. .............................................................................................................................................. .............................................................................................................................................. .............................................................................................................................................. .............................................................................................................................................. .............................................................................................................................................. Exercise 2: One way experiences with the story can be enhanced is by sharing them with peers. In the process, consider these questions about your peer’s story. 1. What do you think the story tells about the person telling it? .............................................................................................................................................. .............................................................................................................................................. 2. What stands out for you about the story you just heard? .............................................................................................................................................. .............................................................................................................................................. 3. Is the person telling the story trying to cope with something and if so what do you think it is? .............................................................................................................................................. .............................................................................................................................................. 4. If the person telling the story is trying to cope with something how do you think he or she trying to do that? .............................................................................................................................................. .............................................................................................................................................. 5. Has something changed in the person telling the story’s life and if so what do you think it is? .............................................................................................................................................. .............................................................................................................................................. 6. Is there something the narrator is hoping for and if so what do you think it is? .............................................................................................................................................. .............................................................................................................................................. 7. Is there something the narrator is trying to do and if so what do you think it is? .............................................................................................................................................. .............................................................................................................................................. Figure 4.4

Narrative exercise to address self-stigma.

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In Exercise 1, participants are invited to share their stories. Those whose stories are dominated by being controlled by external events and describe themselves primarily as being acted upon are encouraged to consider whether they took any active role in these events. So for example, participants might share stories in which they are passive like the following: My employment specialist found me a job.

Or: My ACT team got me a place to live.

In such cases, the group facilitator will encourage those telling these stories to consider whether they have displayed intentions, efforts, or actions or have acted upon theirenvironment to influence the situation rather than merely be passively acted upon. This can be difficult for some participants, but the goal of the group is to provide opportunities to search, consider, notice, and think of themselves as active agents. No less important is to provide the opportunity not only to think but also to experience oneself as such, integrating this aspect of self into the stories. It is hoped the narratives will become more rich and complex and the person telling them more active narrators who can use this position (as narrator) to take a more active stand in their recovery. The two previous one sentence stories were characterized by passivity and lack of agency. Compare this story of guilt and shame: I was the first in my entire family to go to college. I was a great source of pride, in particular for my grandfather. When I got sick I had to leave college. My grandfather was so disappointed. He died shortly after. He died angry.

Group feedback (as laid out in Exercise 2) can help the narrative process. It has several notable advantages for participants to gain feedback and support from peers and opportunities for interactions with an audience (Lysaker et al., 2007). The approach stresses that there is generally no single story which is the “correct” one. Stories can be seen from many perspectives, and healthy or adaptive stories are the ones that change over time as the narrator gains life experience (and thus has the opportunity to negotiate, edit, and rewrite the story). The process of constructing and telling stories holds many potentially valuable advantages. The group’s feedback may offer the young woman whose grandfather died an opportunity to explore her reactions; perhaps her sense of shame for “dropping out of school” and guilt for “being responsible for the disappointment and death of her grandfather.” She can gain a sense and wonder whether her “story” is helping her cope. In response to the group’s curiosity, caring, and support, she may consider alternative and more flexible stories, in which she is not hostage in the “to be blamed and justifiably punished” role.

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Consider this young man’s story: I was working as a bell boy at a hotel. There was a young woman who worked with me. I had a crush on her and felt that she had feelings towards me as well. We got close and shared a lot of things. I told her I was mentally ill and all that. When I told my psychiatrist he said that I should never tell a woman that I have a mental illness until the wedding night, when she can no longer change her mind.

This young man, courtesy of his psychiatrist, had internalized that the meaning and implications of having a mental illness are so profound that, having a choice, a friend would prefer to discontinue the relationship. Perceiving and responding to the group’s feedback can provide opportunities to explore his own voice rather than blindly adapt to that of his psychiatrist, and explore whether, what, and when he wanted to share with others. The group facilitator stresses that there is no single or “correct” way to describe an event and that people can have different stories depending on who they are telling them to. So, in response to the examples presented earlier, the facilitator does not pretend to know why the young woman’s grandfather died or what would have happened if the person who worked as a bell boy would have hidden his mental illness. Educating participants about there being no “correct story” enhances flexibility, which can help participants consider alternative stories. NECT also emphasizes that the stories people tell can help them decide how to reject stigma and feel more connected to other people. Sorting out the story and adapting richer and less rigid narratives can offer different options of actions from which one might choose from. Finally, it is highlighted that each person creates his or her own story, that stories have many parts, and that some of them may be expected to change over time. Narrating stories provides an opportunity to discover and/or reconnect with one self as a narrator, an active agent authoring a new story. The process of authoring the story in turn helps to consolidate and integrate a sense of self, independent of the illness and thus reduce self-stigma. In this way, disempowered narratives, in which themes dominated by internalized stigma prevail, can be gradually reframed and revised so that themes of agency, potential, and personal strength can come to predominate.

Fostering personal empowerment People who have a sense of power over their illness and, more importantly, a feeling of control over their lives, are less likely to be victimized by stigma. Even though they may be aware that this kind of prejudice and discrimination

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continue, empowered individuals are more able to avoid the sting of other’s ignorance. They are better able to avoid turning this kind of prejudice against themselves in the form of self-stigma, as discussed in the previous section. Personal empowerment is the opposite of self-stigma. Hence, discovering and pursuing ways to improve a personal sense of empowerment helps to prevent the harm caused by stigma. In the remains of this chapter we review six ways to foster empowerment. First, however, we discuss what is meant by the term; what is personal empowerment? A review of the definition is followed by a thorough consideration of empowerment in its various forms. Strategies for facilitating empowerment follow. First, though, a Personal Empowerment Self-Assessment Scale is provided to help interested readers assess their level of empowerment. In this way, readers can learn about empowerment by determining where they fall on different facets of the construct.

Assessing personal empowerment Readers who, after reading this section of the chapter, might be interested in assessing their level of empowerment, can do so by completing the Personal Empowerment Self-Assessment Scale in Figure 4.5. Interested readers can answer the questions in the scale to determine whether they beat themselves up with stigma or whether they have some sense of personal empowerment. Alternatively, readers might share this test with peers who have questions about their level of empowerment. The key for the test as well as the interpretation guidelines can be found at the bottom of the page. The program participant should complete the test using the five-point agreement scale before reviewing the key. The Self-Assessment scale provides two scores for people who complete the test. The sum of even items is entered in Box 1, odd items in Box 2. These scores represent the two ways in which empowerment impacts the person with mental illness; although a brief distinction is provided here, these different ways are discussedmorethoroughlybelow.Empowermentcanaffectone’sself.Peoplewho feel empowered have good self-esteem, believe they are effective in life, and are optimisticabouttheirfuture.Lowscoresonthisscale(below8)suggesttheperson does not feel empowered about him- or herself. This person may benefit from the strategies that foster empowerment reviewed later in this chapter. Alternatively, empowerment can affect a person’s view of his or her community. Empowered people may show righteous anger against prejudice and actually participate in civil actions that target public stigma in their area. Low scores on this scale

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Ratehowmuchyouagreewiththefollowingstatementsusingthisscale. strongly disagree

disagree

neitheragree nordisagree

agree

strongly agree

1

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...........1.Iamabletoaccomplishmypersonalgoals. ...........2.Iwanttochangemycommunity’sviewofmentalillness. ...........3.Ihavecontrolovermytreatment. ...........4.Itisokayformetogetmadatpeoplewhostigmatizementalillness. ...........5.Iamnotabadpersonbecauseofmentalillness. ...........6.Wecanbeatstigmaifweworktogether. ...........7.Thingswillworkoutinmyfuture. ...........8.I’mgoingtomakewavesaboutstigma. ...........9.IamokayevenifIhaveamentalillness. ...........10.IgetmadatthewaymentalillnessisportrayedonTV.

Scoring: AddupthescoresofalltheEVENnumbereditemsandenterthetotalinBox1below. Thenaddupall theODDnumbereditemsandenterthetotalinBox2. Box1 even numbered items Empowerment andone’sself

Box2 odd numbered items Empowermentand one’scommunity

ThetotalinBox1representsviewsaboutempowermenttowardsyourself:self-esteem, future optimism,andself-effectiveness.ScoresinBox1thatare less than 8suggestyou donothavemuchempowermenttowardsyourself.Inthiscase,youwillbenefitfrom manyofthesuggestionstoimproveempowermentlistedinthischapter. ThetotalinBox2representsviewsaboutempowermenttowardsyourcommunity: righteousangerandwillingnesstotakeaction.ScoresinBox2thatareless than 8 suggestyouareunsureaboutchallengingyourcommunityanditsstigmatizingways. Youwillbenefitfromtheempowermentstrategiesreviewedinthischapteraswellas theanti-stigmaapproachessummarizedinChapter3.

Figure 4.5 Personal empowerment self-assessment scale. (This self-assessment evolved from a measure developed by Sally Rogers, Judy Chamberlin, and colleagues published in Psychiatric Services in 1997.)

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(below 8) mean the person is intimidated by public stigma and does little to counter it. Personal empowerment strategies summarized in this chapter as well as anti-stigma approaches in Chapters 3 and 5 may all be of help to this person.

Empowerment and one’s sense of self People who have a strong sense of personal empowerment have good selfesteem. Their personal narratives are not of passive victims of their illness, but instead more like active agents, protagonists of their stories. They view themselves positively; self-statements include beliefs that they are dependable individuals whose identity and sense of self is not limited to having a mental illness. I am a good person. Sure, I might have a mental illness, but I’m also a son, a brother, a husband, a friend and a lover, a student, a co-worker, and a member of a church congregation. These roles help me feel like a valuable person who has much to offer.

Empowered people are able to reject negative self-statements about themselves. Perhaps most importantly, empowered people recognize their positive attributes rather than obsessing over their flaws. They can affirm why they are a valuable person in the world. Sure, they recognize the occasional errors that haunt us all, but they simultaneously value their role in the world. People with a sense of personal power have confidence in their ability to be successful. Psychologists call this self-efficacy. Many people with mental illness believe they can competently attain their goals and deal with problems in the future. I used to think that because I have a mental illness I couldn’t handle real work. Why bother trying out for the good job? I’m not up to an employer’s demands. But now I realize that, like everyone else, I have a mix of strengths and weaknesses. I can call on these strengths to help me excel at my new job as a billing clerk.

This kind of perspective helps people gain control over their future. Rather than being victim to their disabilities, they are able to make decisions about how to identify, define, and attain personally valued goals. Empowered people experience themselves as worthy and able to define their own experience and needs. Many benefit from the input of service providers. Benefiting from professional help and expert opinion, however, is not meant to replace self-exploration and what the person defines as his or her needs.

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Spirituality, for example, often helps people in their search for meaning and purpose and contributes to the development of their inner sense of strength, peace, worth, and value. Sally Clay, a pioneer of the consumer movement, has long described how the lack of sensitivity to the spiritual dimensions of her experience hindered her recovery efforts. Empowered people do not let their spiritual experiences be denied or spiritual journeys be impeded by service systems. Practitioners can support this by appreciating the potential importance of spirituality in personal growth, recovery, and wellness, and encourage consumers to engage in religious and spiritual practices consistent with their beliefs. People who are self-empowered are optimistic. Instead of being overwhelmed by their symptoms, an occasional coercive treatment system, and stigmatizing society, they believe they will be successful. Those readers who have not experienced the loss of hope fostered by a paternalistic treatment system or hurtful stigmatizing comments by others may not realize how important regaining optimism and control over one’s future can be. My doctors always meant well. But they robbed me of control over my life. They said I wouldn’t get married, I can’t live on my own, I’d never handle a job, forget about earning real money. I felt like a spectator watching my life go by and it was a horrendous feeling. Now I have a different outlook. I can accomplish my goals. And the return of personal power has made me super human.

Self-empowerment does not mean hiding from one’s disabilities. People with optimism and a sense of control over their life do not deny they have suffered psychiatric symptoms in the past. Nor are they necessarily sure they will never experience them in the future. Instead, these people replace being overwhelmed by symptoms with a peaceful acceptance of their disability. This kind of acceptance does not imply that empowered people do not wish they had never had their symptoms in the first place, or do not feel pain about subsequent losses, but rather that they have successfully found a way to make sense and live with this experience in a relatively peaceful and comfortable manner, without it robbing them of the universal human need for hope and meaning. Having a psychiatric disability is who I am just like being female, black, or lefthanded. There are disadvantages to these other qualities, too. My second grade teacher used to punish me when I picked up my pen with the wrong hand. My life would probably have been easier if I did not have a mental illness, but I do not dwell over this any more. I focus on trying to do the best I can with my set of cards and am proud about all I have done.

Self-empowered people do not let the fact they may have experienced symptoms and had subsequent problems prevent them from recognizing they

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are first and foremost a valued person. One’s sense of self comprises various experiences, role-taking activities, accomplishments, aspirations, and dreams. Self-empowerment and positive self-esteem represent the appreciation of the breadth and depth of all of these combined.

Empowerment and one’s community People with a sense of personal empowerment are not overwhelmed by a sometimes hostile society. Rather, they are confident that they can fight the ignorance of their community and beat the stigma. “Other groups have done it. The civil rights actions of the 50s and 60s turned around attitudes about race. We can do the same thing with mental illness.” People who are empowered often feel righteous anger; anger towards the disrespectful images of people with mental illness on TV and in magazines, towards property owners and employers who will not hire them because they have been hospitalized, and towards mental health professionals who said they would never get beyond the walls of an institution. These people have given up their sense of powerlessness in the face of an oppressive majority. In its place, they face the stigmatizing ways in which society responds to people with mental illness. While empowered people often experience righteous anger, they are not overcome by the emotion. Instead, they are able to channel their anger constructively into activities that diminish stigma and further opportunities. Empowered people may affect change by becoming active in anti-stigma programs that protest hurtful images of mental illness, by joining mutual help programs that foster empowerment among peers, or by earning the appropriate credentials and trying to change the mental health system from within, as a provider. Each of these ways that facilitate empowerment is more fully discussed below. The point here is that righteous anger can energize people in constructive ways so they take control of their life and generate positive change into their personal life and community, rather than be victimized by stigma and discrimination. Just because people have power over their lives does not mean they are experts in everything. Just because people with mental illness regain a sense of hope and self-esteem does not mean they no longer need the assistance of peers or the mental health system. This point can seem paradoxical for some pursuing personal empowerment. It used to mix me up. I thought that if I was doing so well, feeling so good, and bringing about so much positive change, I didn’t need the mental health system. But then I got depressed again. I found my doctor’s help to still be important. How could this be? I shouldn’t need anyone if I’m truly empowered.

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It is the nature of the human condition that we all rely on each other, whether we are challenged by disability or not. Empowerment helps the person regain control over his or her life. But, it reminds people that this life is lived within a social world with others for whom we provide care and on whom we rely in times of need.

Six ways to foster empowerment Empowerment can be construed narrowly in terms of control over the services that help people deal with their disabilities. It can also be understood more broadly as command over all spheres of one’s life; not just problems related to mental illness but succeeding at work, in relationships, during play, spiritually, and in as many other domains as possible. Table 4.2 lists six strategies that facilitate empowerment. Note that this section is somewhat different from most other chapters in the book. Elsewhere, we discuss what the person might do to deal with stigma, how they might personally beat its negative impact. While there is some discussion of individual activities that foster empowerment, the focus in this chapter is more on expectations. What should individuals expect from a service system that fosters their personal empowerment? These serve as benchmarks by which a person can judge an individual program. Does service system X endorse the kind of philosophy and provide the kind of tools that foster a person’s empowerment? A service system is broadly defined here not only to include professional services (from mental health centers, for example) but also support and mutual help from peers.

1. From noncompliance to collaboration Historically, the patriarchal relationship between service providers and users dominated medical services in general and psychiatric services in particular. Within this relationship the carer was perceived as the expert who knows and offers the absolute truths about what is wrong and what should be done, and the role of the service user was limited to passively complying with the authoritarian provider. Consumers’ failure to comply was indicative of unconscious motivations to resist health. Mandatory treatments and a coercive system rested on these assumptions. Research evidence seemed to support these concerns. Depending on the study, anywhere between two-thirds and three-quarters of consumers did not take their psychiatric medications as

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The six ways to foster empowerment.

1. From noncompliance to collaboration 2. Consumer satisfaction and other input on services

3. Psychosocial clubhouses

4. Assertive community treatment and supported employment

5. Consumers as providers

6. Self-help, mutual assistance, and other consumer operated services

A change in perspective from expecting consumers to blindly comply with treatment to making care plans that are user-friendly At the absolute minimum, programs that empower participants need to be satisfactory to those participants. Moreover, these programs need to obtain input from consumers to ensure that program design reflects their interests For more than three decades, the mental health system has supported treatment programs that were largely operated by persons with mental illness. Clubhouses are excellent examples Instead of the consumer going to the professional, the best treatment occurs when the providers travel to the consumer, and all the places in which consumers need assistance. Provision of services in the person’s home or community is the hallmark of Assertive Community Treatment (or ACT). Services in real-world job sites are supported employment Many persons with mental illness are deciding to return to school, obtain necessary credentials, and assume jobs in the mental health system as providers. In this way, they can change the system from the inside There is almost a 50-year history of programs developed by persons with mental illness to help peers. These programs provide places where people can receive help from individuals with similar concerns

prescribed. The randomized clinical antipsychotic trials for intervention effectiveness study (CATIE) recently reported (Lieberman et al., 2005) that 74 percent of those who were prescribed medication discontinued within 18 months. In addition, more than half of all participants in rehabilitation and similar psychosocial programs did not complete the treatment plan as agreed. On the one hand, these findings may suggest that providers must take the role of the “responsible adult” and help the client (even if in a paternalistic manner) make “correct” decisions and adhere to treatment. An alternative interpretation of these findings, however, may yield completely different conclusions. Rather than 66 to 75 percent of people taking their medication

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incorrectly, perhaps two-thirds to three-quarters of all mental health providers are prescribing drugs poorly! Support for this possibility comes from a wellknown and widely cited study, often referred to as the PORT (the Psychiatric Outcome Research Team), which reported that less than a third of people with serious mental illness received appropriate doses of antipsychotic medication (Lehman et al., 2004). Equally sobering statistics suggest that more than 70 percent of people in the general population prescribed any kind of medicine do not take it the way the doctor prescribed. Failing to adhere is not solely a problem of people with mental illness, nor does it necessarily imply that poor adherence is the result of the person being “bad” or “irresponsible” (which can in turn be used to justify coercive and paternalistic approaches). Rather than expecting people to passively comply with care (be it psychiatric care or general medical treatment), what is needed is a more enlightened approach that calls for collaboration between providers and consumers. An equal partnership occurs when each party learns from the other. Providers learn about the nature of specific symptoms and corresponding disabilities from the person challenged by these problems; consumers learn the range of treatments and services that address these problems. I’ve been struggling with my mental illness for 15 years now and it’s amazing how the relationship has changed with my doc. When we first met, he’d listen for about five minutes to my symptoms, then wrote down a script and sent me on my way. I wouldn’t dare ask questions about what he was thinking. I now have lots of questions and ask them all! Should I be eating this food? Should I be sleeping more? Taking pills less? And I also have lots of opinions. I told Dr. Mulhoney that I didn’t like the side-effects of the new pill he recommended and decided to stop taking it. We’re much more like partners now. And that wasn’t easy for either of us. He had to learn that my view of the illness was just as important – no, more important because I live with the symptoms everyday – as his. And I had to learn to speak up for myself, to tell him when things were working and when they weren’t. I made my own decisions and take responsibility for them.

Shared decision making How do providers and consumers foster a collaborative working relationship? In recent years there is a growing emphasis on Shared Decision Making (SDM), an interactive process where both user and carer collaborate to decide on a plan that best fits the service user’s health care needs, values, and preferences. SDM is based on a dialog between provider and consumer in which different care options, adverse effects, and risks and benefits are discussed (Adams & Drake, 2006). Efforts to introduce and adapt SDM to the care of people with serious mental illnesses are relatively novel. Traditional mental health providers need to move beyond paternalistic approaches

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to treatment and offer decision aids and supports that help people with mental illnesses choose among options in accordance with their preferences. The few existing studies have found that consumers with moderate and severe depression wanted more information and to share decisions about their health (Loh et al., 2007). Similarly, people with serious mental illness expressed interest and preference to be involved in decisions about their care, particularly those related to the use of medication (Adams, Drake & Wolford, 2007; Hamann et al., 2005). Finally, studies have shown that people with serious mental illness can participate actively in their own care and make judicious decisions when needed (Becker & Drake, 2001). Figure 4.6a offers a blank worksheet which users and carers might avail to facilitate shared decision making. The top of the sheet provides a place for name of the person with mental illness and relevant carers. These might be service providers such as a case manager or psychiatrist, or include relevant family members. The activities and results of shared decision making vary, depending on the goal. Decisions about taking one’s psychiatric medication are likely to involve different choices and considerations from whether the person should participate in a supported employment program. Hence, one worksheet may be needed for each goal tackled by shared decision making. In psychiatry, goals are often construed as resolving problems. The person is harmed by psychiatric symptoms or wants to stop fighting with family members. In both cases, goals aim to decrease or stop the problem; the person wants their depression to end. In a more positive light, goals are framed as aspirations or life direction; the person wants to get back to work. Sometimes, making sense of goals and decisions requires more information. For example, switching to a new medication often needs additional knowledge about side-effects and symptoms. In deciding about employment, more information may be wanted about the person’s vocational interests and what returning to work will do to his or her entitlements (both income and insurance). It might seem that the psychiatrist is best suited to answering medication questions and the job coach for work-related interests. Other times, however, the user may want to be more active in gathering information and seek out answers him- or herself with some direction from others. Understanding the goal with ample information helps user and carer to decide how to proceed. In the employment example, they might identify parttime jobs which are less of a challenge to entitlements. The decision includes specifics about what the carer will do, who else is involved, and places where the decision are relevant. Costs and benefits of the decision are then considered. Benefits are the advantages of a decision, the pluses that occur when the goal is pursued as outlined by the possible decision. Costs are the disincentives, why the person will not pursue the decision. This kind of cost–benefit comparison is similar to the rules and practices of motivational interviewing (Rollnick,

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(a) User ............................................................

Carer(s) ............................................................

GOAL (problem) What ......................................................................................................................................... .................................................................................................................................................. When Where Who MORE INFORMATION is needed. Questions .................................................................................................................................................. .................................................................................................................................................. .................................................................................................................................................. Who will search for answers POSSIBLE DECISION What ................................................................................................................................................... ................................................................................................................................................... When Where Who IMPACT Costs Benefits •

•

•

•

•

•

• • PLAN USER .................................................................................................................................................. .................................................................................................................................................. CARER .................................................................................................................................................. .................................................................................................................................................. TIMELINE Start: .................................................. End: ...................................................

Figure 4.6 The Shared Decision Making Worksheet: (a) blank worksheet and (b) example of completed worksheet.

Miller, & Butler, 2008). The very process of considering behavioral contingencies helps people to understand better why a specific decision may or may not promote goals. This kind of behavioral analysis also helps user and carer to understand better the intricacies of a specific goal. In the process, a better decision might be honed. The final box in the worksheet provides space for the plan per se. After user and carer weigh the various costs and benefits a specific plan may occur. Plans

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(b) User... Neville Jones ....................................... Carer(s)..... Dr Shah, Freda Campbell (case manager) .... GOAL(problem) What...... Get control of my symptoms ................................................................................................................................................... ................................................................................................................................................... When Where Who MORE INFORMATION isneeded. Questions........ What keeps me from gaining too much weight with the meds? ................................................................................................................................................... ................................................................................................................................................... ................................................................................................................................................... Whowillsearchforanswers? Neville POSSIBLE DECISION What.................................... Take medication as prescribed. Weigh self weekly. Decreasea medication if weight increases .................................................................................................. ............................................. by more than 3 pounds. Learn cognitive behavior therapy tools ................................................................................................................................................... When Weekly Where In apartment Who Neville – and Dr. Shah for meds, Freda for CBT IMPACT Costs Benefits • I might gain too much weight. • Being overweight is embarrassing and threatens my health.

• I respond well to these drugs. I can keep using them. • Dr. Shah and I have a track record with these medications. • I have control over the process when I measure weight each week.

PLAN USER............... Neville will weigh himself weekly. He will tell Dr. Shah during........................ monthly visits whether his.......................................................................................................... ............... weight has surpassed goals. In these situations, Neville and Dr. Shah.................... will decide whether to change.................................................................................................... ....................................................................................................................dose or medication. CARER................................. Dr. Shah will obtain weight from Neville and consider change in dose/med if weight limit ............................................................................................................ ........... is surpassed. ............................................................................................................................... TIMELINE Start:... September 1, 2009 .............................. End:..... January 1, ..........................

Figure 4.6 (Continued)

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are actions. What will the user do to achieve a goal? What will the carer do to promote consumer progress? Both parties should be wary of the grand plan, the definitive, one-time step, as it were. Instead of seeking to get a full-time job with benefits, the person should identify intermediate steps that are approachable and doable. Not “when do I go back to work?” but “where do I find job coaching and support?” Corrigan and Larson (2009) take an even bolder step to emphasize that user decisions may “trump” the preferences and choices of the provider. They argue that SDM is relatively simple when mental health consumers and providers agree on overall direction and activity. It is when they disagree that ultimate control over life choices and treatment options goes to the person with mental illness, which protects their right to choice, risk, and discovery. Consider this point in light of medication decisions. There is a growing concern regarding the side-effects of second-generation antipsychotic (SGA) medications: weight gain, diabetes mellitus, and related metabolic disturbances (Buckley et al., 2007). Despite this concern, research suggests metabolic disorders are untreated in many users with schizophrenia, with particularly high rates of non-treatment for hypertension and dyslipidemia. Nonwhite women may be especially vulnerable to under-treatment of dyslipidemia and diabetes compared to nonwhite men (Nasrallah et al., 2006). It is thus important that consumers offered these medications have access to the pros and cons of various medications so they can practice their right of making informed decisions and enjoy the sense of corresponding empowerment. Some practitioners retort that behaviors might be dangerous to self or others and in those situations, the mental health professional (often the psychiatrist) has legal responsibility to act. We agree with this perspective, with two caveats. First, decisions are often framed as matters of life and death that are not so. Personal decisions about medication and emergencies are frequently viewed in this way when in fact they are not. Hence, overruling decision making is not needed. Mental health providers need to be aware that threats to personal empowerment may be as harmful as injudiciously deciding to take over a treatment plan. Second, responding to concerns about danger and safety, in which coercive actions are chosen, is not therapy or treatment. Dan Fisher once viewed this as police actions, that personal rights for any citizen need to be unilaterally set aside when actual or potential danger may come from that person. This applies to the enraged husband who has just hit his wife, the person driving drunk, or the individual in psychosis who is threatening her mother. This does not mean decisions to hospitalize someone are abusive, but rather that they do not represent the nature of the joint decision relationship. Hence, just as getting arrested for taking street drugs is a primary focus of treatment in

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that domain, so being hospitalized against one’s will is the focus of subsequent interventions. Nor do we mean to say that the psychiatrist or other mental health professional involved in an inpatient committal is unable to provide empathic treatment to the patient. Instead, we recognize that the provider has added a second hat to define his or her relationship with the person with mental illness. An example of shared decision making is provided in Figure 4.6b for Neville. He has sat down with his psychiatrist, Dr. Shah, and his case manager, Freda Campbell, to craft a decision plan meant to help Neville gain control over his symptoms, especially acute symptoms and distress that result from cantankerous family holiday dinners. Neville has found medication adjustments to help acute changes, but has been concerned about associated weight gain due to psychiatric medication for the past few years. He therefore sits down with Dr. Shah to understand medication options sensitive to weight concerns better. He believes adding a new type of anti-depressant will help to control his distressing symptoms. He also learned from Freda that cognitive behavior therapy (CBT) may offer additional tools to deal with distress. Neville then considers the costs and benefits of each possible decision separately; reasons to change medications differ from learning CBT tools. Figure 4.6b lists costs and benefits for adjusting medications. Costs are dominated by weight and body concerns. Benefits include previous experiences with new generation anti-depressants that have helped to control unexpected anxiety. The comparison of advantages and disadvantages indicate adjusting medication to be a wise option. Then, Neville and Dr. Shah specifically identify what Neville will do vis-a-vis symptom exacerbation and tasks assumed by Dr. Shah.

Psychiatric advanced directives (PADs) Psychiatric advanced directives (PADs) are another way to support consumer rights to self-determination, especially when situations arise regarding danger to self or others. Some people have likened PADs to relapse prevention: plan now while cogent and aware how to handle situations where ability to make decisions is lax. Relapse prevention is described in the next section. In PADs, the person with mental illness, along with important carers, partner to identify situations that are dangerous to self or others and where cognitive clarity is missing. With this identification, the group lists a series of actions which the person and designated providers, family members, and friends should implement to reduce any harm. The worksheet in Figure 4.7 provides a handy way to organize this task. Like the Shared Decision Making worksheet, the person of interest and key carers are listed at the top. PADs are most successful when as many of the key agents as possible participate in the process. For example,

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User .............................................. Carer(s) ................................................................... In what situations are PADs needed? What ........................................................................................................................................ .................................................................................................................................................. .................................................................................................................................................. When Where Who Every effort should always be made to include the person in ALL decisions related to their life and treatment. Who should be involved in deciding whether an advanced directive is needed? .................................................................................................................................................. .................................................................................................................................................. What actions are directed? By self

By other

Medications ...........................................

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Hospitalization .......................................

............................................................................

Crisis .....................................................

............................................................................

Police .....................................................

............................................................................

Other ......................................................

............................................................................

................................................................

............................................................................

Figure 4.7

The Psychiatric Advance Directive (PAD) worksheet.

directives about medications are likely to be unsuccessful when the psychiatrist is absent. Two important elements make up the PAD. The first is describing the situation where decisional capacity may be threatened in the future. Frequently, these situations are marked by a significant change in symptoms. Hence, people who become noticeably anxious, depressed, angry, or euphoric may be in situations that threaten their capacity to make decisions; typically, these are changes in baseline. Also, the situation needs specifically to reflect issues related to danger or harm to self or others. Failing to comply with a treatment plan is not necessarily a focus of PADs. Not taking recreational drugs or having indiscriminate sexual intercourse are typically important goals of services. But PADs are not developed for those situations. The central principle governing

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PADs is identifying factors and situations that prevent the person from making wise decisions. The concern about drug use and unprotected sex are better suited for relapse plans. The “situations” box on the worksheet provides the “what?” of the situation: symptoms and danger. Important here is specifying the time and place in which this might be expected to happen. Also, which people are relevant to the situation, people who may exacerbate the problem and related symptoms as related to the situation. In addition, who are the people that might be recruited to help the person through the situation? The subsequent text box specifically lists potential positive agents for the PAD. The second important element listed on the worksheet is definition of the actions to be taken in response to the kind of PADs situations listed earlier on the sheet. Note that actions are listed separately for the person of concern in this process and other important agents. This distinction explicitly addresses central points about directed actions. Responding to the PADs situation is not the goal solely of the person with mental illness. Others might have specific and useful roles in helping address the situation of concern. In addition, responding to PADs situations is not the purview of carers alone. People who are decisionally impaired are still the primary agent of all activity related to their life and treatment. Several possible actions might arise, with four being especially prominent and listed in the form. The person and his or her doctor will adjust medications when the PADs situation occurs. This may mean increase in dose, change in type of medication, or stopping the medication. The last option may occur when a medication makes the condition worse. Hospitalization may often be a PADs option. The person with mental illness may decide to have him- or herself admitted to a psychiatric ward. This kind of preparatory decision may drastically reduce perceptions of hospital care as coercive. Persons admitting themselves to inpatient wards avoid any kind of commitment process and so have more control of treatment on the ward as well as subsequent discharge. Hospitalization is actually a more complex process than staying on the ward overnight. Partial hospitalization, for example, may be a good alternative, a setting to which a person might travel for day treatment so they may return home at the end of the day. The key variable here is crisis and crisis management. In losing decisional capacity, user and carer are concerned about rash decisions on which people might act that lead to irreversible consequences: suicide or harm to others. Crisis and case management may combine to manage the situation outside the hospital. The person with mental illness agrees to allow a case manager visit him or her several times each day to assess imminence of harm to self or others. Actions may also include recruiting key carers to be with the person over the

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course of the situation. All actions in the hospital or by crisis/case managers include frequent assessments of decision-making skills and danger to identify when the person is no longer in need of the advanced directive. Police are often important agents in PADs situations. They are frequently first responders to violent or potentially violent exchanges involving the person of interest. Police forces are incorporating crisis intervention teams (CIT) into their repertoire of responses to perpetrators with mental illness. CIT includes specific training to groups of officers who become the responding team in cases of violence and mental illness. Officers learn how to respond safely and quickly to people with serious mental illness in crisis. They learn to recognize signs of psychiatric distress and how to de-escalate a crisis – avoiding officer injuries, consumer deaths, and tragedy for the community. In addition, CIT officers learn how to link people with appropriate treatment, which has a positive impact on fostering recovery and reducing recidivism. Interested readers should visit the NAMI CIT Resource Center (www.nami.org/template.cfm? section¼CIT2) to learn more about the intervention. Finally, the textbox on directed actions in Figure 4.7 include additional space for idiosyncratic ideas to respond to emergencies.

Relapse prevention (RP) Relapse prevention extends principles and actions of PADs to situations which might represent recurrence of psychiatric symptoms or related problems (though not those kind of PADs priorities related to decisional incapacity and danger) (Marlatt, 2005). Although principles and practices originally developed for addressing alcohol abuse and addiction, RP has been quickly extrapolated to the kind of recurring problems experienced by people with serious mental illness. It rests on several assumptions. Relapse is a normal event in moving towards recovery. Admitting this takes the sting out of slips. People who have difficulty getting out of bed in the morning because their depression has returned realize they are not weak or bad because of the relapse. As a result, they avoid what some call the abstinence violation effect. According to the abstinence violation effect, excoriating oneself because problems have come back again can actually exacerbate the situation. Self-esteem decreases and the person loses ability to address the situation. Framing the experience as a slip instead of a “full-blown relapse” decreases the negative rebound that might otherwise worsen recurrence. The person plans for future responses given the likely return of symptoms over the course of recovery. These plans take one of two forms (summarized in Figure 4.8, an RP worksheet). The person can plan how to avoid situations where relapse has occurred in the past. For a person who abuses alcohol, this may include company parties where too much booze and too

Addressing Self-Stigma and Fostering Empowerment User ..........................................................

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Carer(s) ..............................................................

What is a relapse? .................................................................................................................... ................................................................................................................................................... Describe relapse situations What?......................................................................................................................................... ................................................................................................................................................... ................................................................................................................................................... When? Where? Who?

Plan RESPONSE when relapse occurs (medical or psychosocial) What? ......................................................................................................................................... ................................................................................................................................................... ................................................................................................................................................... When? Where? Who?

Figure 4.8

The relapse prevention worksheet.

many bad examples are present. For a person with anxiety disorder, this may be long lines where the person has to answer repeated questions. The person who abuses alcohol can protect himself from relapse by not going to company parties. The person with significant anxiety can avoid future distress by not frequenting long lines. The avoidance plan rests on being able to identify the cues that precede situations that plausibly lead to relapse. The person is trying to identify these cues and avoid situations ahead of time. It requires foresight on the part of user and carer, being able to identify relapse situations. Sometimes, though, situations like these cannot be avoided. The person may stay away from drunken office parties, but still feel compelled to spend Christmas holidays at the parents house where alcohol flows freely. A problem-solving strategy may be useful here. The person describes situations where problems occur and ways to resolve these problems. The costs and benefits of possible strategies are then weighed, with the user picking out the resolution thought to yield the best outcomes. A specific plan is developed

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that specifies all the parameters necessary to implement the solution; once again, “W” questions apply. Who is involved in bringing about the solution? What will I and that person do? Where and when will the solution be implemented? The person evaluates solutions a week to a month later to determine whether the plan had positive effects on the problem. In cases where benefit arises, the person continues the solution to problems as these problems recur. In instances where concerns about the problem remain, the person should consider how the solution might be adjusted or consider other solutions listed earlier. Alternatively, the person decides how to respond to a relapse when it occurs. Just as in PADs, the relapse plan includes actions for the person with mental illness and from any important carers. So, for example, people who drink alcohol and relapse in drunkenness may have a plan that includes more trips to AA meetings, immediate support from the sponsor, and more time in church. Or people who let their boss know they want to unexpectedly quit their job contact their job coach and take a sick day at which time the coach and person can attempt to understand the work problem and ways to adjust it. Real-world problems usually do not have such neat relapse plans. So, for example, the employee abruptly wanting to quit the job might have further plans to have the job coach help to problem-solve with the supervisor and to visit the psychiatrist to adjust medications related to distress.

2. Consumer satisfaction and input to services One of the assumptions of empowerment and collaboration is that treatment teams design interventions and programs that are pleasing to participants. Hence, assessing consumer satisfaction is a minimal requirement for establishing programs that empower consumers. One might think this to be a straightforward process. Mr. Smith, do you like the program you’ve been attending?

Assessing consumer satisfaction is more difficult in actuality. Some rules for developing a useful consumer satisfaction scale are discussed below. Unfortunately, concern with consumer satisfaction frequently ends with assessment. Programs collect data on satisfaction but fail to use these subsequently to improve services. Hence, in this section we segue to considerations regarding how to improve a program based on satisfaction feedback, a consumer satisfaction report card.

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What goes into a consumer satisfaction scale? When evaluating consumer satisfaction, satisfaction scales should consider four categories or domains (summarized in Table 4.3): the service environment, providers, specific interventions, and preparation for autonomy. What is the quality of the service environment: are the rooms pleasant, including decor, lighting, furniture, and temperature? If food is provided, is it tasty and plentiful? Are the service providers knowledgeable and competent in their job? Are they approachable, respectful, and friendly: can I interact with them informally? How useful are specific interventions themselves: do they provide me with the skills I need; do they encourage me to identify, list, and state my goals; do they provide the resources and support needed for my goals? Is the service preparing me for autonomy: after finishing the program, am I better able to live independently; am I more hopeful about my future? Typically, consumers are presented with 30 to 40 questions like those in Table 4.3 to assess satisfaction with a specific program. They are then asked to rate each item on a seven point scale (for example, see Figure 4.9). Leon believed the program ignored his goals and therefore circled “1” on the scale for highly dissatisfied. Kelly was very pleased with the way the program was helping her consider whether she should live independently; she circled 7. Usually, about eight items are asked for each of the four domains. After completing the test, all the individual item scores are added up for each domain and yield a satisfaction report card like the ones in Figure 4.10. Considering that each domain of the report card consists of eight items that were rated on a 7-point scale, a score of 56 represents a rating of perfection satisfaction while 7 represents total dissatisfaction. The satisfaction report card in Figure 4.10 illustrates the dramatic difference in levels of satisfaction between “Halo” (highly satisfied with everything) and “Devil” (highly dissatisfied with everything) across all four assessed domains.

Having input on services The full benefit of evaluating consumer satisfaction will only be realized when providers use the results from these evaluations to change services. The report card in Figure 4.10 is only worth the effort when staff use the results, for example, to upgrade the providers in the Supported Employment Program, enhance the environment in the Independent Housing Program, and broaden the interventions in the Program for Mental Illness and Substance Abuse. Unfortunately, this kind of program improvement is frequently done without input from consumers. Instead, treatment providers take the findings and decide how to improve program aspects on their own. This kind of approach fails to promote empowerment.

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Table 4.3 Four domains for assessing consumer satisfaction with services. Domain and definition

Example of items that assess these domains

Service Environment: Is the physical setting in which services are provided satisfactory?

The rooms in which treatment was provided The temperature in the rooms The lighting in the rooms and the manner in which the rooms were decorated

Providers: Are the persons providing service satisfactory?

The providers’ approachability Their knowledge of mental illness The level of respect with which providers talked to you The amount of informal talk between you and the provider

Specific Interventions: Are the tasks that comprise a service satisfactory?

The clarity of treatment expectations The manner in which time was structured The amount of activities in treatment The amount of fun in treatment The relevance of services to your goals

Preparation for Autonomy: Does the service help persons achieve their independent goals?

Whether the service helped you to live on you own Whether the service has prepared you for a job Whether the service has helped you to better understand yourself

1

2

3

highly dissatisfied

4

5

neither

6

7 highly satisfied

Figure 4.9 How satisfied are you with the relevance of services to your goals?

Halo Effect Service Environment Providers Interventions Autonomy

56 54 55 56

Devil Effect Service Environment Providers Interventions Autonomy

7 9 8 7

Comparison Effect Service Environment Providers Interventions Autonomy

50 42 9 9

Note: For this report card, each domain consisted of 8 items that were rated on a 7 point scale like the ones in the text. Hence, a score of 56 represents a rating of total satisfaction and a score of 7 represents total dissatisfaction.

Figure 4.10 A satisfaction report card that shows the differences among halo, devil and comparison effects.

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The preferred way to handle findings from satisfaction evaluations would be to involve participants in focus groups where they discuss their concerns about aspects of the program and, more importantly, provide recommendations for ways which the program might improve. For example, consumers participating in the Supported Employment Program could meet in a focus group to discuss ways to upgrade providers so they are viewed more satisfactorily in the future. There are two essential roles to fill in these kinds of focus groups: leaders and participating members. The best leaders for these groups are other consumers who are trained to facilitate these discussions. Although traditional service providers may have skills for running discussion groups like these, members might be hesitant to speak freely because they believe the provider will side against them with the established program. Many consumers are able to lead these groups with no more than an hour’s training. We do not have the space here to consider the skill for a focus group leader; useful resources where these issues are discussed are listed in the Learn More About It section at the end of this book. Focus groups should comprise six to eight members. Groups with fewer do not have enough people to promote lively discussion. Conversely, individuals in large groups may believe their opinions are lost in the masses. Programs that have many consumers wishing to participate should set up more than one focus group with each one comprising separate leaders and six to eight members. Members should be clearly informed of the goal of the meeting; namely, to provide feedback on ways to improve aspects of the specified services program. Moreover, members should be given ample notice regarding the time and place of the meeting so they can set aside the necessary hours. A good mix of persons with different opinions should be invited to the focus group. Include consumers at both ends of the scale – persons who are fully satisfied with program and those who are highly critical – as well as individuals in the middle. In this way, a polite contrast of opinions is possible. Leaders should develop a series of questions to guide the discussion prior to the meeting. These questions should be based on the results of the consumer satisfaction evaluation. For example, results from the report card may show participants are fairly satisfied with all components of the Independent Housing Program except the physical plant. Hence, the leader might want to generate a few questions that get the group thinking about the quality of the environment. . . . . . .

What could be done to improve the physical aspects of housing? What might we do to redecorate that would help? How’s the lighting? How’s the temperature? What might we do to make it safer? Any point you’d want to add that I didn’t touch on?

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Note that the questions are mostly open-ended. Open-ended questions cannot be answered with a yes or no; instead, they require some explanation. In this way, the depth and breadth of the problem can be understood. Moreover, open-ended questions do not lead participants. Consider how this closedended question might yield inaccurate information. Don’t you agree that, although it can be too hot in our rooms in the summer, we are all able to put up with it?

Identifying problems is a necessary part of the focus groups. Consumers are instructed to list the parts of the program that currently do not work for them. However, the fruit of the focus group comes from solutions to the problem. Hence, leaders want group members to look beyond what is wrong with a program. This kind of limited focus is easy and can lead to a complaints session. No change results from a list of grievances. Real improvements come from solutions to these grievances. These solutions need to be in the form of “doing” statements: what can staff and consumers do to improve the quality of a program? In additions, group members need to ask whether solutions are practical. Sure, the best way to improve the housing program is to tear it down and build brand new condos. But that’s not going to happen. So how do we improve what we’ve got?

There are two kinds of members with whom the leader need be cautious. Some members have loud voices; not necessarily speaking thunderously but speaking in an authoritative manner. They presume to speak for everyone. I know what all consumers think. All consumers hate green paint because it reminds them of the state hospital.

No one speaks for all persons with mental illness. Hence, this loud voice should not be set up as the only source of ideas. Rather than trying to suppress this person, leaders need to make sure that there is consensus about what the outspoken person has to say. Who agrees with Frank that we should not use green pain?

An equally important person to be aware of is the quiet person, the group member who offers no opinion. This person may actually have no thoughts about a topic. However, all the group members went out of their way to participate in the group. More than likely they have views about the topic but are somewhat shy or perhaps intimidated by more outspoken members. Group leaders should actively seek out their opinions in these cases.

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Someone should be appointed secretary for the group; his or her job is to write down ideas as they are generated. A chalkboard or paper and easel are also useful tools for the meeting. Suggestions can be listed on them as they are generated for all to consider. At the end of the meeting, a brief report listing suggestions should be produced based on this list. The report should end with a follow-up date at which time administration can review with the focus group how the agency has progressed on the recommendations. Designing skills training programs. One of the main stays of services for people with serious mental illness is the skills training group. A peer support program might teach participants coping skills. An advocacy group might teach skills related to obtaining the full range of one’s entitlements. A rehabilitation program might teach interpersonal skills. Typically, manuals and other support materials are developed so that these programs are presented as highly structured modules. Unfortunately, modules like these are rarely developed by the kinds of people who implement them. In order for skills training programs to be truly client-centered and tailored to the unique desires and needs of program participants, user perspective needs to be incorporated into development of training modules. A four-step process for giving consumers a central role in developing skills training programs is summarized in Table 4.4. The four-step process is illustrated in summarizing the development of a Street Smarts module: how to live safely in a large urban area. The four-step Table 4.4 Four-step process for developing skills training groups (adapted from D’Zurilla, 1986). 1. Identify problems

2. Validate problem list

3. Identify solutions to problems

4. Validate solution list

Survey a consumer group regarding list of problems related to specific skill area. For example, what specific problems do you have living safely in the city (Street Smarts)? Validate problem list on independent group. For example, “A group of your peers made this list of problems related to living safely in the city. Check off those items on the list which you agree are problems.” Survey consumers for solutions to list of validated problems. For example, “A group of peers listed these items as problems with living safely in the city. What are solutions to these problems? In other words, how have you learned to live safely and deal with each of these individual problems?” Validate list of solutions on an independent group. For example, “A group of your peers said these were solutions to problems related to living safely in the city. Put a check next to those items which you agree are good solutions.”

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model was used to make sure that the final product represented the perspective of consumers living in poor sections of the city rather than suburbanites. During the first stage, we asked a group of about 20 consumers to specify their concerns about living in a big city. They generated a list of 75 distinct concerns; for example, traveling on public transportation, being out at night, and avoiding gang trouble. We were then curious which, among these 75 responses, a separate group of consumers would endorse as most important. This sort of consensus helps us focus on key issues in Street Smarts. Twenty-five consumers who did not participate in the original survey were handed a checklist which included the 75 responses and instructed to check off items on the list that were of direct concern to them. Based on this feedback, we cut the list down to about 25 problems and grouped them into core areas: . . .

how to avoid being a victim of crime; what to do if you are a victim of crime; and how to stop needlessly being arrested (e.g., for vagrancy).

The important part of training groups is actually teaching skills that help people accomplish their goals and avoid problems. Hence, in Step 3 of developing the Street Smarts module, we asked a group of about 20 consumers to complete an open-ended survey. They were instructed to list ways they would deal with the three core areas above; for example, what do you do to avoid being a victim of crime? The 20 participants provided 61 unique answers. Finally, in order to validate the solution list, 20 different consumers were asked to complete a checklist of these 61 answers and circle the items that seem like good solutions. About five solutions emerged for each core area. For example, five learning points were agreed upon for ways to avoid being a victim of crime: . . . . .

have your home and car secured from burglars; stay away from dangerous places; do not flash money or other valuables; ride public transportation safely; and do not talk to strangers.

Specific skills for each of these solution areas were then generated.

3. Psychosocial clubhouses Consumers have obtained further control of the mental health system and their world in psychosocial clubhouses where people with mental illness have equal

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authority to professional staff in operating the program. The emergence of clubhouses reflected consumer dissatisfaction with the way mental health providers acted towards people with mental illness. This dissatisfaction led to a philosophy that clearly echoes the importance of empowerment. During the years after the end of World War II, many people were released from Rockland State Hospital outside of New York City with no community connections. In order to survive, they met on the steps of the New York Public Library to provide each other with resources and support. Soon, the group gained notoriety and others also released from Rockland joined them in this make shift society called WANA: We Are Not Alone. In 1948, the group bought a building through the generous donations of a Jewish women’s philanthropic group. The building had a fountain in the backyard; hence its name, Fountain House. It was built around a fundamental philosophy: Men and women with mental illness have the right to a life which includes access to meaningful, gainful employment; a decent place to live; a community of support; the opportunities for education and recreation offered by the communities in which they live; and the chance to be needed, wanted, and expected somewhere every day. (International Center for Clubhouse Development (ICCD))

The number of clubhouses have mushroomed around the world. Over the last years alone, 34 new ICCD Clubhouses have joined the ICCD Clubhouse Community, including four in Europe, 11 in Asia, and 19 in the United States. New countries include Taiwan; and new states in the United States include Maryland and New Jersey. The ICCD also developed explicit clubhouse standards that have been translated into over a dozen languages, including Chinese, French, German, Hebrew, Italian, Korean, Polish, Russian, Spanish, and more. Clubhouses operate according to a work-ordered day with normal 9-to-5 working hours. Each day, members (consumers and staff alike) decide among a variety of work units that comprise the necessary tasks to keep the clubhouse running effectively. Work activities at Fountain House have included horticulture, thrift shop, snack bar and dining room, clerical, education, and research. Participation in this kind of activity reacquaints members with the demands of the work world as well as its many benefits. Several values characterize the clubhouse. People belonging to the clubhouse are members rather than clients or consumers. They have equal power with the professional staff hired to support clubhouse activities, not only in daily operations but in decisions about budgetary issues too. With membership comes responsibility. All members are expected to contribute to some aspect

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of the clubhouse’s operations. Clubhouses are designed so that each member is essential for efficient operation. It was unlike any other mental health program I belonged to. It was important to them that I be there. At first, I thought the expectations would overwhelm me. But the sense of responsibility and belongingness actually made me feel like a man again!

The fully collaborative nature of staff and consumer leads to all members being considered co-providers. Clubhouses are open every day of the year. Unlike mental health centers which typically close for holidays, clubhouses are open for their members to celebrate occasions like these. Clubhouses may provide a wide variety of opportunities, including housing, education, social support, recreation, and vocational training. Services are never pressed upon members. Rather, they are used as the individual sees fit.

4. Assertive community treatment and supported employment Even though clubhouse programs have many values that promote empowerment, they still require the consumer to go outside their home “turf ” to receive services. In the 1960s and 1970s, two professionals from Madison, Wisconsin, Leonard Stein and Mary Ann Test, turned the service world upside down. Instead of demanding that consumers go out to the offices of providers, why not bring services to users where they need it: their home or anywhere else the consumer might deem necessary for resources and support? Called Assertive Community Treatment, or ACT, Stein and Test (1980) believed the entire range of services, medications, psychotherapy, skills training, money management, and the rest, could be and should be provided in the person’s home or community. A variation of this idea is supported employment where a job coach provides services alongside of the consumer at his or her place of work. Table 4.5 lists several ways in which ACT and supported employment facilitate empowerment. First and foremost, these programs are consumercentered. Services are defined by the needs of the consumer not the provider. Although this may seem obvious now, this value was revolutionary when first proposed. In the past, treatment plans reflected what was best for the consumer and the provider. Hence, a person may not be referred to an independent housing program if it was outside the case manager’s district. A consumer may not begin competitive work until the agency had an available job coach. Consumer-centered services remind the provider that it is up to the agency to find the necessary resources and supports to help consumers achieve their goals on the consumer’s timeline.

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Table 4.5 Qualities of Assertive Community Treatment (ACT) and supported employment that strengthen empowerment. Consumer-centered Strengths model Cross-sectional and comprehensive Longitudinal services Accessible and available

Accountable

Service goals are defined by the consumer, not the rules of the treatment program or expectancy of family and friends Service planning reflects skills which the person has already mastered ACT and supported employment address the full range of services needed by the consumer ACT and supported employment is provided as long as the person needs service. It is not time-limited Providers of ACT and supported employment meet consumers in places and at times convenient to the consumer The individual services that comprise the treatment plan are top quality

A strengths-based approach ACT and supported employment are strengths-oriented. Rapp and Goscha (2006) emphasize six strengths-based principles which may potentially improve the recovery orientation of case management services. (1) People have the capacity to recover, reclaim, and transform their lives. A practitioner with this belief conveys hope and achievement both implicitly and explicitly, which will qualitatively enhance the entire interaction between consumer and provider. (2) Services need to focus on individual strengths rather than deficits. All human beings have a mix of both. Consumers, however, often have mental health providers focusing on their deficits which can be spirit-breaking and demoralizing, crippling any sense of efficacy. (3) The person is seen as the director of the helping relationship. It is thus the consumer rather than the practitioner who should be in the “driver’s seat” choosing direction and pace. (4) The relationship between the person and the service provider is primary and essential. Perhaps the most consistent and central finding of decades of psychotherapy research is that the relationship is the single most important factor contributing to effective outcomes. Rapp and Goscha (2006) emphasize that the essential ingredient in the relationship is the case manager’s belief in the consumer’s capacity for growth-oriented change, which helps stimulate positive energy. (5) The preferred setting for service is in the community. In order to get to know and to help most effectively, the service provider must meet the person in his or her natural setting and not in a superficial treatment-like environment. (6) The community is an oasis of

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resources. This is the natural and normal setting where the process of recovery could and should occur, where provision of help should focus on identifying and using those natural resources. This view differs from the disease model that dominates traditional services. Proponents of the disease viewpoint believe people are defined by their symptoms and other weaknesses which need to be “fixed” through treatment. Compare this to the strengths model which recognizes people to be described by their skills and not their fallacies. Awareness of these skills is essential; these are the tools which people use to accomplish their goals. For years professionals asked me about my symptoms. They would ask me all of the time “do you experience this?” and “do you experience that?” It was like all they cared about was my symptoms and how sick I was. No one asked me about what I could do. What I was good in. Maybe it never entered their mind that I could be successful. But here things are different. My case manager wants to know what I want and what I need to do to get that.

A strengths-based approach is a much more empowering, and much less stigmatizing, way to provide services; rather than seeing people as nothing more than their symptoms, it reminds us that everyone is a complex being defined in large part by their accomplishments and skills. As stated earlier, ACT and supported employment represented a radically different way of doing business. In being consumer-centered and strengthsbased, providers of these services made interventions as convenient, accessible and efficient as possible (see Table 4.5). Hence, ACT is comprehensive and cross-sectional. Namely, it provides services across all domains of need: housing, finances, family, health care, spiritual matters, and recreation. Things are sure different now. About 15 years ago, I was working with four different programs in three different cities. The local mental health center provided medication and helped me with my symptoms. I went to the Oak Tree for sheltered workshop. I lived at the River Woods board and care center. And Mary Lou, from the township office, helped me with my social security and Medicaid. It was almost a full-time job keeping all this straight.

ACT represents one-stop shopping where a single team provides medication help, assists with managing the home, and coaches the person at work. ACT and supported employment are also longitudinal. By this we mean the service is provided by a single team as long as the person needs it. Mental health providers used to have the bad habit of ending services at times that were not convenient to the consumer. “Joe will lose his case management services in two more months because his funding runs out then. Too bad he’s not ready to be cut loose.” Sometimes services are provided indefinitely. ACT

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and supported employment continue as the person changes home or moves in and out of institutions. Mental health systems of the past had the unwise practice of discontinuing community services for those individuals who had to be hospitalized because of short-term psychiatric emergencies. Unfortunately, these people had to start over with a new team when released a few weeks later. The ACT and supported employment team provide services longitudinally to offer support and resources even while the person is hospitalized or involved in the criminal justice system. Effective ACT and supported employment are accessible and available. This means services are provided in places that are convenient to the consumer, typically their home or place of work. Moreover, service is provided at times that make sense to the consumer. The provider does not ask the person to stay home from work so he can come to the apartment to discuss shopping. Instead, the provider might come in the evening when the person is home from work and has eaten dinner. ACT and supported employment are also accountable. Most consumers of any kind of service would not put up with lousy results; who would continue to hire the electrician unable to get the light back on? Unfortunately, mental health had a tradition of providing the same old service, whether it met needs or not. In some community mental health programs of the past, therapists read the front page of the newspaper as reality orientation or taught skills that had little to do with personal goals, needs, or desires. Accountability means services impact people and their goals.

5. Consumers-as-providers What better way to influence the system that provides services than for users to assume jobs as providers of these services? In this spirit, people with serious mental illness have filled almost every conceivable position in the mental health system. They have become job coaches, consumers have worked on assertive community treatment teams, and they have run support groups. Consumers have also worked at all the professional levels that comprise the treatment team: psychiatrists, psychologists, social workers, and psychiatric nurses. Several well-known consumer advocates, for example, have cut their teeth as mental health professionals. Daniel Fisher is a psychiatrist and Fred Frese is a psychologist, both in the United States. They have more than 20-year histories struggling with the psychiatric disabilities that result from schizophrenia. As outlined below, consumers filling mental health provider roles yield several benefits for both the individual consumer as well as for people with

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mental illness in general. At the broadest level, consumers-acting-as-providers challenge stigmatizing notions about people with mental illness. Public understanding of “Who is a consumer?” broadens beyond the simple idea that they are psychiatric diagnoses. Consumers are also helpers! Despite their disabilities, or perhaps because of them, people with mental illness are able to support peers with mental illness, providing them with knowledge about psychiatric symptoms, skills to deal with these symptoms, and resources to meet their goals. Showing these abilities challenges the public idea that people with mental illness are incompetent. I always thought ex-mental patients were unable to live on their own or work. But then I met Harry Larkin and I thought, “Wow! He’s pretty impressive being able to hold down a position as a job coach.” I guess all those ideas about people with mental illness being unfit weren’t true.

Some advantages of consumers as providers are: . . . .

The public’s understanding of “consumer” is expanded to include helpers. Consumers assume roles which traditional providers cannot or will not do. The credentials that define helper are expanded significantly. Providing help to others yields tangible benefits for the helper.

There are some tasks that only consumers can provide. One of these is the “I’ve been there too” kind of support. People in the throes of depression or anxiety receive immeasurable benefits by hearing from a peer who has been in the same situation, survived the challenge, and thrived to become a mental health provider. Answers to “Who is a provider?” broaden greatly when consumers join the services team. There is one last aspect to consumers-becoming-providers which must be highlighted. Consumer involvement as service providers is a promising way to help improve the recovery orientation of an agency. Consumer providers can have a powerful effect for instilling hope and enhancing engagement by their ability to model recovery. Although consumer experiences are useful for filling the provider role, experiences alone are not enough to offer good care. Just like the traditional professional, consumers who are providers need to master the necessary skills that will help peers accomplish their goals. In the United States, Europe, and other places around the world, there is a growing number of psychiatric rehabilitation certificate programs to help consumers learn to become providers. These programs also dispel some stigma about mental illness; here is a program that teaches people to assume a role of responsibility in the mental health system and not just be a good patient.

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Although working in the mental health system is a good opportunity on many fronts, it is important to remember that being a mental health service provider is not for everyone. There are many challenges to providing services for people with psychiatric disabilities. Most people without mental illness are not up to the demands of training as well as the stresses of helping others who struggle with psychiatric disabilities. In like manner, we should not assume that every consumer has the necessary temperament and interests to be a mental health provider. Not every consumer needs to try this to move ahead towards empowerment and self-determination.

6. Self-help, mutual assistance, and other consumer-operated services Consumer-operated services, which include self-help and mutual assistance programs, are perhaps the best kinds of programs that promote empowerment. As the name suggests, consumer-operated programs were developed by consumers for consumers. These kinds of services are not just another form of clinical care. Clinical treatment reflects a medical model: people seek out services to resolve symptoms and replace deficits. There is a hierarchy between healer and person in clinical settings; healers have some special power which they use to help patients resolve their problems. The relationship between healer and patient is expected to end when symptoms remit. Consumer-operated programs have been likened more to communities with life-long histories or grassroots information and support systems. Mental illness may be the common experience that draws people to consumeroperated services. But, unlike traditional clinical treatment, this is not where the impact of consumer-operated services ends. These services provide a caring and sharing community where the person can find the necessary understanding and recognition that society at large is unable to give. Nor is there a hierarchy of roles in consumer-operated programs; all members are peers who benefit from interactions with equals. There are no limits placed on the amount of time a person can be involved in a program. Depending on personal needs, some members come and go from consumer-operated programs while others may stay connected for their lifetime. There is a fundamental distinction between self-help groups and mutual assistance programs. Self-help programs are developed by consumers to help them help themselves. As such, benefits from these groups result from learning coping skills and obtaining support from others. Self-help suggests an ethos of rugged individualism where the person takes coping ideas and support from others to make it on their own. Mutual help recognizes an important

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element provided by these groups: People benefit from helping each other. This kind of assistance extends beyond sharing information about coping skills or ways to manage the mental health system. The experience of both giving and receiving help enhances the person’s sense of place in the community and overall well-being. I had been taking from others for so long that I forgot I had something to give. I can’t tell you how important it was for me to realize that my advice can be useful to others. Just last week, for example, I helped Sammy with her baby-sitting problems. It was the best pill for depression I could have taken.

Consumers have also distinguished between mutual help groups and mutual help organizations. Groups are somewhat limited in scope. Members attend regular meetings where individuals benefit from the process, support, and exchange of information. Organizations have a similar structure of meetings and processes. However, the mutual help organization also provides residential, vocational, legal assistance, transportation, food assistance, and temporary housing services so members can address appropriate role functioning needs. Peer support is becoming increasingly widespread around the world with some examples including New Zealand (www.peersupport.org.nz/), United Kingdom (www.mentalhealthpeers.com; www.recoveryinnovations.org), Denmark (www.wnusp.net/), and Australia (www.peerwork.org.au/). Three examples of mutual help programs in the United States are Recovery Inc., Emotions Anonymous, and GROW. The goals of Recovery Inc. are to control symptoms and tension through an approach similar to cognitive behavior therapy. Emotions Anonymous is based on the 12 Steps of AA. GROW also developed out of a 12-step tradition. As such, it includes spiritual maturity as an important part of its program. GROW incorporates some of the cognitive coping strategies from Recovery Inc. in its weekly meetings. GROW also organizes social activities between meetings in order to foster the supportive community and provide residential and vocational services. A more complete list of self-help, mutual assistance, and consumer-operated programs is provided in the Learn More About It section at the end of this book.

Consumer art shows and empowerment Renowned consumer and mental health researcher Kay Jamison argued that there is a special relationship between expression through art and mental illness. Many people around the world have embraced this idea as an excellent form of consumer-operated service with some examples including United Kingdom (www.mskinnermusic.com/mskinner.html, www.artbynicola. co.uk/ and www.borderlandvoices.org.uk/index.htm), Slovakia (http://

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create2009.europa.eu/projects/participating_countries/slovensko_slovakia. html), and Israel (www.s-tov.org.il/ – in Hebrew). For example, at their 1997 national conference in Albuquerque, the National Alliance for the Mentally Ill exhibited about 45 pieces of art from more than a dozen American cities. The show, for which Wyoming-based art group called Sistare was curator, was called “Truth from Darkness: An Exhibition of Works by Artists with Mental Illness.” Artistic merit was the sole criterion for selection. Faith in the substance of consumer art echoes throughout the movement. Another group bridging mental illness and art is Catskill, New York-based National Artists for Mental Health. After their widely applauded 1997 conference in Westchester County, director Frank Marquit was expanding operations and arranging larger facilities for the group’s second national meeting in 1998. The first conference punctuated natural healing techniques, mask-making, and lectures on comedy.

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Addressing Structural Stigma

When ideas fail, words come in very handy. Johann Wolfgang von Goethe The effects of stigma far exceed the loss of esteem and personal hurt felt by individuals with mental illness. They are also embodied as legal matters. Not hiring someone or renting them an apartment because they are somehow different challenges the very foundation of our Western sense of justice. Unfortunately, history has many examples where groups were harshly treated because of their differences. Consider the horrid experiences of Africans and the indigenous peoples of South and North America. Civil rights advocates have spent the past century struggling for laws that guarantee the rights and privileges assumed to be self-evident. Laws which clearly uphold the rights of persons with disabilities have only been guaranteed in the past decade. Application of these laws to persons with psychiatric disabilities has occurred in just the past couple of years. This chapter focuses on legal resolution of structural stigmas legislation using employment stigma as the prototype. This information is a beginning. We provide general guidelines in this chapter to help readers understand their rights under UK jurisprudence as well as legislation in the broader European Union and the Americas. Our discussion is meant as a beginning. Persons who are concerned about their

Challenging the Stigma of Mental Illness: Lessons for Therapists and Advocates Patrick W. Corrigan, David Roe, and Hector W. H. Tsang Ó 2011 John Wiley & Sons, Ltd

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rights after reading this chapter should seek further counsel from an expert. This does not mean to pay money for a lawyer. The Learn More About It section at the back of this book lists several advocacy groups and other organizations which provide a range of activities, from general advice to representing a person in a lawsuit. In addition, readers should consult local versions of Equal Employment Opportunity Commissions installed in most Western countries.

Legal remedies One way in which social injustice has been addressed is via specific and potent laws. These sometimes reflect nationwide priorities or may be more local perspectives: laws at the state, provincial, county, or city level. The UK’s Disability Discrimination Act (DDA, passed in 1995) and the Americans with Disabilities Act (passed in 1990) provide useful prototypes of omnibus and flexible sets of statutes meant to address the injustices of stigma. Hence, we use them to exemplify many of the legal issues related to mental illness stigma. There are other examples of these disability protections around the world, including the 2006 UN Convention on the Rights of Persons with Disabilities and its World Programme of Action Concerning Disabled Persons. The interested reader should contact these groups if more information is desired. The DDA and the ADA specifically forbid employment discrimination because of disability; wording from the ADA is shown in the box below. Despite the legalese, the DDA and ADA (hereafter referred to as DDA/ADA) provide persons with disabilities equal opportunity to work. Some of these points are reviewed here.

Requirements of the ADA in terms of employment “No covered entity shall discriminate against a qualified individual with a disability because of the disability of such individual in regard to job application procedures, the hiring, advancement, or discharges of employees, employee compensation, job training, and other terms, conditions, and privileges of employment.” (Volume 42 of the US Code, p. 12112)

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What is a psychiatric disability under laws like the DDA/ADA? The ADA statement on employment begins with “No covered entity1 shall discriminate against a qualified individual with a disability.” The US government has given much thought about who is “a qualified individual with a disability.” This is an important question because the answer suggests who is protected by the DDA/ADA and who is not. There are two essential components to what statutes such as these mean by disability: 1. a physical or mental impairment; 2. that substantially limits one or more of the major life activities of an individual. Mental impairment is defined in terms of a psychiatric diagnosis using the International Classification of Disease (tenth revision: ICD-10) or Diagnostic and Statistic Manual of Mental Disorders, (fourth edition (DSM-IV)); diagnoses covered by the DDA/ADA and similar laws may include schizophrenia, major depression, bipolar disorder, personality disorders, and anxiety disorders such as panic disorder, obsessive–compulsive disorder, and posttraumatic stress disorder. Not all conditions in ICD-10 or DSM-IV qualify as impairments. Most interesting of these exclusions are disorders related to substance abuse. Although the DDA/ADA may cover conditions related to alcohol and other drugs, individuals are usually excluded from protection when the person is involved in the criminal use of drugs. A diagnosis of serious or persistent mental disorder is not enough for disability under the DDA/ADA. As a result of this disorder, the person must have substantial limitations in one of the major life activities. Major life activities include learning, concentrating, interacting with others, caring for oneself, speaking, performing manual tasks, sleeping, and working. Limitations in these areas must be broad and last a relatively long time to be considered substantial. Breadth and length of the limitation are judged by comparison with life activities of “the average person.” For example, given that the average person sleeps about eight hours, sleep disorders related to depression where the person gets no more than a few hours of fitful sleep each night is broad; tossing and turning before falling to sleep for eight hours is not. Insomnia that lasts for months is sufficiently long. Occasional insomnia lasting a few days is not. 1

A “covered entity” is any employer that meets certain broadly defined hiring qualifications (for example, hires more than 15 employees).

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Substantial limitations in sleep are only judged when the person shows both criteria. Let’s consider some different forms of substantial limitation.

Louis is substantially limited in his abilities to concentrate and learn new tasks. He is frequently distracted by discussions of his office mates. As a result, he cannot concentrate on his computer work. Moreover, he has had great difficulty learning a new word processing program. Karina’s ability to interact with others is substantially limited. She is very shy and has few skills to initiate conversations. She avoids the lunchroom during breaks and is afraid to talk to customers on the store aisles. Although her supervisor has asked how he might be supportive, Karina has been afraid to identify anything that might help. Kim’s ability to care for herself is substantially limited. She rarely bathes or changes her clothes unless her parents tell her to. Co-workers have complained about body odor and have refused to share a work station with her. Limitations of a mental disorder on life activities are judged in the absence of treatment when the disorder is most troublesome. For example, although Shirley’s sleep disorder is quite severe, such that she catches no more than an hour’s sleep when depressed, insomnia is significantly corrected when she takes anti-depressant medication. Her disability, however, is judged at its worst – without medication – for purposes of determining whether depression causes substantial limitations.

Disclosure of disability In the majority of instances, employers may not ask about history with mental disabilities (or, for that matter, physical disabilities) as part of the application process.2 Employment applications cannot have questions about whether a person has ever had a mental illness or been treated for such a disorder. Nor are personnel interviewers allowed to ask questions about any aspect of treatment history. Interviews may not include tests or other instruments to screen out 2

The need for reasonable accommodation, discussed more fully below, provides one of the exceptions to the employer asking about psychiatric history.

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people with disabilities. In addition, employers must ignore issues regarding psychiatric disability should they come up. Employers cannot disqualify a person for a job if the applicant mentions she has previously been hospitalized for a mental illness. Similarly, employers who inadvertently find out information about a person’s psychiatric history – for example, a co-worker reports he met the applicant when they were both inpatients at the state hospital – may not reject the person based on this information. Employers can require job applicants to complete a medical examination after employment has been offered if the employer typically asks all prospective employees to complete this exam. Questions and tests on the medical exam are supposed to focus on functions related to the job; for example, examiners are not allowed to ask about sexually transmitted diseases if the job has no functions which would be diminished by a history of these illnesses. Questions during the exam may focus on psychiatric disability if relevant to completion of the task. However, employers may not use the results of the examination to rescind a job offer subsequently.

Laws like the DDA/ADA do not promote “affirmative action” I applied for a job and told them I have a psychiatric disability. But the employer gave the job to someone else who was better qualified. Doesn’t this violate the DDA?

Employers do not have to hire persons with disabilities according to the DDA/ ADA. The legislation does not establish affirmative action or quotas through which persons with disabilities can expect an advantage during the hiring process. Some governments have proffered affirmative action as an effort to promote opportunities for persons of color and women by setting hiring quotas. For example, some British government contracts require companies owned or operated by women or minorities. The DDA/ADA, or statutes like it, does not promote this kind of affirmative action. Employers are under no pressure to increase the number of persons with disabilities among their workers as long as they are hiring individuals who are better qualified people for the job. Instead of affirmative action, the DDA/ADA attempts to level the playing field in the application process. Individuals who can complete the essential functions of the job, with or without reasonable accommodation, are viewed as qualified for the job just like a group that is not challenged by mental illness. (Reasonable accommodation is discussed thoroughly below.) Essential functions are an important part of the DDA/ADA considered here. Essential

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functions are those parts of the job necessary to complete it competently. The law gives the employer discretion on how essential functions are defined, not the easiest of tasks. There is no dictionary of functions, for example, that define the essential work of a carpenter, store clerk, or cab driver. Typically, employers are expected to list these functions in a job description which might be posted in a newspaper advertisement (in a shortened form) but most likely is filed with the personnel office. Waitresses at the Green Leaf Restaurant are expected to seat customers, take orders in a timely manner, serve food while it’s still warm, add up the bill, bus tables, and be courteous at all times.

Laws like the DDA/ADA specify this list must be applied equally to all job applicants. For example, an employer cannot add cash register skills for a waitress job to discourage one applicant with mental illness, but then omit this function in consideration of another person without an obvious psychiatric disability.

Reasonable accommodation on the job The DDA/ADA requires employers to “accommodate” or otherwise change a job so that persons with disabilities can complete all essential functions; the goal is to remove barriers that would prevent people from doing the job because of their disabilities. Accommodations can conceivably apply to any aspect of the job; specific tasks (e.g., how a typist word-processes the boss’s correspondence), work environment (how the work area is constructed), schedule (when the employee reports for work), dress policy (whether any special clothes need be worn), and co-workers (whether any changes can be made to fraternization rules). An attempt at a more complete list of accommodations is provided in the next section. The DDA/ADA and related statutes stipulate these accommodations need to be reasonable; they are not to cause undue hardship on the employer. Employers are only likely to follow through with a job change if the change does not overwhelm their resources. Undue hardship, according to the law, means “an action requiring significant difficulty or expense.” Specific accommodations are considered to be “significant” depending on the nature and cost of the accommodation, the overall financial resources of the facility, and the number of persons employed by the company. Generally, the government expects large corporations to be better able to make reasonable accommodations than small, “mom and pop” operations. This does not mean small companies can ignore

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the requirement for such accommodations, only that they may not be expected to make such large changes. Despite the attempt to define what is meant by undue hardship, the definition is vague and can be interpreted in different ways by employers and job applicants. Advocacy groups and business organizations have been struggling with this idea in courts across the European Union for the past ten years and probably will continue to do so for decades to come. However, a brief review of some of the accommodations listed in the next section shows governments, and now the business world, are prepared to make some sizeable changes in work practices to accommodate persons with psychiatric disabilities.

Examples of reasonable accommodations Laws from the international theater similar to the DDA/ADA specifically state that reasonable accommodations are determined on a person-by-person basis. Hence, it is up to the employer and person with psychiatric disability to work out the kind of job changes that will help that person become a successful employee. Because this activity is governed by law, persons with disabilities and employers might approach it like a court battle; two adversaries fighting for the best advantage. Better is the approach where both parties keep the overall goal in sight: hiring a person who will become a competent worker. It is in the employer and the hired person’s interest to work together to find the best accommodations. Collaboration, not court battles, is the sign that reasonable and effective accommodations are being put in place. At first, Mr. Mahmoud thought my requests for reasonable accommodations were just a way to get a lighter load on the job. He said he was afraid of getting sued and so he was going to make some changes. But he didn’t like it. Frankly, his attitude pissed me off. After all, I only wanted the kind of accommodations which the law guarantees. Then we met with a job counselor, Ms. Hsuing. She pointed out that the purpose of reasonable accommodations was to make sure I was successful on the job. Mr. Mahmoud liked the sound of this. And his view about reasonable accommodations seemed to change. Instead of begrudging my requests for help, he actually sat down with me and brainstormed the best ways to do my job.

Table 5.1 lists some reasonable accommodations that have been provided persons with psychiatric disability. They are grouped into seven categories: job restructuring, sick time, modified or part-time schedules, modified work place, modified policies, supervision, and reassignment. Table 5.1 also provides examples of each category. We discuss overall implications of those categories here.

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Table 5.1 Some examples of reasonable accommodations made for persons with psychiatric disabilities. Example Reallocating marginal job functions

Sick time

Permit the use of accrued paid leave or unpaid leave for treatment

Modified or part-time schedule

Change the work schedule

Modified work place

Provide room dividers or other soundproofing and visual barriers to decrease distractions Move a person away from noisy machinery or high traffic areas which may be distracting

As part of Sally’s secretarial job, she was supposed to shred confidential documents. This was not an essential function and the machine scared her. Therefore, this duty was given to someone else. Sarah needs three weeks off to recover from a relapse. She has accrued two weeks of paid leave so the employer will need to provide another week of unpaid leave. Abdul wants to change his start time from 8 AM to 9 AM. His medicine makes it hard for him to wake on time. He will still work his full 8 hours. Sashiko wants to change her full-time job as a stenographer to half-time, at least for the next six months. She is not able to handle the demands of a full-time job because of recurring panic attacks. Of course, she would only get paid for four hours of work each day. Office partitions were put around Marty’s desk so he was not distracted by the sales department. Delores’ office was moved to the back, away from the reception area, so she was not distracted by visitors.

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Job restructuring

Permit an individual to wear headphones that block out distractions Work at home

Change work policies that govern personnel

Supervision

Supervisors adjust feedback style, including changes in communication and extra training materials Provide a job coach to offer counseling and support on the job

Reassignment

Provide a job reassignment to another position whose essential functions more closely parallel the skills of the employee with disabilities

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Modified policies

Giovanna wears headphones so she is not bothered by phones ringing throughout the day. Boris completes much of the computer work for his job at home. In this way, he does not have to deal with the social anxiety of working with other employees. Bert is permitted to take detailed notes during sales meetings even though other staff are not. Danielle has a soft drink at her workstation for the dry mouth that results from her medication. Barack wants to have the radio on in his office. The soft music relaxes him. Helene receives daily 10-minute feedback from her supervisor. Juanita was given illustrated instructions on how to run the packing machine. Mordechai is visited on the job by a coach from the local rehabilitation center. The job coach provides support and counseling on work-related issues. Brunetta was moved from clerk typist to telephone reception because she found these tasks easier.

Note: Don’t forget: all these accommodations can be arranged if they do not cause undue hardship to the employer.

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Job restructuring frequently entails shifting work responsibilities. The DDA/ ADA says employers should be open to moving workers around to fill nonessential parts of a job. For example, Sally had personal difficulties working with the shredder which was needed at the firm to dispose of confidential documents. Since it was not an essential part of her secretarial job, she asked to be relieved of it. This kind of reallocation means the employer must find someone else to do the job; Margaret was assigned shredding duties at the firm. One way to offset what could appear to be an unfair distribution of work would be to trade these kinds of non-essential functions. In this case, Sally was given some of Margaret’s photocopying work. Some persons may need sick time to take suitable advantage of the full range of treatments for their disabilities. Sick time may be either paid leave (sick or personal days that are accrued according to normal company policy) or unpaid leave. Some people who need extended periods away from work may combine both paid and unpaid leave to receive services. Typically, employers are not permitted to penalize or terminate their workers for using paid and unpaid leave for services related to their disabilities. In fact, in many cases employers need to hold open the person’s job so he or she has a position to return to. Some changes in the work environment are suitable accommodations. Adjusting work schedules may be useful. Many persons with psychiatric illness have sleep problems that result from the illness or from medications prescribed to treat the illness. These persons may work more effectively if their start time is delayed to later in the morning; of course, the person is still expected to work his or her full eight hours. Other persons might benefit from part-time hours. This accommodation may require the employer to break up a full-time job into two part-time positions. Some disabilities are better served by simple changes in the physical environment. Many persons with serious mental illnesses such as schizophrenia have difficulty concentrating on the job. Strategies like room dividers, moving away from high traffic areas, or permitting headphones can help people control distractions. Some persons might also be able to accomplish the essential functions of their jobs at home. Many office jobs can now be accomplished by computer and phone modem; people could easily set up workstations in a spare bedroom to complete many of their duties. Sometimes, change in work policies are useful accommodations. Policies are needed in work settings to guide employees on matters related to typical work behavior. .

Don’t take notes during sales meetings. We do not want this information to get out to competitors.

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Don’t bring beverages to your desk. They might spill and damage the computers. No radio playing. It could distract your colleagues.

Sometimes, exceptions to these rules might help a person with psychiatric disabilities meet the essential functions of a job. .

.

.

Bert is able to pay better attention by taking notes during sales meetings. Of course, he’s responsible for making sure these notes are locked up afterwards. Danielle has a dry mouth from the anti-psychotic medication she takes each morning. Keeping a can of pop next to her workstation helps. She has it in a special holder so it does not spill. Barack is greatly soothed by listening to the religious radio station. He has a private office and keeps the volume very low so it does not disturb others.

Supervisors are an essential part of success for any employee. As such, they are an important source of reasonable accommodations. Supervisors may need to examine the frequency and manner with which they provide feedback. They may also need to provide more or different kinds of instruction related to the new job. One kind of supervision that is a useful accommodation for many persons with psychiatric disability is the job coach. Some qualities of good job coaching are summarized below. Job coaches: . . . . .

provide their services on the job; represent the interests of the person with disabilities; provide support and counsel; mediate between boss and employee; provide services as long as required, for years if needed.

The purpose of job coaching is to provide the guidance and support which persons need to participate competently in their job. The best way for a coach to determine how new employees are doing is to visit the person on the job. Hence, most job coaches provide their services where the person works. This means the employer needs to open his or her doors to daily visits from the coach. Some people report that a visit from their coach on the job is embarrassing; it further adds to the stigma they already experience from co-workers. In these cases, job coaches may wish to meet the new worker in other settings that are convenient to the worker; for example, at the coffee shop down the block from the factory about a half-hour before the shift starts.

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Job coaches are hands-on people. They may get between the employee and supervisor on small issues regarding how to improve the person’s work. They may actually pitch in for periods of time to help the person through a tough period. I had a stock job at a supermarket for about a year when my symptoms came back. I was able to get to work every morning but I was really dazed by the new drugs. Luckily, Dave – he’s my job coach – was seeing me at work. A couple of times, he actually uncrated some canned fruit and helped me get it on the shelves. He was a crutch, but without him, I might not have gotten through that period.

Job coaching can be an expensive endeavor requiring the services of an outside professional. Who pays for the job coach? Many local governments have monies from their “Office on Disability and Rehabilitation” which provide funds for job coaching. Typically, the local governmental entity contracts with a private mental health agency to provide these services to a specific individual with disabilities. In the past, these services were provided for a relatively short time. For example, a person with mental illness might receive job-coaching services for six weeks; the Office of Disability and Rehabilitation assumed the person would be an independent worker at the end of that time. Most advocates point out, however, that coaching services are needed for a longer time, given that most recipient of services for severe mental illness had been struggling with their disabilities for years. Some governments are now providing job coaching for months and even years. The last type of accommodation in Table 5.1 is reassignment. Some people may excel after moving to another job within the company, positions with essential functions that differ from the job for which they were hired. This kind of accommodation is only possible in large companies which have many different positions for personnel to move through. Readers need to keep in mind that accommodations will have an impact on the company. Hence, accommodations are only likely to be applied if they do not cause undue hardship. This is where negotiation and collaboration needs to occur between worker and employer. Both parties need to be open to considering different ways to change the work environment so the person can be successful. This kind of problem-solving is not accomplished in a one-time, hour-long meeting between boss and employee. It requires a commitment for repeated discussions and adjustments so the employee can best accomplish essential functions. Keep in mind, however, that this kind of effort – helping employees to work effectively – is not unique to persons with disabilities. Every worker, be they with or without disabilities, requires active and ongoing support from management. This is what personnel and human resource departments are for!

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Disclose to obtain reasonable accommodations According to statutes like the DDA/ADA, persons with psychiatric disability must ask for a reasonable accommodation to receive it. This can be done at any time in the course of the person’s work with the company: when hired, during orientation, or ten years later. The request for accommodation does not have to be in writing. In fact, a friend or family member can ask for reasonable accommodation on a person’s behalf in certain circumstances; for example, Ferdinand was hospitalized for an unexpected relapse and his wife called the employer to request unpaid leave. Under the DDA/ADA, employers have the option of checking into the nature and extent of an employee’s disability in terms of the accommodation. This might include questions about one’s psychiatric history and permission to speak to one’s psychiatrist or other mental health professional. This permission is limited to discussing the nature of the disability and reasonable accommodations that would help the person to be successful on the job. Bosses cannot go on a fishing expedition and ask unlimited questions about one’s private life. Moreover, employers have a legal responsibility to keep all information they discover about a person’s disability confidential; it can be released to no one – in the office or to anyone else in the world – without the person’s written permission.

On-the-job conduct and direct threat Persons with psychiatric disabilities do not seem to have any more conduct problems than their peers. Nevertheless, circumstances may arise when an employer needs to discipline a worker with psychiatric disability. Some of these situations are covered in statutes like the DDA/ADA. Perhaps most interesting is the realization that employers may discipline workers for a mishap that results from their disability. For example, a person who shows up late for his assigned shift (because he has trouble waking due to his new medication) can be penalized. But isn’t this contrary to reasonable accommodations? Aren’t employees with disabilities supposed to receive special considerations at work? The intent of the DDA/ADA is to be prospective. Reasonable accommodations are set up to handle future problems: . . .

How do I handle my schedule so I do not come late to work? Can I take notes in next week’s meeting so I don’t forget what was said? I have terrible dry mouth. Can I bring a drink to my workstation?

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They are not meant to be excuses for past problems. “I was late for work today because I’m manic depressive.” This is not protected by the disability laws. One piece of on-the-job conduct is specifically discussed in the DDA/ADA: direct threats. Employers may refuse to hire a person with disability if they have reason to believe the person poses a direct threat to the physical well-being of others in the company. Obviously, concerns about direct threat are especially sensitive to persons with mental illness given the frequently cited stigma about dangerousness. Disability laws like the DDA/ADA offer some protections against unjust applications of direct threat. Excluding persons from work based on a judgment of “direct threat” must represent an individual assessment of problems that suggest danger to others. A diagnosis of mental illness is not sufficient to assume persons with psychiatric disability are a direct threat; nor is a history of past violence. An expert in mental illness (a psychiatrist or psychologist) needs to determine whether the person is likely to be harmful to peers if hired into the new job. Keep in mind that a person who is judged to be a direct threat needs to be evaluated some months later should he or she reapply for a position.

What to do if a DDA/ADA violation occurs Employers might violate the DDA/ADA in four ways; these are briefly listed below. Employers might discriminate against persons with psychiatric disability by refusing to hire them because of their disability. Most employers are unlikely to refuse blatantly to hire someone because of their psychiatric history. They probably will not say, “I’m hiring someone else who isn’t crazy.” Instead, job applicants might suspect this kind of discrimination if the interviewer asks questions about mental health experience and quickly cools after discovering a past history of psychiatric disorder. Four ways employers might violate the DDA/ADA are: . . . .

Not hire someone because of psychiatric disability; Limit or otherwise segregate new employees with psychiatric disabilities; Not provide a reasonable accommodation; Penalize the person after asking for or obtaining a reasonable accommodation.

A more subtle way to violate the DDA/ADA is through limitation, segregation, and classification. “I didn’t want to hire Mary Beth, but I had to because

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of the DDA/ADA. I’ll just put her up on the second floor away from the rest of the sales pool so she doesn’t bother anyone.” Employers are not permitted to treat persons with psychiatric disabilities as second-class citizens. Employers must provide the same range of opportunities and benefits as all others in that job classification. They cannot exclude insurance benefits, opportunities for promotion, or future incentives. Nor can they segregate persons with psychiatric disabilities away from others. A third way to violate a law like the DDA/ADA is failure to provide reasonable accommodation. Reasonable accommodations, by definition, are those which benefit the employee and do not overwhelm the financial or other resources of the company. Hence, failure to provide a reasonable accommodation can be construed as violating the DDA/ADA and related laws. Keep in mind, however, that employers who offer another accommodation in place of the “reasonable one” identified by the person with psychiatric disability may be fulfilling their responsibilities in terms of the law. A final violation of laws like the DDA/ADA is exacting retribution for reasonable accommodation. Employers may not penalize persons with psychiatric disability for asking for or otherwise obtaining a reasonable accommodation or other protection other the DDA/ADA. “Okay, I’ll move you to a quieter location in the office. But you have to start two hours earlier each day.” What should a person do who has experienced work discrimination as described here? Below is a list of steps which the person should consider to rectify the situation. The best place to start is with employers themselves. Issues regarding substantial limitations, essential functions, direct threats, and reasonable accommodations are complex. Perhaps a violation occurred because either the employer or person with psychiatric disability is unclear about the DDA/ADA. That is why earlier in this chapter we believed the best way for employers and persons with disabilities to make use of the DDA/ADA and related statutes is through collaboration rather than court battles. Responses to violations of the DDA or ADA: . .

Talk to the employer. Talk to a knowledgeable group for: T advice and support; T advocacy; T mediation; T litigation.

A simple question to the employer about why a specific accommodation was not provided, or whether a change in time off policy was a reaction to them, might quickly resolve misunderstandings. We agree that this kind of

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assertiveness can often be difficult; the employer is in a position of much greater power on the job, making these kind of frank discussions uncomfortable. Seeking out the guidance and support of a knowledgeable group might help. The Equal Employment Opportunity Commission (EEOC) in the United States is one group that provides useful advice. Several of the consumer/ advocacy groups in the Learn More About It section can also be useful. In addition to being knowledgeable about relevant disability laws, these groups have walked in similar shoes and may be able to offer useful support. At this point, the goal of guidance and support is not to prepare for battle with the employer. Rather, it’s to gain perspective on the difference in opinions that seems to be present between employer and employee. In the process, the person with disabilities might learn ways to approach the employer in a mutually respectful way to resolve differences. Unfortunately, there are cases where employers are either knowingly discriminating against persons with mental illness or do not care about this discrimination when informed by others. In these situations, stronger responses are needed besides direct communication with the employer. Government ombudsmen may be willing to advocate on the person’s behalf. Advocacy from a nationwide government agency can frequently motivate employers. I’ve been running this bakery for the past 20 years and I’ve seen all kinds of rules and regulations. I didn’t think this DDA stuff really mattered . . . until the Feds called. I then sat down with Jeffrey (my employee with psychiatric disabilities) and we talked about reasonable accommodations.

Sometimes getting the attention of an employer through an advocate’s phone call may not be enough. Some groups offer mediation. They will sit down with the employer and person with psychiatric disability to resolve DDA/ ADA questions between them. This may mean both sides come to a better understanding of accommodations that truly help the person with disability accomplish the essential functions of his or her job and do not cause undue hardship to the business. Once again, it is important to remember that mediation is preferred to any kind of court action; in this way, both parties are working together rather than fomenting angry feelings because one set of persons (employer or worker with psychiatric disability) is being pushed into actions which they prefer not to pursue. Ultimately, some people will need the full weight of the courts to keep their rights. Governmental bodies often have administrative courts which can handle some violations. Alternatively, workers can bring claims to civil courts for resolution. In either case, the best place to start with this kind of action is with a legal advisor familiar with this domain of legislation.

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Political action and legislative change We reviewed only one of the major pieces of legislation related to the rights of persons with mental illness; there are many, many others. Elected officials in London are repeatedly considering bills relevant to the opportunities of persons with psychiatric disabilities. In the past year alone, the British Parliament and US Congress considered major legislation: that improves social security supports for persons with mental illness who are returning to work; that provides persons with mental illness more control over treatment, especially within inpatient settings; and that increases spending on research issues related to mental illness. This kind of agenda is not limited to the national government. State and local governments are continuously making laws that impact people with mental illness. Perhaps most salient among this legislation is appropriation bills which direct how mental health and other human service agencies spend monies for services. Ours is a representative government. We elect officials and send them to the Capitol to reflect our interests. These officials are responsive to the opinions of their constituents, especially when citizens organize to get their message out. Hence, another way to influence stigma and discrimination is to change the mind of politicians so they enact policies that are favorable to empowerment and recovery. In this section, we review ways to facilitate this kind of advocacy for a mental health agenda. Most of these suggestions reflect the wisdom of Advocacy Unlimited, Inc., a nationally known political advocacy group for persons with mental illness located in Connecticut, USA.

Effective strategies for lobbying face-to-face When an advocate approaches a legislator or other elected representation for support, it is called lobbying. Using a word like “lobbying” somehow makes the activity sound special, as if only a handful of specially trained “lobbyists” can do this sort of thing. In reality, lobbying is no different from any other effort where a person is trying to convince another of a specific approach to a problem. . . .

“I want my boss to start work 30 minutes later so those of us who take the 201 bus won’t have to run to make it on time.” “I want our pastor to move Bible class to a night that does not conflict with my 12-step meetings.” “I want my legislator to support the new bill that provides more funding for housing for persons with mental illness.”

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These are all lobbying activities. We all have learned skills that help to convince people, as well as approaches which undermine our efforts. Be brief, focused, and prepared. Most government officials are busy and will only have a limited amount of time to discuss the specific issues so it is essential to be punctual. They will appreciate a presentation that is short and to the point. Sometimes, there may be several issues to discuss with the legislator. In situations like this, it is best to remember the old adage “Pick your battles!” – and focus on the one or two things of most concern now. Overwhelming the legislator with several concerns is likely to dilute the message. Interactions with government officials can be further focused by writing down the name of specific legislation which advocates support or wish to have voted down. There may be broad concerns about an issue related to mental health: persons with mental illness should not be forced into treatment.

Better success is achieved, however, when the legislator’s attention is focused on a single bill that addresses these concerns. If laws related to these concerns have already been proposed in the legislature, mention the reference number and formal title which has been attached to it. Today, I’m here to talk to you about House Bill 136, Outpatient Commitment for Mental Illness.

A brief set of written bullet points that can be reviewed with the legislator can be a potent addition to a meeting with one’s governmental representative. Although it is important to give the message in a short and focused way, begin the interaction pleasantly. Have a conversational opener that starts friendly. Also, consider how many people will accompany the advocate to the legislator’s office. There are pros and cons to small versus large groups. A small group can be more cordial and less intimidating. A large group suggests representation of a vast number of people. If going in a group, be clear who is going to facilitate the discussion with the official. Who will start off and break the ice? Which member of the group will discuss what point on the bullet sheet? Research suggests that persons with mental illness telling their own stories have the most influence on officials. Hence, groups made up of well-prepared consumers are likely to be more effective than presentations by professionals speaking for their clients. Listen as well as talk. Communication is a two-way street. Senators and representatives may have useful information too. Moreover, government officials are likely to work on behalf of the anti-stigma agenda if they believe advocates are respecting their view. Do not argue with the politician! Sure, it is

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likely that there will be some disagreement. But remember, the goal is to convince the person of specific policies and gain their support. Arguing or bullying won’t gain support. Be persistent. Lobbying a legislator is only the first step in gaining support. Opinions are made over the long haul, not as the result of a one-time meeting. Look for openings to come back with more information. If a question arises for which the group is unsure of the answer, follow up later with a reply. Remember, there are other ways to lobby a legislator in addition to face-to-face meetings – by mail or over the phone are good examples.

Lobbying through the mail or by phone Most of the rules listed above also apply to writing letters and calling: be brief, focused, and respectful. When writing, use own thoughts and words. Sometimes, people join letter writing campaigns sponsored by a group; for example, participating in a stigma-busting effort promoted by a mental health advocacy group. The group may provide a standard set of statements to guide letter writing. Legislators, however, prefer this standard message in one’s own words. That way, they are sure the message is from a real person with a personal opinion. Make sure the letter is legible, signed, and has a return address. Citizens are likely to have the greatest impact on representatives and senators from their district; that is, citizens who could conceivably vote for them in the future. A letter is suggesting to the government official that the writer is his or her constituent by putting down the address. Moreover, the legislator is likely to reply, and will only do so if a return address is provided. Follow up the original letter with notes. Lobbying by phone can be effective if a vote on a key issue is pending. Typically, an aide will pick up when the representations office is called. A simple statement asking for the legislator’s vote on a specific bill will suffice. Usually, aides keep a running tally on phone calls: the numbers of for and against votes called in by constituents.

Getting started on fighting discrimination We have reviewed only a handful of the laws and political activities that are relevant to the opportunities of persons with psychiatric disabilities and

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advocacy groups have been struggling to gain the rights of their constituency (persons with mental illness) for decades. If moved to the cause, consider joining a group with similar interests. If there is none in the area, reach out to an interesting group elsewhere and enquire about establishing a local chapter. Like-minded people will gather.

6

Stigma as Social Injustice

You cannot shake hands with a closed fist.

Indira Gandhi

Much of what is described in our book suggests mental illness stigma is largely a phenomenon to be studied and treated, much like other foci of mental health research. As such, advocates and investigators craft discrete strategies to erase stigma. These strategies develop in the same kind of atmosphere that describes evidence-based pharmacology and psychosocial interventions prominent in psychiatric rehabilitation. Disease-based paradigms and community psychology are the roots of the perspective. However, if we have promoted this kind of perspective in understanding stigma, it would be our mistake and a major distraction from the essential message. The stigma of mental illness is first and foremost an issue of social injustice! As such, it needs to be understood in the same light as other forms of prejudice and discrimination that have hounded the modern world: racism, sexism, and ageism to name a few. As social injustice, mental illness stigma is largely the responsibility of the societies that create and maintain it. Framing mental illness stigma as absence of social justice reminds us that persons with mental illness are just that: people. As people, they are entitled to the same human rights enjoyed universally in their community and culture. So, what is the point of research in all this? After all, Gandhi upset a world empire to free India. Desmond Tutu embraced peace and respect to reset the

Challenging the Stigma of Mental Illness: Lessons for Therapists and Advocates Patrick W. Corrigan, David Roe, and Hector W. H. Tsang Ó 2011 John Wiley & Sons, Ltd

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injustices of South Africa. Martin Luther King, Jr. shook up American racism in the 1950s and 1960s based on the sweat and toil of protest, not the knowledge of science. Is there a true place for research and investigation in this formula? No doubt their legacy is a watershed moment in erasing prejudice. Fifty years later, however, Westerners, in fact most of the world, still struggle with the more subtle barriers that define racial lines and are the legacy called modern racism (Dovidio & Gaertner, 1998; McConahay, Hardee & Batts, 1981). To this end, social science may have a role. Consider an example. Classic social psychological theory views contact between minority and majority groups as one way to significantly decrease prejudice and discrimination, especially when contact is individualized, equal-status, and cooperative (Allport, 1954). The potential of this idea is momentous. Consider it in terms of educating our children; racially integrated schooling seemed to hold great promise for diminishing racial prejudice at its roots (Schofield, 1995). Unfortunately, short-term and positive effects expected of contact at integrated schools are unfounded in most research (Aboud & Levy, 2000; Stephan, 1999). Although immigrant students seemed to diminish prejudice, the European majority actually appears more negative. Additional research, however, identified mediating factors that seem to augment contact’s anti-prejudice effects. Prominent among these is positive peer relationships (Ellison & Powers, 1994; Miller, 1983; Patchen, 1983). Having a cross-race friend as a child leads to more positive interactions in adolescence and augments contact effects right on through into adulthood. Hence, school officials must not only bring together majority and minority children in the classroom, but need to foster positive interactions that lead to friendship. This example suggested social science plays a necessary role in informing a community’s policy for stopping the effects of prejudice. How does this play out in the stigma of mental illness? Four examples are provided here that illustrate seemingly obvious approaches to stigma change for mental illness which might be limited despite their intentions, and research might suggest solutions to these restrictions.

Eliminating the symptoms does not erase the stigma Many have argued that curing mental illness is a sensible and straightforward approach to stigma change. As a person’s disabilities vanish, prejudice against him or her also disappears. As individual triumphs multiply, the general public comes to know mental illness as conquerable and stigma as wrong. Proponents of the eliminate-the-symptom approach note how the stigma of other

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prominent health conditions, such as leprosy, has been erased because the illness has seemingly been eradicated. No longer does the wrath of social disapproval come down on people with the disorder. Research in this regard, however, is not so sanguine. Investigators in developing countries might disagree with both the assertion that leprosy has been controlled or that the stigma of people with the illness is minimal (Krishnatray & Melkote, 1998). Others who promote “treating the stigma away” argue that what is labeled stigma may actually be a “normal” response to frightening behaviors exhibited by people who are psychotic (Torrey & Zdanowicz, 2001). In this light, biases reflect shortfalls in the treatment system, that people with mental illness become violent, for example, because they did not receive appropriate psychosocial services. Connecting violence and system failures yields resounding call for more and better treatments. “Laws change for a single reason, in reaction to highly publicized incidences of violence. People care about public safety. I am not saying it is right. I am saying this is the reality” (Jaffe, 1999). Stigma wanes with reduction in criminal behavior, which results from appropriate treatments. The focus on violence not only has little effect on the anti-stigma agenda, but may actually worsen prejudice’s impact. In one study, we randomized research participants to a discussion about dangerousness and mandatory treatments or to a discussion about the myths and facts of serious mental illness (Corrigan, Watson, Warpinski & Gracia, 2004). As one might expect, people completing the “dangerousness and mandatory treatment” condition showed worsening stigma related to fear and violence. Some proponents of an eliminate-theviolence campaign believe this is a necessary evil, however, to get more resources for dangerous people with mental illness. Findings from our research also showed that participants in the dangerousness-education condition showed more reluctance to help people with mental illness and a greater tendency to avoid them. Treating stigma by hiding symptoms has a counterpoint in the history of racial prejudice; namely, racism can be fought by becoming colorblind. Some from the 1960s believed that Westerners should be oblivious to outward signs that distinguish White from other ethnic groups; to being colorblind as it were. Instead, people should identify and cherish a common set of supra-racial values that serve as the benchmarks by which an individual’s worth is judged. According to the colorblind principle, Africans should not organize their sense of heritage in terms of Black expertise. Instead, people of color should concern themselves with values that transcend race. Unfortunately, the search for these supra-racial values frequently led to Western European standards so that those of African descent, for example, were actually being judged by European and North American values. For example, beautiful dance and exquisite music are defined by classical European music and not the drumbeats and shrill voice of

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many Asian and African cultures. In fact, subsequent experiences of Africans and other ethnic minorities living in the United Kingdom and elsewhere in Europe showed that proudly clutching values defined by their culture is the essential way to address racism and ethnic biases. There is a parallel in the stigma of mental illness. The notion of erasing mental illness implies that being “normal” is somehow better. This is a complex issue, however. In some ways, mental illness groups are different from ethnic ones in one essential quality. The primary goal of being in the mental illness group is to get out of it. The goal endorsed by many readers is to erase symptoms and help the person become, for lack of a better word, normal. Still, a disease orientation to mental illness stigma misplaces responsibility for prejudice. It suggests that people who are not hiding their symptoms are somehow to blame for them, perhaps because they are not fully participating in treatment. Additionally, it dismisses people who assert they are recovered even though some significant symptoms remain. Answers to the conundrum are not facile. We need to be sensitive to issues that suggest getting rid of stigma by erasing symptoms because it creates social dilemmas in their own right.

Presenting mental illness as a brain disorder has its limitations A corresponding approach to eliminate stigma is hailing mental illness as a brain disorder. This kind of perspective challenges the notion that people with mental illness choose to be mentally ill. Instead of having a weak moral backbone, people have a health condition that is physiological in origin, framing mental illness in terms of medical research, often as genetic models of mental illness. The public stops blaming people for their mental illness as they learn this information. However, research on “Mental illness is a brain disorder!” is mixed. Read and colleagues (1999, 2001) have found that members of the general public who endorse biologically causal beliefs about mental illness are actually more likely to agree with negative perceptions that contradict the previous assertion. These negative perceptions include the view that people with mental illness are dangerous, anti-social, and unpredictable. A study completed by Phelan and colleagues (2002) helps to understand these assertions better. Genetic models of mental illness, which suggest people inherit mental illness from their parents, are indeed becoming fairly well known among the general public. Western populations have at least some awareness of the human genome. Despite this, viewing mental illness as a genetic disorder leads to paradoxical effects. On one hand, people who endorse

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genetic causality are less likely to blame individuals for their mental illness, an important outcome. However, this same group is more pessimistic that people with mental illness will recover. Onset blame is an attribution or reason why a condition emerges; what causes it. As a result of “mental illness is a brain disorder campaign,” public ideas have evolved from “the person causes their mental illness because of weak moral character” to “it is a physiological disorder which cannot be controlled simply by self-exploration.” Unfortunately, Phelan et al.’s work also suggests offset blame (what the person is doing to stop the condition) remains unchanged or actually worsens in people who learn about biological origins of mental illness. As a result, prognosis for serious mental illnesses is dour. The physiological bases of psychiatric disorder are hard wired, are built into the illness, and are therefore difficult to ameliorate. As a result, people with serious mental illness are not doing all they might to get better. Coercive treatments are necessary to assure that people with serious mental illnesses are shuttled into services that yield the most socially appropriate person. These mixed findings have important implications. First, we need to be vigilant to unintended effects that may arise from anti-stigma efforts, the nasty side effects of a strategy that not only undermine any positive impacts, but actually worsen public prejudice and discrimination. Educating the population to “mental illness is a brain disorder” may yield sour judgments about prognoses and treatment participation. Second, we must be alert to services research of this kind that concludes with simplistic yes/no decisions; for example, no, educating people about mental illness being a brain disorder is false and therefore should not be used. Actual findings about education and brain disorder might suggest direction for adjusting a strategy, or perhaps considering how it might interact with other approaches. Some of the recent research by our group suggests an interaction of educational (which may include the brain disorder fact) and contact approaches may yield the best effects on stigma change.

Protest has rebound effects on attitudes Framing discussion in terms of social justice in the same light as racial issues implicates protest as an important approach to challenging stigma. After all, it was nonviolent protest that led to some of the biggest victories in civil rights campaign. As we discussed in Chapter 3, however, protest is a poor way to try to change attitudes. If, for example, the goal is to make employers open to hiring people with serious mental illness, gathering them in a group, highlighting the

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immoral character of stigma, and instructing them to stop thinking in such ways will only make stigma worse. What is the difference between protests related to mental illness stigma versus racism? Protest against racists like many Southern Americans of past generations probably did not result in bigots denouncing prejudice. Rather, it was protest effects on behavior that produced most potent changes. In this light, protest may be a “punishment”; negative media and the presence of the US National Guard were fairly aversive requiring Southerners to stop discrimination in order to stop government opprobrium. Protest effects might also have resulted in response cost. Civil rights advocates learned that people of color were a social force with which to be reckoned. Concerted moratoria taught business people to suppress their bigotry in order to regain an important share of the market. Suppressing discrimination became good business. There is evidence of the potent effects of disapproval and economic threats in mental illness stigma change. In the Spring of 2000, the ABC network in the United States introduced an hour-long drama called Wonderland. In the first few minutes of the debut episode, a person with serious mental illness shot five people and stabbed a pregnant doctor in the belly with a hypodermic needle. Advocacy groups were dismayed to say the least and wrote letters to the show’s producers. Unfortunately, networks view any feedback, even disapproving, as evidence that people are watching the show, the number one metric of success in television. The advocates then wrote to the show’s sponsors saying they would stop using sponsor products until action was taken with the show. ABC pulled the show off the air after only two episodes, opting to throw out millions of dollars of unseen programs rather than risk sponsor ire for the threatened economic boycott.

Parity not pity Research suggests programs that focus on the biological causes of mental illness may increase pity for people with mental illness which may lead to positive results (Corrigan, Rowan et al., 2002; Watson, Otey et al., 2004). Weiner (1995) argued that sympathetically viewing a person as victimized by a health condition is associated with willingness to provide help to that person. Research has shown that members of the general public who pity individuals with mental illness are more willing to offer a helping hand in day-to-day exchanges as well as assign more resources to relevant practices; for example, they back governmental programs that further support community-based housing for homeless people with serious mental illness (Corrigan, Markowitz

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et al., 2003). Pity, however, seems to produce negative effects as well. Viewing people with mental illness as pitiful is likely to be associated with what we earlier explained as benevolence stigma; that is, because people with mental illness are unable to handle life’s demands competently, they need a benevolent authority who can make decisions for them. The authorities commonly include the person’s parents and/or mental health professionals, especially psychiatrists. Many advocates have replied that a major problem with the mental health system is disempowering practices that prevent people with psychiatric disabilities from pursuing their life goals (Chamberlin, 1978). In this light, most people with mental illness services are seeking parity, not pity. This is parity in terms of self-determination; namely that people with mental illness want the same opportunities, and the same control over these opportunities, as all adults.

Implications of a social justice perspective Scientific assertions like those that govern most of this book seem to make poor bedfellows with what we essentially argue in this chapter: an ethical or legal assertion claiming the stigma of mental illness is unjust, unfair, improper, and dishonorable. An ethical perspective is “should not” based. The public should not endorse stereotypes, should not promote prejudice, and should not pursue discrimination. Or put more positively, people should promote opportunity, support empowerment, and facilitate goals. Contrary to this kind of justice paradigm, the research enterprise has more equivocal voice. In several places we recommended that the stigmatized person should consider costs and benefits of specific anti-stigma effects, a tactic based on the supposition that specific decisions in response to stigma are neither obvious nor unidirectional. The distinction between outcome (public stigma is unjust) and process (how the just goal is obtained) may help to reconcile the two points here. Advocates are insistent that stigma is heinous and certain that it must be stopped. Processes define approaches to stopping stigma; direct and powerful attempts such as trying to change population-based approaches by social marketing versus unhurried and deliberative efforts seeking narrower and more immediate effects such as convincing employers to hire people with mental illness and provide them reasonable accommodations. In this light, anti-stigma programs and considerations of costs and benefits are tactics to guide the advocate so real change in prejudice and discrimination is achieved. Steps to attain these goals are flexible, especially in terms of context. How is stigma challenged given the targeted group: for example, employers or

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property owners? What attitudes specific to targeted groups need to be addressed? “People with mental illness will undermine work productivity because co-workers will replace careful attention to their job with vigilance to peers with mental illness.” How does targeted stigma vary by industry sector? Do people working in health settings, for example, respond to co-workers with serious mental illness differently from those in the technical trades like plumbing or carpentry?

What about the stigmatizer? If stigma is heinous and foul, what about the stigmatizer? Are they evil-doers and sinners who must recant their ways or face punishment? Words like injustice, evil, and sinner are foreign to the social strategies and evidence-based approaches promoted earlier in this book. Nonetheless, there are clear examples of unjust and immoral people. Most readers would agree that Nazi Germany’s actions against Jews or White supremacist responses to Africans are examples of this utter sense of injustice. Advocates, in fact the overall population, respond with righteous anger and accept nothing but total extermination of these views. Is the case for the mental illness stigmatizer equally severe? They might say, “People with mental illness are to blame for their disorder and dangerous to interact with.” This in some ways is the same kind of falsehood as the stereotypes made about Jews and Blacks. Agreeing with mental illness stigma can lead to significant loss of opportunity for people with mental illness; for example, being locked away on a psychiatric ward against one’s will. In some ways, mental illness stigma may be worse, given that it seems to be currently more widely endorsed than the stigma of racism against people of color. As we discussed at the very beginning of the book, all the reader need do next time in the car is to listen to talk radio and count the number of times in which callers use words like crazies, nutters, and psycho. Still, there seems to be a desire to excuse public use of mental illness stigma where racist comments would be quickly smashed. We might dismiss mental illness stigma as ignorance rather than sin. What is one reason for this difference: the vitriol, hatred, and disgust to which public stigma addresses a group? We even have words for this – hate crime – and terribly malicious examples. Consider the case of Matthew Shepherd, a gay man from the Rocky Mountain region of the United States. He was kidnapped, tied to a fence, and horribly tortured until he died. This is bigotry sure, though bigot sounds too benign for acts like these. This is socially reprehensible, an act that in no way can be permitted to repeat itself. Most people would agree these villains should be caught, tried, and punished to the highest degree allowed by law.

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Very rarely are there crimes like this against people with mental illness; most of what we consider stigma seems to be based on misunderstanding rather than on hate. These differences are not meant to excuse people who endorse or otherwise promote mental illness stigma. However, distinguishing the mental illness stigmatizer from racists and sexists suggests there are more pliable ways to address stigma. Instead of angrily reacting to this kind of prejudice, advocates sometimes consider less vociferous replies. Earlier in the book we proffered education and contact as methods for changing mental illness stigma. We contrasted them to protest, which seems to be a more forceful reaction to the stigmatizer. We expressed caution about protest as a way to change attitudes, perhaps yielding rebound effects or worse attitudes. Still, sometimes advocates decide a slow and forgiving approach to the stigmatizer will not do. They are righteously angry and want to adopt an approach that does not succor the stigmatizer but instead demands change now.

We have only started to understand the problem What a strange place to end the book – a litany of bad intentions that seem to perpetuate the stigma of mental illness. However, existing programs have begun to impact these stigmas despite these reflections. Work on stigma and mental illness continues to mature on the back of critical considerations such as these. In addition, critical considerations guide advocates towards additional important areas, these not well addressed in our book. For example, many advocates believe targeting children should be an essential priority, stopping stigma before young ones internalize it. The cautions of child psychologists need to be heeded first. Insights of developmental cognitive psychology will point out ages and tasks that need to be incorporated into a child stigma approach. Adults do not have the kind of dominant agents in their lives as do children: their parents or guardians. Experts largely note that any efforts to affect child attitudes and behaviors must recognize parents as the essential variable and include them in interventions. Another area not well developed in our book is family issues. Families and stigma are complex bedfellows. Family members may stigmatize relatives with mental illness: “that son of mine is like all mentally ill folk; just lazy.” They may be the butt of stigma from the public: “Harry is mentally ill because Delores was a bad mother.” Changing family stigma varies depending on direction. Family stigma also reflects the nature of the relationship between the person with mental illness and relative. Parents typically come to mind and are branded

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with opinions like mom and dad somehow caused the illness. Siblings, however, are also included and sometimes marked with the idea that when the person with mental illness relapses, it is because the brother or sister is not assuming their familial responsibility to “be there.” Spouses and children of people with serious mental illness suffer even more specific stereotypes. Hence, development of anti-stigma programs for families depends on insights like these. There are many directions for development and implementation. This book was meant to provide concrete suggestions in this regard. It was also meant to stimulate the reader to consideration and development of new directions of stigma change. Development of new programs needs to include evaluation strategies to examine their effects. Stigma change is an important task! People developing these approaches need to collect some kind of information to find out what works and what does not. Those who are then responsible for providing or funding anti-stigma programs must heed these data to develop even more potent strategies. Advocates may have the skills to make sense of these data themselves or may need to partner with others that can help out. Civil rights have exploded on the world stage during the past century, with progressive and enlightened people recognizing disparities between groups – between Black and White, men and women, old and young, gay and straight – are intolerable. It is the realization of this first principle that has led to protests and other efforts to right the injustice. Unfortunately, civil liberties have not quickly resolved themselves. But the protest is joined and the parade of those unhappy with civil injustice begun. So we need to consider mental illness stigma in this light. Advocates do not yet enjoy the same recognition and support of messages about the stigma of mental illness. But the parade has begun. We reflect some of the successes of anti-stigma strategies for mental illness in these pages. We also want this to be yet another primary step in rallying advocates to tackle this wrong.

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Learn More About It Resources and Chapter References Jennifer D. Rafacz

The aim of this appendix is to provide a list of international anti-stigma programs around the world. This list is not comprehensive, as it only includes sites that are accessible in English and online. Additionally, other relevant information and resources have been provided. There are four different areas of information. 1 2 3 4

Agencies and Anti-Stigma Groups Empowerment and Advocacy Groups Self-help Organizations and Psychiatric Survivors Groups Further Readings

Each entry lists web address and verbatim descriptions that were mostly cut and pasted from each group’s web page mission statement.

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Agencies and anti-stigma groups Africa Mental health information centre

www.mentalhealthsa.co.za/ “We will strive to provide a professional, necessary, and quality service to mental health service providers and consumers. We will focus on psychoeducation, research, and awareness campaigns to promote mental health and address stigma.”

South African Depression and Anxiety Group www.sadag.co.za/ “Celebrating 11 years of mental health and in 2006, the South African Depression and Anxiety Group is Africa’s largest and most recognized mental health initiative. As the nation’s leading advocacy and educational voice on mental health, SADAG has been tirelessly committed to improving the mental health and well-being of thousands of South Africans.”

South African Society of Psychiatrists (SASOP) www.sasop.co.za/ “The Society is also actively involved in South Africa and internationally to de-stigmatize mental illness and is fighting against discrimination against people who suffer with mental illness.”

Asia Silver ribbon Singapore www.silverribbonsingapore.com/index.php/ “Our Mission: To combat mental health stigma, encourage early treatment and facilitate integration of people with mental illness within the society through innovative means of promoting mental health literacy.”

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Australia Like Minds, Like Mine www.likeminds.org.nz/ “Like Minds, Like Mine is a public education programme aimed at reducing the stigma and discrimination faced by people with experience of mental illness.”

Sane Australia www.sane.org/stigmawatch/ “The SANE StigmaWatch program monitors the Australian media to ensure accurate and respectful representation of mental illness. StigmaWatch voices community feedback about representations within the media that stigmatize mental illness or inadvertently promote self-harm and suicide.”

Europe Changing Minds. The Royal College of Psychiatrists www.rcpsych.ac.uk/ “Changing Minds is an anti-stigma campaign trying to encourage everyone to stop and think about their own attitudes and behavior in relation to mental disorders.”

Highland Users Group (HUG) www.hug.uk.net/challengestigma_home.htm “The HUG Communications Project was established in 1998 as a result of HUG members clearly identifying the need for active work to challenge stigma and raise awareness and understanding of mental health issues with professionals and the general public.”

International consortium for research and action against health-related stigma (ICRAAS) www.kit.nl/ “The central aim of the ICRAAS is to reduce health-related stigma and its harmful consequences, including discrimination and social exclusion.”

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www.mhe-sme.org/en/ “Mental Health Europe believes that the burden caused by mental illness for individuals, families, and society is too heavy, and that the stigma and taboos are too great to leave mental health development only to politicians and professionals. Mental Health Europe supports the emancipation of different groups in the mental health field in order to establish equal positions between the different parties and to ensure that mental health activities and mental health care really meet the needs of the population.”

Rethink mental illness (RMI) – Spain www.1decada4.es/Ingles/ “RMI attempts to contribute by making mental disorders visible, for them to become known in an objective way, as well as the consequences of stigma. In sum, invites one to rethink our ideas and attitudes regarding mental disorders.”

See me www.seemescotland.org.uk/ “‘See me’ is Scotland’s national campaign to end the stigma and discrimination of mental ill-health. We are an alliance of five mental health organizations and fully funded by the Scottish Government.”

Shift www.shift.org.uk/ “Shift is an initiative to tackle stigma and discrimination surrounding mental health issues in England.”

Talking Minds – Twisted project www.talkingminds.org/ “Twisted is the Talking Minds project that seeks to reduce the stigma of mental illness to eliminate discrimination. Twisted is an acronym and stands for Time We Immobilized Stigma To End Discrimination. Twisted aims to include discussions and debate on areas such as poverty, inequality, some sociological theory, power differentials, and social work to put into context where inequality, stigma, and discrimination can be transmitted. It is hoped that the Twisted project will deliver a balanced and objective viewpoint that

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develops your understanding of the stigma that is attached to: people with a mental illness; mental health services; and people associated to someone with a mental illness such as a family member.”

Time to Change www.time-to-change.org.uk/ “Time to Change is England’s most ambitious programme to end discrimination faced by people who experience mental health problems. Our vision: To make lives better for everyone by ending mental health discrimination. Our mission: To inspire people to work together to end the discrimination surrounding mental health.”

North America Community Network Services www.cnsantistigmaprogram.org/ “The Community Network Service’s Anti-Stigma program is a nationally recognized, consumer-run program, focusing on providing mental health education and support to communities throughout Michigan.”

National alliance for the mentally ill (NAMI) – Stigmabusters www.nami.org/template.cfm?section¼about_stigmabusters “NAMI StigmaBusters is a network of dedicated advocates across the country and around the world who seek to fight inaccurate and hurtful representations of mental illness.”

National alliance for the mentally ill (NAMI) – in Our Own Voice (IOOV) www.nami.org/template.cfm?section¼In_Our_Own_Voice “In Our Own Voice (IOOV) is a unique public education program developed by NAMI, in which two trained consumer speakers share compelling personal stories about living with mental illness and achieving recovery.”

The national Consortium on stigma and empowerment www.stigmaandempowerment.org “The Consortium represents researchers from Yale, University of Pennsylvania, Rutgers and the Illinois Institute of Technology dedicated to under-

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standing and influencing the stigma of mental illness, and empowering strategies that challenge these stigmas.”

National mental health campaign www.nostigma.org/ “Our organization is a nationwide nonpartisan public education campaign that was launched as part of the 1999 White House Conference on Mental Health. We are dedicated to battling the stigma, shame, and myths surrounding mental disorders that prevent so many people from getting the help they need.”

Mental Health Commission of Canada – opening minds www.mentalhealthcommission.ca/English/Pages/default.aspx “The Mental Health Commission of Canada (MHCC) will be carrying out a 10-year Anti-stigma/Anti-discrimination Initiative. This campaign will be the largest systematic effort to reduce the stigma of mental illness in Canadian history.”

Mental Health Foundation www.mentalhealthfoundation.net/ “The Mental Health Foundation encourages, develops, and supports educational campaigns and other initiatives to improve understanding of mental illness and ensure access to quality care. The Foundation is particularly concerned with reducing the stigma of mental illness and encouraging individuals to seek early diagnosis.”

National Stigma Clearinghouse www.stigmanet.org/ “The National Stigma Clearinghouse was created to track negative stereotypes of mental illnesses and to provide concerned activists with information about fighting prejudice.”

On Our Own of Maryland – Anti-Stigma Project www.onourownmd.org/asp.html “The mission of The Anti-Stigma Project is to fight stigma by raising consciousness, facilitating ongoing dialogs, searching for creative solutions, and educating all participants within or connected to the mental health

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community, including consumers, family members, providers, educators, and administrators.”

Resource center to promote acceptance, dignity, and social inclusion associated with mental health (ADS) www.stopstigma.samhsa.gov/ “The US Substance Abuse and Mental Health Services Administration ADS Center enhances social acceptance and inclusion by ensuring that people with mental health problems can live full, productive lives within communities without fear of prejudice and discrimination. We provide information and assistance to develop successful efforts to counteract prejudice and discrimination and promote social inclusion.”

Stamp Out Stigma www.stampoutstigma.org/ “Stamp Out Stigma is a community advocacy and educational outreach program dedicated to eradicating the stigma associated with mental illness. Stamp Out Stigma is unique in its anti-stigma approach, by creating a forum in which individuals with mental illness share their personal experiences with the community at large.”

Worldwide Open the doors www.openthedoors.com/ “The programme will fight the prejudice in all walks of life because it diminishes the quality of life of people with schizophrenia and their families and prevents them from living and working among us.” This is a worldwide program sponsored by the World Psychiatric Association in 26 countries with local action groups in Austria, Brazil, Canada, Chile, Czech Republic, Egypt, Germany, Greece, India, Italy, Japan, Morocco, Poland, Slovakia, Spain, Switzerland, Turkey, United Kingdom, and United States.

Silver Ribbon Coalition www.silverribbon.org “The Silver Ribbon Campaign for the Brain had become an international endeavor and the Silver Ribbon is now seen in Canada, China, India, Japan,

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Mexico, and Singapore. The Coalition is represented by advocates for anxiety disorders, autism, brain cancer, brain injuries, depressive disorders, mental health, Parkinson’s disorder, OCD, and psychotic disorders. The expectation is that the Coalition will grow to include representative individuals and organizations for all brain disorders and disabilities.”

2 Empowerment and advocacy groups Asia Chinese Disabled Persons’ Federation www.cdpf.org.cn/english/ “The China Disabled Persons’ Federation (CDPF) is a unified organization of/for the 83 million persons with various categories of disabilities in China. Headquartered in Beijing, it has a nationwide umbrella network reaching every part of China with about 80 thousand full-time workers. CDPF performs three functions: represent interests of people with disabilities in China and helps to protect their legitimate rights, provide comprehensive and effective services to them, and commissioned by the Chinese government to supervise affairs relating to people with disabilities in China.”

Australia Centre of Civil Society www.civilsociety.org.au/ “The Centre for Civil Society is a social innovation and public policy think tank for the empowerment of ordinary people. It runs events, publish resources, and organize change-makers in federal electorates across the country to empower the following groups of Australians.”

Mental Illness Fellowship of Australia, Inc www.mifellowshipaustralia.org.au/ “The Mental Illness Fellowship of Australia Incorporated is a not-forprofit, grassroots, self-help, support and advocacy organization of people with serious mental illnesses, their families, and friends. Such illnesses

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include schizophrenia, major depression, bipolar disorder, obsessivecompulsive disorders, and anxiety disorders.”

Europe Disability Law Association (DLA) www.discriminationlaw.org.uk/ “The DLA is a non-profit network that brings together a broad range of discrimination law practitioners, policy experts, academics, and concerned individuals and organizations, all united around a commitment to strengthening anti-discrimination law, practice, advice, and education in the UK.”

European Disability Forum (EDF) www.edf-feph.org/ “EDF is the only European platform of disabled people, which is run by disabled people or the families of disabled people unable to represent themselves. EDF’s mission is to promote equal opportunities for disabled people and to protect their human rights, making sure that no decisions concerning disabled people are taken without disabled people.”

European Federation of Associations of Families of People with Mental Illness (EURAMI) www.eufami.org “EUFAMI has 50 member organizations from 28 Countries. Most of our members are national organizations but some are regional organizations. Together, we represent hundreds of thousands of people with mental illness, their family, and carers Europe-wide. We campaign on behalf of millions of people across Europe who are affected by severe mental illness.”

Mind: national association for mental health www.mind.org.uk/ “Mind works to ensure that they have their voices heard, and are treated fairly, positively and with respect. Through our campaigns we push for those who influence change to work with us to bring about improved services, better legislation, protection of legal rights and a more accepting attitude among employers.”

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www.rethink.org/ “Our aim is to make a practical and positive difference by providing hope and empowerment through effective services, information and support to all those who need us. People who use our services and their carers are at the heart of our vision and we believe that all those who experience severe mental illness are entitled to be treated with respect and as equal citizens.”

North America Activity centre for empowerment www.aceweb.host56.com/ “To promote recovery among mental health service users through skill development and empowerment.”

Canadian Mental Health Association www.cmha.ca/ “As a nationwide, voluntary organization, the Canadian Mental Health Association promotes the mental health of all and supports the resilience and recovery of people experiencing mental illness. The CMHA accomplishes this mission through advocacy, education, research, and service.”

The consortium for citizens with disabilities www.c-c-d.org/ “This is a Coalition of approximately 100 national disability organizations who work together to advocate for national public policy to ensure the self-determination, empowerment, independence, integrations, and inclusion of both adults and children with disabilities in all aspects of society.”

National consumer supporter technical assistance center www.ncstac.org/ A resource center for consumers/survivors/ex-patients. It is a consumer-run organization across the United Stated promoting self-help, recovery, and empowerment.

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Disability Rights Education and Defense Fund www.dredf.org/ “The mission of the Disability Rights Education and Defense Fund is to advance the civil and human rights of people with disabilities through legal advocacy, training, education, and public policy and legislative development.”

Judge David L. Bazelon Center for Mental Health Law www.bazelon.org/ “The mission of the Judge David L. Bazelon Center for Mental Health Law is to protect and advance the rights of adults and children who have mental disabilities. The Center envisions an America where people who have mental illnesses or developmental disabilities exercise their own life choices and have access to the resources that enable them to participate fully in their communities.”

National center for dissemination of disability research (NCDDR) www.ncddr.org/ “The NCDDR leverages resources through collaborative working relationships with experts in standards of evidence and systematic reviews, NIDRRfunded researchers, and agencies engaged in disseminating disability research results.”

National empowerment center (NEC) www.power2u.org/ “Mission: To carry a message of recovery, empowerment, hope and healing to people who have been labeled with mental illness.” The empowerment center provides a variety of services, such as referrals, networking, conferences, lectures, workshops, and consultations. They also publish the NEC Newsletter about advocacy, recovery, and self-help.

National Mental Health Consumer Self-Help Clearinghouse www.mhselfhelp.org/ “The National Mental Health Consumers’ Self-Help Clearinghouse, the nation’s first national consumer technical assistance center, has played a major role in the development of the mental health consumer movement. The consumer movement strives for dignity, respect, and opportunity for those with mental illnesses. Consumers – those who receive or have received mental

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health services – continue to reject the label of ‘those who cannot help themselves.’”

Worldwide Disability rights advocates www.dralegal.org “DRA is a non-profit law firm dedicated to securing the civil rights of people with disabilities. DRA advocates for disability rights through high-impact litigation, as well as research and education. We do not charge our clients for our services.”

International coalition of national consumer/user organizations www.interrelate.info/ “We are mental health consumer/survivor leaders from seven countries. We are forging a strong international recovery movement. We have given birth to a new organization, called Interrelate. Interrelate is an international network of national consumer/user/survivor grass-root organizations, which are accountable and reflect diversity.” This group includes Australia, New Zealand, Canada, United States, Ireland, Scotland, and England.

International Disability Rights Monitor www.idrmnet.org/ “The International Disability Rights Monitor (IDRM) is an international grassroots research project designed to document and assess the status of people living with disabilities worldwide. It represents on ongoing collaboration between the Center for International Rehabilitation (CIR) and many international and national disability groups. The IDRM is the world’s only systematic international shadow monitoring report focusing on disability rights.”

Global alliance of mental illness advocacy networks – europe (GAMIAN) www.gamian.eu/ “GAMIAN-Europe strives to ensure that the voice of the patient is heard, appreciated, and actively considered whenever issues relating to mental health, both present and future, are discussed in whichever arena and whatever level.

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Our organization unites more than 80 national associations from 37 countries from Iceland on the North, Malta on the South, Russia on the East, and UK on the West. We also have associated members from Australia, Brazil, Canada, and South Africa.”

Mental disability advocacy center (MDAC) www.mdac.info/en/ “MDAC takes a proactive approach to advancing the rights of people with intellectual or mental health disabilities. Stigma and discrimination often shape mental health and social care services. This leads to people with disabilities being isolated from their communities and exposed to human rights abuses.” MDAC works in Bulgaria, the Czech Republic, Estonia, Hungary, and Russia. MDAC will step up its work in Georgia and Kyrgyzstan, and two countries outside the European and Central Asian regions, namely Egypt and Sierra Leone.

World Institute on Disability www.wid.org/ “The mission of the World Institute on Disability (WID) in communities and nations worldwide is to eliminate barriers to full social integration and increase employment, economic security and health care for persons with disabilities. WID creates innovative programs and tools; conducts research, public education, training, and advocacy campaigns; and provides technical assistance.”

3 Self-help and psychiatric survivors organizations Self-help organizations BRIDGES http://tmhca-tn.org/bridges/ “BRIDGES is a self-help program that provides education and support to mental health consumers. It is available to adults who have a diagnosis of mental illness. There are two parts to the program: a set of courses on recovery taught by mental health consumers; and support groups facilitated by mental health consumers.”

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www.dbsalliance.org/ “The Depression and Bipolar Support Alliance (DBSA) is the leading patient-directed national organization focusing on the most prevalent mental illnesses. The organization fosters an environment of understanding about the impact and management of these life-threatening illnesses by providing up-todate, scientifically based tools and information written in language the general public can understand. DBSA supports research to promote more timely diagnosis, develop more effective and tolerable treatments, and discover a cure. The organization works to ensure that people living with mood disorders are treated equitably.”

Emotions Anonymous www.emotionsanonymous.org/ “Emotions Anonymous is a twelve-step organization, similar to Alcoholics Anonymous. Our fellowship is composed of people who come together in weekly meetings for the purpose of working toward recovery from emotional difficulties. EA members are from many walks of life and are of diverse ages, economic status, social and educational backgrounds. The only requirement for membership is a desire to become well emotionally.”

GROW American Branch – www.growinamerica.org/ Australian Branch – www.grow.net.au/ Ireland Branch – www.grow.ie./ New Zealand Branch – www.grow.org.nz/ “GROW is an international mental health movement with a network of member-run support groups in four different countries, including the USA, Australia, New Zealand and Ireland. GROW is organized, friendly help. It is based on mutual-help groups, friendship, leadership, and mutual education. People come to GROW with diverse problems in living, such as mental health issues, emotional troubles, or difficulty coping with grief, loneliness, anxiety, or stress.”

Peers envisioning and engaging in recovery services (PEERS) www.peersnet.org/ “PEERS is a consumer-run, non-profit organization that advocates for mental health consumers on every level of the mental health system.”

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Recovery International www.lowselfhelpsystems.org/ Recovery International Ireland: www.recovery-inc-ireland.ie./ “The mission of Abraham Low Self-Help Systems is to use the cognitivebehavioral, peer-to-peer, self-help training system developed by Abraham Low, MD, to help individuals gain skills to lead more peaceful and productive lives. The organization meets this mission by providing mental health self-help groups Recovery International community, telephone, and online meetings, The Power to Change for Schools and The Power to Change for Corrections.” There are meetings across the US and in British Columbia, New Brunswick, Nova Scotia, Ontario, Puerto Rico, Quebec, and others.

Schizophrenia Anonymous http://bghealth.org/schizophrenia_anonymous.htm/ “Schizophrenics Anonymous (S.A.) is a self-help support group for persons diagnosed with schizophrenia or a schizophrenia related illness. S.A. was founded in the Detroit area in July of 1985, and since that time, thousands of people have participated in meetings. There are currently more than 150 groups meeting throughout 31 states as well as Australia, Brazil, Canada, Mexico, France, India, and Venezuela.”

Ups and Downs www.upsendowns.be/indexenglish.html “Ups & Downs is a self-help organization for people suffering from bipolar disorder and chronic depression. We support both patients and their family members in coping with these illnesses.”

Wellness recovery action planning (WRAP) www.mentalhealthrecovery.com/aboutus.php “WRAP has been developed by a group of people who experience mental health challenges. These people learned that they can identify what makes them well and then use their own wellness tools to relieve difficult feelings and maintain wellness. The result has been recovery and long-term stability.”

Psychiatric survivors resources Building a Culture of Recovery www.cultureofrecovery.org/ “The Culture of Recovery advances an agenda for change to systems as well as for people experiencing mental health problems and substance abuse. The

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Culture of Recovery project intends to form a new set of values and principles consistent with a recovery perspective: autonomy and empowerment; building hope and living from a position of wellness not illness.”

European network of (ex-)users and survivors of psychiatry (ENUSP) www.enusp.org/ “ENUSP is the only grassroots umbrella organization on a European level that unifies (among others) national organizations of (ex-)users and survivors of psychiatry across the continent to provide a direct representation of people who are or have been on the receiving end of psychiatric services. Involvement of both user and survivor organizations from all over Europe is a unique added value of the Network.”

Mindfreedom International www.mindfreedom.org/ “MindFreedom International is a non-profit organization that unites 100 sponsor and affiliate grassroots groups with thousands of individual members to win human rights and alternatives for people labeled with psychiatric disabilities.”

National Coalition of Mental Health Consumer/Survivor Organizations www.ncmhcso.org/ “The National Coalition of Mental Health Consumer/Survivor Organizations (NCMHCSO) will ensure that consumer/survivors have a major voice in the development and implementation of health care, mental health, and social policies at the state and national levels, empowering people to recover and lead a full life in the community.”

Psychiatric Survivor Archives of Toronto (PSAT) www.psychiatricsurvivorarchives.com/ “The Psychiatric Survivor Archives of Toronto is dedicated to ensuring that the rich history of people who have experienced the psychiatric system is preserved for our community and the wider community as a resource from which everyone can share and learn.”

Psychiatric Survivors Network of Elgin www.psne.ca/ “Psychiatric Survivors Network of Elgin is a self-help, non-profit, peerdriven community organization. We act as a resource, providing experience

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and understanding, relative to the needs of our peers. We encourage independent living, self-help, and ongoing learning by participation in life skills and vocational activities to promote self-esteem and fulfillment.”

Psychiatric Survivors of Ottowa www.psychiatricsurvivors.org/ “We, as survivors and consumers of the mental health system, engage in mutual support, empowerment, and information sharing. We, affirming the dignity and worth of the individual, advocate for alternatives and improvements to the established health care system, services, and issues which affect our well-being.”

World network of users and survivors of psychiatry www.wnusp.net/ “WNUSP is an international organization of users and survivors of psychiatry, advocates for human rights of users and survivors, speaks internationally for users and survivors, promotes the user/survivor movement in every nation around the globe, and links user/survivor organizations and individuals throughout the world.”

4 Further Readings Arboleda-Florez, J. & Startorius, N. N. (Eds.) (2008). Understanding the stigma of mental illness: Theory and interventions. Chichester, UK: John Wiley & Sons, Inc. Corrigan, P. W. (Ed.) (2005). On the stigma of mental illness: Implications for research and social change. Washington, DC: American Psychological Association Press. Department of Health and Human Services (1999). Mental health: A report of the surgeon general. Retrieved from www.surgeongeneral.gov/library/mentalhealth/ home.html Health Canada (2002). A report on mental illnesses in Canada. Ottawa, Canada. Retrieved from http://phac-aspc.gc.ca/publicat/miic-mmac/index-eng.php Hinshaw, S. P. (2007). The mark of shame: Stigma of mental illness and an agenda for change. Oxford, UK: Oxford University Press. Mowbrary, C. T., Moxley, D. P., Jasper, C. A. & Howell, L. L. (1997). Consumers as providers in psychiatric rehabilitation. Columbia, MD: International Association of Psychosocial Rehabilitation Services. Satorius, N. & Schulze, H. (2005). Reducing the stigma of mental illness: A Report from a global association. Cambridge, UK: Cambridge University Press.

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Thornicroft, G. (2006). Shunned: Discrimination against people with mental illness. Oxford, UK: Oxford University Press. United Nations (2007). From exclusion to equality: Realizing the rights of persons with disabilities. New York: United Nations Department of Economic and Social Affairs. Retrieved from www.ipu.org/english/handbks.htm#disabilities US Department of Justice (1990). American with disabilities act. Retrieved from www. ada.gov/pubs/ada.htm Wahl, O. (1995). Media madness: Public images of mental illness. New Brunswick, NJ: Rutgers University Press. Wahl, O. F. (1999). Telling is risky business: Mental health consumers confront stigma. New Brunswick, NJ: Rutgers University Press.

Index

Note: Page numbers in italics refer to tables and figures. affirmative actions 30, 31, 41, 173 African American neighborhoods, discrimination in 38 African Americans and mental illness 56 African National Congress 47 American Civil Liberties Union 47 Americans with Disabilities Act (ADA) 41, 170 America’s Next Top Models 14 antidepressants 7–8, 93 anti-prejudice effects 190 antipsychotic medication 7, 93, 142 anti-stigma program, contact or education-based 59 Anti-Stigma Program Evaluation Plan (ASPEP-10) 43, 50–3 anti-stigma strategies 43, 46, 62, 198 anxiety 3–5, 19, 20, 57, 71, 79, 93, 122, 123, 125, 151, 164, 171

Archie McPhee & Company 13 Aristotle 6 Assertive Community Treatment (ACT) 160, 161 strengths-based approach 161–3 assessment of consumer satisfaction 153–8 of personal empowerment 135–7 of stigma 43–4 practical evaluation 47–53 asylums, during 1800s 6 attitude towards mental illness 7, 29–33 atypical anti-psychotics 7 authoritarianism 27 Batman begins 13 Batman: The dark night 13 Beers, Clifford 8 benevolence 27, 195 Beyond Blue program 62

Challenging the Stigma of Mental Illness: Lessons for Therapists and Advocates Patrick W. Corrigan, David Roe, and Hector W. H. Tsang Ó 2011 John Wiley & Sons, Ltd

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bipolar disorder 5, 8, 16, 60, 62, 66, 68, 71, 171 bizarre behavior 35 bloodletting 7 Bridezilla 14 British Parliament, and rights of persons with mental illness 185 Buddhism 42 Burton Snowboard Company of Vermont 13 Cade, John 8 campaign websites 60 Catholics 29, 102 Catskill 167 Celsus 6 Chamberlin, Judy 9 changing society 197–8 contact or education-based antistigma program for 59 individual’s role 58 PSAs and social marketing for 59–65 targeted and local stigma changes 58–9 through education see education and changing societal attitudes through interactions between public and mentally ill persons see storytelling and changing societal attitudes Chiarugi 7 China, perceptions of mental illness 42–3 Citizens for Accurate Reporting on Schizophrenia (CARS) 110, 111 classic social psychological theory 190 clinical antipsychotic trials for intervention effectiveness study (CATIE) 141 Close, Glenn 59–60, 61, 64 Close, Jessie 64 cognitive behavioral therapy (CBT) 122–6, 147 cognitive restructuring 123, 125, 131 cognitive schema 122, 123

colorblind principle 191 community-based participatory research (CBPR) 43, 48–50, 64 Confucianism 42 consciousness raising 46 consumer-operated programs 165–7 consumer-operated services 165–7 contact-based anti-stigma program 59 contact hypothesis 40 coping strategies, for self-stigma CBT 122–6 consumer satisfaction 153–8 disclosing about mental illness 126–30 fostering personal empowerment 134–7 relapse prevention 147, 150, 151 self-constructed narrative 131–5 skills training programs 157, 157 Corrigan, P. W. 146 cost-effective economic principles 38 Crazy People 109 crisis intervention teams (CIT) 150 dangerousness-education condition 191 dangerousness of people, with serious mental illness 2 Delay, Jean 7 Deniker, Pierre 7 depression 4, 5, 7, 14, 19–21, 30, 40, 49, 62, 66–9, 71, 92, 107, 122, 123, 128 Desperate Housewives 12 developmental cognitive psychology 197 Diagnostic and Statistic Manual of Mental Disorders–fourth edition (DSM-IV) 171 Diamond, Paul 16 Dirt 16 Disability Discrimination Act (DDA) 41, 170 disclosing, of mental illness advantages 126–7 costs and benefits 127, 128–9 and self-help groups 127 tips for 130

Index discrimination intentional institutional 38 in news media 38 structural 37–8 diversity, in presentation and severity 41–3 Domenici, Pete 38 Don’t Call Me Nuts! 19 Dr. Phil 14 dyslipidemia 146 education and changing societal attitudes in-service programs 101 mental illness fact sheet 92–4, 97–8 myths and contrary facts 91–6, 95 opinion leaders 101–3 religious leaders 102 school children 100–1 school professionals 101 and self-confrontation values 96–100 target groups for programs 100–3 education-based anti-stigma program 59 electro convulsive strategies 7 eliminate-the-symptom approach 190 eliminate-the-violence campaign 191 empowerment fostering personal 134–7 and one’s community 139–40 and one’s sense of self 137–9 ways to foster 140 Equal Employment Opportunity Commission (EEOC), USA 184 Erase the Barriers Initiative 10 erasing mental illness mental illness as a brain disorder 192–3 notion of 190–2 Erasing the Stigma (ETS) Campaign 17, 88, 103 exclusion 27, 171 fear 27 Fisher, Daniel 146, 163 Frese, Fred 163

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Galen 6 Gandhi, Mahatma 45, 113, 189 General Hospital 16 Goscha, R. 161 GROW program 9, 166 Halloween event 12, 13 harmful impact of stigma 36–8 Hippocrates 6 hospitalization 3, 87, 149 hypertension 146 “I am” statements 115–16 inappropriate affect 35 Independent Housing Program 153, 155, 160 injury, due to stigmatization 1 Insane Asylum Haunted House 13 Insane Liberation Front in Portland 9 insomnia 171, 172 institutional stigma 36, 38, 54 insulin shock 7 insurance companies and discrimination 38 internalizing, stigma of mental illness 1 International Center for Clubhouse Development (ICCD) 159–60 International Classification of Disease (ICD-10) 171 Irish people 29 irrational beliefs 125, 126, 131 Jamison, Kay 166 Jim Crow laws 38 Jimmy and Rosalynn Carter Center 15 King, Jr., Martin Luther 190 label avoidance 35, 37, 62 labeling theory 116 language irregularities 35 Larson, Garry 15 Larson, J. E. 146 learning, about stigma 33–4

228 legal resolution, of structural stigmas legislation and affirmative actions 173–4 Americans with Disabilities Act 170 Disability Discrimination Act (DDA) 41, 170 disclosure of disability 172–3 essential functions 173–4 getting started 187–8 lobbying 185–7 on-the-job conduct and direct threat 181–2 political action 185 psychiatric disability under DDA/ ADA 171–2 reasonable accommodation on job 174–81 requirements of ADA in terms of employment 170 violations and consequences 182–4 leprosy 191 life activity limitations, of mental disorder 172 lobbying activities 186 conversational opener 186 definition 185 interactions with government officials 186 legislator, role of 187 by phone 187 presentation for 186–7 through mail 187 London Evening Standard 12 Lysaker, P. H. 119 major depression 5, 7, 19, 92, 107, 171, 215 Mandela, Nelson 45 melting pot societies 57 Me, Myself, and Irene 19 Mental Health America 8 Mental Health Parity Act (MHPA) 38 mental illness, stigma of ancient beliefs 5–6

Index asylums during 1800s 6 belief of Homeric times 5 classic Greece belief 6 in commercial ventures 13 depiction in modern times 6 early attitude towards patients 6 initiatives to erase stigma 9–10 Islamic belief 6 and language 19 and media 10–11, 15–17 present times 8–9 scope of problem 24–5 sensitizing persons to 17–18 treatments 7–8 Mental Patient’s Liberation Project, New York City 9 Mind Freedom International 9, 112, 222 A Mind that Found Itself 8 modern racism 190 Monk 16 moral therapy 7 2004 MTV Movie Awards Show 14 mutual help 41, 49, 94, 140, 166 Naidoo, Subashni 16 NAMI 9, 12, 96, 113 CIT Resource Center 150 National Opinion Research Center (NORC) study 2 Nazi Germany’s actions against Jews 196 negative attitudes about persons 25 negative stereotypes 26, 27, 29, 118, 122 Oaks, David 9 Obsessive Compulsive Action Figure 13 obsessive–compulsive disorder 13, 16, 171 Office on Disability and Rehabilitation 180 O’Neill, Tip 59 On Our Own: Patient Controlled Alternatives to the Mental Health System 9

Index on-the-job conduct and direct threat 181–2 open-ended questions 156 Opening Minds program 62 panic disorder 171 peer support 157, 166, 190 perceptions, about mental illness 27–9, 42 personal appearance and stigma attitude 36 personality disorders 14, 171 personal stories, of stigma 3–5, 19–21, 45–7 Pinel 7 pity 194–5 Plato 6 political actions, against structural stigma 185 population-based stigma programs 58 PORT (Psychiatric Outcome Research Team) 142 posttraumatic stress disorder 60 power group 59 prejudice 29, 59, 61, 62, 64, 100, 105, 107, 121, 134, 135, 190–5, 197 “Promise” 114 protests, against discriminatory practices boycotts 112–13 examples 104 fundamental components 105–6 marches and sit-ins 112 negative consequences and 105 phone calls 110 progressive ladder of 106 public denunciation 110–12 rebound effects on attitudes 193–4 and social reward 113–14 stigma-busting campaigns 106–13 targets of 103 psychiatric advanced directives (PADs) 147–50, 148 psychosocial clubhouses 158–9

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psychotropic medications 7 public education campaigns 60, 212 public service announcements (PSAs) 58–9, 60 effects on public or self-stigma 62–3 US 63 public service campaigns 60 concerns about 64 public stigma 36 assessment and insight into 47 challenging 39–40 Pussin 7 racially integrated schooling 190 Rapp, C. 161 Reader’s Digest 15 reasonable accommodation 41 adjusting work schedules 178 changes in work policies 178–9 DDA/ADA and related statutes 174–5, 181–2 direct threats 181–2 disclosing 181 exacting retribution for 183 examples 175–80, 176–7 impact on company 179–80 job coaching 179–80 job restructuring 178 physical environment 178 psychiatric disabilities 179 sick time leave 178 supervisors, role of 179 violations and consequences 182–4 relapse prevention (RP) 147, 150–2 Robin, Lee 15 Roe, D. 119 role engulfment 116 Rotary International 10, 88, 103 Rush 7 sadness 62, 73, 75, 123 schizophrenia 7, 8, 9, 16, 49, 60, 81, 96, 146, 164, 171 second-generation antipsychotic (SGA) medications 146

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segregation of mentally ill people 57 seizure-based treatments 7 self-efficacy 37, 40, 63 self-esteem 37, 40, 63, 150 self-help programs 165–6 self-stigma 40–1 assessment and insight into 47, 119–22 cognitive behavioral strategies 122–6 coping strategy see coping strategies, for self-stigma defined 115 development of 116–17 factors involved in developing 118–19 impact of 117–18 Mental Illness (MI) Stigma score 121 reducing via disclosure 126–30 scale for assessment 120–1 self-stigmatizing 36, 124 serotonin specific re-uptake inhibitors (SSRIs) 7–8 shamanism 42 shared decision making 142–7 Shepherd, Matthew 196 signals, leading to stigma 34–5 specific cues 35–6 social injustice, stigma as 189–98 implications 195–6 socially-given stigma 11, 33 social marketing 59–60, 62, 64, 195 social skills 36 societal stigma, impact of mental illness on community 56 individual’s role in society’s change 58 intangible losses 57 Stein, Leonard 160 12 Steps program 166 stereotypes 25, 27, 33 harmful effect of 56 negative attitudes 1 StigmaBusters 12 stigmatizer 121, 196–7

storytelling and changing societal attitudes audience reactions 89–90 elements 73–6, 74–6 factors facilitating contacts 83–9 of family 79–83 Moshe Levi’s story 66–9 preparations needed 77–9 Robert Lundin’s story 69–73 story of Liu Ying and Chow 80–2 suggestions for 76–7 values considered for public speaking 77 structural stigma 37 correcting social injustices of 41 Substance Abuse and Mental Health Services Administration (SAMHSA) 10, 16 suffragette movement 45 Supported Employment Program 143, 153, 155 talking to self out loud 35 Taoism 42 terminology, of stigma 26 Test, Mary Ann 160 Thorazine 7 threat of stigma 1 A Toolkit of Measures Meant to Evaluate Programs that Erase the Stigma of Mental Illness 44 trans-Allegheny Lunatic Asylum 13 tricyclic medications 7–8 Tropic Thunder 13 Tuke 7 Tutu, Desmond 45, 113, 189 twentieth-century clinical agenda 8 Unanimous 14 US Congress, and rights of persons with mental illness 185 visual hallucinations 16 Wahl, Otto 16

Index We Are Not Alone (WANA) group 9, 159 Wellstone, Paul 38 White supremacist responses to Africans 196 “why try” effect 37, 63

Williams, Dave 12 Wolfe, Kathi 16 women and mental illness 56 Wrist cutters: A love story 13 Yanos, P. T. 119

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