Disability As a Fluid State (Research in Social Science and Disability, Volume 5)

DISABILITY AS A FLUID STATE

RESEARCH IN SOCIAL SCIENCE AND DISABILITY Series Editor: Sharon N. Barnartt and Barbara M. Altman Recent Volumes: Volume 1:

Expanding the Scope of Social Science Research on Disability – Edited by Sharon N. Barnartt and Barbara M. Altman, 2000

Volume 2:

Exploring Theories and Expanding Methodologies: Where We Are and Where We Need to Go – Edited by Sharon N. Barnartt and Barbara M. Altman, 2001

Volume 3:

Using Survey Data to Study Disability: Results from the National Health Interview Survey on Disability – Edited by Barbara M. Altman, Sharon N. Barnartt, Gerry E. Hendershot and Sheryl A. Larson, 2003

Volume 4:

International Views on Disability Measures: Moving Toward Comparative Measurement – Edited by Barbara M. Altman, Sharon N. Barnartt

RESEARCH IN SOCIAL SCIENCE AND DISABILITY VOLUME 5

DISABILITY AS A FLUID STATE EDITED BY

SHARON N. BARNARTT Gallaudet University, Washington, DC, USA

United Kingdom – North America – Japan India – Malaysia – China

Emerald Group Publishing Limited Howard House, Wagon Lane, Bingley BD16 1WA, UK First edition 2010 Copyright r 2010 Emerald Group Publishing Limited Reprints and permission service Contact: [email protected] No part of this book may be reproduced, stored in a retrieval system, transmitted in any form or by any means electronic, mechanical, photocopying, recording or otherwise without either the prior written permission of the publisher or a licence permitting restricted copying issued in the UK by The Copyright Licensing Agency and in the USA by The Copyright Clearance Center. No responsibility is accepted for the accuracy of information contained in the text, illustrations or advertisements. The opinions expressed in these chapters are not necessarily those of the Editor or the publisher. British Library Cataloguing in Publication Data A catalogue record for this book is available from the British Library ISBN: 978-0-85724-377-5 ISSN: 1479-3547 (Series)

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CONTENTS LIST OF CONTRIBUTORS

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DISABILITY AS A FLUID STATE: INTRODUCTION Sharon N. Barnartt

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PART I: AT THE MICRO LEVEL ‘‘FEELING NORMAL’’ AND ‘‘FEELING DISABLED’’ Mary Jo Deegan

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OUT OF A COMA AND INTO A WHEELCHAIR: SOCIAL AND PHYSICAL ACCESSIBILITY AND THE CONSTRUCTION OF DISABLED IDENTITY Jay Chaskes

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PART II: AT THE MACRO LEVEL AT THE INTERSTICES OF CLASSIFICATION: NOTES ON THE CATEGORY OF DISABILITY IN SUB-SAHARAN AFRICA Patrick J. Devlieger A RELATIONAL APPROACH TO THE DEVELOPMENT OF CIVIL RIGHTS FOR PEOPLE WITH INTELLECTUAL DISABILITIES Allison C. Carey v

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FROM ‘‘SURVIVAL OF THE FITTEST’’ TO ‘‘FITNESS FOR ALL’’ TO ‘‘WHO DEFINES FITNESS ANYWAY?’’: 100 YEARS OF (US) SOCIOLOGICAL THEORY ON DISABILITY Corinne Kirchner REGARDING DISABILITY: PERCEPTIONS OF PROTECTION UNDER THE AMERICANS WITH DISABILITIES ACT Pepper K. Mueller, Jeffrey A. Houser and Mark D. Riddle

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PART III: AT THE INTERSTICES OF MACRO AND MICRO ‘‘SIT HOME AND COLLECT THE CHECK’’: RACE, CLASS, AND THE SOCIAL CONSTRUCTION OF DISABILITY IDENTITY Deborah L. Little

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ACTIVISM, MODELS, IDENTITIES, AND OPPORTUNITIES: A PRELIMINARY TEST OF A TYPOLOGY OF DISABILITY ORIENTATIONS Rosalyn Benjamin Darling and D. Alex Heckert

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DEAF WOMEN’S WORK EXPERIENCES: NEGOTIATING GENDER, ABILITY, AND THEORIES OF RESISTANCE Cheryl Najarian Souza

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WHY DOES GROWTH HURT? THE DUAL ROLE OF NORMALIZATION AND STIGMATIZATION IN THE EXPERIENCE OF GROWTH HORMONE TREATMENT Leslie Rott

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DISPROPORTIONALITY: A SOCIOLOGICAL PERSPECTIVE OF THE IDENTIFICATION BY SCHOOLS OF STUDENTS WITH LEARNING DISABILITIES Dara Shifrer, Chandra Muller and Rebecca Callahan ABOUT THE AUTHORS

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LIST OF CONTRIBUTORS Sharon N. Barnartt

Gallaudet University, Washington, DC, USA

Rebecca Callahan

University of Texas at Austin, Austin, TX, USA

Allison C. Carey

Shippensburg University, Shippensburg, PA, USA

Jay Chaskes

Rowan University, Glassboro, NJ, USA

Rosalyn Benjamin Darling

Indiana University of Pennsylvania, Indiana, PA, USA

Mary Jo Deegan

University of Nebraska at Lincoln, Lincoln, NE, USA

Patrick J. Devlieger

University of Leuven, Leuven, Belgium

D. Alex Heckert

Indiana University of Pennsylvania, Indiana, PA, USA

Jeffrey A. Houser

University of Northern Colorado, Greeley, CO, USA

Corinne Kirchner

Columbia University, New York, NY, USA

Deborah L. Little

Adelphi University, Garden City, NY, USA

Pepper K. Mueller

University of Northern Colorado, Greeley, CO, USA

Chandra Muller

University of Texas at Austin, Austin, TX, USA

Mark D. Riddle

University of Northern Colorado, Greeley, CO, USA ix

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LIST OF CONTRIBUTORS

Leslie Rott

University of Michigan, Ann Arbor, MI, USA

Dara Shifrer

University of Texas at Austin, Austin, TX, USA

Cheryl Najarian Souza

University of Massachusetts Lowell, Lowell, MA, USA

DISABILITY AS A FLUID STATE: INTRODUCTION Sharon N. Barnartt ABSTRACT Disability is often described in a way that suggests that it is most often a permanent state. Several, if not most, of the concepts and models of disability suggest this. Even when it is described as being socially constructed, the implication is that an impairment leads to a permanent status of ‘‘disabled’’ within that social, cultural, or historical milieu. However, many types of changes can be seen on an intrapsychic level or on an individual or group/societal level; across time, cultures, societies, and subcultures; or within or across any other social unit. The relationship between impairment (physical state) and disability is neither fixed nor permanent but is fluid and not easily predicted. Furthermore, if this is true, we need to rethink how we are measuring or counting disability. The chapters in this volume examine this premise from many points of view. Several look at micro-level interactional processes over time, some look at cultural change over time and their effects on definitions and measurements, and some look at how social processes shape physical conditions into disabilities or impairments/disabilities into ‘‘normality.’’

Disability as a Fluid State Research in Social Science and Disability, Volume 5, 1–22 Copyright r 2010 by Emerald Group Publishing Limited All rights of reproduction in any form reserved ISSN: 1479-3547/doi:10.1108/S1479-3547(2010)0000005003

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Disability is often described in a way that suggests that it is a permanent state. Several, if not most, of the concepts and models of disability suggest this. The medical model clearly sees disability as being permanent, once any possible medical intervention or rehabilitation is finished; that is why medicine seeks to cure disability. When it is equated with deviance, it is also the case – a disabled person is deviant, period, as long as the disability is obvious (Goffman, 1963). If disability is seen as being a master status rather than being a single role that is temporally and spatially located (Barnartt, 2001), it is unchanging. Even when it is described as being socially constructed, the implication is that an impairment leads to a person having a permanent status of ‘‘disabled’’ within that social, cultural, or historical milieu. The emphasis in all of these conceptions is on stability and permanence. The attempt of this volume is to look at disability in a new way – to focus on the fluidity rather than stability. One of the basic problems comes from our language. The word ‘‘disabled’’ disaggregates into ‘‘dis,’’ meaning un- or not, and ‘‘abled.’’ It has as its opposite only one meaning: abled, or able bodied. Disabled means unable. There are no shades of grey in the word: A person is either able or not. But other words are also used to indicate the state of being disabled, including ‘‘handicapped’’ and ‘‘impaired’’ (as in hearing impaired). Those words also are categorical. They do not allow for a range. But impairments are not dichotomous conditions, in which one either has it or one does not, as with femaleness. Unlike pregnancy, one can be ‘‘a little bit impaired.’’ In statistical terms, they are at the nominal level of measurement (the categories are just different from each other) instead of being at the ordinal level (with categories that could be ranked). As Davis (1995) points out, such categories easily lead to an ‘‘us’’ and ‘‘them’’ terminology. But there is a lot of evidence that disability is a fluid state and not a dichotomous one. It can come and go, move in waves, rise and fall, and show other types of changes that can be seen in fluids. This can happen on either an individual or group/societal level, across time, cultures, societies, subcultures, or any other social unit. It is not one state or condition. This does not mean that this is true for all people at all times or for all people with all impairments, but it can be argued that it is true for some people at some or many times. For some people, the impairment is permanent, obvious, and overwhelmingly defining; perhaps, this includes people with severe mental retardation or (possibly) deaf-blindness. But I would argue that the linkages between impairment, functional limitation, and disability have so many parameters that we cannot consider disability to be fixed or given.

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In some ways, this is an argument about the relationship between impairment and disability. It argues that an impairment does not automatically lead either to a functional limitation or to a disability in the way that some seem to think it does. Nagi’s (1965, 1969) often cited model of disability distinguishes between impairment (physiological processes), functional limitations (limitations on tasks and obligations within roles), and disability (long-term or continued impairments that are associated with functional limitation). However, even he notes that not every impairment results in a functional limitation (1965, p. 102), but he also suggests that disability is based on functional limitations (1965, p. 103). (He is, however, ignoring the possibility that attitudes and societal conditions can be disabling in and of themselves.) The premise of this chapter is that the relationships between impairment (physical state), functional limitations, and disability are neither fixed nor permanent but fluid and not easily predicted. Furthermore, if this is true, we need to rethink how we are measuring or counting disability. We can examine the ways in which disability is fluid at various levels of analysis, not just at the level of the individual. Because our emphasis is on the person in society, not the person in isolation, we must discuss social processes and their effects on individuals. Thus, we must examine the idea of disability as a fluid state at the micro and macro levels of analysis.

MICRO LEVEL OF ANALYSIS At the micro level of analysis, particularly coming from Symbolic Interactionist theories, the focus is on interactions between or among small numbers of people. The focus is on the construction and negotiation of meanings and actions. The assumption is that such meaning and actions are situationally derived and situation-specific. Any identity is flexible and changeable and is in some ways related to the roles in which the person engages (Barnartt, 2001). A person does not have one personality, one role, or one identity, but rather many, which fit the situations and the participants in those situations. We could say that the underlying principle is fluidity. Or change. Or impermanence. There are many words one could use, linked by the principle that identities, interactions, roles, and selves are not fixed. At the most basic level of micro analysis is the body. Disability is not the only aspect of the body, which is involved in all social situations – aspects such as gender, race, and age are also involved, and their salience is not a given. (That is, in one situation, such as within occupations, gender may

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be salient (see Barnartt, 2002), whereas in another (dating), race may be salient. In trying to catch a train, disability may be salient.) One way in which disability is fluid comes from the physical processes of impairment. A person can acquire an impairment, or become nonimpaired, several times or more during a lifetime. A person with multiple sclerosis (MS) or cancer may undergo remissions; people with fibromyalgia or similar pain conditions may have ‘‘good days and bad days’’ (Charmaz, 1991). Sometimes, the fluidity of impairment involves procedures that ameliorate or ‘‘cure’’ impairments. An operation may eliminate hip dysplasia; a deaf person may get a cochlear implant; a medicine may alleviate symptoms; or an assistive or prosthetic device may replace a part of the body that is gone or not functioning. On the contrary, an impairment can become worse. A polio survivor may develop ‘‘post-polio’’ symptoms that cause more or different impairments from the original disease. Some impairments are episodic (Lightman, Vick, Herd, & Mitchell, 2009); in those situations, people can alternate between being well and not well, so they are not always in one state. Even the types of changes are variable. Some physical impairments may change in a somewhat predictable way – such as cancer – whereas others, such as multiple sclerosis, are not at all predictable as to course, periodicity, or outcome (Barnartt & Scotch, 2000). Many people develop impairments during their lifetimes, especially as they age; that is, why we call people without impairments ‘‘only temporarily able-bodied.’’ This is true conceptually as well as for determinations of disability status for purposes of receiving worker’s compensation and other types of disability benefits. In part this is because physical and mental impairments share neither a common nor a stable set of characteristics. Rather, they vary along several continua and so are not one condition, either for those who experience them or for those who observe them. Grut, Thorsen, Myrvang, and Grant (2010) quote an interviewee as saying, ‘‘Oh, there are many sliding transitions. It is not so that you are either ill or well.’’ The link between impairment and functional limitation is clearly somewhat tenuous. One factor, in addition to roles, which affects this linkage, is technology. A prosthetic limb, mechanized chair, speech synthesizer, or car enabled for blind people to drive (20 blind people test drive student-designed car, 2009) make possible types of functioning which are less limited than they otherwise might have been without the technology. Technology is such a huge factor in the amelioration of the impact of impairments that Foster (2009) predicts that some disabilities, including deafness, will disappear within the foreseeable future. A related factor is pharmaceuticals, both prescribed and not. They can ameliorate functional

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limitations of some types, but their presence is also based on availability, economic factors including health insurance coverage, and impacts such as side effects and drug interactions, among others (Manderson & SmithMorris, 2010). Another link between impairment and functional limitations is the environment. The physical environment includes both natural and built or technological components. The natural environment includes the geography, topology, and weather of a place. The built environment includes everything from buildings to sidewalks to transportation systems to assistive technology for people with impairments (Brandt & Pope, 1997). The physical environment, which is obviously strongly affected by both the material and the nonmaterial culture of the society, has an impact on anyone’s ability to access and enact roles. The presence of transportation systems affects the ability of a person living in an inner city to take a job in the suburbs; the presence of paratransit may make it possible for a person with a mobility impairment to go to work every day. Although many people to do not consider the environment to be a societal variable, the environment will be acted upon in such as way as to be potentially enabling or potentially disabling for all people, not just to people with impairments. Such decisions are related to economic, political, and technological aspects of societies. Although not to be discussed here, the state of the environment is clearly and importantly related to the fluidity of disability. If the link between impairment and functional limitation is tenuous, the link between impairment and disability is also tenuous. Ingstad and Whyte (2007, p. 11) ask, ‘‘Is a person born without a leg disabled [sic] if she has the combination of prosthesis and stamina to climb Kilimanjaro, as did the former mayor of Oslo?’’ On the contrary, this link is assumed (to have to be proven) in most civil rights laws relating to disability. Disability cannot be measured against an objective standard, although this is of course how it is in fact mostly measured. If ‘‘normal’’ is defined as being able to jump six feet, I have never been normal and never will be. I do not feel disabled by that inability, but I would if everyone else around me could jump that far or if I needed that ability in any of my roles. Clearly, also, abilities change over time; so defining a skill as normal for those age 20 may not be appropriate for people at age 80 because of the biological processes of aging. But the person without that skill at age 80 – or with less of it than was possessed age 20 – may feel disabled relative to his/her former self but not to others of the same age. That partly explains why some people born with what outsiders might call a disability – for example, a hearing

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loss – might not recognize it as such until told that it is. (Deaf people born into deaf families do talk about not knowing that there is something ‘‘wrong’’ with themselves or their parents when they are young. Hearing children of deaf parents are also surprised to learn that their parents are ‘‘disabled’’ (Davis, 1995).) Disability can be a self-categorization – but, again, people with impairments or functional limitations may not categorize themselves that way. Alternatively, a person may not be willing to disclose an impairment. A person with an impairment that causes pain or fatigue may disclose or not (Charmaz, 1991) – verbally, or by use of a symbolic cue such as a walking stick – on some days but not others or in some situations but not others. A deaf person may decide to try to lipread rather than reveal that they cannot hear – and they may also fail (Kisor, 1990); a deaf signer may code-switch to appear ‘‘more hearing’’ or ‘‘more deaf’’ by the manner (signs, idioms, grammar, and facial expressions) by which they are signing. In short, people may decide to ‘‘pass’’ – as do people who are black, female, or in other devalued statuses. Similar arguments can be made about race and gender. Race has something of a biological basis, similar to impairment, but that biological basis can be manipulated (socially constructed) at all levels from the intrapersonal to the interpersonal to the cultural to the social structural in the same ways that impairment can. When a person who looks ‘‘white’’ can be considered legally to be ‘‘black’’ and a person who looks non-white can be considered to be white for many purposes, the connection between biology and social situation is about as tenuous as that between impairment and social situation. Thus, for example, in Louisiana until recently, people who were 1/8 black by birth were considered to be racially ‘‘black,’’ no matter how much they looked, acted, or felt ‘‘white.’’ The legal standard that a person who had ‘‘one drop of blood’’ from another race was a member of that race, and therefore could not marry someone ‘‘white,’’ held sway in the United States until 1967, when the Supreme Court declared that the laws prohibiting interracial marriages, still on the books in 16 states, were unconstitutional (Finkel, 1998). The legal standard for people who wish to claim Native American ancestry, for purposes of admission to programs administered by the Bureau of Indian Affairs, is that they have to be 1/8 Indian. No race is a clear set of universally defined physical characteristics. These examples show that race is socially constructed, so someone considered to be ‘‘black’’ in one society might not be in another (Robinson, 1999). Cornell and Hartman (2007, p. 61) actually used the word ‘‘fluid’’ to describe both race

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and ethnicity identities, and they give many examples of how tenuous this link is. And there is evidence that racial identities change by role/situation (Harris & Sims, 2002). Additionally, work on intersexuality (Fausto-Sterling, 2000; Kessler, 1998) and on gender diversity in other cultures (Nanda, 1990, 2000) suggests that gender categories are also not dichotomous and are not as fixed or as biologically determined as our cultural perception thinks. Thus, the idea of fluidity for what seems to be a biologically based condition is perhaps not as wild an idea as might first be thought, and it is an idea that is gaining credence related to several types of linkages between bodies and society.

MACRO LEVEL OF ANALYSIS The macro level of analysis includes the social structure and roles within which the participants are interacting, the cultures from which the participants come, and the historical backgrounds of those cultures. Pressures can also include government policies and political or social movements. And, of course, social structural and economic (as well as cultural) processes are deeply involved in the creation of impairment (Albrecht, 1992).

Cultures and Social Structures The culture provides ‘‘scripts,’’ which explicate role definitions, and it is often these which will indicate whether an impairment becomes a functional limitation and whether a functional limitation becomes a disability. These scripts are so inclusive that they can include expectations for physical characteristics (a dancer should be thin and supple), personalities (the CEO of a company should be competitive), emotions (a doctor should not cry), cognitive processes, linguistic usage, actions, reactions, and even the type of clothes to be worn by the person in the role. Additionally, while these scripts include prescriptions (what someone in the role should do), they also include proscriptions (what someone in the role should not do). They may also include notions of what are appropriate sanctions for violation of the role definition (neglectful parents can have their children taken away from them; incompetent lawyers can be disbarred; and professors who do not show up for classes can be fired) as well as of the amount of latitude there is for exceptions or deviance from the script (Edgerton, 1985).

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Although people may have some choice about the degree to which they will follow the role prescriptions, they must follow some of them or they will not be seen as performing that role adequately. For example, a teacher is expected to be knowledgeable, to speak in a certain manner, to perform a certain number of activities that are seen to teach, to show up for classes, to have some involvement with students, and to dress in an appropriate manner – but not to hit students, feed them on a regular basis, wash their clothes, chauffeur them to nonschool activities, or make sure they attend church. (Whereas a parent might be expected to do at least some of those activities.) A mother who does not provide food for her children will be seen as a bad parent, although a teacher who does the same may not be seen as a bad teacher. If an impairment affects a person’s ability to enact the basic functions of the role, the person will feel less than proficient in that role – in other words, disabled, and may also be legally denied access to the role, at least in work roles in the United States. Role expectations also include notions about appropriate and inappropriate places in which the role can be enacted (the sick role should be enacted at home or in a hospital, not on a baseball field), appropriate and inappropriate times at which the role should be enacted (teachers seldom perform their roles at night, although jazz musicians frequently do), how stringently the role expectations are held (a worker who does not perform the basic functions of the job can be fired, but a mother cannot be), and what the penalties for violating the role expectations are (a doctor who wears sexually suggestive clothes to work might expect more opprobrium than a similarly dressed waitress.) Role expectations also indicate other roles that must be attached to that role, in what is called a role set, for a specific role to be performed adequately. For example, a person cannot be a mother without a child. (However, the person in the role of child can only take on that role through certain mechanisms such as birth, adoption, or guardianship. If the child occupies that role under the condition of having been stolen from a hospital nursery, for example, the role set conditions for the enactment of the role of mother will also be seen as not being met.) Finally, societal conceptions of the role may specify its expected place in a person’s salience hierarchy. The script specifies whether the role should take over the person’s life or whether the role can be peripheral in the person’s life (Sarbin & Allen, 1968). The conception of the role of mother would demand that it be given priority over the role of lover. This hierarchy is so important that it is codified into law: a mother who leaves her children to spend time with a lover might risk having her children taken away from her

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if she abandons them or provides inadequate care. Additionally, a societal conception of a role may specify a differential importance for different types of people: Thus, work roles are assumed by society to be more important for men than family roles are; the reverse is true for women. I have emphasized this aspect of cultures at some length because it is so important in affecting the interaction between bodies and role performance. The nature of the person’s roles determines whether an impairment becomes a functional limitation. This is a complicated relationship, which I attempted to disentangle in Barnartt (2002). The presence of an impairment can affect the relationship between role and performance: If the cultural expectation for the role of mother is that the woman be able to hold her baby close to her for long period of time, a woman with an impairment that limits her ability to hold her baby will not perform that role as well as someone without that impairment. If the cultural expectation for the role of father is that a man be able to play sports with his children, a man who has a mobility impairment that makes that impossible would not be performing that role as well as someone without. If role performance is inhibited or diminished by an impairment, the person is more likely to feel disabled in that role than in other roles. Nagi (1965) uses the example of a teacher missing a finger who does not experience a functional limitation in his/her work role. I often use the example of a signing, deaf person in a family of all signers – that person has no functional limitations in his/her family roles that arise from the deafness – although as a deaf parent with a hearing child, there might be. In terms of functional limitation, then, on any given day, a person might be both disabled and nondisabled. The deaf person, mentioned earlier, who did not have a functional limitation within the family, may find his/her role functioning to be much more limited when in an all-hearing work group without an interpreter. Having a mobility impairment may be an impediment in some social situations (at work in a less than totally accessible environment) but not others (in an accessible home). Having a mobility impairment that requires the use of a cane may be more limiting in a buffet restaurant than in a sit-down restaurant, when one has visitors than when one does not (Deegan, in this volume), or on the day when one’s job requires travel than on days when it does not. In the most extreme situations in this and other societies, people with impairments have been hidden and or otherwise denied any role choice. The sterilization of women with impairments, especially cognitive impairments, denied them the choice of the role of mother. But sometimes the cultural denial of a specific role choice is more indirect. When most state laws barred

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deaf people from driving, certain work roles, such as truck driver or chauffeur, were also closed to deaf people even though that was never stated. On the contrary, having an impairment can push people toward choosing certain roles. If having an impairment is seen as an advantage in working for vocational rehabilitation, students with impairments might be more likely to choose to go into counseling than they might be to choose other types of work roles. They may choose to become a ‘‘professional’’ deaf person or blind person (Goffman, 1963) – that is, a person whose work life is centered around advocacy for others who share that impairment. An impairment may limit one role but not others, or even one type of role but not others in that category. An impairment may limit work roles but not family roles, or it may limit some work roles but not others. But it is not just the presence of an impairment but the specific roles or temporal situations that determine whether the impairment leads to a functional limitation or not. For example, suppose a person with cancer cannot handle the functional requirements of the job, retires, gets disability benefits, and becomes a pastoral counselor. The impairment causes functional limitations in one work role but not another. Some people with impairments will also take on the sick role, but others – sometimes even with the same impairments – may not. Over the course of the enactment of several roles, a person with an impairment may move into and out of functional limitations. This can happen at various points during the day, as people move in and out of roles, and it certainly happens over a lifetime, as roles and therefore functional requirements change.

Social Policies There are other aspects of culture which affect whether an impairment becomes disabling. Although most of the time in our cultural discourse we think of ‘‘disabled’’ as being the opposite of ‘‘nondisabled,’’ sometimes this is not the case in policy or other situations. Phrases that emphasize the fact that disability is on a continuum include ‘‘partial disability,’’ being ‘‘not disabled enough,’’ or ‘‘not deaf enough.’’ Military policy relating to definitions of disability in the United States actually emphasizes the fluidity of these definitions: A person with similar injuries appears more likely to be defined as being disabled at the level at which they qualify for disability benefits (30%) if they are in the Navy or Marines than if they are in the Army. Also, a veteran whose injuries are so severe that he/she cannot work

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may still not be defined as being disabled enough to qualify for disability benefits (Span, 2007). And the fact that a candidate for university president was seen by some as being ‘‘not deaf enough’’ was one basis for a protest at Gallaudet University in 2006 (Christiansen, 2010). The conceptualization of disability has important consequences when it is used as part of an administrative system that determines benefits based on a dichotomous variable. In Canada (and probably other places), if one is ‘‘not disabled enough,’’ one does not qualify for the economic benefits that are given to people who are disabled enough (Lightman et al., 2009). Social policies can determine if an impairment is a disability, and they can increase or decrease the likelihood of such a categorization being applied. Often the likelihood is related to the benefits or drawbacks of being labeled or categorized as disabled and to the social and economic costs of such categorization. Perhaps having the possibility of having a local jurisdiction pay for private school, or of getting extended time or of lack of time limits on the SAT test, might increase the likelihood that some parents or students would seek the label of ‘‘learning disabled.’’ But as school budgets decrease in times of recession, the categorization might become more difficult to attain. The prevalences of some types of impairments, such as learning disabilities in the United States, seem to be particularly susceptible to social factors such as money and race. Cultural Attribution Disability may also be attributed by others – an attribution often accompanied by stigma – and, again, this attribution might be related to a real impairment or a real functional limitation, or it might not. A person’s not making the beds may be explained by ‘‘she is blind,’’ or a person’s forgetfulness may be attributed to their MS and not to normal processes of aging. (People with impairments may also do this to themselves.) Disability may also be attributed legally. Allison C. Carey (2009) discusses situations in which people seek to have others defined as ‘‘disabled’’ and therefore incompetent (in the legal sense) for reasons related to inheritance of property. People may become ‘‘disabled’’ because other people assume that a physical condition is in fact an impairment, causes functional limitations, and is therefore disabling to the person. An example of this was described in a recent article about a girl in Vietnam: Van, 5, spends her days at home, playing by herself on the concrete floor because local school officials say her appearance frightens other children. She has an oversize head and

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Whether the girl’s head, mouth, or rash actually impair her in any way is not indicated, but being kept away from school certainly will impair her future abilities. On the contrary, officials may deny ‘‘disability’’ for invisible impairments that the person feels are disabling (Lightman et al., 2009). This seems more likely to be true for invisible conditions, whether physical or mental, but Mudrick (1997, p. 56) points out that civil rights litigation for race or sex seldom starts out with a challenge regarding whether one is really a female or really a member of a racial minority. By contrast, this has been the case for disability.1 Cultural attitudes and constructions of disability form part of how one person views, and interacts with, another person. Anthropology tells us that some societies deliberately create physical situations that we could see as impairments or that some societies would find disabling – scarification, male or female genital cutting, or knocking teeth out (Sullivan, 2001, p. 3) – for ritual or other cultural purposes. Some societies revere physical or mental states that other societies revile. For example, in the United States, there is a question about whether obesity is a disability or not (Kirkland, 2006), whereas in India, it symbolizes wealth and status (or did in the past, although that is now changing a bit.) In some (western) American Indian societies and in (eastern) Indian societies, transsexualism or transvestitism are valued or at least accepted statuses (Nanda, 2000). In the United States, alcoholism and – to a lesser extent – drug addiction are seen as being medical conditions, not deviant (i.e., morally reprehensible) conditions, but the impairments and functional limitations they produce are not disabilities. There are also historical differences in how physical states are viewed culturally. Sometimes it is a matter of the language used, such as the transition from ‘‘idiot’’ to ‘‘feeble-minded’’ to mentally retarded (Devlieger, 2003). Preindustrial societies, whose economies are less dependent on cognition, are less handicapping to people with learning disabilities or mental retardation (Oliver, 1993); agricultural economies may be less handicapping for deaf people than industrial ones (Barnartt, 1992). In 1997, the Institute of Medicine issued a report entitled ‘‘Enabling American’’ (Brandt & Pope, 1997) in which the committee put forth the notion of a ‘‘social mat.’’ They argued that the linkages between impairment, functional limitation, and disability were all affected by the

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capability of the society to ‘‘support’’ the person – not just economically but in every way. If a society was fully accessible and supportive, a person with impairments would not experience functional limitations or disability.

METHODOLOGICAL IMPLICATIONS OF FLUIDITY The fluidity of the linkages discussed here has important methodological implications, especially for the measurement of disability, because there are many factors that operate in any situation. The outcome of any one situation is akin to a multivariate analysis in statistics, which shows that different variables have different weights or amounts of importance in determining the result. The outcome of a progression of situations or interactions multiplies all of these factors. So how can we know, for research purposes, if a person has a disability or not? Methodological issues related to the idea of fluidity are an area in which more work needs to be done. One single question, asked about one point in time, or asked AT one point in time, cannot measure an aspect of being, which is constantly changing and is based on the personal, social, and cultural environments in which the person functions. If a measurement cannot be based on one question, the researcher might have to locate the question situationally. Loeb and Eide (2004, 2006) have used a set of matrix questions that ask not just what type of limitation the person has (among 46 functions) but also whether the person ‘‘can perform (a given) activity without assistance’’ and if they can perform it ‘‘in their current environment.’’ They show that, in a survey that asks about activity limitations alone, many people who are identified as being nondisabled by another question indicate that they have ‘‘some’’ activity limitations.2 Although this may provide a starting point, there is more work to be done.

THE CHAPTERS IN THIS VOLUME Micro Level: Individual or Small Group Processes How people feel is related to the state of their body, among other things. For a time, some disability theorists did not pay attention to this. Under the ‘‘social model of disability,’’ they were concerned with the limitations that social situations or policies constructed for people with impairments.

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Their focus was on the disabling environment, not on the person. But, under the rubric of ‘‘bringing impairment back in’’ (Shakespeare & Watson, 2001), attention is increasingly being paid to the state of the body and to elements such as pain and fatigue. One of the ways in which disability is fluid relates to self-definition. There is sometimes a lack of correlation between having an impairment and the labeling of oneself as ‘‘having a disability’’ or ‘‘being part of a community.’’ Some examples of the lack of coincidence or co-occurrence of the two situations can be seen in people who label themselves as having a disability, people who label others as having a disability, or people who become part of a disability community when they do not have an impairment at all. One example of the latter is the situation of Children of Deaf Adults (CODAs). CODAs may have all of the requisite knowledge, may be native users of American Sign Language, and they may be part of the relevant social networks, but they are not themselves audiologically deaf. The fact that such people without an impairment may become activists is quite a contentious issue among some, who question whether a CODA or a sign language interpreter can belong to the deaf community (Davis, 1995). Even people who do have an impairment have to come to label themselves as being disabled. They have to go through a process whose outcome is internalizing that label. As Davis (1995, p. xvii) says, If one makes the conceptual leap to label oneself disabled – and even individuals with disabilities must make that leap, including themselves in the category for the purposes of a political movement – then the leap is the issue rather than the qualifications for the leap. [emphasis added]

Three of the chapters in this volume address the issue of how and under what circumstances people make this leap by themselves, and others are concerned with how people make the leap not just to label themselves as disabled but how they come to label themselves as part of the disability community or as activists within or for the disability community. Chaskes examines how the fluidity of the physical state affects selfperception. As he says, ‘‘I needed to construct a narrative, to create an account of how I came to assume the status of a permanently disabled male, first for myself, and then for others.’’ He emphasizes the interactive nature of this process, the ways in which it was dependent on both medical and social realities, and the ways in which it changes over time. Even his physical state was not as stable as was predicted because of the ways in which he fought against deterministic labels and situations. It was not a linear

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process, and it was not predictable. It was affected by other people in his life, by social situations, including his age, and by technology. Deegan focuses on what is perhaps the opposite of the process Chaskes discusses. For Deegan, too, some of the focus is on the construction of an identity and the negotiations that occur on a daily basis between being ‘‘normal’’ and ‘‘not.’’ To paraphrase her, shocks to feeling normal are triggers to ‘‘feeling disabled.’’ She posits ‘‘a heightened sense of one’s physical state,’’ consistent with Chaskes’ discussion, leading to an ability to make the adaptations that are required to be, or to pass as, normal. Najarian Souza examines the situation of deaf women who are negotiating several identities. One of these is the potentially stigmatized identity of being deaf, whereas another is also potentially stigmatized identity of being a woman unable to work. A third identity being negotiated is that of being deaf within a community that sees the word ‘‘deaf ’’ as indicating not just an audiological but also a political identity. As she says, ‘‘we can see how they resist being seen as disabled and also how they resist being seen as mothers who cannot also perform paid work. They do this in an effort to be seen by the larger hearing society as legitimate workers.’’

Negotiation: At the Interstices of Macro and Micro Even if a person’s physical or mental condition would be described by others as ‘‘disabled,’’ people do not automatically adopt that identity or characterization of themselves. As Hirsch (1995) noted, the identity of ‘‘person with a disability’’ is one that some people choose to claim even if their impairment is relatively minor, whereas others choose to reject it in spite of one which is visible and/or significant. Or, as Devlieger, Albrecht, and Hertz (2007) show, the adoption of an identity as ‘‘disabled,’’ among African American men who have experienced a violent and disabling injury, only occurs under certain conditions. In this volume, Darling and Heckert focus on how people make the leap to label themselves as disabled. Their chapter is concerned with how to develop a way of measuring people’s disability orientations. They show that there is not just one disability orientation; rather, they have identified a number of orientations that people with impairments may have. (However, it might be noted that these orientations themselves need to be tested for stability over time.) One type of disability identity that someone with an impairment may develop, as one way of living with a stigmatized condition (Goffman, 1963),

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is that of ‘‘activist.’’ With the existence of one or more Disability Rights or Independent Living movements that are actively engaged in contentious politics (Barnartt & Scotch, 2000), such an identity is available to be assumed, which is much less the case, and requires much more personal construction of the identity, if relevant social movements do not exist. But there is not a one-to-one correspondence between having an impairment and assuming an activist disability identity, either within a social movement or as a nonsocial movement activist acting as a ‘‘moral entrepreneur’’ (Altman & Barnartt, 1993). Some people become activists for a disability cause without themselves having an impairment. (See, e.g., some of the writings of Harlan Lane, 1992.) Some of these people are among what Goffman has called ‘‘the wise’’ (1963, p. 30) – those with insider knowledge of disabled states.3 Many other people who have impairments do not assume the identity of activist. But some people with impairments do take on the role of disability activist. What might make the difference? The chapter by Little in this volume describes one mechanism by which activist identities might be encouraged. This chapter shows how Independent Living Centers, whose purpose is really to help people with impairments function well materially in nondisabled society, can begin to create disability and activist identities among people who previously did not have them. The staff provide explanations for phenomena, which can serve as collective action frames for people with impairments. As mobilizing tools, these can serve to recruit people to the disability rights movements because they are providing the bases for the disability culture that serves as the basis for a social movement (Barnartt, 1996).

The Macro Level At the macro, or societal, level of analysis, a number of processes operate, which affect whether someone has a disability or not. These processes range from the creation of impairments (through war, industrial accidents, or disease processes, Albrecht, 1992); ameliorating impairments through technology, rehabilitation, or medical cure (Albrecht, 1976); labeling impairments as being medically related, rather than being in the sphere of the spiritual or supernatural, so that they may be seen as being disabilities; and creating cultural categories that identify certain people with certain conditions as having disabilities rather than something else. Several of the chapters analyze cultural conditions that identify and label disability, either in general or as a specific type of disability. Devlieger

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discusses the circumstances under which the category of disability came to exist, and to change, among one culture in Africa. He shows that western ideas about disability do not always fit the situations of specific African cultures. Some African languages do not have one word for ‘‘disability,’’ although they may have words to describe types of impairments such as blindness or deafness. In Swahili, one conception seems to include meaning, which suggests small, childlike, and in parts. Other conceptions carry with them other types of characteristics. Of the Songye in Zaire, he notes that ‘‘The Songye distinguish extra-ordinary bodies in largely three types. ‘Ceremonial children’ are those whose birth is in some way exceptional (e.g., twinning or unusual presentation); ‘faulty children’ have bodily deficits (motor impairment, spasticity), and ‘bad children’ (including albinos, dwarfs, and hydrocephalics) are inhuman.’’ He also notes that ‘‘bodily differences that impede the reproductive capacity may qualify much more strongly as disabling in many African cultures,’’ which so far is not true in the American context. The meanings of the state of ‘‘disability’’ are clearly varied within one culture as well as between cultures. Kirchner analyzes changes in definitions of the word within the field of sociology. She shows that there have been a wide variety of meanings that have gained prominence over the past 100 years. These meanings are related to other developments within the field, and they have affected the statistics that have been collected based on those meanings. Conceptions based on notions of what was ‘‘defective,’’ ‘‘degenerative,’’ and ‘‘unfit’’ were related to earlier discussions of disability in sociology. It was only later – postWorld War II – that terms such as rehabilitation, and, later, minority group, labeling, and other ‘‘trendy’’ words in sociology were applied to disability. Again, even the conception of disability as used by sociologists was related to intellectual fashions. The issue of disability prevalence and its relationship to social factors is raised by several papers. These chapters suggest that the prevalence of a particular impairment is not based simply on biology or chance. Rather, there are a number of social, economic, and political factors that affect incidence and prevalence rates, and therefore, we cannot assume that these rates provide us with ‘‘real’’ rates of impairment or disability. The chapter by Leslie Rott examines social factors that encourage the elimination of one type of disability – short stature by the use of growth hormones. Cultural concepts of normality relating to height – which would not be the same in Pygmy society – are at the base of parents’ and children’s expectations and willingness to engage with the medical system. This chapter suggests some of the ways in which parents, doctors, social

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attitudes, and other factors affect the likelihood that a child would take the growth hormone, and it examines the results of some of those processes. The chapter by Shifrer and colleagues examines a similar issue with relationship to the identification of students with learning disabilities. They show that a number of social factors are important in predicting which children will be identified as having learning disabilities; these include social class and gender, although not race or ethnicity – which are accounted for by social class. They also show that this is an extremely complicated empirical issue that requires methodological sophistication as well as conceptual clarity. It raises doubts, which we hope that educators share, about what learning disabilities are, for whom, and under what circumstances. The category of ‘‘learning disability’’ seems to be one of the more fluid among a panoply of fluid categories. The chapter by Allison Carey raises issues about the fluidity of intellectual disability and its relation to power, professional ideas about successful work, and personal perceptions about what the category means and what social situations should be attached to it. How persons with intellectual disabilities were to be perceived and treated, whether they were to be seen as eligible for civil rights, and how they were to be regulated were all affected by processes related to political ideologies about issues such as eugenics and institutionalization. As the chapter notes, ‘‘Northern legislators supported the establishment of institutions in part because they saw institutions as a means to control other problems associated with feeblemindedness, including poverty and sexual deviance. Anxiety about immigration also fueled the growth of institutions.’’ Even the perceived rights of parents to ‘‘peace of mind’’ affect how people with intellectual disabilities were treated. Disability in this situation is not about impairment. Rather, it is about the social trends and problems that were current in different historical periods and how they – sometimes serendipitously, it seems – affected persons who may have experienced this category of impairment. Finally, the chapter by Mueller and colleagues addresses the issue of cultural perceptions of what disability is or should be. Specifically, they ask what conditions or impairments a sample of people think should be covered under the Americans with Disabilities Act (ADA). That is, they ask who should be seen to be ‘‘disabled enough’’ to receive the rights that are attached to the legal categorization of being ‘‘disabled,’’ including the right to transportation and communication and the right not to be discriminated against in some types of job situations. One of the strongest findings from the research is that a ‘‘condition that may be the result of poor decision making or related to a lifestyle choice should not be considered a disability

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worthy of ADA protection.’’ Thus, the respondents were willing to admit that ADA rights should be applied to certain types of impairments but not others; an imputation of personal responsibility (presumably related to some form of deviance) exempted some conditions from being eligible, in the minds of these respondents, for such rights because of a disability.

CONCLUSION Social scientists and researchers in other areas are beginning to find out that social categories we assumed to be fixed and immutable are not. This is true of gender and race, and now it is becoming true of disability. As the chapters in this volume show, there are many aspects of the fact that disability is quite often a fluid state. As a category, it is not dichotomous, and it is not fixed. Some researchers find that if a person ‘‘looks disabled,’’ for example by using a wheelchair, that category of attribution will seem to be dichotomous, fixed, and superordinate (Rohmer & Louvet, 2009). However, the chapters in this volume would argue that such an attribution is much too simple to reflect the reality of the person (although it may reflect the perceptions of the observers). Rather, these chapters show ways in which disability is fluid. These range from how individual people negotiate disability identities to what social factors affect how school systems identify children with learning disabilities. Disability seems to be an imperfect name for a state that bears a slight correspondence to a bodily state or condition. Rather, these chapters have reinforced the point that conditions are molded, defined, and aligned based on social, cultural, political, and historical factors.

NOTES 1. However, the Rehabilitation Act of 1973 and the Americans with Disabilities Act of 1990, among other laws, include being viewed by others as having a disability as being a qualifying factor. 2. One really important variable may be length of impairment – Loeb and Eide report that women who have been blind since birth report fewer activity limitations than women who have been recently blinded. 3. He also notes that ‘‘A second type of wise person is the individual who is related through the social structure to a stigmatized individual, a relationship that leads the wider society to treat both individuals in some respects as one’’ [emphasis added (l963, p. 30)].

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REFERENCES Albrecht, G. L. (1976). The sociology of physical disability and rehabilitation. Pittsburgh: University of Pittsburgh Press. Albrecht, G. L. (1992). The disability business: Rehabilitation in America. Newbury Park, CA: Sage. Altman, B., & Barnartt, S. (1993). Moral entrepreneurship and the promise of the ADA. Journal of Disability Policy Studies, 4(1), 21–40. Barnartt, S. (1992). Disability policy issues in developing countries. Journal of Disability Policy Studies, 3(1), 45–65. Barnartt, S. (1996). Disability culture or disability consciousness. Journal of Disability Policy Studies, 7(2), 1–17. Barnartt, S. (2001). Using role theory to describe disability. In: S. Barnartt & B. Altman (Eds), Exploring theories and expanding methodologies: Where we are and where we need to go (pp. 53–75). London: Elsevier/JAI Press. Barnartt, S. (2002). Social structure, culture, role, and disability. Presented at the American Sociological Association Pre-conference entitled ‘‘Macro-Sociological Theory and Disability: A Re-Examination after 35 Years,’’ Chicago. Barnartt, S., & Scotch, R. (2000). Disability protests: Contentious politics 1970–1999. Washington, DC: Gallaudet University Press. Brandt, E., & Pope, A. (1997). Enabling America: Assessing disability and rehabilitation in America. Washington, DC: National Academy Press. Carey, A. (2009). On the margins of citizenship: Intellectual disability and civil rights in twentieth century American. Philadelphia, PA: Temple University Press. Charmaz, K. (1991). Good days, bad days: The self in chronic illness and time. New Brunswick, NJ: Rutgers University Press. Christiansen, J. (2010). The 2006 protest at Gallaudet University. Sign Language Studies, 10(1), 69–89. Cornell, S., & Hartman, D. (2007). Ethnicity and race: Making identities in a changing world. Thousand Oaks, CA: Pine Forge Press. Davis, L. (1995). Enforcing normalcy: Disability, deafness, and the body. New York: Verso. Devlieger, P. (2003). From ‘Idiot’ to ‘‘person with mental retardation. In: P. Devlieger, F. Rusch & D. Pfeiffer (Eds), Rethinking disability: The emergence of new definitions, concepts and communities (pp. 169–188). Antwerp: Garant. Devlieger, P. J., Albrecht, G. L., & Hertz, M. (2007). The production of disability culture among young African–American men. Social Science and Medicine, 64, 1948–1959. Edgerton, R. B. (1985). Rules, exceptions and the social order. Berkeley: University of California Press. Faiola, A. (2006). In Vietnam, old foes take aim at war’s toxic legacy. The Washington Post, November 13, p. A1. Fausto-Sterling, A. (2000). The five sexes, revisited. The sciences. New York: National Academy of Sciences. Finkel, D. (1998). Kim and Josh. The Washington Post Magazine, June 28, pp. 13–18þ. Foster, S. (2009). The Canary in the coal mine. Presented at the Western social Science Association meeting, Albuquerque. Goffman, E. (1963). Stigma. Englewood Cliffs, NJ: Prentice Hall, Inc.

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Grut, L., Thorsen, K., Myrvang, V., & Grant, A. (2010). Life course and aging among people with rare disorders. Presented at the International Sociological Association meeting, Gothenburg. Harris, D. R., & Sims, J. J. (2002). Who is multiracial? Assessing the complexity of lived race. American Sociological Review, 67(4), 614–627. Hirsch, K. (1995). Culture and disability: The role of oral history. Oral History Review, 22(10), 1–27. Ingstad, B., & Whyte, S. R. (2007). Disability in local and global worlds. Los Angeles, CA: University of California Press. Kessler, S. (1998). Lessons from the intersexed. New Brunswick, NJ: Rutgers University Press. Kirkland, A. (2006). What’s at stake in fatness as a disability? Disability Studies Quarterly, 26(1), 15–25. Kisor, H. (1990). What’s that pig outdoors? A memoir of deafness. New York: Penguin Books. Lane, H. (1992). The mask of benevolence: Disabling the deaf community. New York: Alfred A. Knopf. Lightman, E., Vick, A., Herd, D., & Mitchell, A. (2009). ‘Not disabled enough’: Episodic disabilities and the Ontario disability support program. Disability Studies Quarterly, 29(3), 1–16. Loeb, M., & Eide, A. (2004). Exploring living conditions among people with disabilities in southern areas of Africa. In: J. Tessbro & A. Kittelsaa (Eds), Exploring the living conditions of disabled people (pp. 65–86). Sweden: Studenttittatur. Loeb, M., & Eide, A. (2006). Paradigms lost: The changing face of disability research. In: B. Altman & S. Barnartt (Eds), International views on disability measures: Moving towards comparative measurement (pp. 111–130). London: Elsevier. Manderson, L., & Smith-Morris, C. (2010). Chronic conditions, fluid states. New Brunswick, NJ: Rutgers University Press. Mudrick, N. (1997). Employment discrimination laws for disability: Utilization and outcome. Annals of the American Academy of Political and Social Sciences, 549(January), 53–70. Nagi, S. (1969). Disability and rehabilitation: Legal, clinical and self concepts and measurement. Columbus: Ohio University Press. Nagi, S. Z. (1965). Some conceptual issues in disability and rehabilitation. In: M. B. Sussman (Ed.), Sociology and rehabilitation (pp. 10–16). Washington, DC: American Sociological Association. Nanda, S. (1990). Neither man nor woman: The Hijras of India. Belmont, CA: Wadsworth. Nanda, S. (2000). Gender diversity: Crosscultural variations. Prospect Heights, IL: Waveland Press. Oliver, M. (1993). Disability and dependency: A creation of industrial societies? In: J. Swain, V. Finkelstein, S. French & M. Oliver (Eds), Disabling barriers – enabling environments (pp. 49–60). Newbury Park, CA: Sage. Robinson, E. (1999). Colors: On the beach at Ipanema. The Washington Post Magazine, August 1, pp. 8þ. Rohmer, O., & Louvet, E. (2009). Describing persons with disability: Salience of disability, gender and ethnicity. Rehabilitation Psychology, 54(1), 76–82. Sarbin, T., & Allen, V. (1968). Role theory. In: G. Lindzey & E. Aronson (Eds), The handbook of social psychology (2nd edition, pp. 488–567). Reading, MA: Addison-Wesley Publishing Co.

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Shakespeare, T., & Watson, N. (2001). The social model of disability: An outdated ideology? In: S. Barnartt & B. Altman (Eds), Exploring theories and expanding methodologies: Where we are and where we need to go (pp. 9–28). New York: Elsevier/JAI Press. Span, P. (2007). Battle worn. The Washington Post Magazine, February 25, p. 11. Sullivan, D. (2001). Cosmetic surgery: The cutting edge of commercial medicine in America. New Brunswick, NJ: Rutgers University Press. Twenty blind people test drive student-designed car. (2009). The Washington Post, August 2, p. B1.

PART I AT THE MICRO LEVEL

‘‘FEELING NORMAL’’ AND ‘‘FEELING DISABLED’’ Mary Jo Deegan A long-term disability is part of a person’s everyday life, biography, and self. Although recent traumatic disability fundamentally changes the self and relationships with others (Deegan, 1975a), any disability ultimately shapes the self and its relationships with the lifeworld (Schutz, 1962, 1967, 1970, 1971). If a person experiences an everyday life that is meaningful and accepted, then disability becomes part of a ‘‘normal life.’’ In this situation, the person ‘‘feels normal’’ and disability becomes part of that normality and is often unreflexive (Mead, 1934) and part of one’s natural attitude (Schutz, 1962). ‘‘Feeling normal’’ incorporates the liminality (the transitional status in rites of passage) of being disabled in an able-bodied society. That is, disability in hypermodern society creates a permanent status of being betwixt and between many social statuses, not least of which is ‘‘being normal’’ according to an able-bodied standard (Turner, 1969; Deegan, 1975a; Willett & Deegan, 2001). But ‘‘feeling normal with a disability’’1 includes the liminal statuses and experiences as part of the structures of relevance of the lifeworld. Physical disability is part of everyday life and incorporated within the self. When this situation dramatically changes, however, the person may be ‘‘feeling disabled,’’ and the disability comes to the forefront of everyday life and consciousness. Understandings of the embodied self and relationships with others are altered, and ‘‘feeling disabled’’ becomes a source of apprehension, discomfort, unhappiness, alienation, and powerlessness. Disability as a Fluid State Research in Social Science and Disability, Volume 5, 25–48 Copyright r 2010 by Emerald Group Publishing Limited All rights of reproduction in any form reserved ISSN: 1479-3547/doi:10.1108/S1479-3547(2010)0000005004

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The everyday recipes for the lifeworld become problematic, and a specific event or events can ‘‘trigger’’ this change, or ‘‘key’’ a new frame to organize experience (Goffman, 1974). ‘‘Feeling normal or disabled,’’ then, is a fluid condition, one that can change quickly and at any time. In this chapter, I explore ‘‘feeling normal’’ and ‘‘feeling disabled’’ as experiences that are part of the everyday life of a person with a disability. I start from my own lived experience as a person with a disability and employ a phenomenological perspective to theorize and reflect on my being-in-the-world (Deegan, 1975b; Deegan & Brooks, 1985; Schutz, 1962, 1967, 1970, 1971). I also draw on the feminist experiential method of Shulamit Reinharz (1984) and myself (Deegan, 1987b; Deegan & Hill, 1982, 1987).2 Over the course of my life, I have had several physical disabilities involving my legs. At present, I frequently use a cane, and limp when I am tired. The extent of this ‘‘variable mobility’’ at any given moment depends on a wide range of environmental factors as well as ever changing reserves of – and demands on – my physical stamina. In sum, there are consequential, highly variable constraints on my ability to climb flights of stairs, walk lengthy distances, or stand for long periods (Deegan, 1987a, 2000). Adding significantly to the demands on my stamina, I work full time as a professor of sociology at the University of Nebraska-Lincoln.

‘‘FEELING NORMAL’’ IN AN ABLE-BODIED WORLD People subjectively engage in the production and reproduction of what constitutes ‘‘feeling normal.’’ Objective standards of normalcy for the ablebodied are created and maintained by institutions (e.g., medicine, the state, business, the mass media, and family), and these standards are learned by individuals who socialize the next generation in a continuous cycle. Having a disability does not exempt a person from standards and values of ‘‘able-bodied normalcy,’’ nor does it prevent her/him from reproducing these standards for future generations. Thus, it is possible, if not probable, that persons with disabilities live in and reproduce the able-bodied lifeworld, sustaining, what is for the person with a physical disability, an unattainable standard of normalcy. Approximating and ultimately achieving ‘‘normalcy’’ in this situation or at least the presentation of ‘‘normalcy’’ (Goffman, 1959, 1963) may occupy a sizeable portion of everyday life. More importantly here, ‘‘feeling normal’’ emerges when the social constructions of reality allows the person with a physical disability to be part of a generation and

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everyday life. There is, in other words, a ‘‘frame’’ for defining normality, and physical disability is a key to changing this frame (Goffman, 1974). Persons with disabilities often are encouraged by the able-bodied, and people with a disability alike, to fight against their ‘‘state of being,’’ that is, to seek and obtain ‘‘appropriate’’ medical care, and ultimately be restored to an able-bodied society, what Talcott Parsons (1964) called the requirements of a ‘‘sick role.’’ Such reintegration cannot happen with a permanent disability, however. ‘‘The disabled role’’ is more complicated and may have a mixture of sick role expectations as well as ‘‘able-bodied’’ ones. Being unable to change one’s state-of-being that is defined as flawed creates a form of alienation emerging from the material world in a process similar to that of the proletariat laborer who commodifies their labor and sells it for less than it is worth (Marx & Engels, 1848). It differs, however, from this Marxist process because it is a living embodiment that is not necessarily sold as capital as much as it is a lack of social acceptance of one’s being ‘‘not normal.’’3 Similarly, living in a disabling society calls for this same ‘‘not normal’’ agreement. Alienation arising from this context may call out a cessation of demands to change the standards and acceptance of ‘‘able-bodied normality’’ and become incorporated within an alienated self and lifeworld. This is what Jurgen Habermas (1984) calls ‘‘the colonization of the self’’ arising from external forces. Again, Habermas’ concept does not fit exactly the case of people with physical disabilities. Habermas views these external forces as arising from the social system at a macro level. Colonization of the self for people with physical disabilities, however, can arise from micro interactions rooted in everyday life. Everyday interactions can produce the ‘‘failure’’ to attain the able-bodied standard emerging from a disabling society. Thus, to protect the standard as attainable, just, and possible, there is a strong desire to see the person with a disability either ‘‘triumph over their tragedy’’ or embody and accept their tragic situation (Goffman, 1963). The option of not defining the disability as calling out a ‘‘triumph’’ or a ‘‘challenge’’ or as being ‘‘tragic’’ is not offered in the able-bodied scenario. The attempt to engage in ‘‘normal activities’’ and roles in institutions, even when the ablebodied standards prevent their achievement, is praised. When the body cannot deliver these ‘‘normal’’ behaviors, consolation may or may not be dramaturgically offered (Goffman, 1963). Thus, there is a tenuous balance between accepting the able-bodied standards and the material reality of disability. There is another intervening step in this tightrope existence: over time, a person with a disability learns a balance that yields a new form of

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being-in-the-world: ‘‘feeling normal’’ as a disabled person in an able-bodied world. This is, of course, an unstable reality, poised between the impossible ‘‘feeling normal’’ of the able-bodied and the creation of an everyday life that meets the standards of ‘‘normal activities’’ that are possible because of specific material conditions. Being happy and productive while living with a disability is part of ‘‘feeling normal.’’ A social movement away from the medical model and toward an understanding of disability as a social process has emerged over the past three decades. This is an effort to generate a new frame for defining the experience of disability (Goffman, 1974). For example, I (Deegan, 1977b) analyzed the social construction of depression in rehabilitation processes that adhered to a ‘‘stage model’’ of responses to a traumatic injury. This model allowed institutions to blame the person with a disability as being the cause of depression instead of examining the problematic institution. This allowed the staff to manage a person with a bodily flaw rather than alter their troublesome behavior or that of other medical providers. I also examined the unintended meaning of movements caused by a disability as a form of misunderstood ‘‘nonverbal communication’’ (Deegan, 1977a). Finally, I (Deegan, 1981, 1985) analyzed the ‘‘multiple minority’’ process for women with disabilities and included both the problems and the benefits emerging from the interaction of these ‘‘double statuses.’’ Bill Hughes and Kevin Paterson (1997) discuss these social movements in the study of bodily loss as a function of increasing our understanding of ‘‘the social model of disability’’ and the need to establish a ‘‘sociology of impairment’’ using postmodern and phenomenological theories. Here, I draw on a phenomenology that I combine with the feminist pragmatism of Jane Addams, W. E. B. DuBois, and George Herbert Mead (Deegan, 1988, 1999) and the dramaturgy of Erving Goffman and Victor Turner (Deegan, 1989, 1998). Although there is a growing use of phenomenology to understand the experience of living with a body that has a disability (e.g., Maly & Krupa, 2007; Turpin, 2008), this literature continues to stress the problems of disability which I examine (and limit) here as ‘‘feeling disabled’’ in contrast to ‘‘feeling normal.’’ C. D. Murray (2004) is one researcher who uses phenomenology to study ‘‘feeling normal.’’ He lists the numerous explanations of why people with amputations reject prostheses and documents that this negative approach – listing problems and how to respond to them – is vastly different from asking people who use their prostheses regularly about their experiences with them. Very different and positive answers were supplied by those who successfully use their ‘‘artificial limbs.’’ (The phrase ‘‘artificial limbs’’ is, of

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course, another poor term because it is defining a prosthesis – another poor term because it is a technical, medical concept – as less than real.) Thus, people who use their prostheses in everyday life talk about relearning how to balance their body, which then allows the prosthesis to become a ‘‘tool’’ or an article that is worn in a manner similar to donning a pair of shoes. The ‘‘phantom limb,’’ which is seen usually as a ‘‘problem of an individual’’ who is experiencing a limb that does not exist, is another able-bodied, medical term. The persistence of feeling and pain after an amputation is a ‘‘real experience’’ (Deegan, 1978). This experience by a person with an amputation can be incorporated into the use of the prosthesis. Instead of defining the ‘‘phantom limb’’ as nonexistent, the person with the new tool incorporates the ‘‘normal’’ presence of the limb (or the real experience of the former limb) with the use of the prosthesis. ‘‘Feeling normal’’ is an important part of this Lebenswelt. There is also a small body of sociological literature on this process that is found in the writings of Harriet Martineau and Annie Marion MacLean. Both women explored their full and productive lives as women with physical disabilities who used a sociological lens to analyze their own experiences.

HARRIET MARTINEAU AND ANNIE MARION MACLEAN ON ‘‘FEELING NORMAL’’ The concept of ‘‘feeling normal’’ was not used by either sociologist, but both Martineau and MacLean developed ways of ‘‘feeling normal’’ that integrated the disability, the self, everyday life, sociology, and the social construction of reality through their intellectual apparatuses. Martineau (1878) described in detail, in her Autobiography, how she experienced her growing deafness as a teenager. She later integrated her hearing loss into her career, ideas, and methods. In addition, she wrote about sensory losses in both her fiction and her nonfiction. Thus, she composed a compelling and vital ‘‘Letter to the Deaf’’ (Martineau, 1836; Deegan 2001) wherein she categorized and defined deafness, the dramaturgical presentation of the deaf self, and rules for stages of adjustment to the traumatic loss of hearing, based on her lived experience. These rules include giving up able-bodied standards and developing a new self. Some of the steps to ‘‘feeling normal’’ include ‘‘letting go’’ of the past and things that cannot now be done, talking about the ‘‘infirmity’’ with others, having a ‘‘hearty acquiescence’’ with ‘‘infirmity,’’ using aids (e.g., an ear trumpet

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which she used), appreciating one’s hunger and thirst after sounds, and increasing one’s abstract reasoning. Martineau’s rules for life, or ethical standards, were, give the least possible pain to others; keep up social communication, know that no matter how great the apparent problem, things brighten sooner or later; think about your countenance – form new habits of smiling, looking interested, and looking welcoming; never ask ‘‘what’s happening?’’; and wait to be addressed. Martineau (1844) and Deegan (2005) also studied other disabilities and institutions serving people with disabilities and was important in founding the sociology of disability. Similarly, MacLean experienced a rapid onset of rheumatoid arthritis when she was in her 40s and an established sociologist. She wrote two books anonymously documenting her experiences with bodily changes, medical institutions, physicians, and care-givers (MacLean, 1914, 1918). Here, she discussed many of the failures and misunderstandings attending these social processes. She was particularly astute about the false optimism of physicians and the serious problems of having attendants with different goals, values, and ideas from her own. She did not ‘‘feel normal.’’ She needed to change her self, develop new standards of everyday life, and integrate her everyday life through steps she analyzed in these books where she struggled between her old standards of performance and her new body. Ultimately, she wrote about her ‘‘feeling normal’’ in ‘‘This way lies happiness’’ (MacLean, 1923). Here, she celebrates her being the ‘‘Captain of my fate,’’ referring to a phrase in a then-popular poem, and her rich and meaningful life (Deegan, 2010). These two early sociologists, Martineau and MacLean, articulated the social process of ‘‘feeling normal’’ and rejected the able-bodied drama of ‘‘tragedy’’ or ‘‘triumph over the body’’ (social constructions of the disabled role which are built on able-bodied standards and which are frequently found in popular literature). It is no coincidence that Martineau, MacLean, and I all discuss ‘‘feeling normal’’ and are female sociologists. Sociology provides insights into this inherently social process; it also provides an opportunity for ‘‘feeling normal’’ through analysis, writing, and lecturing, and it is an occupation in which a disability can be part of the everyday work that is our paramount reality (Schutz, 1967, 1971).

‘‘FEELING NORMAL’’ IN A BODY WITH A DISABILITY Able-bodied people frequently exhibit little understanding of life with a disability. Even able-bodied people who are close to a person with a specific

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disability often have little understanding of disabilities that are significantly different from the disability with which they are familiar. Thus, able-bodied people familiar with a person with a hearing impairment may have little understanding of the everyday consequences of arthritis, diabetes, or heart disease. As a result, many able-bodied people do not understand the lived reality of a person with a disability who ‘‘feels normal.’’ Particularly, insensitive and fearful people imagine the person with a disability as ‘‘pitiful,’’ ‘‘powerless,’’ ‘‘in pain,’’ or, in other words, as constantly having the disability as problematic and at the forefront of everyday life (Fish, 1986). Erving Goffman (1963) refers to this perception of a flawed identity as a ‘‘stigma,’’ although he allowed little possibility for incorporating stigmas as normal. Instead, he saw stigmas as permanent problems to be managed, hidden, or a potentially disruptive source of shame. Here, I assume that liminality and stigma are subject to agency to a considerably greater degree than Goffman and the able-bodied standards allow. The person often has many choices among different definitions of situations, experiences, and presentations of normality and control by the self. When a person has a disability that is part of the self, that disability is ‘‘normal’’ and part of the lived experience of the self. It is part of the natural attitude and part of the structure of the lifeworld. ‘‘We-relationships’’ are present or absent as they are for every embodied person (Schutz, 1967). Everyday strategies or ‘‘recipes’’ to manage problems caused by the disability emerge (Schutz, 1962). This normality is not a judgment of disability as ‘‘good’’ or ‘‘bad,’’ but disability gains the more neutral status of ‘‘being there.’’ Although ‘‘feeling normal’’ is linked to the visibility and severity of the physical limitations, it also can be independent of these signs. ‘‘Feeling normal’’ is a social process. Another way to analyze ‘‘feeling normal’’ is understanding how the disability is part of the social structure from which the self emerges (Mead, 1934). ‘‘Feeling normal’’ is not a denial of disability but an integration of it into the self. It is also not ‘‘coping’’ and it is not ‘‘tolerance.’’ These half-hearted terms retain a negativity that is lacking in ‘‘feeling normal.’’ Coping, in particular, is an irritating term used by the medical establishment to suggest that a person is adapting as well as can be expected to a bad situation/body. This type of acceptance of an able-bodied standard is a ‘‘compromise’’ arising from a comparison based on the ‘‘failure’’ to achieve the ideal. A concentration on ‘‘feeling disabled’’ often accompanies the medicalization of physical disability (see Hughes & Paterson, 1997). ‘‘Feeling normal’’ does not mean accepting discrimination that is generated by able-bodyism, sexism, racism, or ageism (Deegan, 1989, 1998;

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Feagin & Feagin, 1978; Feagin & Vera, 2008; Feagin, Vera, & Bantur, 2001). These situations of discrimination are part of everyday life in hypermodern society: Thus, fighting discrimination, or even being conscious of it can be part of ‘‘feeling normal’’ or even a source for its creation. Although ‘‘liberation’’ accompanies the active resistance to social injustice and taking the role of the oppressed (Mead, 1934; Feagin & Vera, 2008), liberation is not a requirement for ‘‘feeling normal.’’ Liminality and discrimination are woven into the fabric of society and living with it is part of the natural attitude. When this materiality changes, however, ‘‘feeling normal’’ is endangered, if not erased. When there is a shock to the natural attitude, the disability becomes a ‘‘thing’’ to be remanaged, ‘‘relocated’’ within everyday life, and the everyday world is thrown out of balance. A person’s ‘‘systems of relevance’’ are biographically and physically altered (Schutz, 1970). The person ‘‘feels disabled.’’ These shocks to feeling normal are triggers to ‘‘feeling disabled.’’

‘‘FEELING DISABLED’’ ‘‘Feeling disabled’’ is a lived experience where recipes for everyday life do not work. Many actions, symbols, and relationships between the self and the other are ‘‘out of kilter.’’ The disability is a prominent challenge for the self and for the other, particularly in the situation of a ‘‘we-relationship.’’ The flow of understanding and communication in the we-relationship is altered and usually there is a change of dependency between the disabled self and the lived other. The body is perceived as ‘‘not working’’ because everyday life is ‘‘not working.’’ Feeling disabled is a different frame from feeling normal (Goffman, 1974). When the body changes, in the sense of losing a physical capacity, this often initiates a sense of ‘‘feeling disabled.’’ But even when the body changes in the sense of gaining a physical capacity, this, too, often initiates a sense of ‘‘feeling disabled’’: the everyday life, recipes, and sense of relationship to the lifeworld are altered. Once again, ‘‘feeling disabled’’ comes to the forefront of everyday life and consciousness.4 ‘‘Feeling disabled’’ can swamp a person with feelings of powerlessness. Questions arise such as, ‘‘How do I do this? How do I get out of here? Who can I trust? Who will help me? Do I look helpless? In the next sections, I examine ‘‘feeling disabled’’ initiated by four triggers: (1) increased and changing physical demands from the lifeworld, (2) aging, (3) traveling, and

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(4) medical settings. These are common and important triggers, and many more can be analyzed in future research.

‘‘FEELING DISABLED’’ DUE TO INCREASED OR CHANGING PHYSICAL DEMANDS FROM THE LIFEWORLD For a person with a disability, a heightened awareness of one’s physical state is an essential ingredient in his/her ‘‘recipes for living,’’ making it possible to manage the frequent adjustments and adaptations necessary to function in the able-bodied lifeworld. Understanding the often physically variable need for personal aides, for example, a cane, brace, walker, or wheelchair, is necessary to function in the lifeworld. For example, I use a cane in everyday life, but I use a wheelchair when I travel through airports. In the latter situation, I do not know the distances I need to walk or the speed needed over those distances. I do not know if planes will be late on arrival and change the time needed to get to a new gate. I do not know how long the lines to get tickets or boarding passes may be or if an unscheduled delay will occur. All these situations require frequent assessments.5 In addition, the environment in which the ‘‘walking’’ or ‘‘standing’’ occurs must be considered. Extreme heat or cold, high winds, steep inclines, and slick surfaces may limit, and when severe, prevent engaging in physical activity. Evaluations of the physical state of the body and the environment based on the demands of anticipated physical activities and the resulting needs for rest become the foundations of recipes for living (Deegan, 2000) that enable participation in ‘‘normal activities’’ and ‘‘feeling normal’’ or its opposite, ‘‘feeling disabled,’’ and being unable to function. In the privacy of the home, adapting schedules and changing the environment presents fewer problems than these same issues experienced in more public spaces. Tailoring personal environments to accommodate disability (i.e., remedying obstacles that impede movement, such as furniture, and narrow doorways) and segmenting chores so that easier and harder tasks are done at different times are recipes that create and maintain situations for ‘‘feeling normal.’’ Strategies to control the private sphere are specific to the individual and the form of the disability. These recipes are usually developed by trial and error although physical therapists can sometimes anticipate some of these new methods to accomplish tasks or display behaviors. In some cases, good ‘‘recipes’’ that enhance ‘‘feeling normal’’ result.

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Risks can be minimized, but in the public sphere, repeated validations of disabled status, requiring new recipes, are extremely threatening to the state of ‘‘feeling normal.’’

Truth Claims and the Fluidity of ‘‘Normal’’ and ‘‘Feeling Normal’’ Statuses A person with a physical disability may exhibit no overt signs of disability, be able to stand and walk for some distance unaided, or dramaturgically present a ‘‘normal self.’’ This does not mean that they will not be required to disclose their condition to participate in the lifeworld. Thus, disabilities such as diabetes, asthma, or epilepsy may not have overt signs, but various triggers may cause dramatic symptoms to appear. At the same time, even the most visibly disabled person may be doubted concerning the ‘‘reality’’ of their disability. The assertion of disability is, then, a potentially challenged ‘‘truth claim’’ (Habermas, 1984). Determining the validity of a ‘‘truth claim to disability’’ is complex. Often it involves ‘‘medical verification’’ and the resulting medicalization of disability. In hypermodern society, disability status may be ‘‘verified’’ by doctors (usually requiring doctor’s visits, bills, the use of time, and bureaucratization). The medical ‘‘frame’’ is often based on ‘‘able-bodied standards and values’’ and very particular social stocks of formal knowledge aligned with the ‘‘sick role’’ (Goffman, 1974; Parsons, 1964). The expenditure of time and money by the person with a disability who must become ‘‘a patient’’ and submit to the authority of medical personnel are all required. Using capital, filling out insurance forms, answering intrusive questions, and being shuttled between anonymous others who have power over determining one’s truth claims are all surplus, alienated labor. Even being forced to take ‘‘new medications’’ to be compliant with these controlling figures may be required in our drug culture. With repeated verification of disabled status, even the person with a physical disability who usually is ‘‘feeling normal’’ may be altered into ‘‘feeling disabled.’’ Forced to verify, ‘‘What is wrong with you’’ to coworkers, medical staff, government officials, even to friends, and family demonstrates one’s lack of achieving normality. This certification changes social interactions with a person who is stigmatized by a disability status. For example, a friend of mine who had had 17 years of employment with a disability was required to be medically certified as disabled. All the people with whom he had worked started holding his elbow (unnecessarily) as he walked and asking for the first time if he needed help doing everyday tasks.

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One person rushed to help him when he dropped an object in his office. She thought he had fallen although he had dropped many objects over 17 years without any such concern. Being ‘‘certified disabled’’ systematically altered every interaction. This is counter to ‘‘feeling normal’’ and can become a trigger to ‘‘feeling disabled.’’ Many people with a disability, on the one hand, do not wish to openly disclose their disability or be put in the hands of medical verification, testing, and new drug requirements. Potentially these may lead not only to the risk of medical errors but also to the ‘‘discovery’’ of new disabilities. This is part of the core code of bureaucracy (Deegan, 1989, 1998). Nondisclosure, on the other hand, puts the individual with a disability at risk of physically overextending themselves, of ‘‘muffing’’ the performance of normality, or being ‘‘discovered’’ as a person who is dishonest. In the case of some disabilities, the proper response to a symptomatic disability may be a life or death decision. If forced to utilize their personal energy resources to the point of exhaustion, prolonged bed rest or hospitalization may be necessary, and permanent deterioration could result (Borg, 2005). Embarrassment from flawed performances is the minimum danger to ongoing ‘‘normality.’’ Bureaucratic verification of disability is demanded often when enrolling in schools. Students with disabilities may be required to verify their statuses with administrators, students, and professors. This is counter to ‘‘feeling normal.’’ Similarly, new ‘‘bosses’’ may unthinkingly institute work schedules and tasks that seem like ‘‘abnormal’’ demands, creating barriers that did not exist before. Suspicions about the skills of – and the truthfulness of claims made by – a person with a disability can generate a hostile workplace. When a person is continually subjected to new expectations, to surveillance, to requirements for disability status, and to skepticism, then ‘‘feeling normal’’ is difficult to maintain. The alteration of physical demands –as well as consequential changes in interaction patterns – may be hidden. Denials of the problems created by employers are common. Persons in power typically manipulate situations and definitions to their own ends, thus making everyday life a source of continual difficulties for disabled employees. Official ‘‘certification’’ of a disability by medical specialists not only makes the person with a disability dependent on this ‘‘proof’’ of physical disability, but the process of obtaining ‘‘proof’’ also incurs financial and temporal expenditures. When such certification is obtained, however, it can be a useful tool for curbing the power of arbitrary, thoughtless, and sometimes cruel authority figures. Change and changing circumstances are part of the able-bodied standard of ‘‘normal’’ and may be seen as desirable and nonproblematic. For the

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person with a disability, however, sudden changes in the lifeworld can be frightening, exhausting, and dangerous. For able-bodied workers, unplanned parties or celebrations, emergency meetings, unexpected changes of location, or last-minute dinner invitations may be welcome, but these same events can trigger ‘‘feeling disabled’’ for a person with a physical limitation. Without knowledge of the location and expected duration of events, strategies cannot be reliably planned and implemented for ‘‘managing the problems caused by disability.’’ Similarly, in the private sphere, expected and unexpected guests increase physical demands. Altering schedules to accommodate guests may result in skipping a needed rest or staying up later than ‘‘normal,’’ thus depleting energy reserves and triggering ‘‘feeling disabled.’’ When asked to ‘‘go out’’ with guests, there is always the inherent risk that the able-bodied lifeworld will be unable or unwilling to conform to or adapt to the needs of the disabled, again initiating ‘‘feeling disabled.’’ For the physically disabled, there is always the chance of external changes in subjective or objective realities that may seriously disrupt what was formerly a highly reliable recipe. The difficulty of gauging how much help is needed can also cause strained interactions. For example, there is what I call the ‘‘Iowa politeness’’ interaction. I encounter this phenomenon at least once, if not several times, whenever I travel though Iowa. To wit, a person’s desire to help a person with a disability actually causes problems and becomes a ‘‘trigger’’ for feeling disabled. For example, grabbing a door away from my hand to ‘‘help me’’ often causes me to lose my balance. Holding a door open for me when I am not near the doorway becomes a pressure to move faster. Telling me ‘‘Don’t worry, I have you’’ when I am several feet from a doorway, or talking to me to be friendly – when I need to concentrate on executing a difficult physical movement, are all examples of the Iowa politeness interaction. I often tell such people that I appreciate their offers to help me, but I do not need this assistance. This response is often met with ostentatious huffing, slamming of doors, and sotto voice whispers about ‘‘ungratefulness.’’ These coerced interactions create ‘‘no-win’’ situations for me. ‘‘Going out’’ can be a major trigger for ‘‘feeling disabled.’’ Contemporary restaurants generally comply with the Americans with Disabilities Act, in that they provide elevator service when necessary to maintain the accessibility standard. However, seating in the facility may be too close for safe navigation. Diners may hang coats, purses, and other personal belongings around their seating and form an obstacle course for a disabled person who is thereby shocked out of their natural attitude of

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‘‘feeling normal.’’ Similar ‘‘surprises’’ occur when hotels and motels having ‘‘accessible’’ bathrooms equip them with flimsy railings and so on. At many facilities, doorsills that are marginally higher than the surrounding floors make navigation difficult; museums and concert halls that are described as ‘‘accessible’’ but actually require negotiating ‘‘just a few steps’’ become functionally inaccessible. New construction sometimes exacerbates rather than ameliorates these kinds of surprises. For example, a recently built, architect-designed auditorium at the University of Nebraska-Lincoln sported new passenger elevators that are too small to accommodate electric wheelchairs! Unfortunately, to avoid or prevent such situations, a person with a disability may assume that he or she is the problem instead of understanding that the problems are caused by able-bodyism.

Colonization of the Self Both repeated challenges to (a) the validity of ‘‘feeling normal’’ and (b) barriers to movement can prevent disabled persons from ‘‘feeling normal.’’ Many choose to isolate themselves from the lifeworld to insulate themselves from ‘‘feeling disabled’’ or having to adopt able-bodied standards for viewing disability, performance, and agency. This colonization of the self may result in avoidance of situations, events, and people who raise the specter of embarrassment, humiliation, and shame that arise with being with the other in the lifeworld. The person with a disability may decline participation in everyday life by limiting their exposure to ‘‘feeling disabled.’’ Colonization of the self may decrease the exposure of the disabled and enhances perceptions of the disabled as the ‘‘other.’’ Liberation sociology rightly asserts that all of us, disabled and able-bodied alike, internalize the oppressed and oppressor. By contributing to the production and reproduction of the able-bodied lifeworld, and self-limiting our participation in that world, persons with physical disabilities become their own oppressors. This response to colonization of the self limits the opportunities for acknowledging and changing the oppression and repression in the everyday standards of normalcy. People with disabled bodies constitute one of the largest minority groups in America, but instead of challenging and eliminating the able-bodied standards of normalcy, people with disabilities may become alienated from their bodies and selves. This false consciousness can result in ‘‘feeling disabled’’ being legitimated by the self as well as imposed by others.

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Challenging able-bodied standards of ‘‘being normal’’ requires reflection of the diversity in the lifeworld. The physical and social attributes of disabled persons comprise a wide spectrum. A person with a disability is not typically an able-bodied model, athlete, celebrity, or hero, legitimated, created, and maintained through our social construction of everyday life, but he or she could be. Some people with disabilities are rich and many are poor; they include all ages and races. Some celebrities are changing our stereotypes about persons with disabilities, such as Christopher Reeves who altered our understanding of quadriplegia or Michael J. Fox who is changing our knowledge of and response to Parkinson’s disease. The mundane experience of colonization, however, cannot be overemphasized. Unexpected, increased physical demands occur as part of everyday life. Thus, a person with a disability finds that they must sometimes wait unexpectedly, or that they cannot find help when they need it – as, for example, when heavy or bulky boxes must be quickly moved from one place to another, or when quick escape from a wrecked automobile becomes necessary. In these ordinary but unexpected situations, the limits on physical ability make a disability part of one’s consciousness and separate it from the everyday world. Sometimes a new disability appears, or an established condition worsens. Again, the process of ‘‘feeling disabled’’ becomes dominant, and adjusting to a new normal life is necessary. In all of these situations, a disability is potentially in a process of change in definitions, physical needs, recipes, and expectations. The potential for the colonization of the self is dynamic and ever present.

‘‘FEELING DISABLED’’ BECAUSE OF AGING AND INTERACTION WITH OTHER CORE CODES The body changes and often becomes more limited in strength and physical abilities as one ages. These changes, again, can be defined and experienced as ‘‘normal’’ or result in feelings of loss and ‘‘disability.’’ For a person with a long-term disability, this aging process can be heightened by the interaction between the disability and the new bodily restrictions. This process can result in either ‘‘normal’’ or ‘‘disabled’’ feelings.’’ Feeling normal’’ may be more difficult to maintain as the body ages, but perhaps, new wisdom is also gained during these journeys through time. Probably, the readjustments will result in feelings dominant before the aging process, but this is an issue that needs further study.

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Aging and disability are often present with other major rules for behavior (i.e., core codes) that lead to oppression and repression (Deegan, 1989, 1998).6 The core code of bureaucracy was discussed above concerning medical verification of truth claims, but bureaucratic verifications and tests may also increase with increasing age and disability. Other rules governing social class, race, gender, sexuality, terrorism, and the modern use of time may interact with disability and age, too. Thus, many elderly people are disabled and living in poverty, or many elderly people with physical disabilities are women. This does not mean that aging results in disability, but for people with disabilities, aging may change the disability. Similarly, aging may not result in poverty, but people with disabilities are more likely to be in poverty because of the problems of employment and disability. In addition, hiring a person with a disability interacts with ageism in the marketplace. Finally, people with disabilities may move more slowly than able-bodied people. This is not a problem for a person with a disability who accepts the pace dictated by the disability. Interacting with an able-bodied person who steps on one’s heels, shoves one aside, or exhibits impatience through sighs, toe-tapping, and agitation, however, can lead to ‘‘feeling disabled.’’ Conscious awareness of such time pressures can help to maintain ‘‘feeling normal,’’ but the very act of bringing the disability to consciousness is a shock to the natural attitude. ‘‘Feeling normal’’ or ‘‘feeling disabled,’’ therefore, can be triggered by these and other core codes. Another aspect of this process emerges from an understanding of ‘‘multiple minority’’ statuses, especially for women with disabilities (Deegan, 1985). Multiple minority statuses are more that lists of all the possible problems associated with minority statuses, because they also combine with the benefits that can accrue from this process. Being shocked out of the natural attitude of able-bodyism, for example, can be a liberating experience. Understanding how to take the role of the other can be a skill honed through the experience of disability. Feeling freed from everyday norms of beauty and self presentation can have a similar result. Many people with hearing impairments enjoy deaf culture and find it a rich alternative to the able-bodied lifeworld. Disability is not always ‘‘tragic’’ but a potential source of strength and learning about the self and other. The interaction of different core codes and multiple minority statuses can be a source of new social standards, social networks, and ways of being in the world. ‘‘Feeling normal’’ can emerge as a result of such new perceptions and social constructions of the lifeworld.

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THE FLUIDITY OF ‘‘FEELING NORMAL’’ AND ‘‘FEELING DISABLED’’ DURING TRAVEL Travel may be an unexpected trigger for ‘‘feeling disabled’’ because travel is often selected as a desirable activity: change in the lifeworld is deliberately sought as a good thing. Of course, travel may be part of one’s everyday life as a commuter or a person in an occupation that requires it, but ‘‘vacations,’’ ‘‘trips,’’ or ‘‘visits’’ can be chosen as sources of ‘‘fun’’ or ‘‘adventure’’ (Deegan & Hill, 1982). For a person with a disability, however, travel upsets the nature of everyday life and its attendant recipes necessary to ‘‘feeling normal.’’ Travel can trigger new confrontations with the body due to physical restrictions in the mode of transportation; for example, sitting in one spot for an extended period can make limbs stiff or unreliable. ‘‘Private’’ transportation, especially with family and friends familiar with the demands of travel, can be ideal. If the person with the disability can drive, then this may provide the maximal amount of independence. But access to driver’s licenses can be fraught with harassment and humiliation. For example, I had lost my license because it had expired when I had a broken leg and temporarily could not drive. Then, I had a new injury and became visibly, permanently disabled, and I let my license lapse for several years. I finally gathered my courage, took all the tests, and was relicensed. Many years later, during a routine renewal, I had a bureaucrat from the Department of Motor Vehicles (DMV) accuse me of ‘‘covering up’’ my (visible) disability when I was really unable to drive. I was shocked by her charges because I had not had any accidents or even any tickets. She angrily said my license would be renewed that day because there was a long line behind me that I was inconveniencing. But she had put a notation in my record and on the computer, and I could never have an automatic renewal again. In the future, I would need to take the written and driving test every time my license needed to be reissued. I could never deceive the DMV again. As the time approached for my renewal, I had delayed it until a few days before its expiration. I studied every word of the driving booklet and was prepared mentally to take my driving test again. To my pleasant shock, my license was renewed quickly and pleasantly. My record did not have any notation requiring my retesting, and I was both elated and angry at how much I had suffered over my forthcoming retesting and potential humiliation. I thought this was a weird, unique experience until I read a similar account by Joan Tillifson (2004) on ‘‘The perils of getting a driver’s license.’’ She, too, had been terrorized by a DMV bureaucrat.

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She ‘‘fortunately’’ had the ‘‘right’’ answer for a bureaucratic question about her disability and her ability to drive. (The disability did not affect her ability, was the right answer, even though she had to make accommodations to make the answer true.) Ruth O’Brien (2004) also summarized several legal cases of license denial and discrimination, documenting this pattern of injustice. Because a person with a flawed body may have great dependence on mobility through the automobile, losing a license can lead to problems in obtaining food, employment, a social life, and access to the wider world. Thus, losing a license may lead to institutionalization and not to the relatively minor inconvenience of an able-bodied person who must take the bus or walk more. Traveling by airplane exacerbates these problems. In this situation, the person with a disability is continually confronted with new situations and definitions of ‘‘how to be moved.’’ Airlines often require untrained staff to do this work and their ignorance can lead to uncomfortable if not dangerous ‘‘handling.’’ Thus, I had an untrained airline employee try to put me on an escalator once when I was in a wheelchair. He ignored my protests and he almost lost control of the chair at the top of the escalator, and I narrowly escaped serious injury. On another occasion, the female clerk at the desk would not speak to me, only to my male life partner. She called several times for someone to come with a wheelchair without success. Finally, a man appeared but did not go to the desk, but repeatedly called my name in the lobby where he ignored my waving hand. When he ‘‘found’’ me, he took me to an elevator, and the doors closed on my injured foot. Then, when we got on the elevator, he ran me into the wall. Next, he took me to the wrong plane. When we arrived at our correct plane, there was no adjoining seat for my life partner and me, although we had reserved them, because we were the last to board and were put in the last two available seats. Clearly, he was incompetent and resentful, but without my life partner, this experience would have been even worse. I have had extensive experience with O’Hare airport, which hires special staff to deal with this ‘‘problem’’ (i.e., me), although their employees are usually paid a minimum wage and are largely untrained. These employees may be resentful of this ‘‘low status’’ position, be overworked and on a tight schedule, be under surveillance, and face a difficult task that is defined by their employees as ‘‘unskilled.’’ Often, the ‘‘helpers’’ have limited skills in English and are unable to respond to the explanations of the safe way to move the body of a person with a disability. There may be racial differences between the attendant and the person with a disability resulting in racebased tension, too.

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Usually people with disabilities are asked to enter the plane first because they may ‘‘slow up’’ the process of boarding by the able-bodied. Some people are comfortable with this efficient process, but others grumble about ‘‘privileges.’’ The most offensive able-bodied passengers are those in firstclass seats who have paid a premium to board early. Such privileges should go with money, they think, and they are the most likely group to push past a slower moving person and glare at such an ‘‘undeserving person’’ who is ‘‘in their way,’’ even if they are unimpeded in their rush to first-class seating. By law, one airline employee must stay with a disabled passenger until that passenger deplanes. The flight attendants do not wish to stay if there is a delay in disability services, however, so they will coax and smile to get the passenger with a disability off the plane. They may ask in a friendly voice to ‘‘help’’ the person with a disability. In my experience on many such trips, an employee has never informed me that they are required to help only when the person is on the plane: then the passenger can be and is abandoned. Resisting these ploys becomes part of ‘‘feeling normal,’’ because a passenger with a disability is only asking for service that must be provided. But such exchanges certainly can be triggers to ‘‘feeling disabled.’’ When the attendants understand the person with a disability will not be moved, they initiate a flurry of demands for services. This series of phone calls illustrate how difficult it can be to receive ‘‘service’’ while flying and how deliberate the attempt to manipulate the person with a disability is. All travel makes obtaining food and access to bathrooms problematic. Being ‘‘left’’ by strangers ‘‘helping’’ the traveler with a disability is stressful and a trigger for ‘‘feeling disabled.’’ These basic human needs are seen often as ‘‘extra work’’ and undesirable extra work by airline personnel. Thus, travel involves a series of confrontations between a person with a disability and people encountered during the journey at airports who make ‘‘feeling disabled’’ a common and often humiliating experience. I had one notable experience while traveling on Lufthansa in Germany where the airline personnel refused to call for a wheelchair and insisted I needed to walk only ‘‘one or two steps’’ to waiting transport – it ultimately turned out to be up and down steps and a considerable distance away (Deegan, 2000). Another disabling moment (Borg, 2005) occurred when a wheelchair attendant at the Miami airport removed the wheelchair and stranded me while I was in the restroom. On another occasion, an airline employee, a ticket agent, of American Airlines in Costa Rica pulled my wheelchair out of the line and refused to issue me a boarding pass. My repeatedly requesting my pass was ignored by the agent and by a series of other customers who passed me and were provided services while I was not (an example of the large number of

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people who participate in the disabling society). Finally, some young Canadian filmmakers who were waiting in line interceded on my behalf and demanded that the ticket agent provide me service. Being dependent on such services triggers ‘‘feeling disabled’’ and a pleasurable travel experience turns suddenly into an extremely difficult one. Travel is a time of change and ‘‘feeling normal’’ is deliberately challenged. ‘‘Feeling disabled’’ is not part of an exciting challenge, however, and makes the process of going on a journey problematic and filled with barriers. Although there is an increased awareness of the rights of passengers with physical disabilities, especially in public transportation, these rights are subject to interpretation, misinterpretation, and potentially unpleasant experiences.

‘‘FEELING DISABLED’’ IN MEDICAL SETTINGS Medical settings are, by definition, part of the disabling society because they help define, certify, and maintain disabilities while advancing truth claims of helping to minimize them. Clearly, some medical practitioners do help people with physical disabilities, but they are few and far between. The most notable exceptions are often people with minimal medical training and lower wages than physicians and administrators. Physical therapists and physiatrists are also often exceptions to this pattern because they may better understand the experiences of people with physical disabilities. But any medical practitioner who refers to a person with a physical disability in terms of their disability instead of their names defines the person in a mechanistic, disassociated manner. Thus, people are often referred to as a ‘‘paraplegic,’’ or as an ‘‘amputee,’’ collapsing the person with the body part defined as flawed. Medical personnel with great regularity respond to a flawed body part and not to the whole person who experiences this part. Medical personnel also are prone to making lists of problems they can find potentially through tests. The people subjected to these tests are rarely asked whether or not they want these tests done to them. A ‘‘sick role’’ expectation is obedience even if the person with a physical disability defines themselves as normal. The expertise of the person with a physical disability is rarely considered and routinely ignored. Medical personnel often talk to each other and not to the person with a physical disability, even when the latter person is the subject under discussion. Medical personnel are notoriously late to appointments, and the time of the person with a physical disability is defined as unimportant.

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‘‘Waiting rooms’’ are filled with people who are frustrated, often ill, and cantankerous. Even worse, some people in such rooms are self-righteously patient and participate in their own mistreatment and colonization of the self. The aptly named ‘‘patient’’ is paying considerable money to be treated badly while his/her time and lives are weighed in the balance. The mistakes and incompetence of medical personnel is supposed to be accepted or glossed over. This rudeness and arrogance are part of the dominance over patients. Bureaucratic procedures and language which are dehumanizing and obfuscating are used by medical personnel as forms of social distancing, alienation, and power. Being passed from one arrogant stranger to another — while being poked, prodded, and assessed — are ‘‘normal’’ experiences in medical settings, making them places of torture and inhumanity. Once when I had a shattered wrist that was being set by a surgeon to realign my bones, the doctor said what he was going to do was going to ‘‘hurt a little bit.’’ I stopped him and said my wrist was shattered, I was awake, and he was going to jerk it. What did he consider ‘‘painful’’ or ‘‘excruciating?’’ He reflected a moment and replied, ‘‘What I am going to do to you.’’ Obviously, this was a more respectful response to me, an embodied person experiencing great suffering. The interactions described in this section could apply in various degrees to any person entering the medical establishment. But becoming a ‘‘client’’ with a physical disability deepens and exacerbates the problems inherent in mainstream medical ‘‘care.’’ Medical settings are powerful and dramatic triggers for ‘‘feeling disabled.’’ They are significant components in the disabling society. Being considered a flawed body part that can be ‘‘fixed’’ and not as person with a physical disability is a common experience in hospitals, clinics, medical laboratories, and offices.

CONCLUSION ‘‘Feeling normal or disabled,’’ or sometimes feeling both, can be both a stable and potentially unstable way of being in the world. Meeting new people, confronting barriers, and having changes in the physical environment or in the body are potential sources of changing the balance between normal and disabled experiences. There is little research on ‘‘feeling normal’’ for individuals with disabilities because there is often an assumption that ‘‘feeling disabled’’ is the most common experience. There is a rich sociological literature on this process in the reflections and writings of Harriet Martineau and Annie Marion MacLean; however, that can be

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further studied and researched. This chapter is part of this sociological literature and tradition, but only a beginning step in a potentially rich examination of the self, colonization, and agency in hypermodern society. Because I employ a phenomenological approach, I concentrate here on my experiences of ‘‘feeling normal,’’ my dominant state of being in the world and at work. Sometimes, I can slide or fall into ‘‘feeling disabled,’’ as I documented here. My standpoint is tied to these embodied experiences. A related topic that I do not examine here is how can a person whose dominant state of being in the world and at work is ‘‘feeling disabled’’ be shifted or triggered into ‘‘feeling normal.’’ Similarly, I have some limits on mobility, but I would not be surprised if persons with different disabilities have different balances between ‘‘feeling normal’’ and ‘‘feeling disabled.’’ Surely, different events affect diverse disabilities in different ways. The interaction between disability and other core codes also needs further research. Different social classes, cultures, ethnic groups, and nations vary in their perceptions of what is disabling and what is not. Disabilities at birth probably affect these two states, too, and the process of responding to various traumatic causes for disability remains largely unknown. I hope this chapter introduces such questions into other studies and further research. For many, and perhaps most, people with disabilities, their everyday life feels normal. This is my paramount experience. The creation of disability and the experiences accompanying it are social processes. Thus, physical limits are often capable of being integrated into everyday life, but social limits are the most unstable, potentially humiliating, and dangerous factors emerging from physical disabilities. These social barriers are the most uncontrolled and vicious source of physical limitations, although a popular and more disabling view is that physical limits cause the greatest distress.

NOTES 1. In this chapter, I discuss ‘‘feeling normal’’ and ‘‘feeling disabled’’ for a person with a physical disability. I do not insert this phrase ‘‘for a person with a physical disability’’ repeatedly in the chapter, but I am discussing a specific type of ‘‘feeling normal’’ and ‘‘feeling disabled.’’ I do not use phenomenological examples of mental disability for ‘‘feeling normal’’ and ‘‘feeling disabled,’’ but this would be a researchable possibility. 2. I also observed other patients when I experienced almost a year of daily physical therapy and attended college. My doctoral dissertation was based on nine months of participant observation at a rehabilitation hospital (Deegan, 1975b). 3. I do not accept the concept of ‘‘social capital’’ as accurate and do not apply it here. I use Marx’s concept of capital as material, which precedes and creates the

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social process. I also use Marx’s concept of ‘‘alienation’’ to refer to estrangement from experience due to capital’s construction of reality. The veil and body line are linked to capital but can operate independently, too. 4. This changing relationship of body, self, lived experience, and being-in-theworld is one of the unique characteristics of variable disabilities. In this situation, the body varies significantly over different periods, sometimes during the day, but sometimes over a period of days, weeks, or even years (Deegan, 2000). Thus, feeling disabled varies with different types of disabilities. 5. This is an example of ‘‘counting steps’’ that I examine in Chapter 8 in this volume. 6. I do not use the term ‘‘intersectionality’’ to refer to this process (see Collins, 1990). Intersectionality has been dominated by questions of race, class, and gender, but I consider other processes of importance, too. Disability, of course, is not always a ‘‘category of social stratification’’ but crosses all such categories.

ACKNOWLEDGMENTS My thanks to Kathy Borg and Michael R. Hill who discussed some of these topics with me.

REFERENCES Borg, K. C. (2005). Disabling moments: A feminist pragmatist analysis. M.A. thesis, Department of Sociology, University of Nebraska-Lincoln, Lincoln, NE. Collins, P. H. (1990). Black feminist thought. New York: Routledge. Deegan, M. J. (1975a). The symbolic passage from the living to the dead for the visibly disabled. Journal of Symbology, 6(November), 1–14. Deegan, M. J. (1975b), Identity change in modern society: A study of the physically disabled. Ph.D. dissertation, Department of Sociology, University of Chicago, Chicago, IL. Deegan, M. J. (1977a). The non-verbal communications of the physically handicapped. Journal of Sociology and Social Welfare, 4(May), 735–748. Deegan, M. J. (1977b). Depression and physical rehabilitation. Journal of Sociology and Social Welfare, 4(July), 945–954. Deegan, M. J. (1978). Living and acting in an altered body: A phenomenological description of amputation. Sociology and Social Welfare, 5(May), 342–355. Deegan, M. J. (1981). Multiple minority groups: A case study of physically disabled women. Journal of Sociology and Social Welfare, 8(July), 274–297. Deegan, M. J. (1985). Multiple minority groups. In: M. Deegan & N. Brooks (Eds), Women and disability: The double handicap (pp. 37–55). New Brunswick, NJ: Transaction Books. Deegan, M. J. (1987a). Being disabled in America. In: E. Hess, E. Markson & P. Stein (Eds), Sociology (p. 144). New York: Macmillan. Deegan, M. J. (1987b). The female pedestrian: The dramaturgy of structural and experiential barriers in the street. Man-Environment Systems, 17(May–July), 79–86. Deegan, M. J. (1988). Jane Addams and the men and the Chicago School, 1892–1918. New Brunswick, NJ: Transaction Books.

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Deegan, M. J. (1989). American ritual dramas: Social rules and cultural meanings. Westport, CT: Greenwood Press. Deegan, M. J. (1998). The American ritual tapestry: Social rules and cultural meanings. Westport, CT: Greenwood Press. Deegan, M. J. (1999). Play from the perspective of George Herbert Mead. In: G. H. Mead & M. J. Deegan (Eds), Play, school and society (pp. xix–cxii). New York: Peter Lang. Deegan, M. J. (2000). Counting steps: The phenomenology of walking with variable mobility. Disability Studies, 20(Summer), 232–242. Deegan, M. J. (2001). Making lemonade: Harriet Martineau on being deaf. In: M. R. Hill & S. Hoecker-Drysdale (Eds), Harriet Martineau: Theoretical and methodological perspectives (pp. 41–58). New York: Routledge. Deegan, M. J. (2005). Harriet Martineau and the phenomenology of Life in the Sickroom (1844). Sociological Origins, 3(Spring), 86–92. Deegan, M. J. (2010). Annie Marion MacLean. Unpublished book manuscript. Deegan, M. J., & Brooks, N. A. (1985). Women and disability: The double handicap. New Brunswick, NJ: Transaction Books. Deegan, M. J., & Hill, M. R. (1982). The female tourist in a male landscape. CELA Forum, 1(Summer), 25–29. Deegan, M. J., & Hill, M. R. (Eds). (1987). Women and symbolic interaction. Boston, MA: Allen and Unwin. Feagin, J. R., & Feagin, C. B. (1978). Discrimination American style: Institutional racism and sexism. Englewood Cliffs, NJ: Prentice-Hall. Feagin, J. R., & Vera, H. (2008). Liberation sociology (2nd ed.). Boulder, CO: Paradigm. Feagin, J. R., Vera, H., & Bantur, P. (2001). White racism (2nd ed.). New York: Routledge. Fish, D. E. (1986). Disabled persons and death anxiety in counselor trainees. Journal of Rehabilitation, 52(January–March), 53–55. Goffman, E. (1959). The presentation of self in everyday life. Garden City, NY: Doubleday. Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. Englewood Cliffs, NJ: Prentice-Hall. Goffman, E. (1974). Frame analysis: An essay on the organization of experience. New York: Harper and Row. Habermas, J. (1984). The theory of communicative action. (Vols. 1 and 2, T. McCarthy, Trans. 1987). Boston, MA: Beacon Press. Hughes, B., & Paterson, K. (1997). The social model of disability and the disappearing body: Towards a sociology of impairment. Disability and Society, 12(3), 325–340. MacLean, A. M. (1914). Mary Ann’s malady: Fragmentary papers dealing with a woman and rheumatism. New York: Broadway Publishing Co. MacLean, A. M. (1918). Cheero! New York: Woman’s Press. MacLean, A. M. (1923). This way lies happiness. Open Court, 37(January), 23–29. Maly, M. R., & Krupa, T. (2007). Personal experience of living with knee osteoarthritis among older adults. Disability and Rehabilitation, 29(September), 1423–1433. Martineau, H. (1836). Letter to the deaf. In: H. Martineau (Ed.), Miscellanies (Vol. 1, pp. 248–265). Boston, MA: Hilliard, Gray and Co. Martineau, H. (1844). Life in the Sickroom. Boston, MA: Leonard C. Bowles and William Crosby. Martineau, H. (1878). In: M. W. Chapman (Ed.), Harriet Martineau’s autobiography. Boston: James B. Osgood.

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Marx, K., & Engels, F. (1848). Manifesto of the communist party. Reprint. New York: International Publishers, 1932. Mead, G. H. (1934). In: C. Morris (Ed.), Mind, self and society. Chicago, IL: University of Chicago Press. Mead, G. H. (1999). In: M. J. Deegan (Ed.), Play, school and society. New York: Peter Lang. Murray, C. D. (2004). An interpretive phenomenological analysis of the embodiment of artificial limbs. Disability and Rehabilitation, 26(16), 963–973. O’Brien, R. (2004). Providing public accommodations: Testing, testing, and retesting the disabled. In: R. O’Brien (Ed.), Voices from the edge (pp. 167–175). New York: Oxford University Press. Parsons, T. (1964). Social structure and personality. New York: Free Press. Reinharz, S. (1984). On becoming a social scientist. New Brunswick, NJ: Transaction Books. Schutz, A. (1962). In: M. Natanson (Ed.), Collected papers, Vol. 1: The problem of social reality. The Hague, The Netherlands: Martinus Nijhoff. Schutz, A. (1967). The phenomenology of the social world. (G. Walsh & F. Lehnert, Trans.). Evanston, IL: Northwestern University Press. Schutz, A. (1970). In: R. M. Zaner (Ed.), Reflections on the problems of relevance. New Haven, CT: Yale University Press. Schutz, A. (1971). In: A. Brodersen (Ed.), Collected papers, Vol. 2: Studies in social theory. The Hague, The Netherlands: Martinus Nijhoff. Tillifson, J. (2004). The perils of getting a driver’s license. In: R. O’Brien (Ed.), Voices from the edge (pp. 162–166). New York: Oxford University Press. Turner, V. (1969). The ritual process. Chicago, IL: Aldine. Turpin, M. J. (2008). Redefining failure: Phenomenology and meaning. Australian Occupational Therapy Journal, 55, 283–286. Willett, J. C., & Deegan, M. J. (2001). Liminality and disability: Rites of passage and community in hypermodern society. Disability Studies Quarterly, 21(Summer), 137–152.

OUT OF A COMA AND INTO A WHEELCHAIR: SOCIAL AND PHYSICAL ACCESSIBILITY AND THE CONSTRUCTION OF DISABLED IDENTITY Jay Chaskes ABSTRACT This chapter explores the process through which one’s moral career proceeds as one acquires a physical disability later in life. The author, who acquired a disability later in life, explores Goffman’s notion of ‘‘moral career’’ as a process constructed from one’s experience with both physical access and social access to the environment in which everyday interaction takes place. Using the extant literature and his personal experience, the author argues that one’s identity as a person with a disability is always in a state of evolution. Rather than stable and fixed, it is unstable, although the rate of change is quite variable.

Disability as a Fluid State Research in Social Science and Disability, Volume 5, 49–66 Copyright r 2010 by Emerald Group Publishing Limited All rights of reproduction in any form reserved ISSN: 1479-3547/doi:10.1108/S1479-3547(2010)0000005005

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INTRODUCTION There is a dearth of material concerning the process of moral career with respect to those with a physical disability acquired later in the life course. There are some richly descriptive and critically insightful autobiographical accounts of moral career (e.g., Linton, 2006; Grealy, 1994; Mairs, 1996; Zola, 1982), but they fail to examine moral career for those who acquire a significant physical impairment later in their life course. What follows are some observations of the author’s experience with critical illness and its consequent crippling impairment. This chapter explores the process through which one’s moral career proceeds as one acquires a physical disability later in life. In particular, I explore Goffman’s notion of ‘‘moral career’’ as a process constructed from one’s experience with both physical access and social access to the environment in which everyday interaction takes place. Obviously, these two aspects of the person’s experience do not operate independently of one another (Wee & Paterson, 2009), but for heuristic purposes, some of this discussion will proceed in that fashion. I take the stance that socialization to the new circumstances of permanent impairment and any subsequent shifts in social identity are played out in a highly interactive environment and not one that is mechanistic and deterministic. Also, I argue that disability acquisition produces a variety of identity transformations over time and thus a variety of meanings to one’s sense of ‘‘spoiled identity.’’ Moral career has a temporal dimension. How I understand my sense of social and personal identity is not stable over time, but rather it is always in a state of evolution, although the rate of change is quite variable. This parallels our understanding of aspects of all social roles over time, not just those aspects of social identity we designate as ‘‘spoiled.’’ The fluid nature of the identity of disability has been explored elsewhere (e.g., see Barnartt, 2007). I have been a sociologist for four decades. Coincidentally, I have taught deviant behavior for much of my career and have a working knowledge of the dramaturgical approach as well as some familiarity with the sociological literature on disability as deviance. Six years ago, I would have never imagined I would be exploring my own experience with permanent disability. However, many observers have noted that when normals encounter a person with a visible physical disability, they may be made uneasy by the realization that they too could easily qualify for this status, which requires nothing more than acquiring an incapacitating illness or becoming the victim of an accident, that is, simple happenstance or fate. My presence among normals is a reminder of our shared human frailty.

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What follows is an autobiographical account of my experience with the process of integrating my rather newly acquired stigma into my existing social identity. For purposes of this discussion, and to be consistent with Goffman’s categorical notion of abominations of the body as encompassing his understanding of physical disability, I will use the term ‘‘disability’’ to refer to one’s physical impairment. Within the field of disability studies, this definition is understood as the ‘‘medical model’’ (Barnes, Mercer, & Shakespeare, 1999). Simultaneously, when I am addressing the issue of physical and social access, I am employing the ‘‘social model,’’ which asserts that disability is an issue of social injustice in that those with physical, mental, or cognitive impairment are singled out for differential and unequal treatment. Additionally, it is worth noting that there is some conceptual ambiguity between the process of aging and the acquisition of disability in the later stages of the life course (Priestley, 2003; Kemp and Mosqueda, 2004).

Out of a Coma and into a Wheelchair My impairment is the result of a Staphylococcus infection that attacked multiple internal organs, particularly my kidneys and heart in April of 2004. While in a coma, I had open heart surgery, a ‘‘small’’ stroke, blood clots, and an assortment of other life-threatening medical complications. The impairment that I acquired is a crippling condition known as critical illness axonal polyneuropathy. The condition occurs in patients who have multiple organ failure while being supported by a ventilator. Not infrequently, when the ventilator is removed, the patient dies. Survivors may completely recover while others sustain varying levels of neuromotor damage ranging from mild neuromuscular ‘‘weakness’’ to paraplegia. I awoke from a seven-week coma in the intensive care unit of a major university hospital in the middle of the night to find myself paralyzed from the neck down. My hospitalization spanned five months, with the last nine weeks spent in an acute rehabilitation unit of the same hospital. I then received a year of outpatient rehabilitation and also employed home health aides seven days a week during that same period. In January of 2005, I returned for spring semester at my university on a part-time basis and resumed full-time duties in fall of 2006. I use an assortment of ‘‘adaptive equipment’’ that allows me to accomplish various activities of daily living unassisted by others. Depending on the terrain and distance I have to travel, I use a cane, forearm crutches, a wheelchair,

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or no assistive device other than the braces I must wear on both my legs. I drive a car with hand controls, use a stair lift at home, as well as a shower seat and an adaptive device for the commode. I have resumed many of my previous familial, occupational, and recreational roles, albeit within the limitations imposed by my impairment.

Stigma, Disability, and Moral Career For Goffman, stigma and its resulting spoiled identity are social construct as is evidenced by the following passage (1963, pp. 137–138): The normal and the stigmatized are not persons but rather perspectives. These are generated in social situations during mixed contacts by virtue of unrealized norms that are likely to play upon the encounter. (emphasis added)

In Goffman’s (1963) terms, my stigma is an ‘‘abomination of the body,’’ which is typically quite visible most of the time and therefore causes me be ‘‘discredited’’ to use Goffman’s term. With this type of spoiled identity Goffman asserts, encounters with ‘‘normals’’ requires that I ‘‘reduce the tension’’ these daily encounters generate as the result my visible condition symbolizing a set of ‘‘unrealized norms.’’ Goffman writes that (1963, p. 32), Persons who have a particular stigma tend to have similar learning experiences regarding their plight, and similar changes in conception of self–a similar ‘moral career’ that is both cause and effect of commitment to a similar sequence of personal adjustments. (emphasis added)

Recently, Wee and Paterson (2009) suggest that both physical and social factors are taken into account by the physically handicapped in constructing their sense of participation in the activities of daily life. My ‘‘sequence of personal adjustments’’ can be understood in terms of both physical and social factors defining the accessibility of my world. Physical accessibility references architectural features of buildings and outdoor and public spaces designed for people whose mobility does not depend on assistive devices such as wheelchairs, crutches, and the like. Thus, these architectural features create barriers for those who are impaired and depend on assistive devices. Social accessibility speaks to the attitudes, emotions and behaviors, of normals that limit or constrain social acceptance. Social accessibility, in Goffman’s terms, is the extent to which encounters with normals generate tension that must be managed.

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Goffman goes on to note that moral career assumes four general patterns, one of which best describes my experience. Goffman notes that this pattern is illustrated by one who becomes stigmatized later in life y Such an individual has thoroughly learned about the normal and the stigmatized long before he must see himself as deficient. Presumably he will have a special problem in re-identifying himself, and a special likelihood if developing disapproval of self. (1963, p. 34)

He also notes that medical professionals are ‘‘likely to have the special job of informing the infirm who he is going to have to be’’ (Goffman, 1963, p. 35). In my situation, how I received such information, from whom and when, were crucial to my interpretation of who I was ‘‘going to be.’’ My experience suggests that socialization to the new circumstances of permanent disability and any shifts in social identity are played out in a highly interactive environment and not the one frequently portrayed as mechanistic, deterministic, and unavoidable. Beginning with Fred Davis’s (1961) often cited work, other studies (e.g., Higgins, 1980; Schneider & Conrad, 1983) have asserted a far less deterministic and more complex process of moral career and stigma management in which the stigmatized actor is an active and proactive agent in the reconstruction of a presumed spoiled identity. Gill (2001, pp. 362–363) cites a number of studies critically challenging the dynamics of the stigma process. Goffman (1963) does recognize that management of stigma for the discredited can be understood to varying by the level of intimacy between the stigmatized and the normal. However, he does suggest that over the life course, one becomes ‘‘type-cast’’ by one’s stigma. Nevertheless, intimacy is an important variable when examining any such encounters between normals and the stigmatized. Both the physical and the social aspects of accessibility in the environment in which I function interact to produce a socially situated definition of my encounters with normals. Disability acquisition produces a variety of situated meanings to one’s sense of ‘‘spoiled identity.’’ In mixed contacts, a variety of definitions of what is perceived as spoiled identity by the audience as well as the stigmatized person’s own definition of spoiled identity are contingent upon both the physical surroundings and the level of intimacy between actor and audience. Following Goffman’s dramaturgical approach, I bring into play the notion of ‘‘auditioning’’ to emphasize the highly interactive nature of moral career. I audition for a particular interpretation of my impairment a definition of the situation, based on my physical surroundings and my perceived level of intimacy with the audience. The audience respond to my interpretation

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of impairment and my claim to its meaning with what Goffman (1963, p. 2) calls ‘‘virtual social identity.’’ In Goffman’s terms, it is my neuromuscular damage and the resulting diminished mobility that renders me ‘‘disqualified from full social acceptance’’ (1963, p. 3). My experience suggests that the notion of the self as necessarily conforming to the dictates of one’s acquired disability as spoiled identity is a more complex and nuanced progression than often portrayed.

DISABILITY AND SOCIAL IDENTITY Accounting for Disability Thomas (2007, pp. 26–27) observes that, ‘‘One thread in illness narrative research recognized that it was by ‘telling one’s story’ that patients integrated their symptoms into a new sense of self, a new personhood.’’ My ability to integrate my status as a permanently impaired male over 60 years of age required that I fully understood what had happened to me medically and how I responded to my new circumstances. I needed to construct a narrative, to create an account of how I came to assume the status of a permanently disabled male, first for myself, and then for others. The difficulty of doing so resides with the process itself. Because my condition is an ascribed status, my disability ‘‘resides with who I am; rather what action I may have taken’’ (Pfuhl & Henry, 1993, p. 122). Thus, auditioning is contingent upon understanding the role I was to play, that is, script, character, and plot development. In Goffman’s terms, I was faced with building a revised ‘‘virtual social identity’’ (1963, p. 2). It was apparent to me, within a short time after I began to recover, that inevitably I would have to explain ‘‘what happened to me’’ as part of any auditioning. Auditioning is an ongoing process of redefining and refining this new role as is the case with any social role that contains any significant temporal dimension. Not only must I explain the origin of my stigma, but I needed to comprehend what constraints were to be imposed upon me as a result of my neuromotor damage. As Thomas (1966, p. 4) observes, rehabilitation patients are faced with ‘‘prognostic uncertainty’’ as was my situation. This uncertainty suggested that a crucial part of creating a narrative would be how I approached my rehabilitation. Clearly, various medical professionals influenced my understanding of my impairment. Thomas observes that with permanent disability, the patient is expected to accept the limitations imposed by physical impairment, be motivated to realize what gains are

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possible through rehabilitation, and to carry on ‘‘realistically’’ within the limitations imposed by impairment (1966, pp. 4–5). Because of the prognostic uncertainty regarding my recovery, I had no sense of any future limitations regarding my mobility. While in the hospital’s acute rehabilitation unit, I experienced considerable pain and struggle during various physical exercises that comprised my rehabilitation program. However, my continual insistence on doing more exercise than I was asked to do as well as my enthusiastic approach to the rehabilitation program conveyed a strong sense of motivation. My unwavering optimism was met with a positive response from both the doctors and the therapists. Because there are no diagnostic tools to assess my potential for complete recovery, the professional staff was compelled to rely on their clinical experience, which can be markedly variable from patient to patient. Thus, the staff was reluctant to convey a definitive sense of my spoiled identity. I would get approving looks from the entire staff, doctors, therapist, nurses, and nursing aids. Every step in recovery, no matter how small, was greeted with enthusiastic approval; from being able to hold a plastic spoon in my hand to being able to take my first step while holding on to parallel bars with the assistance of two physical therapists. My family and close friends joined in this chorus of praise. No one ever used the term ‘‘disabled’’ or uttered anything about any limitations other than the immediate ones confronting me. During this period, my sense of spoiled identity was optimistically temporary. From that point until now, I have continued to reassess my limitations and, therefore, to redefine the way in which I understand my identity as spoiled.

Disabled Identity as Unstable and Nonlinear Once I was home from the hospital, my narrative construction of self continued with my physical and occupational therapy as an outpatient. My therapists were very diligent about my safety but, at the same time, pushed me to go further and do more. For much of my outpatient rehabilitation, my potential for falling was substantial and required diligence on the part on my therapists. Yet, they communicated only a healthy respect for a potential mishap. Any concerns for my safety were overshadowed by their eagerness for me to progress. When you have these types of experiences, you acknowledge impairment but not disability. I was impaired, but not disabled. For 11 months, I spent 8 hours a day, 5 days a week with 3 different trained and licensed home health aides. In these encounters, the level

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and duration of interaction was the least formal and almost as intimate as family. One consistent part of my narrative with each one involved a discreet discussion of how I compared to other patients they had worked with. These comparisons were focused on my patient role play as compared to the others. All three viewed me as the ideal patient: enthusiastic and optimistic about my recovery, very cooperative, and noncomplaining. Two of my aids also drove me to work and had the opportunity to see me function in my role as a professor. This served to further ‘‘normalize’’ our relationship. Whenever I progressed to being able to do something unassisted, one of my home health aides would say, ‘‘Look at your bad self go!’’ These interactions supported the idea that I was ‘‘normal’’ except for my impairment. The rehabilitation process was going to be attenuated. For the past five years, my rehabilitation has continued, albeit at a diminishing pace. My physical recovery has ceased with regard to improved neuromotor function. I continue to learn how to cope with my impairment, learning new or more efficient ways to accomplish my required activities of daily living. In my case, this level of uncertainty with regard to recovering any neuromotor functioning persisted for three years while other related health issues remain chronic. During my hospital stay and the initial period of recovery, information regarding my condition and all prognoses were revealed over the course of several weeks and months. It was, and still is, continually necessary to make sense out of what my impairment imposes upon me physically and socially. I did not fully understand what I had endured medically until after I had been released from the hospital. I had been near death for several weeks, enduring major life-threatening complications from an already lifethreatening infection. My wife and my doctors told me what happened in small increments over time. I returned home, and only then did I truly begin the process of assimilating my experiences into a narrative account. In retrospect, comments from doctors, nurses, family, and friends during my hospitalization and after were often informative bits of information that it took many weeks to process and incorporate into a coherent account of my journey into disability. Given the prognostic uncertainty of my condition and the attenuated process of learning my story, any sense of being a ‘‘permanently disabled person’’ came slowly. At the very same time I was constructing a narrative, I was a rehabilitation patient. Thus, my sense of my physical recovery was continually changing as were the techniques I learned to cope with my altering level of impairment. Looking back over the six years since my healing process began, I am frequently surprised

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at my shifting sense of ability and capacity associated with my impairment. My assessment of my ability and capacity is anything but linear. There have been many times when I was too optimistic about how much recovery I could achieve. At times, I was driven by the wish to appear less impaired: to audition for more normality. I continue to discover more subtle and less visible levels of impairment not noticed while I was more focused on ameliorating more visible impairment.

ACCESSIBILITY AND IDENTITY CONSTRUCTION Had I become disabled much earlier in the life course, my impairment would have raised questions about how I could play future roles such as spouse, parent, or employee. The moral career that would have unfolded would have been starkly different from the one I am now living. Reconstructing my identity as an older disabled male is a process that requires me to accommodate and incorporate my impairment into already long established roles. In so doing, my social and personal identity as a person with a disability emerges. In addition to the construction of an ongoing narrative account, my moral career is constructed out of my everyday encounters with my physical and social environment. For heuristic purposes only, I am discussing physical and social accessibility as if they were independent of one another, although clearly they are not.

Physical Access The importance of the physical world in creating a context for everyday interaction is called to our attention by the dramaturgical approach. Goffman (1961) notes that ‘‘performance’’ occurs on a front stage, is constructed on a ‘‘back stage,’’ and both are isolated from the ‘‘outside.’’ Our daily interaction is bounded by architecture that is enhanced by various ‘‘props’’ that are designed to enhance our daily performance and aide in defining the ‘‘setting’’ for our daily performances. I have had to develop an entirely new and circumspect sense about my physical surroundings. When one uses assistive equipment such as a wheelchair, everyday architecture and its props frequently impede, diminish, or disrupt one’s performance. Hebl, Tickle, and Heatherton (2000) discuss how stigmas can produce awkward moments during the interaction of mixed contacts. In turn, they note that a type of awkward moment is produced by

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‘‘disruptiveness,’’ which ‘‘refers to the extent to which a stigma makes itself visible’’ (Hebl et al., 2000). They note that disruptiveness is a way to assess the tension produced from awkward encounters. Assistive devices such as wheelchairs or forearm crutches in combination with physical barriers in public places are fertile ground for creating awkward and disruptive encounters. One’s sense of spoiled identity is intensified by a performance that readily calls attention to one’s difference as they attempt to navigate a ‘‘front-stage’’ performance. Steps at the entrance to a building, staircases, narrow doorways, steep ramps, and the typical arrangement of furniture are some of the physical arrangements that can make encounters with normals potentially and actually awkward. The physically disabled are rarely taken into account beyond very minimal statutory mandates for architectural design, and therefore, often these mandates fail to cover many situations. In everyday encounters, I come across situations in which statutory mandates do not exist. For example, there are few classrooms in my workplace that allow me to navigate in a wheelchair without having to move some of the furniture. From my wheelchair, only the bottom one-third of the whiteboards in my classrooms is available to me. Also, many public places and commercial businesses simply ignore the legal requirements. My everyday interaction is almost always bordered by physical barriers. The way in which I must maneuver to open doors, detour to utilize a ramp, an automatic door, and the like are typically part of my awkward social encounters with ‘‘walkies.’’ When in my wheelchair, I have the same height perspective as the typical seven- or eight-year-old child. I have become invisible to most adults when I am in my wheelchair. When interacting with walkies, I am looking up at them; we are not at the same eye level. I cannot ‘‘roll along’’ with others and easily make eye contact. I am obliged to twist my head and tilt it up simultaneously to make eye contact. I always find this situation awkward and somewhat demeaning. I have developed a heightened sense of building design; I pay careful attention to any physical arrangements designed to accommodate my wheelchair or crutches such as ramps and automatic doors. When I am with others, I have to look for ‘‘my’’ entrance or exit, which may put me on a circuitous route while bipeds are free to ignore these accommodations. Moving from point A to point B may also require thoughtful and at times unorthodox navigation due to the inconvenient placement of curb cuts and ramps or the complete lack thereof. Before the recent addition of ramps to a set of outdoor stairs on my campus, I was compelled to go into a building and use an elevator to avoid the ‘‘long way around.’’ Navigating public

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streets requires caution with regard to inattentive walkers, broken concrete, delivery trucks, or bicycling kids on the sidewalk, outdoor cafe´ tables and chairs, and the like. At times, these barriers leave me dependent on sympathy and good will of strangers for help, which results in my need to be excessively polite, but very ill at ease (Cahill & Eggleston, 1994). Even with forearm crutches or a wheelchair, there are some types of terrain, such as sandy beaches, that are largely inhospitable and ‘‘out of bounds’’ to me. For me, the adaptive devices I use to achieve some modicum of physical mobility do not represent ‘‘stigma symbols’’ (Goffman, 1963) so much as they constitute part of who I am. They have become much like my limbs, that is, part of me. Depending on the normals involved, when others touch my adaptive devices, I may well define those actions as a violation of my personal space. For example, I particularly find it annoying when individuals lean on the push handles of my wheelchair when talking to me. In Kenneth Zola’s (1982) account of life as a wheelchair user, he provides a vivid autobiographical account of how a wheelchair user’s everyday cognitive map is structured by physical barriers and obstacles. For 61 years of my life, these barriers and obstacles did not exist. I have learned to be both observant and circumspect about venturing out to a new locale. I have learned to gather intelligence, that is, to ask pointed questions about the existence of physical barriers. This is especially true with regard to private residences. In addition to the question of physical barriers, I need to know something about the terrain I will encounter and thus what type of assistive device will I need. How far will I have to walk? Does that distance require a wheelchair? As a result of these considerations, many social outings are now less spontaneous, requiring a review of possible barriers and the selection of the necessary assistive devices. In other words, something similar to rehearsing a performance may be required, especially the need for ‘‘props.’’ In Goffman’s (1961) terms, I have to become quite ‘‘circumspect’’ about my role performance.

SOCIAL ACCESS Visibility, Accessibility, and Intimacy The notion of social access from Goffman’s perspective can be understood as the extent to which one’s stigma generates a demand that the stigmatized manage their spoiled identity during encounters with normals. Goffman suggests that the more conspicuous the evidence of one’s disability, the

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greater the tension between those with a spoiled identity and normals during mixed contacts. Some (Cahill & Eggleston, 1994, 1995; Davis, 1961) have suggested that it is the burden of the disabled person to manage the situation and to put normals at ease, particularly strangers during public encounters. My lived experience is a daily mix of multiple assistive devices. My leg braces are the one constant during my day. They are in full view of an audience when I am wearing shorts in the summer or at the gym. I use my power wheelchair most frequently at work to travel from my office to class within the same building and to travel between buildings on campus. I also have a manual wheelchair I use in public places, such as malls and museums, when I am required to move about or go more than a city block or two. For short distances, I will use my forearm crutches or a cane. I use the latter less frequently than the former because I have come to realize how limited my balance actually is with only my cane. Thus, the extent to which my stigma is obvious, or perhaps more accurately obtrusive, depends on what particular clothing and assistive devices I am using. It is during encounters with strangers or acquaintances that I find myself the most ill at ease and the most consciously motivated to manage my spoiled identity. When I initially returned home from the hospital, I was dependent on a wheelchair and transfer board for my mobility. During the course of my subsequent three-year rehabilitation, I was able to transition to a walker, than to forearm crutches, and finally to a cane. During this period of increasing ease of mobility, my goal became to progressively depend more on my cane, a less conspicuous assistive device, for my mobility. My goal was to appear to move about much as I had done for the previous 61 years. I soon discovered that to do so would require an enormous expenditure of physical energy, more energy than I had during a given day. I came to appreciate my diminished capacity as part of my impaired circumstance. This new insight was, at first, difficult to accept because I now could hope to make my stigma appear less obvious. It was then that I began to entirely embrace a sense of permanent disability and genuinely define myself as a person with a permanent disability. In later encounters with acquaintances and intimates, I ceased to make the claim that I might, with time, make something close to a full recovery. That is to say, I was in effect claiming to play the sick role because I was offering the expectation that I would recover. Unlike the sick, the disabled are not expected to physically recover. However, the disabled are expected to resume previously played roles within the limitations imposed by one’s disability. Thus, my narrative came to reflect my status as permanently disabled. My use of assistive devices continues to be part of how I audition, how I negotiate an understanding of

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my role as a disabled person, and how I make claims about my virtual identity as a competent role player. This ongoing process of audition, negotiation, and role playing legitimacy is contextualized by the level of intimacy between me and the audience.

Social Access with Strangers For me and more generally for others, there are substantial differences in mixed contacts with strangers or casual acquaintances and those with whom I maintain a decided level of intimacy, such as family and friends. For me, the differences are quite stark. With regard to the former, my experience has been that these encounters parallel what many have observed and what Goffman (1963) asserts we are to expect when normals have public encounters with the conspicuously physically disabled, that is, the discredited. At times, I assume the status of a nonperson; I am invisible or treated as if I were a nonhuman object placed in the path of walkies. If eye contact is made, it is quickly broken off. I might be the recipient of unsolicited aide or ingratiating sympathy (Cahill & Eggleston, 1994). At other times, I am the recipient of surreptitious or not so furtive stares. In their research on wheelchair users, Cahill and Eggleston (1994) suggest that wheelchair use in public places presents the user with complex emotional terrain that demands to be managed. For me, the use of an obvious assistive device requires me to manage the inevitable tension that comes with interaction with strangers. While comparing the experience of traditionally recognized minority groups to persons with disabilities, Gill (2001, p. 366) makes the following observation that serves to summarize some of my experience in encounters with strangers and mere acquaintances, To be irrationally disclaimed by others, and to feel it every day of your life, and to share that experience with both intimates and a substantial community are clearly horrible. That is the reported social experience of many minority people in encounters with the dominant culture. On the other hand, to be silently, smilingly dismissed as someone pathetic and strange and encounter dismissal even in cultural milieu you call your own is confusing and dispiriting. That is the standard social experience of disabled people in the nondisabled world they inhabit. (emphasis added)

It is these ‘‘confusing and dispiriting’’ experiences that give me a sense of the upper end of an imaginary scale of how spoiled my identity can be. These experiences, unlike my minority experiences, were acquired at a juncture in my life when I felt most comfortable and established in the roles I held

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as most central to identity, particularly familial and professional roles. As a person with a disability, these encounters encouraged my exploration into the world of identity politics among the disabled. It also promoted my interest in the field of disability studies and produced something of a shift in my professional identity. At this juncture in my moral career, I find being treated as a nonperson or one without the right to privacy, more like a fragment of ‘‘experiential datum,’’ useful for one who teaches disability courses, and less as a personal affront.

Social Access with Intimate Others My encounter with intimate others is, for me, qualitatively different from encounters with strangers regarding the issue of spoiled identity. My social identity had been well established with intimate others before I became impaired. I was previously a husband, father, grandfather, academic, close friend, and the like. The central question became how my newly acquired spoiled identity might alter the quality of future encounters. For me, the issue was not a question of assuming new roles with the added difficulty of a spoiled identity. My task was one of taking my status as a person with a disability and incorporating or integrating it into the established roles I had been playing over the course of my adult life. Unlike a young adult, I was not confronted with the task of obtaining an education, finding a mate, and establishing a reasonably secure way of earning a living. I was not faced with the problem of being disabled and having to establish my independence. Once out of the hospital, I never questioned my ability to resume my previous independent adult standing. Indeed, much of my auditioning with intimates was focused on defining my previous roles as less than seriously diminished by my neuromotor damage. It is difficult to overestimate the impact my wife of 43 years has had on my reconstruction of self. She functioned as my medical surrogate, advocate, and gatekeeper throughout my hospitalization. In so doing, she significantly shaped how I came to define my medical experience as well as helped to shape how doctors and nurses came to see me as more than merely a diagnostically complex medical challenge. She was my historian, recounting and interpreting what happened to me medically, with all its menace, complexity, and nuance, and reporting what was happening in my social network of friends and colleagues. The way in which she discussed aspects of my medical condition conveyed no alarm, no sense of the fact that my survival was questionable for over three months, often on a day-to-day basis.

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To have my doctors and nurses understand that I had a history as a whole person playing a number of roles before my hospitalization, my wife brought family albums to the hospital to show the staff what I was like before I became ill and fell into a coma. She would often take the opportunity to tell doctors and nurses something about our life before my illness. My wife’s interpretation of my illness that she communicated to me was that what happened to me was more like a fascinating medical experience and less like a near death experience. I really could not process the experience until weeks after my hospital discharge. In spite of some cues from the hospital staff, I never quite understood the gravity of my situation at that time (e.g., some nurses were referring to me as ‘‘the miracle patient’’). For the past three years, our family has defined me as a person with an impairment, rather than as a disabled person. My impairment does not define who I am. It is not, for them, a master status I occupy. My adult children, who are married and have families of their own, showed as many signs of anxiety as my wife over my condition while I was hospitalized. While acknowledging my physical limitations, they have come to normalize our interaction. This observation holds equally true for our extended family. They have come to ‘‘over normalize’’ our relationships; that is to say, they no longer see a contradiction between my impairment and standards of normalcy (Pfuhl & Henry, 1993, p. 201). I am not the only person making a claim for deviance disavowal; members of my family were equally making that claim on my behalf or at least honoring that claim. They are doing more than just honoring my claim that my ‘‘handicap is not all of who I am’’ (Levitin, 1975, p. 554). My friends and colleagues use words such as ‘‘amazing,’’ ‘‘tough,’’ ‘‘courageous,’’ and ‘‘determined’’ to describe my behavior. They have come to see me as one who was tenacious about his recovery. My friends and colleagues frequently acknowledged my progress. What they recognize is that I define my impairment as something I live with rather than something that defines my sense of self. For them, my resumption of roles I previously played allows them to separate my condition from the legitimacy of my current role play. I audition to play various roles as normalized, and for the most part, they honor my claim. Not infrequently, they forget the limitations my impairment imposes.

AGING OUT? Given my age, it is easy for strangers to perceive my stigma as more a matter of age, a tribal stigma, than as an abomination of the body. Many of my

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friends and some family members assumed I would retire rather than return to work. Like others my age, I was approaching retirement. Would not this be a convenient time to retire and enjoy ‘‘the time I had left’’? If I asked why I should retire, the person would not respond with what they were thinking, which was that I was too debilitated to return to work. Especially at my age, why bother? I frequently announced to those who suggested I retire, that returning to work was an integral part of my rehabilitation plan. Were people thinking that my newly acquired impairment simply hastened the aging process by a few years? Total strangers have approached me to ask about my need for a wheelchair. They are more likely to ask if I had a stroke rather than if I had been in an accident. There are times when I cannot easily discern if the somatic symptoms I am experiencing are the result of my age and general state of health or are the result of my disability. At this juncture, I cannot parse out which aspects of my spoiled identity may by attributable to my disability and which to my age.

CONCLUSION Understanding the process of resocialization and adjustments of self after acquiring a physical impairment as an older adult is taking on new importance as the ‘‘baby boomer’’ generation reaches the status of senior citizens. Previously, much of the literature on disability and identity focused on those who acquire impairment early in life, frequently before adult status. I have asserted that socialization to the new circumstances of permanent disability and any shifts in social identity are played out in a highly interactive, intricate, and nuanced environment within the context of the impaired person’s social network. The permanently impaired person gets cues, ‘‘is fed lines,’’ and prompted to play the role in a manner negotiated with an audience who are more like producers, directors, and writers at an audition. Goffman’s pioneering work on spoiled identity portrays the process as mechanistically inevitable. Others have sought to understand the management of spoiled identity as more complex, but seeing the situated self as inevitably spoiled even before the management process itself is initiated. I argue that impairment does not ipso facto produce a spoiled identity for the physically impaired or his/her audience. One actively ‘‘auditions’’ for the part of one who has acquired a disability; one seeks to construct a virtual identity as a competent role performer. Many writers view the impaired

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person’s construction of self as ‘‘fixed or stable,’’ including those in the Disability Studies movement (Watson, 2002, p. 513). Identity politics aside, permanently impaired persons do not necessarily or inevitably identify themselves as disabled persons, certainly not in all encounters with normals. Michael Oliver (1996) offers three elements by which disabled people can be identified: the existence of impairment, the experience of externally imposed restrictions, and self-identification as a disabled person. My own current experience calls the last element, self-identification as a disabled person, into question. Additionally, Nick Watson’s recent research on disability and identity with wheelchairdependent adult males and females further supports this view. Watson concludes (2002, p. 524), The analysis presented suggestions that having an impairment becomes part of the everyday experience; it is normal for them to have an impairment. Having impairment is, for them, a fact of life. It is ontologically unimportant. It has become part of their being, their ontological existence, and their identities are self-constructed in such a way as to negate impairment as an identifier.

A significant part of reconstructing self-identity rested on my understanding of what I had endured and what my future prospects held. In fact, during this posthospital period, I found myself having a reaction similar to posttraumatic stress disorder as I came to realize the enormous struggle to survive I had undergone. My ability to construct my story unfolded slowly over many months, which in turn attenuated the process of reformulating the self. Reformulating the self is an ongoing process contextualized and informed by interaction with those I encounter in everyday life. How I come to define the extent to which my identity is spoiled and the way I audition for a virtual social identity as a competent actor is contingent upon the narrative account I offer, the physical environment and what equipment it necessitates, and finally the nature of my social environment.

ACKNOWLEDGMENTS This chapter was originally prepared for the annual meeting of the Society for the Study of Symbolic Interaction, August 14, 2009. The author wishes to thank his departmental colleagues at Rowan University, Mark Hutter, and James Abbott, for their comments and encouragement on an earlier version of this chapter.

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REFERENCES Barnartt, S. (2007). Disability as a fluid state. Paper presented at the Eastern Sociological Society, Philadelphia, PA. Barnes, C., Mercer, G., & Shakespeare, T. (1999). Exploring disability. Cambridge, UK: Polity Press. Cahill, S., & Eggleston, R. (1994). Managing emotions in public: The case of wheelchair users. Social Psychology Quarterly, 57(4), 300–312. Cahill, S., & Eggleston, R. (1995). Reconsidering the stigma of physical disability: Wheelchair use and public kindness. Sociological Quarterly, 36(4), 681–698. Davis, F. (1961). Deviance disavowal: The management of strained interaction by the visibly handicapped. Social Problems, 9(Fall), 9121–9132. Gill, C. (2001). Divided understandings: The social experience of disability. In: G. Albrecht, K. Seelman & M. Bury (Eds), Handbook of Disability Studies. Thousand Oaks, CA: Sage. Goffman, E. (1961). The presentation of self in everyday life. New York: Doubleday. Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. Englewood Cliffs, NJ: Prentice-Hall. Grealy, L. (1994). Autobiography of a face. New York: Houghton Mifflin. Hebl, M., Tickle, J., & Heatherton, T. (2000). Awkward moments in interaction between nonstigmatized and stigmatized individuals. In: T. Heatherton, R. Kleck, M. Hebl & J. Hull (Eds), The social psychology of stigma. New York: The Guilford Press. Higgins, P. (1980). Outsiders in a hearing world. London, UK: Sage. Kemp, B., & Mosqueda, L. (2004). Aging with a disability. Baltimore, MD: Johns Hopkins University Press. Levitin, T. (1975). Deviants as active participants in the labeling process: The visibly handicapped. Social Problems, 22(April), 548–557. Linton, S. (2006). My body politic. Ann Arbor, MI: University of Michigan Press. Mairs, N. (1996). Living waist-high in the world. Boston, MA: Beacon Press. Oliver, M. (1996). Understanding disability. New York: Palgrave Press. Pfuhl, E., & Henry, S. (1993). The deviance process. New York: Aldine De Gruyter. Priestley, M. (2003). Disability: A life course approach. London, UK: Polity Press. Schneider, J., & Conrad, P. (1983). Having epilepsy. Philadelphia, PA: Temple University Press. Thomas, C. (2007). Sociologies of disability and illness. New York: Palgrave Macmillan. Thomas, E. (1966). Problems of disability from the perspective of role theory. Journal of Health and Human Behavior, 7(Spring), 2–14. Watson, N. (2002). Well, I know this is going to sound strange to you, but I don’t see myself as a disabled person: Identity and disability. Disability and Society, 17(2), 5098–5527. Wee, J., & Paterson, M. (2009). Exploring how factors impact the activities and participation with disability: Constructing a model through grounded theory. The Qualitative Report, 14(1), 165–200. Zola, K. (1982). Missing pieces: A chronicle of living with a disability. Philadelphia, PA: Temple University Press.

PART II AT THE MACRO LEVEL

AT THE INTERSTICES OF CLASSIFICATION: NOTES ON THE CATEGORY OF DISABILITY IN SUB-SAHARAN AFRICA Patrick J. Devlieger Anything that separates and negates those with a chronic condition will ultimately invalidate not only them but everyone else. (Zola, 1982, p. 238, italics added)

When I started my first African fieldwork right out of college, now more than 25 years ago, little did I realize how different the outlook on the world could be? My wife and I had talked to the volunteer organization and to orthopedic specialists about the purpose of our work and we had left with a pretty good idea of what we were to undertake. In short, my wife was going to be the physical therapist of a new center, in which young children with physical disabilities (mostly from polio) would receive medical rehabilitation. I was to be a researcher whose findings were to assist the medical doctors and the volunteer organization in their work. We were briefed extensively, I received sufficient advice from my anthropology mentors, and we seemed to have a pretty good idea of the entire undertaking. We boarded planes, said goodbye to everyone, and landed on the other side where we were warmly welcomed and introduced into a new world. Our first introduction was the missionary world where we learned that medical rehabilitation was to be seen in the larger picture of evangelization. Disability as a Fluid State Research in Social Science and Disability, Volume 5, 69–101 Copyright r 2010 by Emerald Group Publishing Limited All rights of reproduction in any form reserved ISSN: 1479-3547/doi:10.1108/S1479-3547(2010)0000005006

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The picture of a worldview in which disability was to be seen in the context of rehabilitative medicine and Christian values was not foreign to us although we had never been very conscious about any part of it until we saw the stark contrast of an alternative conception. If we had chosen so, we could have functioned for the next two years within this worldview of disability without ever looking further. It would have certainly been more comfortable and it would perhaps not have haunted me many years down the road, while learning more about culture, and later becoming a partner in the evolving field of disability studies. But as an anthropologist, my job was at least to try to understand how disability could be understood from the other end. It is at that point that the secure ground of western constructions of disability started to shift. Not only were the medical and the Christian perspectives not the most obvious way of looking among a host of other components of the construction, such as a belief in the technical reparation of the body to achieve functional and social goals, but also the very cultural foundation of disability as a concept and category began to shift. How could it be that in the Songye1 language we started to learn as dutiful professional and researcher, the concept of ‘‘disability’’ (or handicap or an equivalent) that takes various impairments together in one convenient concept did not exist? Eventually, beyond ethnocentric thought, I realized that the incompatibility has less to do with the history of conceptual development in African societies. More relevant are the ways the category of disability developed in the West – the historically evolved mindset or discourse that signifies a culture’s constructed boundaries between what it defines as its able-bodied and disabled members. The question in the fieldwork context thus became most challenging: how is disability constructed in a society that does not culturally recognize a category of disability? In the absence of such a category, how do people culturally think of people with physical impairments? Zola’s comment connects the act of separation to its negative consequences, both at the personal and social levels. The act of separation and its social enactment become known in ‘‘disability’’ as a concept that belongs to a Westerns cosmology and as one that provides a reflection on itself. The universal existence of ‘‘different bodies’’ challenges to examine cultural ramifications, even in the absence of the linguistic category of ‘‘disability,’’ which provides an easier entry into the historical construction of a culturally institutionalized separation. In other words, even without ‘‘disability,’’ ‘‘different bodies’’ could not have escaped the cultures in which they are situated. Methodologically, from the position of a Western person looking into another culture, the absence of the cultural and historical baggage that the

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category of disability imposes may prove to be a scholarly blessing (although the realization during fieldwork was not comforting) for examining ‘‘different bodies’’ in the context of cosmologies or classification systems and their impact on society. In an anthropology of disability, these two problems, ‘‘the understanding of culturally recognized bodily differences in the context of a cosmology’’ and ‘‘the reflection of such an understanding on self, and society’’ seem to be central. The purpose of this chapter is twofold. First, I examine the category of disability in cross-cultural perspective as a contribution to the current discussion in disability studies. Thomson (1997) has argued that the category of disability can be understood vis-a`-vis other dominant categories in American culture, such as race and gender, which are better recognized pillars of mainstream American cosmology. Recognizing that disability is becoming a unified category in the United States, I also became aware of its historical and cultural positioning and of its inappropriate use in other cultural contexts. To remind the reader of this uneasiness, I will be using terms such as ‘‘bodily difference’’ in order to bring the phenomenon of disability down to its biological and perceptual basis. I believe that provides a sufficient basis for the question that leads this chapter, namely ‘‘How are bodily different people classified in African cosmologies?’’ The second purpose of this chapter is of a theoretical nature and at the heart of disability studies as an interdisciplinary field of inquiry. In such a venture, it is important that relevant theories that have sprouted in disciplines be applied to and tested by the ideas and practices governing bodily difference in their social and cultural contexts. Such communication should be beneficial to the development of disability studies as a discipline, the further theoretical development of disciplinary theory, and the development of an interest in disability within the disciplines, such as anthropology. Theoretical approaches I will consider are grounded in cognitive, symbolic, and structural anthropology. This rapprochement between anthropology and disability studies is meant to expand the current horizon of both, by bringing disability as a topic of interest to anthropological theory and by bringing theoretical anthropology more firmly into disability studies, to the benefit of both. Theoretical grounding serves the second purpose of this chapter – to explore and address the cultural variation of classification in a culture other than our own. This brings Irving Zola’s comment to a higher level of abstraction by asking how cultures separate individuals with impairments, both conceptually and practically. As an anthropologist who has spent the greater part of my professional life in a culture other than my own, addressing various aspects of disability,

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I reclaim anthropology as an important avenue for cross-cultural work. I am also challenging anthropology to open up to the topic of disability as one that is an inherent part of the human condition (Murphy, 1987; Scheer & Groce, 1988). Excellent work by American anthropologists on disability is nevertheless significantly limited in two ways: almost all have conducted their fieldwork in their own culture and almost all are working outside of departments of anthropology. I am asking us to open up the recognition of anthropological work in cultures other than one’s own through financial and academic awards and to open up the doors for interdisciplinary work. An in-depth discussion of the cognitive or structural processes of classification of disability in African cultures is beyond the scope of this chapter. Scholars in cognitive anthropology and scholars of Africa may not find an exhaustive discussion in their fields. This chapter is more of a conversation between these fields, as is typical of interdisciplinary work. In the process, I believe something is to be gained. The topic of disability may illuminate some aspects of classificatory work that may stimulate cognitive anthropologists to pursue further work. For example, if the work of cognitive anthropologists is to document the processes by which humans bring order in their universe, bodily impairment constitutes a phenomenon that runs across more readily recognized linguistic categories. More importantly, disability is often recognized as a disorder that upsets and challenges already constituted cultural order. Furthermore, in ethnographies of African cultures, conception and practices of disability have, at their best, been dealt with in a sketchy manner, almost in passing. A systematic history of the ideas and practices of disability in African cultures has yet to be developed. In expanding that which has been dealt with in a sketchy way, I provide the onset of such work. I also challenge anthropologists whose interests are in disability to take up work in cultures other than their own and to use disability studies to create the scholarly space for such work to be done. In this chapter, culture is essentially a public code, which, after Max Weber and Clifford Geertz, is defined as ‘‘the webs of significance man [sic] has spun for himself’’ (Geertz, 1973, p. 5). Basic cultural categories provide order through the ‘‘standardized values of a community and mediate the experience of individuals’’ (Douglas, 1966, p. 39). Classifications are the formalized, abstracted sediments that scientists can provide to their audiences to make the webs of culture intelligible. Disability in this chapter is defined along the lines of its fundamentally ambiguous character, i.e., it is capable of multiple interpretations, and as anomaly in a cultural system, as an element that does not fit a given set of series. In this definition, both

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the reality of the experience of disability and its social construction, resulting from the interaction with a culture, is safeguarded. My bias in this definition and in this chapter is that I do not seek how disability as ambiguous and anomalous results in interpretations and actions of avoidance and exclusion, themes that have dominated social science research interests, but rather I seek how disability can function as a comment on culture and more importantly as a creative force. I am applying here Mary Douglas’ reasoning that the way cultures create order has implied restriction. The disorder of disability challenges the restriction of earlier patterns – its potential for patterning goes beyond existing patterns. As a creative force, disability-as-ambiguity is in the nature of other ‘‘ambiguous symbols [that] can be used to enrich meaning or to call attention to other levels of existence’’ (Douglas, 1966, p. 40). This is a different direction than one taken by Robert Murphy (1987), who interpreted the ambiguous character of his own disability and of others as ‘‘liminal,’’ that is ‘‘on the threshold,’’ implying a situation of permanent social suspension. The classical works of Durkheim and Mauss (1963), Le´vi-Strauss (1963), and Douglas (1966), social scientists who have not written on disability, is most insightful. Durkheim and Mauss (1963) place the causal origin of classifications in society, a position they eventually fail to establish. Le´vi-Strauss (1963) identifies the structural character of social phenomena as ultimately the result of opposing categories, the direct result of the working of the mind. Using disability as my starting point, I will argue that disability challenges the basic classifications on which cultures rest, namely those oppositions of culture versus nature and of man versus animal. Mary Douglas’ (1966) contribution is in the development of elaborate systems of classifications that distinguish the clean and the unclean, and in the role of the anomalous, both dangerous and polluting, but also challenging the existing system of classification. I add both a passive and an active factor to those classifications: passive in the sense that we inherit and more importantly live them, and need them, as without them, the world is not intelligible; active in the sense that they are constructed, that is, they are subject to change. The active dimension will be explicated in the historical development of categorization; the passive and active in the linguistic classifications of Swahili. In addition, I maintain some of the vocabulary in which classifications are embedded by referring to entire systems of classification and cosmologies that define bodily difference among the Songye of Zaire, where I conducted my first fieldwork, and in the symbolism of the snake child among the Beng of Coˆte d’Ivoire, relying on the work of Alma Gottlieb and Philip Graham (1994).

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THE CATEGORY OF DISABILITY People in all cultures of the world classify other people most readily in easily identifiable categories. Examples of such categories are race, gender, economic, and physical difference. These categories make the world intelligible because they assign roles and functions attached to the individuals that fill the category. Racial, gender, and other categories that reflect difference may change over time as to the meaning and assigned roles and functions, but the very fact of them being a criterion for classification remains rather unchallenged. Yet the very fact of classification may question whether individuals with disabilities belong to the most essential of all categories, the human category. With classification, a statement of exclusion or inclusion in the human category is imminent. Classification of individuals in categories reminds us of the very idea that culture as a whole is a human product, and of the impact that culture has on the experience of individuals with certain characteristics. Through criteria of classification, culture organizes how disability may be thought of and how it may be experienced. By studying examples from cultures other than our own, we may become aware of the conceptual variation in disability. Applying a methodology to study variation in the conceptualization of disability may become the basis of deconstruction and reconstruction of disability. Such an effort may be the basis of an anthropology of disability and contribute to the emerging interdisciplinary field of disability studies. Many Indo-European languages have developed a term that unites people who experience vastly different impairments and disabling conditions. The term ‘‘disability’’ is preferred in many English-using societies as a result of linguistic and discursive shifts. In the United States, this term is now superseding the older term ‘‘handicap,’’ which is still currently in use in other countries. Thus, the term ‘‘disability’’ is culturally and historically specific and needs to be related to specific cultural conditions. In most African languages, there is no direct translation possible of the term disability ‘‘for the simple reason that ‘disability’ as a recognized category does not exist’’ (Reynolds Whyte, & Ingstad, 1995, p. 7). Translation is possible only to specific terms that mean specific disabilities, such as blindness, deafness, lameness, etc. In more recent developments, the African term that is used for ‘‘crippled’’ becomes a term that becomes close in meaning to the English term ‘‘disability.’’ Disability is a human constant (Scheer & Groce, 1988). Human cultures have addressed sensory, mental, and physical impairment in various ways,

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involving unique patterns of thought that assigned meanings of social exclusion as well as inclusion. Perhaps, the most radical form of social exclusion is the practice of infanticide. Among the Songye of Zaire, a deformed child can be ‘‘returned’’ to God by throwing it into a river or burying it in an anthill. This practice emphasizes a relationship between God and people. The expectation is that healthy, whole children are sent by God. The birth of a deformed child can be a sign of a wronged relationship with God, and the return of such a child to God can be interpreted as an unfulfilled expectation. The return is ritualized by speaking out the right words to God, by appeasing the spirit of the child, e.g., through the sacrifice of a white chicken, signifying purity, and binding it around the neck or foot of the child, and by depositing the child in the right place, such as a river or anthill. A river provides immediate access to the supernatural world; the earth of an anthill is not used for agriculture and thus prevents the unacceptable pollution of agricultural land. Radically opposed to such socially regulated practices of exclusion, human cultures have also integrated human impairment. For example, Groce (1985) reports of the practices on the island of Martha’s Vineyard, where both able-bodied and deaf individuals adapted to the wide incidence of hereditary deafness by learning to speak sign language. These examples emphasize inclusion or exclusion of persons with bodily differences, yet the experience of such persons in many cultures are comprised of a mix of both inclusion and rejection, hence its impact on the development of an identity that reflects this ambiguity (Gill, 1997, personal communication). In confronting disability as ambiguous and anomalous, it is good to know that, when something is firmly classed as ambiguous and anomalous, the boundaries in which it is situated and the outline of the set in which it is not a member are clarified. Douglas’ (1966) use of Sartre’s thoughts on stickiness may serve as an illustration. The child that plunges its hands into a jar of honey is instantly involved in an attack on the boundaries between its body and honey. In the contact with a liquid or a solid, the experience gives a different impression: the body remains a solid. But in touching stickiness, there is a risk of diluting oneself into viscosity. Stickiness is a trap: it clings. The boundaries become permeable. The viscous is a halfway and an anomaly in a clear set that includes the solid and the liquid. In very similar ways, disability as ambiguous and anomalous clarifies the boundaries and classifications in which it is situated, the way it is lived and conceptualized, as always telling of society.

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RECENT HISTORICAL DIMENSIONS THAT DEFINE DISABILITY-AS-CATEGORY IN SUB-SAHARAN AFRICA ‘‘Disability’’ as a unified category of discourse that includes individuals with a variety of different impairments, resulting from a historically, mutually constitutive relationship between a society and its impaired members, is a relatively recent phenomenon in most African societies. While African cultures have developed criteria, practices and rituals that identify and regulate the extraordinary body, a comprehensive notion related to impairment has been mostly foreign and only recently been introduced through international collaboration, development, and research projects. With the development of colonial administration and missionary work, medical syndromes and particular disabilities, such as blindness and deafness and physical disabilities related to polio, came to be defined; services, largely limited to hospitals, ensued. In the development of social welfare under colonial rule, disability as a generic category became defined for the first time, but only for whites. An exception is the development of the idea of self-help for Africans that generated the basis of what became a widespread network of services in Zimbabwe, under the initiative of Jairos Jiri (Devlieger, 1995; Farquhar, 1987; Iliffe, 1987). The real development of the category of disability is more of a postcolonial development that emerged as the responsibility of new African governments in the postcolonial international predicament. I will first develop this postcolonial predicament and then return to colonial distinctions that forced a new understanding of impairment and precolonial culture related that has changed and continued to inform the cultural construction of disability. On the verge of independence, mostly in the 1960s, African countries inherited an infrastructure that ranged widely, depending on the number of years and the colonizer. In countries with poor infrastructures, new African governments were little compelled to make a priority of service or policy related to its disabled members. Where disability had become part of a social-welfare administration during the colonial period, such policies were largely maintained but generally not expanded. In Zimbabwe, which won independence after a protracted civil war, the new government assumed responsibility for its veterans by developing vocational rehabilitation services. Within the ministries of education, educational services for students with disabilities developed only slowly, again the result of the collaboration and assistance of foreign donors. Special education remained

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a marginal priority as formal national education systems took first priority (Ross, 1988). However, in many African ministries of education, structural provisions were made for special education by the 1980s. Also, within the ministries of health and social welfare, disability became increasingly important as a result of international involvement. International involvement in African countries during the postcolonial era in the area of disability has largely come under three forms: (1) nongovernmental foreign organizations providing aid to churches and private organizations in the receiver country, (2) bilateral aid, i.e., between a donor and a receiver government, and in the form of (3) multilateral cooperation, i.e., funding from various donor countries through the United Nations system. An overview of the amount of collaboration in the field of disability is beyond the scope of this chapter. However, new frameworks resulted from this collaboration. The prototypical frame of reference of nongovernmental collaboration is the ‘‘center,’’ usually a facility where medical, educational, or vocational services are provided by missionaries, foreign volunteers, and local staff. The concept of volunteer-doctors who provide time-limited assistance, e.g., in the form of surgical operation, to such a center clearly indicated the shift of international relations from the colonial period. While I recognize that the colonial and postcolonial experiences related to disability in Africa have greatly influenced the introduction of a unified category of disability, it is beyond the scope of this chapter to fully document this development. As an important task of the cultural history of disability, it needs to be referred to future work. Instead, I wish to probe deeper into the cosmological patterns and forces that define disability in terms of the culturally constructed worlds in which people think and act. Local African concepts of disability reflect the boundaries of a worldview that includes ideas of life and death, this world and the supernatural, social relations, causal attributions, and a categorization of the extraordinary body. These concepts are captured in language, at various levels such as terminology, grammatical structures that distinguish difference, proverbial language, and folktales. Last, the modes of production and reproduction are an integral part of an understanding of disability in the African context. Production modes of agricultural and pastoral peoples inform the (in)tolerance toward the ambiguous and anomalous, and instruct how gender differences and disability intersect. All this is part of an elaborate program of study in disability and culture of which I will point out only starting points.

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A THEORETICAL FRAMEWORK FOR STUDYING DISABILITY CLASSIFICATION The historical overview of the disability category in Africa that illustrates the political-cultural changes over time can now be complemented by a theoretical model of classification that may illustrate the processes of cultural perception, conceptualization, and symbolization. In Fig. 1, I present a model for the understanding of disability classification. It is an adaptation of a model of human perception, conception, and symbolization processes, developed by Ohnuki-Tierney (1981). The model in Fig. 1 is a processual model that is applicable to different cultures. It includes cognitive and symbolic transformations that may explain how ‘‘the webs of significance’’ define disability in a particular culture. As a processual model, it provides little explanation of the content that defines disability in a culture. For reasons of cultural distance, I will illustrate the process with contents of disability classification in American mainstream culture and then follow up with illustrations from African cultures.

F

A

Person with a disability

Icon

Cognition

E Interstitial category

D

C

Practice in time and space

Cultural classificatory system

B Label of difference Bodily Experience

Symbolic classification

Fig. 1.

Theoretical Model.

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Phase A–B: Sensing a Difference This phase is one of initial perception and identification of a phenomenon in the external world, through a sense image, which includes both a cognitive label and a bodily notification. The codes of identification in American culture of a disability could be ranging from one in which the experiential, sensorial, or even visceral to one in which the professional scientific (medical, psychological, educational, or any combination) dominates. The construction of this sense image would be both dependent on the particularity of the presented difference, for example in the ways a person may look, sound, or communicate. The image of disability may be hidden from the senses of others in ordinary communication but known to the person with a bodily difference, which leaves it largely to the person to extend the disability to the social realm. The most commonly culturally recognized identification of disability in American culture is the professional scientific, through examination and measurement in a recognized disability. In American culture, the domination of the medical profession in identifying and recognizing a disability has been emphasized (Albrecht, 1992). As Ohnuki-Tierney (1981, p. 457) points out, ‘‘it is in the naming process that culture plays its role by providing meaning.’’ For disability, the naming of it provides the individual with a disability with the beginning of a socialization process that will shape the bodily experience of difference. Disability scholars such as Robert Murphy (1987) have pointed out how the labeling process is socialized in the cultural context of hospitals and his working environment. Murphy tells us how, in the context of hospitals, he is deprived of his status symbols as a university professor that enable the development of equal relationships with other patients and how in many other context he becomes invisible or becomes of a diminished stature.

Phase B–C: Cultural Classification In this phase of cultural classification, the disabled person becomes further identified in relation to other persons in the classification system in a culture. Ultimately, the values and codes of a culture become in clear perspective by what the disability contravenes. This leads Murphy to state that ‘‘the disabled, individually and as a group, contravene all the values of youth, virility, activity and physical beauty that Americans cherish, however little most individuals may embody them’’ (1987, p. 100). For John Hockenberry (1995), it means that disabled individuals are discriminated against in issues

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of employment and housing, against the pledge of legislation under the Americans with Disabilities Act. For Marilyn Philips (1990), it meant the metaphorization of disabled people as ‘‘damaged goods’’ in the context of a capitalist economy. Ultimately, in this phase the question arises to what extent people with bodily differences in a cultural framework are allowed, by contrast, their full humanity, or classified as ‘‘other,’’ that is outside of the human realm or as more or less human. In this phase, it is useful to look at ideologies of life, e.g., the Nazi phrase ‘‘life unworthy of life’’ that allowed the extermination of disabled individuals during the Holocaust, at infanticide and milder forms of eugenics, such as sterilization, but also very practically and literally at the life space allowed to disabled persons in a cultural context. ‘‘Handicapped parking’’ is no simple matter in American culture.

Phase C–D: Negative Self-Definition Disability can at certain points in time become the object of identification for individuals in a society and a source for particular local practices. The imagery of disability has been used in American society to exercise charity, diminishing disabled persons to objects of pity, and simultaneously uplifting oneself. The effects of the giver and the receiver have consequences of moral and status identification. Thomson (1997) has pointed out that the sideshows in which deformed and extraordinary bodies were displayed in the beginning of this century were a source of identification for lower class and recent immigrant groups for who they are not. Such negative self-definition reinforces already established practices. In recent developments in American culture, disability becomes a category of minority that is juxtaposed to race and gender, and hence the intersections give way to particular behaviors. For example, while marriage between people from different racial backgrounds may be questioned, these questions may be modified when one of the partners is disabled.

Phase D–E: Producing an Interstitial Category This phase is the centerpiece of a process of cognition and symbolization regarding disability. Local practices relate to a societal impetus. While societies have differed in defining disability, both cross-culturally and historically, there is a universal cultural constant in conceptually situating

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members with impairments in interstitial categories, both in language, lifetime and in communal space. This explains why some bodily differences are at the core of a cultural conception of disability. For example, in the United States, it may be argued that a bodily difference that does not impede on employment or family life may hardly remain to be considered a disability, while the experiential reality of disability may remain. On the other hand, bodily differences that impede the reproductive capacity may qualify much more strongly as disabling in many African cultures. The interstitial nature of disability is reached when the process is more consistently defined at the level of a society, in the form of a disability figure. It is here that both the danger of the difference but also its potential for critique and change of a society can be reached. Such a figure consistently inquires the existing order and it also presents deviations and alternatives. In contemporary American society, such process is typically produced through legal action and major federal legislation. The Americans with Disabilities Act of 1990 has been such a transformational process, the result of which is a new understanding of disability. In the case of the ADA, the social processes of discrimination defined disability. An example of a historical disability figure is that of the dwarf in Spanish courts, as depicted by Velasquez. Both examples show how such a figure has the potential to inquire the existing order. In the context of a prevailing disability figure, the person with a disability becomes positioned to develop particular knowledge and power.

Phase E–F: Iconization While the processes B through E are limited to cognition and symbolic classification, in the latest phase, disability becomes an icon, which is a part of the external world of images that starts to inform subsequent cognition, and the initial stages of perception, conception, and symbolic processes. The icon of the wheelchair is one that is most visible in American culture, regulating access to buildings and the use of parking spaces. But other images, in advertisements and in the media, should be accounted for in this phase. For example, the production of messages at entrances of stores, of images in advertisements, and in modifications of access to buildings reflect how companies visualize and choose to implement a new understanding of disability that results from the passing of the Americans with Disabilities Act. In what follows, I will describe aspects of this model of classification applied to African cultures. Out of necessity, I will need to be sketchy and

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incomplete, inviting others to take up the challenge. While I am providing examples that will illustrate different stages of processing, I maintain my main theoretical argument, namely that in the culmination of cognitive and symbolic processes, disability as an interstitial category is developed. An interstitial category brings out the central characteristics of ambiguity, in that it situates itself between recognized cultural categories from which it proceeds to become dangerous, polluting, and challenging of the classification system.

THE CATEGORY OF DISABILITY IN AFRICAN CULTURES In beginning to document the category of disability in African culture, I will concentrate on the phases of cultural classification (B–C). First, I explicate the cognitive classification of disabled persons in Swahili, using the linguistic analysis of noun classification (Contini-Morava, 1997). I complement this with explicating the processes of negative self-definition (C–D) with the symbolic classification of bodily difference among the Songye of Zaire, and an explication of processes in phases in the nature of classificatory boundaries among the Beng of Coˆte d’Ivoire, by using their determination of ‘‘snake child’’ for a child who would be labeled mildly mentally retarded in a Western classification. Anthropologists have begun to examine the classification of disability in African societies. A number of insights are developing from this work. First, all African languages have terminologies that are specific for the disabling conditions of the individual (Talle, 1995). Second, a more unified category is usually derived from the term used for physical disability, but the use of such a category may be limited (Helander, 1995). Third, the criteria by which a difference is culturally significant is relative and dependant on core values. For example, sterility may be considered a disabling condition for women in many sub-Saharan African cultures, and the meaning may be differently constructed for men. Fourth, concepts of disability as classifications are couched in cosmologies that address what is culturally understood as extraordinary. Extraordinary status may be positive, negative, or ambiguous. Among the Songye, children with disabilities (lit. faulty children, baana ba bilema) are attributed an ambiguous status, neither expressly positive nor negative (Devlieger, 1995). Fifth, references to knowledge of the animal world are often used to speak of disabling

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conditions. For example, Talle writes that olmaima (crippled) is the term that is used to translate the English word disability. It means ‘‘a big, brown lizard that has short legs and sways from one side to the other while walking; that is, it walks awkwardly, slowly, and with difficulty’’ (Talle, 1995, p. 59).

Local Concepts of Disability and the Human Category: African Interpretations Our knowledge of local concepts of impairment on the African continent is very limited and close to nonexistent. Despite the fact that indigenous discourses of disability have been available for examination, they have largely remained unexplored. The reason for this dearth of knowledge lies partly in the recent history of the African continent, the limited range of interests of scholars of Africa, and the limited range of interests of disability scholars. However, new development in the study of disability that includes the study of disability as cultural category may reverse the trend. Colonial discourses, i.e., discourses by colonial powers prior to independence of sub-Saharan African nations, excluded African persons with disabilities. Priorities were geared toward development of basic education and medical service systems. If services were developed, such as sheltered workshops in colonial Southern Rhodesia (now Zimbabwe), they served white and excluded black persons. However, an exception may also be found in Southern Rhodesia where the notion of self-help for African persons within the colonial context benefited the development of early vocational services by a great African philanthropist, Jairos Jiri (Devlieger, 1995). Increased medical developments in postcolonial Africa eventually led to the development of rehabilitation centers, many of them exclusively for persons with physical disabilities resulting from preventable transmittable diseases such as polio and in a few cases, e.g., in Kenya, to boarding schools, to serve educational needs. Within the colonial context of government and economic development, disability was mostly a nonissue that deserved little attention, let alone examination of local concepts. Scholars of Africa, such as historians and anthropologists, have equally devoted little attention to disability. African history has devoted little attention to the historical developments in conception and services. As a beginning discipline, historians concentrated on global and political developments. Only recently have historians of Africa started to devote attention to related topics to disability, such as the history of the poor

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(e.g., Iliffe, 1987). Early ethnographic work from the 17th to the early 20th century of travelers and missionaries devoted to the description of entire cultures to which the topic of disability was mostly lost or received very scant attention. In later work of professional anthropologists and with the advent of specialized arenas of research, such as medical anthropology, the topic of disability was once again lost to a description of medical syndromes and systems. Only as recently at the early 1980s have anthropologists started to devote attention to disability, partly a result of international attention (Ingstad & Reynolds Whyte, 1995). Last, disability scholars and practitioners themselves have devoted little attention to local concepts of disability in Africa. The reason can perhaps be sought in a combination of limited international focus on disability, assumed superiority of Western models and practices of disability, and limited resources and methods for exploring local concepts. The emergence of disability studies as an interdisciplinary field of study has evolved from a civil rights movement and has subsequently focused on the experience of disability and its constituent discourses. Local concepts of disability have, however, become part of a research agenda (Holzer, Vreede, & Weigt, 1999). To contribute to this development, I wish to develop a number of African disability concepts.

LINGUISTIC CLASSIFICATION AND THE CATEGORY OF DISABILITY: SWAHILI AS EXAMPLE Exploring terminology related to physical disability is a way of beginning to see how cultures define and classify disability as part of cultural classification (see phase B–C). In the West, an exploration of terms such as ‘‘handicap’’ or ‘‘disability’’ is very instructive because it can show how the phenomenon of physical difference is attacked at different times (Stiker, 1992; Devlieger, 2003). The record of terminology that has the greatest timedepth is that of proto-Bantu. Through the comparison of terms in current Bantu languages and a statistical analysis of occurrence and variations of form, determinations of time-depth and geographical development of terminology in the African continent can be made (Devlieger, 1998). Language and the Development of the Category of Disability The category of disability as one that unifies a great diversity of people with various sorts of impairments under one single noun is a unique fact of

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Western countries. The ability to translate this category in African languages is problematic because the cultural processes that under the conceptualization of impairment are vastly different. Examination into African languages may clarify how disability can be very differently conceptualized in other languages. Such examination is important for two reasons. First, it underlines how language specific the understanding of disability is2 and it reminds us of the unique construction of disability in one’s own language and culture. Consequently, it illustrates how language instructs thought, as argued in the Sapir-Whorf hypothesis. Second, the differences between categorizations in different languages are a first step in understanding the challenges of cross-cultural work. A naive assumption that the term ‘‘disability’’ can be easily translated holds the dangers of any other form of ethnocentric thought. Through linguistic analysis, one can make the cross-cultural journey from one culture specific notion, such as disability, to culturally specific notions in other languages. Such an exercise may limit future projections of disability as culturally constituted notions into other cultures. As an example, an examination of conceptual classification in Swahili is instructive. In deriving an understanding of disability from the system of nominal classification, I rely on the recent work of linguists on noun classification in Bantu languages, such as Swahili (Contini-Morava, 1997), Setswana (Selvik, 1996), and Chibemba (Spitulnik, 1987). Interesting in this work is the application of a cognitive-semantic approach that expands traditional notions of semantic coherence. Influenced by work on cognitive grammar, linguists have started to expand membership in a given linguistic category to be based on multiple categories – e.g., family resemblances, metaphor, and metonymy – and recognize that linguistic categories may exhibit an internal structure in which some members of the category are more central, or prototypical, and others are more peripheral (Contini-Morava, 1997). These developments in linguistics are helpful for an understanding of how people with various impairments may be conceptualized in Bantu languages. In what follows, I am expanding and applying the work of Contini-Morava to an understanding of ‘‘disability as Western category’’ to its equivalents in Swahili. Swahili has a typical Bantu noun system, which means that all nouns are divided into a small set of classes. Each class in Swahili involves reference both to the prefix on the noun and to a pattern of grammatical agreement. Table 1 is a list of Swahili nouns that includes the terms for people with various impairments and the corresponding noun class. It appears that people with impairments are not classified in a single class but in three

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Table 1. Noun mkoma mkongwe mng’ariza mpindani mtwa mwele punguani zeruzeru bubu buge kifefe kigego kiguu kigundu kijimo kijitu kijongo kikaramba kikongwe kigongo kipofu kiziwi kimba

Swahili Noun Classification for Persons with Bodily Differences. Gloss

Class

leper old person one with glowing, glaring eyes (suspect sorcerer) one bent or crooked by disease dwarf, pygmy sick person, cripple mentally deficient person, idiot; half-breed an albino (assoc. with evil spirits or taboo) dumb person person with missing finger or toe a weak, useless person child with upper teeth grown first crippled, lame person, one unable to walk someone whose buttocks stick out more than usual a dwarf a little man, manikin hump-backed person an old person (scornful expression) person bent and bowed with age a hunchback a blind person deaf person; dried up coconut dead body, corpse

1 1 1 1 1 1 5 5 5 5 7 7 7 7 7 7 7 7 7 7 7 7 7

Source: Contini-Morava/Devlieger e-mail communication 09/26/97.

different classes, namely classes 1/2, often called ‘‘human classes,’’ class 5, which provides a semantic network for ‘‘plant offspring,’’ and class 7, for ‘‘utilitarian objects small enough to hold in hand.’’ By examining the semantic and cognitive processes that are involved in each of these classes, we might surmise how individuals with certain bodily differences are culturally perceived by users of Swahili, by virtue of the use of the language. As such, we may underscore the importance of language on attitudes toward persons with disabilities in cultural context. The classification of disabled persons in classes 1/2 (humans) is the most obvious, and will not be further expanded here. It is the particularities of classifying in classes 5 (plant offspring) and 7 (small objects) that attracts most of our attention. The most common classification of people with bodily differences in Swahili would be in class 7 (small objects), which mostly contains names for inanimate objects, things that are small, including parts that can be linked to

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a part-whole relationship. It follows that a person with a disability in this class is someone who is not whole, someone who is lacking something. Fig. 2 shows the cognitive-semantic processes that are involved in class 7 (small objects). Contini-Morava (1997) identifies the prototypical meanings as ‘‘utilitarian’’ and ‘‘small.’’ The meaning of people with physical defect/lack does not seem to derive meaning from ‘‘utilitarian’’ but from a major semantic extension within this class to ‘‘small entities in general,’’ and especially from two subgroups, ‘‘immature beings’’ and ‘‘pieces/parts of things.’’ The first subgroup, immature beings, gives meaning to persons with disabilities as not fully grown, underlying a status of childlike but also of potential of development. The second subgroup perhaps indicates a more central meaning to disability, in that this category includes both reference to size and an implicit comparison between part and whole. The part-whole comparison is carried over into a further extension, to ‘‘shortened things,’’ mostly resulting from the fact that they were used or cut. This identifies the core of meaning to disabled people as not-whole.3 Several scholars have pointed out that a fairly natural extension occurs from ‘‘used object’’ to utilitarian objects small enough to hold in hand small entitities in general

small artifacts

small animals

immature beings

shortened things

pieces/ parts of things

pointed things/ parts

small body parts

Concrete object assoc. with verb (product, implement, etc.)

part of substance ailments associated with body parts

People with physical defect/ lack

similarity/ manner

Fig. 2.

Semantic Network for Class 7 in Swahili.

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‘‘despised object’’ (Contini-Morava, 1997; Denny & Creider, 1976).4 It is obvious that the metaphor of size is strongly at work in this class; disabled people are associated to things that are part of a whole, smaller, and immature. A number of people with particular characteristics would be found in class 5 (plant offspring). Whereas in class 7 (small objects), the metaphor of size is dominant and in class 5 (plant offspring) spatial configuration is a salient characteristic.5 A large number of the terms denoting solid threedimensional objects, protrusions, swellings, and lumpy substances are found here. The most productive semantic category within class 5 (plant offspring) is the category for fruits, both in terms of number of nouns and in terms of semantic extension.6 Fig. 3 shows the semantic network for class 5 (plant offspring). The semantic extensions to lumps/lumpy substances, protrusions, and swellings but also those that extend to three-dimensional containers, large things, and

plant offspring leaves

fruits lumps/ lumpy substances

Curved 3-dimensional objects

curved outlines curved flat objects

protrusions 3-dimensional containers things with broad parts

hollow spaces

swellings

large things

revered/ feared things

Fig. 3.

A Semantic Network for Class 5 in Swahili.

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revered/feared things are of interest for our purpose of understanding the cognitive-semantic processes attached to disabled people in this class. I will only be able to present an interpretation based on ethnographic research in various parts of sub-Saharan Africa and refer to future work for further testing. Disabilities that can be defined in terms of lumps, protrusions, and swellings would cognitively fit in this category and arte associated with increased supernatural power, and with sorcery. For example, among the Songye of Zaire, supernatural protection can be produced by bringing powerful substances together and ritually placing them, e.g., to protect crops from any damages. Because of the connection between substances, containers, and supernatural power, one or the other may be more emphasized. For example, in the case of a person who is albino, the association is more directly with supernatural power rather than with substance or container. In the case of bubu (deaf person), the association is more directly with a container (hollow space in the ear) and perhaps obstruction, caused by sorcery. The semantic-cognitive networks of classes 5 (plant offspring) and 7 (small objects) may have implications for an understanding of the connotations of meaning to persons with disabilities for Swahili users. It also needs mentioning that there are anomalies in the categorization that do not directly fit the cognitive processes. For example, the term kijongo (hunchback) or kigongo (hump-backed person) would prototypically fall in class 5 (plant offspring). However, it is situated in class 7 (small objects). Interpretations that would suggest that this term might have moved from one class to another would need further research. Such a possibility, however, is feasible because the movement of words from one class to another is not exceptional. In addition, there is a recent evidence that advocacy can cause words to be obliterated. For example, in Tanzania, disability activists have protested the term kipofu (blind) as diminutive and derogatory and have proposed its replacement by msiona (plural: wasiona), placing the term in class 1/2, reserved for human beings.

Songye of Zaire: Bad, Ceremonial, and Faulty Children The ability in African societies to sort out extraordinary bodies into a variety of organizing categories with differing conceptual and social consequences can be illustrated for the Songye of Kasayi. These categories show the boundaries of the ambiguity created and the conceptual classifications in Songye cosmology.7

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The practice of differentiation by the Songye adults is at its height in pregnancy during which time women observe food distinctions with the goal of bearing a healthy, whole child. The system of differentiation is applied to animal products and informed by Songye’s knowledge of the behavior and characteristics of animals. Knowledge of animals is applied through metonymic continuities to characteristics of the child. For example, snake meat is be avoided to bear a child which would not be able to stand upright like the snake, and meat of the elephant is to be preferred to have a strong child. In short, these food taboos and preferences illuminate a first major characteristic of Songye cosmology by reference to the animal world, which can largely be divided in categories that sustain or diminish the potential of bearing a whole child. It also illustrates the distinction between the human and the animal and clarifies the relations between both. The human world is defined in terms of specific relations with the animal world. Through differentiation, the boundaries of human world are permeable to accept those characteristics that strengthen its human characteristics and shut off those characteristics that may impede it. While the boundaries become permeable, the practices of differentiation serve to keep the human and animal world (which is part of nature) separate. The extraordinary body in Songye cosmology is the result of an invasion of nature on the human world. The Songye distinguish extraordinary bodies in largely three types. ‘‘Ceremonial children’’ are those whose birth is in some way exceptional (e.g., twinning or unusual presentation); ‘‘faulty children’’ have bodily deficits (motor impairment, spasticity); and ‘‘bad children’’ (including albinos, dwarfs, and hydrocephalics) are inhuman. This categorization shows that how a culture may handle the bodily anomalous not only varies from one society to another but also there is a great variation internally. Ceremonial children are superhuman. Their anomalous character presents the invasion of the natural upon the human realms: while most humans have single births, twin children resemble the multiple births characteristic of the animal world. It can also represent the reversal of order, e.g., the child who is born with teeth represents danger because it violates the order of events. Last, the ceremonial child may be attributed with holding up the rain, causing calamity, as is the case in the child that is born and identified with these characteristics. Two actions characterize the response of the Songye: these children are labeled with a specific name. Thus, a conservative bias is built in by bringing these children, who represent disorder of some sort, into a system. Such a system builds confidence that the disorder can be neutralized and incorporated in an existing system of order. The second

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action is a ritual, mostly consisting of bringing together a community and the slaughtering and eating of a chicken. This ritual also dissipates the chaos created by the birth of the child. However, both actions have also the effect of recognizing and formalizing the special status and power of the child. Labeling and ritualizing bodily difference creates special status in a classification of people where some are more and others are less. Such status clearly impacts the boundaries between people: ceremonial children are often characterized as having supernatural powers that include healing and magical forces. The ‘‘bad child’’ is at the other end of Songye responses toward the anomalous and ambiguous child. This child illustrates the Songye cosmology as one that is anchored in oppositions of human and natural, life and death, good and evil, this world, and the supernatural. Bad children are inhuman; they represent evil, death, and the supernatural world. Bad children represent an invasion by nature that cannot be conquered. While such a child is cared for it is not included in social life. The tolerance toward the ambiguous in this case is one of waiting until the disorder removes itself. Lastly, the ambiguity of faulty children is to be understood in a network of relations. Their disability symbolizes a past infringement of the natural upon the human of which the damage cannot be restored but is to be lived with. It serves as a reminder of wronged relationships with fellow human beings, with the ancestors, and with God. Physical deformities show the boundaries of Songye cosmology in terms of its major pillars of interconnection. Wronged relationships with fellow human beings elicit attacks of a supernatural nature. It reminds the Songye that when interpersonal relationships are weak, sorcerers are always out to take benefit by enforcing their power and diminishing that of humans. Bodily difference in this sense is a reminder of a lost battle between humans and sorcerers. Physical deformity that is attributed to the anger of ancestors reminds the Songye of the cyclical nature of life: people who die become ancestors that can be reborn in the next generations. Ancestors deserve respect, and a weakening of ancestor respect may result in anger and deformity. Last, faulty children may be attributed to being caused by God. This possibility shows the distinction between humans and God and reveals the nature of God as a distant power that causes both good and evil. From this example, it may be clear that the anomalous shows the culturally constructed world in which people move. It provides insight in the nature of the boundaries, their permeability, and ultimately the nature of cosmology. In addition, in such culturally constructed worlds, the ambiguity that is derived from anomalous beings is also culturally determined.

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The Songye’s dealing with ambiguity is not one-sided exclusion or inclusion. Rather, multiple solutions are pursued depending on the nature of the ambiguity.

Snake Child: The Boundaries of Classification Children with visible bodily differences in parts of Coˆte d’Ivoire are commonly called a ‘‘snake child.’’ The connotation in these terms is similar. In the case of the snake child, the meaning is both symbolic and has social implications. Symbolically, children with physical impairments will crawl on the ground, like a snake, never standing up. The snake is also an animal that is not domesticated and therefore does not belong in the human realm. However, a characteristic of this animal is that it sneaks in and out of a human environment, remains there for a long time, despite all the precaution humans take to exclude this animal from entering. Last, the snake is dangerous to humans. As within many sub-Saharan African cosmologies, a child is to be born healthy and whole. Without sign of wholeness, attributions are made that the child belongs to another world. The presence of such a child may be largely tolerated, but facilitating the return of this child to its proper place is deemed appropriate. The practice and surrounding rituals of infanticide in many traditional African societies are meant to facilitate a return without offending the spirit of a being that does not belong in the human realm. Among the Beng of Ivory Coast, a child that would be labeled mentally retarded by a Western observer may be interpreted as animal, such as a dog, a deer, or a snake. Anthropologist Alma Gottlieb (seminar communication, 1996) learned that one child with mental retardation was considered a deer. The child was tolerated to remain in the village, although it was not seen as belonging. Further investigation revealed that the categories of human and animal are not tightly separated: animals transform into humans and vice versa. From these examples, it may become clear that the category of the extraordinary in West-African societies is clearly conceptually marked as ‘‘not belonging.’’ Such a conceptual distinction need not necessarily result in social exclusion. Instead, the presence and care of persons with visible differences is characterized by social tolerance. In addition, the conceptual schemes by which African people organize their world are revealed. The contradiction between the village and the bush, humans and animals, are forceful organizing categories. However, these organizing categories

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permit flexibility: there is a connection between the village and the bush, between human and animals. Persons with visible differences are at the interstices of these classifications. As in other societies, bodily disorder upsets the organizing categories but there is a remarkable tolerance that feeds back into modifying and making more complex of the categories. This is well illustrated in an observation in Parallel Worlds, where Philip Graham recounts what he and Alma Gottlieb witnessed: I had often noticed a young girl in Kosangbe´ who had an odd, bony forehead and a smile that never conveyed pleasure, and she seemed too old to be wearing only a child’s loincloth. Her name was Amlakro – little Amla – and she was the younger sister of poor, benighted Afwe´. Her eyes and movements awkward, wild, Amlakro often rushed randomly through the village, laughing while adults spoke, interrupting families while they ate together. Once in passing I mentioned her to Amenan. ‘‘That girl is really a snake,’’ she said, and proceeded to tell us that a pregnant woman was forbidden to eat anything while walking on a forest path to or from her fields, for should she violate this taboo she might inadvertently drop crumbs along the way. If a snake was near – and when was this not so? – it would eat the crumbs and become filled with an overwhelming desire for human food. The snake’s soul would enter the woman’s womb, possess her unborn child, and then be born into the human world. But this snake child, unused to four limbs and language, would forever struggle through its new existence. I listened, rapt. Amlakro has always seemed mildly retarded to me, and this must have been the Beng explanation for such a condition. Amenan concluded, saying that one way to definitively identify – and permanently exile – a suspected snake person was to take one to a diviner, who would put a specially prepared dish of cooked yam, egg, and palm oil in a secluded spot in the forest. If the snake person refused the dish – which was understood by the Beng to be a favorite of snakes – that person’s true humanity would be revealed and no further treatment would be offered. But more often, Amenan claimed, the suspect would begin to devour the food ravenously. As he or she did, the head and then the whole body would start spinning until it finally twisted itself into the snake that it really was and slithered off into the forest, never to be seen again. (Gottlieb & Graham, 1994, pp. 135–136)

A number of conclusions can be drawn from these observations. First of all, a mentally retarded child is symbolized as a snake child. The snake is an anomalous animal in the way it transgresses the cultural boundaries between the village and the bush. Similarly, the snake child is one that has transgressed the boundaries between the human and the animal. While such a being may be tolerated, there seems to exist, at least conceptually, a way of radically separating out both. The permeability between the boundaries is clearly illustrated in the account. It appears that between the conceptual categories of village and

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bush, human and animal, there is a bridge, embodied in the anomalous body and symbolized by the snake. Not only is the closedness of the categories not tenable, here is a clear example of how categories can be transformed: things of the bush permeate those of the village and vice versa (Gottlieb, 1992). The Beng have the cultural tools to separate the categories as they get meddled. They keep their villages clear of the forest; they separate between animals that are domesticated and those that are wild. What does this symbolization story tell us about the nature of disability? In its very essence, I would argue that disability presents itself between established categories as interstitial category.

Spatial Classification: Physical Difference in the Twilight Zone Contemporary African discourse on disability is very complex, both the result of a rich cultural heritage and recent colonial and postcolonial experiences. Rather than looking at this discourse, it may be better to look at the areas in which people with disabilities are situated and situate themselves. This method may be more powerful and save us from the potential dangers of trying to disentangle the complexities of discourse. Two large African cities may serve as examples, Kinshasa (Zaire [DCR]) and Harare (Zimbabwe), the first in the French zone, the second in the English zone of sub-Saharan Africa. In Kinshasa, we find persons with physical disabilities coming into the city and working as shoe shiners or simply limping, aided by a wooden stick, alongside people and asking for some change. In Zimbabwe’s capital Harare, in First Street, at the heart of the colonial city, we can find many beggars, many blind and singing, both men and women. How about the rural areas? In rural Zaire, you may find a man with a physical disability making the handle of a hoe or woman selling doughnuts on the side of the street. In rural Zimbabwe, a woman may work in the compound of her parents and a man may work in the fields. These examples may illustrate a life on the margins that becomes especially visible in the city, where people with disabilities are situated in the boundaries between the colonial city and the African zones. While in both zones, begging may be unacceptable; it becomes acceptable at the boundaries. The very act of singing by the blind beggars in Harare is another symbolic act because, situated at the boundaries, their singing transgresses the profane and challenges the spiritual life of anyone who cares to listen. But also in the rural areas we find lives at the margins. For women, marriage is often excluded and when it is, it is a marriage that has not the same symbolic value

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as other marriages because the dowry rules are most often not honored. While marriage may not constitute the same barrier for men, capability to work in the fields and productivity in other employment may be serious challenges to the stability of marriage and the man’s status within the marriage. From these examples, it could be argued that lives of many people with physical disabilities are situated in the in-between symbolic zones. While these examples are of adults, one may ask the question whether this also applies to African children. Again, classification in the twilight zones seems prominent. Among the Songye of Kasayi, children are classified in three categories: ceremonial children (baana ba mishinga), bad children (baana ba malwa), and faulty children (baana ba bilema). Those whose birth is special because they are twins, or cause to stop the rain, born with teeth, with the head first, or with the hand on the cheek, demand ceremonies to normalize them. These ceremonies involve the naming of the child with a specific name, indicating it as special, a sacrifice (mostly the killing of a chicken), and a gathering of a community of people who feast and celebrate the occasion. The ceremony normalizes and brings the children into the community. The special attention also leaves a trace of meaning that demands special consideration and puts these children in a category above the ordinary child. On the other side, ‘‘bad’’ children are believed to come to this world on a visit. They belong to another world and must go back to where they belong. In this category are children who have hydrocephalus, dwarfs, and very ill children. They will be ‘‘aided’’ to return to their world by neglect and in earlier days through a ritual that results in their death. To mark this infanticide as mere ‘‘killing’’ is unfair because its process involves consulting and ritual that intends to protect the spirit of the child and those of the community. Last, ‘‘faulty children,’’ marked by physical difference do not belong either to the category of ‘‘ceremonial’’ or ‘‘bad children.’’ Their status is neither above nor below the ordinary, but rather that of the ambiguous, the neither here nor there. From these examples, it may be safe to conclude that the classificatory status of persons with disabilities in Africa is at the interstices of classification itself. While this argument can be made for the here and now world, it may also be useful to explore the boundaries between this world and the other world. Connecting with the ‘‘Other’’ World African cultures are known for imaginative exploration of the deeper causes of events that gives meaning in a whole, not segmented, world, one that is

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integrally interconnected. Such is also the case for the phenomenon of disability, where the ‘‘why-did-this-happen’’ question is central and of greater importance than the ‘‘how-to-fix’’ question (Devlieger, 1995). Such exploration outlines the cosmology of African people, the very way their world is made. In the case of a child born with a clubfoot, the exploration of the Songye goes indifferently to the world of ancestors. The Songye believe in reincarnation, and attribute the birth of a child to the rebirth of an angry ancestor who is determined to manifest this anger. In one case, a child born with a clubfoot was attributed to a mother having attended the funeral of an uncle. It was determined that this ancestor was not buried properly as his coffin was not made to size. As disability becomes a sign as a difference, it demands action. This action is foremost in determining who the ancestor might be and what could be the cause of the anger. It also demands a restoration of the respect that ancestors deserve. In other words, disability serves as a sign to question certain behaviors, an identification and reaffirmation of who they are and who they belong to, and a connection to the other world. In the Muslim cultures of West Africa, it is a well-known practice that any good Muslim should give alms, by preference, to a person who is disabled. This should not be interpreted as an act of charity in the Western sense but rather one of moral standard. Almsgiving is part of earning one’s afterlife, one’s entrance into the other world. Also, in traditional West-African cultures, a person with a disability may be situated on the boundaries between the human and animal world. The boundaries between human and animal world are not sharply distinguished but rather transparent. It is possible to transform from one into the other. This may become visible in the labeling of a person as nonhuman and belonging to the animal world. In some West-African cultures, e.g., among the Beng, it is possible that a person with a mental disability is not identified as a person, but as a deer, coming from outside the village, this is from the nonhuman world (Gottlieb, 1996, personal communication). Last, the symbolic positioning of persons with disabilities, closer to earth, suggests a connection to both the roots and the end of life. Being positioned between death and life also makes such a person a great candidate of discussing related matters. This becomes clear from the following proverb: ‘‘When the person with the physical disability enters, the door is completely shut.’’ This proverb suggests that persons with physical disabilities can be the center of knowledge that can privately be discussed, with the door shut and without the ears from others. As consultants, persons with disabilities may help us to enter other realms.

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Disability discourses in the United States and its influence all over the world has brought strong awareness of the marginality of persons with disabilities and the recognition of their civil rights. American ideology continually reminds and assumes that a move from the negative to the positive is in everyone’s interest. The African material brings us a different message, one that recognizes the in-between status of persons with disabilities and one that shows how such in-between status may work in its connecting classifications that make this world intelligible as well as the connection with the other world. Moreover, if the insight of disability at the interstices of classification is valid, it may be of great potential for the study of cultural classification as a whole. It would mean that the categories that constitute disability in a particular culture are indicative of that entire culture. Such work could be at the basis of developing disability cosmologies, i.e., the questioning of classification and the deconstruction and reconstruction of cultural wholes. In a very segmented world, it may make sense to bring back some of the wholeness that constitute a cosmology. It also seems to make sense to allow bringing out the potential of persons with disabilities for what they are or potentially could be. From research work in New York city with persons with disabilities, Robert Murphy and colleagues (Murphy, Scheer, Murphy, & Mack, 1988) concluded that the status of these persons could be labeled as liminal, i.e., ‘‘on the threshold,’’ in-between. Often, they found these persons remaining in their apartments because there was not place for them to go. In his own disablement, Murphy painfully became aware of his own marginal status by the looks and questions of people and used this experience to analyze the classifications that define his own world. The similarity in the African and American cultural realms of in-between classification, while differently constructed, is striking and raises questions of human universals.

DISCUSSION: CULTURAL DEFINITIONS OF DISABILITY The cultural picture of disability in the United States can hardly be summarized in one consistent group of ideas because the environments and populations are so diverse that one needs to be very specific on the way the categories are made up. But perhaps unique is the ideological make up of disability as something that is connected to the individual at the center of decision-making rather than to a group (Murphy, 1988) and its recent

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connection to civil rights (see Shapiro, 1993). In its connection to the capitalist economic system, Philips (1990) argued that physical disability can be understood as ‘‘damaged goods.’’ In the context of the inner city, physical disability that results from revenge of gang members may serves as a symbol of relationships, a permanent marker, and a reminder of potential damage yet to be made. These constructions of physical disability may remind us that disability indeed is a cultural construction. To make this point more explicitly, examples from other cultures may make us even more aware of this fact. In addition, they may make us aware of the alternative and the richness of possibilities, and the potential that if disability is a constructed reality, it can be deconstructed and reconstructed. That, it seems, is at the heart of developing disability studies as a scholarly endeavor. To look crossculturally is to become aware of the richness but also of the obvious. In discussing a few examples from Africa, the problem of classification is expanded. The argument is that persons with disabilities are situated in-between and function as bridges between different zones of classification. This argument can be made for the world, here and now, and as a bridge between this word and the ‘‘other’’ world.

NOTES 1. The Songye are a people living in the East-Kasai province of the Democratic Republic of Congo (former Zaire). Fieldwork among the Songye dates from 1983 to 1985 when the author was a volunteer-researcher, stationed in Kabinda, about 300 km east of Mbuji-Mayi, the capital city of East-Kasai. 2. One aspect of specificity of language use related to disability in American culture is outlined elsewhere. I argued that the change from the use of the term ‘‘handicap’’ to the term ‘‘disability’’ constitutes a major shift in discourse in American culture (Devlieger, 1999). 3. A relation can be made to the fact that in Swahili, a single word for ‘‘healthy,’’ –zima, also means ‘‘whole.’’ The word –zima is also used to refer to an adult, as opposed to a child, showing a relationship between smallness and incompleteness (Contini-Morava, 1997, personal communication). 4. Some terms that refer to large, dangerous animals, or birds in class 7 are strikingly anomalous in view of the overall tendency of the class to hold small and utilitarian objects. One interpretation is that names of large, dangerous animals are put in the class of small, manipulable things is a way to euphemize, neutralize, or diminish their power (Contini-Morava, 1997). This practice reinforces the understanding that disabled persons are assigned diminutive meanings. 5. This holds also for Proto-Bantu (Denny & Creider, 1976).

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6. Contini-Morava (1997) notes that the connotation to fruits is one of being ‘‘large’’ while fruits and vegetables are ‘‘objectively’’ smaller than many manufactured objects. This underlines a central finding of recent research on linguistic categorization: that human beings classify things in the world linguistically according to their human, culturally mediated perspective, not according to ‘‘objective’’ characteristics of the things themselves. Fruits become ‘‘large’’ in relation to their earlier stages of growth, and it is when they become large that they are of most value to humans. Because people with impairments can be classified in class 7 and in class 5, it appears that they can have both connotations of ‘‘smaller’’ or ‘‘bigger’’ and thus become assigned diminutive or augmentative meanings leading to being despised or being feared. 7. I limit the discussion here to an analysis of the embodied person as embedded in a classification of the extraordinary body. For a discussion on how the embodied person is embedded in social relations, see Devlieger (1995).

ACKNOWLEDGMENTS This manuscript benefited from presentation at a conference organized by the Platform Handicap en Ontwikkelingssamenwerking (Disability and Development Collaboration), Belgium, October 1996, a discussion at a doctoral seminar under the direction of Professor Rene´ Devisch at the Katholieke Universiteit Leuven, and presentation of sections of the material at a symposium at the Institute on Disability and Human Development at the University of Illinois at Chicago. Discussion on the linguistic categories benefited from e-mail exchange with Ellen Morava-Contini and material supplied by Kari-Anne Selvik. Thanks also for discussion with Professor Alma Gottlieb on ethnographic material on the Beng of Coˆte d’Ivoire, following a presentation at the University of Illinois at Urbana-Champaign in the spring of 1996, and subsequent conversations. I gratefully acknowledge the Platform Handicap en Ontwikkelingssamenwerking for the opportunity to publish an early version of this chapter as ‘‘Handicap/ Disability’’ als interstitie¨le categorie’’ in Devlieger and De Greve (1999).

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Denny, J. P., & Creider, C. (1976). The semantics of noun classes in proto-Bantu. Studies in African Linguistics, 7(1), 1–30. Devlieger, P. (1995). From self-help to charity in disability service: The Jairos Jiri Association in Zimbabwe. Disability and Society, 10(1), 39–48. Devlieger, P. (1998). Physical ‘disability’ in Bantu languages: Understanding the relativity of classification and meaning. International Journal of Rehabilitation Research, 21(1), 51–62. Devlieger, P. (1999). From handicap to disability: Language use and cultural meaning in the United States. Disability and Rehabilitation, 21, 346–354. Devlieger, P. (2003). From ‘idiot’ to ‘persons with mental retardation’: Defining disability in an effort to dissolve it. In: P. Devlieger, F. Rusch & D. Pfeiffer (Eds), Rethinking disability: The emergence of new definitions, concepts and communities (pp. 169–188). Antwerpen: Garant. Devlieger, P., & De Greve, A. (Eds). (1999). Handicap in Intercultureel Perspectief: Verkenning rond Classificatie, Familieleven, en Discours. Schaarbeek: Platform Handicap en Ontwikkelingssamenwerking. Douglas, M. (1966). Purity and danger. New York, NY: Routledge. Durkheim, E., & Mauss, M. (1963). Primitive classification. (R. Needham, Trans.). Chicago, IL: University of Chicago Press. Farquhar, J. (1987). Jairos Jiri: The man and his work, 1921–1982. Gweru: Mambo. Geertz, C. (1973). The interpretation of cultures: Selected essays. New York, NY: Basic Books. Gottlieb, A. (1992). Under the Kapok tree: Identity and difference in Beng thought. Bloomington, IN: Indiana University Press. Gottlieb, A., & Graham, P. (1994). Parallel worlds: An anthropologist and a writer encounter Africa. Chicago, IL: University of Chicago Press. Groce, N. (1985). Everyone here spoke sign language. Cambridge, MA: Harvard University Press. Helander, B. (1995). Disability as incurable illness: Health, process, and personhood in Southern Somalia. In: B. Ingstad & S. Reynolds Whyte (Eds), Disability and culture (pp. 77–93). Berkeley, CA: University of California Press. Hockenberry, J. (1995). Moving violations. New York: Hyperion Press. Holzer, B., Vreede, A., & Weigt, G. (Eds). (1999). Disability in different cultures: Reflections on local concepts. Bielefeld: Transcript Verlag. Iliffe, J. (1987). The African poor. Cambridge: Cambridge University Press. Ingstad, B., & Reynolds Whyte, S. (Eds). (1995). Disability and culture. Berkeley, CA: University of California Press. Le´vi-Strauss, C. (1963). Structural anthropology (C. Jacobson and B. Grundfest Schoepf, Trans.). New York, NY: Basic Books. Murphy, R. F. (1987). The body silent. London: Phoenix House. Murphy, R. F., Scheer, J., Murphy, Y., & Mack, R. (1988). Physical disability and social liminality: A study in the rituals of adversity. Social Science and Medicine, 26, 235–242. Ohnuki-Tierney, E. (1981). Phases in human perception/conception/symbolization processes: Cognitive anthropology and symbolic classification. American Ethnologist, 8, 451–467. Philips, M. (1990). Damaged goods: Oral narratives and the experience of disability in American culture. Social Science and Medicine, 60, 849–857. Reynolds Whyte, S., & Ingstad, B. (1995). Disability and culture: An overview. In: B. Ingstad & S. Reynolds Whyte (Eds), Disability and culture (pp. 3–32). Berkeley, CA: University of California Press.

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Ross, D. H. (1988). Educating handicapped young people in Eastern and Southern Africa. Paris: UNESCO. Scheer, J., & Groce, N. (1988). Impairment as a human constant: Cross-cultural and historical perspectives on variation. Journal of Social Issues, 44(1), 23–37. Selvik, A. (1996). Setswana noun classes: Conceptual categories marked by grammar? Unpublished Cand. Philol. Thesis, University of Oslo, Oslo. Shapiro, J. P. (1993). No pity: People with disabilities forging a new civil rights movement. New York, NY: Random House. Spitulnik, D. (1987). Semantic superstructuring and infrastructuring: Nominal class struggle in Chibemba. Bloomington, IN: Indiana University Linguistics Club. Stiker, H.-J. (1992). De la metaphore au mode`le: l’anthropologie du handicap. Cahiers Ethnologiques de l’Universite´ de Bordeaux II, 13, 13–37. Talle, A. (1995). A child is a child: Disability and equality among the Kenya Maasai. In: B. Ingstad & S. Reynolds Whyte (Eds), Disability and culture (pp. 56–72). Berkeley: University of California Press. Thomson, R. G. (1997). Extra-ordinary bodies: Figuring physical disability in American culture and literature. New York: Columbia University Press. Zola, I. (1982). Missing pieces: A chronicle of living with a disability. Philadelphia, PA: Temple University Press.

A RELATIONAL APPROACH TO THE DEVELOPMENT OF CIVIL RIGHTS FOR PEOPLE WITH INTELLECTUAL DISABILITIES$ Allison C. Carey ABSTRACT This chapter asserts the theoretical importance of a relational approach for examining the historical development of civil rights for people with intellectual disabilities. A relational approach examines contestations over rights as embedded within and across various groups, settings, and times. Through this approach, we see, first, that struggles over rights are primarily struggles over ‘‘relational visions,’’ or the desired relational structure across groups. Second, rights for people with disabilities intersect with rights for other minority groups, and therefore, we must examine the broader stratification and relational structure. Third, rights developed differently depending on relational setting. Finally, rights have been used as ‘‘technologies of power,’’ requiring ‘‘normative’’ behavior for inclusion. Overall, a relational approach provides a set of concepts and a $

Material from this manuscript was incorporated into Chapter 2 of On the Margins of Citizenship: Intellectual Disability and Civil Rights in the Twentieth Century (Philadelphia: Temple University, 2009).

Disability as a Fluid State Research in Social Science and Disability, Volume 5, 103–129 Copyright r 2010 by Emerald Group Publishing Limited All rights of reproduction in any form reserved ISSN: 1479-3547/doi:10.1108/S1479-3547(2010)0000005007

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theoretical framework that furthers our understanding of citizenship for people with intellectual disabilities as it transformed through time and as it developed alongside citizenship for other populations.

When we debate access to civil rights for people with intellectual disabilities,1 we really debate the appropriate ‘‘place’’ for people with intellectual disabilities in American society. At times, the debate concerning place may focus on actual physical sites such as institutional versus community placement, but, more often, the idea of place refers to how people with disabilities fit within the broad configuration of social relationships and stratification. Civil rights play a key role in this debate because rights potentially offer a means by which to transform the place of people with intellectual disabilities within society. Rights provide a potential source of power to influence other people, and as such, they transform relational obligations and expectations, alter the way people are perceived, and affect the identities that can be claimed. In sum, rights shape the way people with intellectual disabilities can and are expected to relate to other members of society. Therefore, rights are inherently relational, claimed in the context of relationships, and, like most forms of power, only meaningful within such a context. Thus far, little scholarship has directly addressed the history of civil rights for people with intellectual\and the scholarship that exists tends to offer narrow explanations for particular events involving rights, such as the passage of eugenic restrictions or the Americans with Disabilities Act (ADA), without a macro framework to guide the understanding of how or why rights developed over time as they did. Moreover, in works that do address rights over time, we see several common assumptions that simplify the history of rights. Most commonly, changes in access to rights for this population are seen as driven by changes in professional and popular perceptions regarding the abilities of those defined as intellectually disabled to exercise rights. Although perceptions regarding ability level are of course central to rights debates, these perceptions are manipulated as part of a broader struggle over ‘‘relational vision,’’ or, in other words, a struggle over the desired patterns of relationships among people with intellectual disabilities, professionals, other constituencies, and the state (Carey, 2009). As I will show, activists typically sought to grant or deny rights to this population because rights represented a means by which to establish or fortify a pattern of relationships affecting the flow of power and resources

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across groups. Thus, struggles over rights involved not just perceptions of a single population – in this case, people with intellectual disabilities – but also constructions of other groups and ideas about how various groups should interrelate. For this reason, the history of intellectual disability, although frequently discussed in isolation from the development of civil rights for other groups, has always been inherently connected to the development of rights for other groups. This connection has not always been linear; a gain for one group has not automatically led to a gain for another group. However, insofar as rights affect the position of a group in a society’s stratification structure, the position of one group often affects the position of another group. We also tend to portray the history of rights for this population as a progression from exclusion to inclusion, in which people with intellectual disabilities have gained rights and thereby power over time. To some degree, this view is correct, but a relational approach complicates this narrative. As will be shown, the impact of rights varies by place and relationship, such that rights may be a source of power in one situation but not in another. Moreover, Foucaultian analyses of rights indicate that, while rights can be a tool for empowerment, they can also be used to place people with intellectual disabilities into structured, supervised settings like public education and community-based group homes that demand ‘‘normative’’ behavior as a requirement for inclusion, such that rights have actually served as a ‘‘technology of power’’ to regulate people with intellectual disabilities rather than, or in addition to, empowering them. In this chapter, I argue that a relational approach provides a useful macro framework to guide the analysis of rights through time. Although in the scope of this chapter I cannot lay out the entire history of civil rights for people with intellectual disabilities, my goal is to explain how a relational approach reorients our understanding of this history and why this reorientation is important in developing a more sophisticated understanding of the historical development of rights for people with intellectual disabilities.

MOVING FROM LIBERALISM TO A RELATIONAL APPROACH TO CITIZENSHIP Before addressing the history of rights and intellectual disability, this section provides a brief review of the relevant literature, focusing on the shift away

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from liberalism to a relational approach. Liberal political philosophy, the dominant perspective underpinning American thinking about civil rights, focuses attention on the individual as the key unit of analysis. According to liberalism, rational and autonomous individuals originally created government to protect their well-being, but in creating such a powerful institution, they potentially jeopardized their own freedom. To protect their freedom, individuals demanded the state confer rights that would safeguard their ability to engage in autonomous action (Ackerman, 1971; Rawls, 1984). In this philosophy, the individual is the key to rights and citizenship – individuals receive rights based on individual abilities including rationality and autonomy; individuals claim rights to satisfy individual concerns; and individuals exercise rights to engage in autonomous action. Ideally, the state treats all individuals equally in the eyes of the law, regardless of their social status, ascriptive characteristics such as race or gender, or relationships. Since the 1980s, liberalism has come under fire from feminists and more recently disability scholars for many reasons, but especially because it has been used to justify the denial of rights to political minorities. Liberalism assumes that rights-bearing citizens must be both rational and independent, standards that have been used to distinguish between worthy and unworthy citizens. Although independent and rational citizens are deemed worthy of civil rights, citizens perceived to be irrational and dependent are denied rights and offered instead protection and care (Minow, 1990; Phillips, 1991). Given the importance in liberalism of rationality and independence, it is perhaps unsurprising that people labeled as intellectually disabled have been denied rights. Standard definitions of intellectual disability suggest that people with this label may have both a lower likelihood of ‘‘rationality’’ and a higher likelihood of dependence. When compared to the mythical rational and independent citizen, people with intellectual disabilities may seem inferior, incapable, and even dangerous to citizenship (Kittay, 2001). Although these criteria may set a standard that is difficult for some people to meet, the more serious flaw in the logic of liberalism is that the criteria are actually illusory and falsely dichotomize people into the poles of rational/ irrational and independent/dependent. The supposed ‘‘autonomous individual’’ actually relies on various supports. For example, men often depend on women to perform reproductive and caretaking tasks, which free men to conduct their activities in the public sphere; yet, men’s dependence on women has not hindered their status as rights-bearing citizens. On the contrary, women may depend on men to provide for them financially, which frees women to perform caretaking tasks; yet, this form of dependence was used historically to justify the denial of rights. Men and women both

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depended on each other; yet, only women were depicted as ‘‘dependent’’ (Fraser & Gordon, 1992; Okin, 1989; Pateman, 1988; Pearce, 1990). Similarly, people without disabilities often rely on architectural features and modes of operation, which make the world convenient for them to use, such as the availability of chairs and lighting in meeting rooms; yet, when people with disabilities seek access and accommodations for ease of use, they are perceived as dependent or ‘‘special’’ (Lloyd, 2001; Morris, 1993; Rose, 2004). Through the differential application of the concepts of rationality and independence and the denial of our inherent interdependence, liberalism has been used to enforce dominant/subordinate relationships such that some groups appear to be worthy of civil rights while others are marked as inferior and denied rights. On the basis of these early criticisms of liberalism, scholars began to articulate a relational approach to rights. Rather than explaining rights through individual abilities and actions, relational theorists see rights as a dynamic activity performed within the context of relationships to influence someone’s actions. Whether rights are called upon to guarantee freedom from intervention, demand supports, or elicit a particular response, they are intended to evoke a relational demand or expectation (Turner, 1993). Specific relationships provide the context in which rights are exercised and affect the impact of rights. Rights do not simply flow prepackaged from legislation on-the-books; they are subject to meaning-making, negotiation, and contestation shaped within the context of the specific relationship (Somers, 1994; Soysal, 2000). Recent works on the ADA (Engle & Munger, 2003; O’Brien, 2004) show that the impact of rights varies tremendously based on relational and situational factors. For example, in O’Brien’s work, Voices from the Edge, Novak describes his experience negotiating his rights to employment accommodations when hired. In the ideal world, Novak would, upon being hired, disclose his disability, specify necessary reasonable accommodations, and receive them or have redress through the ADA. However, in each employment setting, Novak instead finds that he must weigh factors including the likely response to his disclosure, the likelihood of receiving accommodations, the likelihood of becoming a victim to discrimination, the likelihood that the ADA could protect him from subtle and not-so-subtle forms of discrimination, and the potential that his disclosure could even be used against him. Novak ultimately decides, ‘‘I tell only when it suits me, and when it gives me power’’ (p. 62). He is all too aware that, depending on the relationship and setting, disclosure can empower as well as disempower, and he carefully weighs the likely outcome before claiming rights. In general, the power of rights, even when they exist

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formally on-the-books, remains ambiguous because an individual must be in a position to make a rights claim and have this claim be recognized by another person or institution, including potentially the courts. Whereas liberalism envisions rights as a source of power, a relational approach argues that rights can be used for inclusion, exclusion, or both (Turner, 1993). The provision of rights to marginalized populations may actually disempower them by tying rights to the expectation of ‘‘normal’’ productive labor and behavior (Drinkwater, 2005; Russell, 1998; Titchkosky, 2003; Tremain, 2005; Yates, 2005). Those who look, act, and move in ‘‘normal’’ ways gain rights to employment, mainstreamed educational settings, and so on, whereas others are denied these rights. Rights then become a ‘‘carrot’’ to encourage conformity to a particular view of normality. Disability scholars have begun to develop and apply relational models of rights to the study of the contemporary disability politics and experience, but what of the past? Does a relational approach alter the way we view history? Does it help us understand how and why civil rights emerged as they did for people with intellectual disabilities? In the following sections, I show that a relational approach draws our attention to the negotiation of relational power and stratification in the development of rights and yields key insights into the development of rights across time and settings for this population.

A RELATIONAL APPROACH TO THE HISTORY OF CIVIL RIGHTS Creating and Implementing ‘‘Relational Visions’’ Traditionally, historians of intellectual disability prioritize the views of professionals and ‘‘experts’’ so that rights seem to flow from professional understandings of the abilities of people with intellectual disabilities; as professionals gained knowledge about the abilities of this group, they increasingly advocated for and secured rights for this population. This historical narrative fits nicely with liberalism as both connect right to individual-level abilities, or at least perceptions of these abilities. A relational approach, though, asks us to look at who engaged in rights debates, why they engaged in them, and how their stance on rights was shaped by their relationship to intellectual disability. Activists do not devote

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time and resources to expand or restrict rights due to abstract notions of rationality, independence, or other abilities. Rather, activists engage in political debates to secure a ‘‘relational vision,’’ a desired pattern of relationships among people with intellectual disabilities, other constituencies, and the state affecting the flow of power and resources, usually based on the activists’ own relationship to intellectual disability. Over time, many relational visions relevant to intellectual disability have been proposed. In this section, I briefly compare the relational visions advocated by professionals during the eugenics era, parents in the 1950s, and selfadvocates in the 1990s. I do not set out to conduct a comprehensive history here, but rather to highlight the idea that debates about rights contain and contest relational visions. In the early twentieth century, professional and popular conceptions about intellectual disability were often remarkably negative. Rooted in eugenics, a pseudo-science dedicated to population improvement, ‘‘experts’’ of the day tended to depict intellectual disability as a biological defect, which caused a wide array of other social problems such as poverty, crime, and sexual deviance (Reilly, 1991; Trent, 1994). Intellectual disability posed a grave threat to society, but fortunately, according to eugenicists, its negative impact could be minimized most successfully and economically through professional intervention, including potentially identification, institutionalization, segregated education, sterilization, and the denial of rights like the rights to vote, contract, and marry. Although many different types of people promoted this negative view of intellectual disability and advocated the denial of rights for this population, for simplicity’s sake, here, I concentrate on the role of professionals and especially institutional superintendents in pursuing rights restrictions. For superintendents, rights restrictions meshed well with a relational vision that drew upon the philosophy of the ‘‘helping professions’’ as the basis for rights and social power. Professionals, as the ‘‘experts,’’ identified a segment of the people as in need of treatment and cure. They did not only need treatment and cure for their own good, but because without it, they threatened the well-being of other citizens and society most broadly. Martin Barr (1902), chief physician at the Pennsylvania Training School for FeebleMinded Children, captured this perspective well in his article, entitled, ‘‘The imbecile and epileptic versus the tax-payer and the community.’’ In this article, Barr defended institutionalization by showcasing the burden of the disabled upon the community. He stated, ‘‘Of all dependent classes there are none that drain so entirely the social and financial life of the body politic as the imbecile’’ (p. 161). He continued by highlighting that rights only hold

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firm when they do not conflict with the rights of other citizens when he said that, ‘‘The spirit of the Constitution protects every man in his inalienable right of the pursuit of happiness, it is true, but only when that pursuit does not conflict with the rights of his neighbor’’ (p. 163). The interests of the ‘‘feebleminded’’ and the interests of ‘‘society’’ were positioned as inherently contradictory. If left to their own devices, the feebleminded would quickly multiply their numbers and increase therefore the incompetence and poverty plaguing the nation; therefore, it was the ‘‘right’’ of society to protect itself from the reproduction of such deviance. For eugenicists, the way to resolve this conflict was relatively clear. Because the feebleminded posed a threat and a burden to other ‘‘upstanding’’ citizens, the feebleminded would lose their rights so that the state could guarantee the safety and well-being of other citizens. Professionals would be responsible for identifying the ‘‘feebleminded,’’ segregating them if necessary, and treating them if beneficial for society. Because those who needed treatment did not always recognize the danger they posed to themselves and to society, at times, treatment needed to be imposed. Thus, a power asymmetry was considered appropriate, and even ideal, with professionals serving as the gatekeepers of rights in the nation.2 Rights restrictions played a key role in establishing professional control and providing the opportunity to efficiently identify, treat, and even prevent disability in whatever way they saw fit. Certainly professionals relied on rhetoric related to individual abilities, or lack thereof; for example, they argued that people with intellectual disabilities had no sense of wrong or right and were particularly susceptible to negative influences that led them astray. But superintendents also emphasized a particular portrayal of the relationship of people with intellectual disabilities to other people, a portrayal that grew out of their own professional perspective of the world and their relationship to intellectual disability and promised to yield significant benefits for them if established. In particular, this vision potentially enhanced the professional prestige and power of superintendents (Trent, 1993). Institutionalization and sterilization brought large numbers of people under their supervision; patients’ lack of civil rights gave institutional authorities almost total power over their lives; and superintendents appeared to be heroically rescuing society from a dangerous disease. Activism on the part of superintendents may not have been completely self-serving though. Presumably, many superintendents believed the professional vision and trusted that supervision would benefit persons with disabilities and improve society. Whether self-serving or not, their proposed ideal society entailed a relational

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structure in which people with intellectual disabilities exercised almost no power and were subject to totalizing control by professionals who gained professional power and prestige. In addition to superintendents, other professionals also saw rights restrictions for the intellectually disabled as important to achieving their professional and political agendas. For example, social workers worried about ‘‘unrehabilitative cases’’ residing in the community, who they perceived as ‘‘clogging their case loads,’’ ‘‘complicating their work,’’ and inhibiting the social uplift they were trying to achieve. According to most social workers of the time, these ‘‘cases’’ belonged in institutions, thereby allowing social workers a better chance at creating change in the community (Byers, 1916, p. 226; Newman, 1915). Compulsory education, mandated in 1918, also brought educators into the field of disability as never before. Educators worried that the inclusion of children with disabilities in public schools would ‘‘retard the progress of the class and lower the efficiency of the whole school.’’ Therefore, educators too tended to see institutionalization and segregated education as in their best interests (Cast, 1923, p. 86). Like superintendents, social workers and educators developed their stance on rights based on the perceived impact of people with disabilities on their work and society.3 In the 1940s and 1950s, as eugenics lost some credibility and new groups with new relational visions entered the political sphere, ideas about civil rights began to transform. Although rights restrictions had supported some interests, not all groups benefited from these restrictions. The professional emphasis on social control stigmatized people with disabilities and their families and left parents with few attractive options to pursue in caring for their children. In their roles as nurturers and caretakers, parents sought assistance with parenting and the assurance of lifelong care for their children, not stigma and social control. Parents envisioned a familycentered understanding of rights, in which they, rather than (or along with) professionals, were the experts in the care of the disabled and would hold authority to mediate the rights of their children through formal and informal guardianship. When parents could not adequately perform their role as caretaker, they wanted the state to step in as a substitute parent, with both authority over and an obligation to care for its dependents. In the early parents’ movement, parents did not necessarily want to create equality or autonomy for their children; rather, they saw rights as a means to establish a set of relationships through which the state and professionals would be obligated to provide support and protection to their children. Interestingly, the actual stance on rights was at times similar between

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professionals and parents. For example, in the mid-twentieth century, both superintendents and parents supported the development of institutions, but the reasoning was often different. Superintendents were more likely to support institutionalization by appealing to society’s right to protect itself, whereas parents tended to appeal to the notion of human rights to lifelong care for children with disabilities. In his address to the newly formed National Association of Parents and Friends of Mentally Retarded Children at its first Convention in 1950, Minnesota’s governor, Luther Youngdahl, summarized the newly developing parents’ rhetoric on rights. The following quote shows the focus on providing rights for children (not for autonomous adults, even though ‘‘adult children’’ are presumably included), which would guarantee them love, protection, and services in a way that modeled family relationships. Youngdahl even mentions a parent’s ‘‘right’’ to peace of mind, knowing that one’s children are to be provided for through their lifetimes. Rights as discussed here do not establish autonomous contractual relationships, but rather a set of formal relationships that substitute for or extend the family relationships charged with loving and caring for the disabled. The retarded child has the right to social assistance in a world in which he cannot possibly compete on equal footing. He has the right to special education and to special institutions for the retarded child who cannot be taken care of at home. He has the right to be provided with the most modern training in an institution that is possible, in an institution marked not only by the pleasantness of its brick and mortar and lawns and play areas and educational services and child specialty and medical services, but by an atmosphere and by a group of people in attendance who will not only give that child patient understanding but to love and be affectionate to that child as other children get at home. He has a right to these things and his parents have a right to know that he has these rights. For they too are entitled to peace of mind about what is happening to a retarded child separated from them. (Youngdahl, cited in Dybwad, 1963)

Parents did not necessarily view the abilities of their children differently than professionals did. Yet, parents held a very different relationship to people with intellectual disabilities and sought to have the state support this type of relationship and their own role as parents through the rights it extended. Turning briefly to the recent past, self-advocates with intellectual disabilities have emerged as a key constituency in rights debates. Selfadvocates tend to fight for rights, which enhance their power in personal and social decision-making and create relational obligations among other citizens to accommodate difference, support participation, and promote inclusion. The Disability Rights and Self-Advocacy Movements staunchly

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support integration and empowerment in all spheres of life, including access to education, employment, sexuality, politics, friendships, and leisure. Rather than prioritize the rights of society over the rights of people with disabilities, self-advocates demand to be a part of society with access to all social institutions and forms of participation. In fact, according to selfadvocates, due to the long history of oppression, social justice requires greater attention be given to the needs and rights of people with disabilities than other citizens as the traditions of segregation and prejudice are broken down. Because integration requires physical, attitudinal, and cultural changes, self-advocates envision rights that are tied to social supports and accommodations, thereby placing expectations on all members of society to create the conditions that promote inclusion. Self-determination, a cornerstone of the self-advocacy movement, contains this new relational vision. Self-determination demands that people with intellectual disabilities exercise control over their own lives, including control over the support systems that assist them in making choices and pursuing their preferences. As stated by Speaking for Ourselves (2006), Pennsylvania’s self-advocacy organization, an individual should not receive ‘‘supervision’’ and ‘‘staff,’’ but rather have the power to ‘‘contract for any number of discrete tasks for which they need assistance.’’ Whereas in the past support defined someone as dependent and inferior, now support is to be controlled by people with disabilities, increasing their power in relation to their support system. Beyond their support systems, self-advocates envision a new relational structure in which people with disabilities hold the power to demand inclusion and change throughout society. The assertion of the power to make demands on the state and others can be seen in the following position statement by Self-Advocates Becoming Empowered (SABE, 2006): Close institutions. Get us real jobs. Close sheltered workshops. Give US the money to live OUR lives. Money follows the person means it is OURS not the programs. We have the right to make our own decisions with or without support from others. WE CAN RUN OUR LIVES y. You must change, we have changed, we are taking the power y .

This quote shows several things. First, while there is a positive depiction of abilities (‘‘We can run our lives’’), SABE recognizes the potential need for support. Rather than such support leading to disempowerment though, they assert their power to control that support; as citizens, they control the state and its programs. In addition, the expectation that others must change are vividly set forth; rights cannot be truly established unless all of society

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allows people with disabilities to not only make decisions about their own lives but also make decisions that potentially impact others. Other citizens must change, whether they want to or not, for full inclusion to happen. Across time, activists in each of these movements did not become activists due to some new scientific discovery or abstract notions of independence and rationality. They pursued rights or rights restrictions because of their perceived relationships to intellectual disability. In part, their visions were self-serving, creating relationships that enhanced their relational control and prestige. In part, their visions represent models of social justice and the ideal community. Yet, regardless of the degree to which activism is guided by self-serving or altruistic interests, their activism created and relied on models of relationships and stratification flowing from their perceived relationship to intellectual disability. To note, although the relational visions tend to flow from one’s relationship to intellectual disability, this does not mean that any given group has an ‘‘inherent’’ vision that they will necessarily promote. Parents, for example, will likely be concerned with the well-being of their children; yet as times change, they may alter their understanding of what constitutes the well-being of their children. Moreover, no group of people such as superintendents or parents have ever been completely unified at any one time; there have always been competing visions even among people of the same profession or constituency (Somers, 1993). Superintendents, social workers, and educators were always divided on what they perceived to be the appropriate relationship among people with intellectual disabilities, their profession, and the broader society, just as parents and even people with intellectual disabilities continue to debate among themselves what an ideal relational structure might be. Rights for people with intellectual disabilities have developed over time based on contradictory sets of relational expectations, so that we simultaneously see laws that presume the inferiority of people with intellectual disabilities and laws that offer them equality and power. These contradictions are difficult to remove because many of the relational interests still remain. Many parents still perceive a need for lifelong care for their disabled family members and wish the state would perform a parental role toward people with disabilities; many citizens without disabilities still desire a state that protects citizens from what they perceive as encroachments on their autonomy and unnecessary tax hikes for ‘‘special’’ interests. As we debate rights, we continue to debate the relationship of various groups within society and what, if any, obligations and expectations we should have of each other.

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Relational Intersections The history of rights for people with intellectual disabilities has been treated as unique largely because the exclusion of people with intellectual disabilities has been naturalized and their exclusion has been assumed to be a result of biological/intellectual inferiority rather than a result of political contestation. Yet, rights for this population have always been intricately tied to the patterns of rights for other populations. Because rights are a form of relational power, they necessarily affect the flow of resources and power across groups in a society, such that a change in rights for one group may likely change the social status for other groups. Indeed, rights for people with intellectual disabilities have always been debated in the broader context of rights struggles for people of color, women, people with other disabilities, patients, children, and so on. Much research has documented the interconnectedness of rights across groups. I provide two brief examples to illustrate this point, both of which reveal the intersections between intellectual disability and African-American rights history. The first draws upon Noll’s (1995) analysis of the development of medical institutions for the ‘‘feebleminded’’ by region. As Noll documents, institutions developed later and less extensively in the South than in the North. To explain the late development of institutional segregation in the South, we need to consider the racial, ethnic, and class stratification systems in the South as compared to the North, not simply perceptions of intellectual disability. In the late 1800s and early 1900s, Northern legislators supported the establishment of institutions in part because they saw institutions as a means to control other problems associated with feeblemindedness, including poverty and sexual deviance. Anxiety about immigration also fueled the growth of institutions (Trent, 1994). Northern eugenicists argued that immigrants from Southern and Eastern Europe were disproportionately feebleminded, and their entry into the nation was swelling the ranks of the dependent and deviant (Baynton, 2001). Restrictions against the feebleminded offered both a justification to limit the immigration of certain populations (why allow particular people to enter the nation when they would immediately become a public charge?) and a way to potentially control immigrants who were already in the United States. Hence, in the North, institutionalization was believed to address several intersecting populations of concern including people with disabilities, the poor, deviants, and immigrants. During the same period, the South was still rebuilding from the Civil War, coping with limited finances, and struggling with race relations.

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Institutionalization was perceived to offer little hope as a solution for these problems. Although Southern elites worried about race relations, creating systems of mass institutionalization for African Americans did not seem like an attractive solution as it would impose the economic burden of lifelong care for African Americans on the white population and make cheap African-American labor difficult to access. When medical institutions did emerge, they primarily served whites and excluded African Americans from the ‘‘privilege’’ of treatment, thereby excluding the primary population believed to be dangerous enough to warrant control. In addition, in the context of racial upheaval, people with intellectual disabilities did not seem to warrant intense concern. Unlike African Americans, people with intellectual disabilities were neither asserting their power nor threatening the power structure. Therefore, neither Southern elites nor the wider population in this time tended to strongly promote the social or economic benefits of institutionalization (Noll, 1995).4 The limited economic and social power held by people with disabilities throughout the United States made them vulnerable to exclusion, but to explain the differential patterns of exclusion such as institutionalization and sterilization, we must examine the interconnections with other marginal populations. The histories of race, disability, and rights continued to intersect, most vividly during the civil rights movements. The denial of rights relies heavily on images of good/bad, normality/pathology, and competence/incompetence. As one group effectively contests their exclusion and claims rights, their rhetoric and symbols emerge as ‘‘free-floating resources’’ (Somers, 1993) that can potentially be harnessed by various constituencies in their own formal and everyday struggles. Legislation and court victories from the Civil Rights Movement provided precedents immediately relevant for the Disability Rights Movement and Parents’ Movement (Fleischer & Zames, 2001; Switzer, 2003). The 1954 case, Brown v. Board of Education, which invalidated the notion of separate but equal, led to a ‘‘torrent of legislation’’ (Winzer, 1993, p. 379) demanding education for children with disabilities within community settings. In Mills v. Board of Education of District of Columbia (1972), one of the earliest major disability civil rights cases dealing with education, the District Court cited Brown v. Board of Education to support equal access to education. The 1964 Civil Rights Act also served as a resource used by the Disability Rights Movement; the wording of the Civil Rights Act was placed almost verbatim within the 1973 Amendments to the Vocational Rehabilitation Act to prohibit discrimination on the basis of disability (Scotch, 1984).

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Perhaps more than anything else, the Civil Rights Movement created an environment that questioned exclusion and the current power structure (Shapiro, 1993; Scotch, 1984; Switzer, 2003). The political opportunities created by this movement spurred many marginalized populations into action, and activists applied a rights framework where it never before seemed appropriate. Rights movements arose for the people with mental disabilities and children, who, like people with intellectual disabilities, had been excluded from civil rights on the bases of incompetence and dependence. Rights emerged as a means to protect marginalized populations from societal condemnation rather than a privilege granted to only certain citizens. In the context of mass protest and demands for equality and justice, people with disabilities were able to capitalize on the political opportunities and win major battles toward the establishment of their own rights. Again, my goal here is not to develop a comprehensive history, but to show that rights are tied to the stratification structure. Rights for one population do not occur in a vacuum but are necessarily tied to the larger picture of social relationships. At times, people with intellectual disabilities faced rights restrictions as a means to restrict the rights of other marginalized populations; at other times, they avoided restrictions as negative attention was focused on other populations; at times, they were able to transform the victories of other populations into their own victories, and at times, the victories of the Disability Rights Movement encouraged victories in other movements. By recognizing this interconnectedness, a relational analysis moves the history of intellectual disability from a unique history with little relevance for other populations to an integral part of the broader history of citizenship.

Relational Setting Although we often discuss whether people with intellectual disabilities ‘‘have’’ a particular right or not, as in whether or not a right has been formally recognized or legislated, rights are context-specific and are not applied uniformly across settings. Thus, the power of rights depends in part on what type of setting one resides and lives out one’s life. We can conceptualize the variation across setting by using the notion of ‘‘relational setting.’’ A relational setting refers to the pattern of relational expectations and norms established within a given group, site, or geographic region (Somers, 1993). Three of the most important types of relational settings

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affecting the development of rights for people with intellectual disabilities are the medical institution, the private sphere/family, and the public sphere. In the earliest medical institutions, civil rights basically did not hold. The state exercised a right to confine those who threatened society or themselves due to their incompetence, illness, and deviance. Once confined, professionals dictated the appropriate treatment and exerted almost complete control over the inmate’s lives. On this basis, Goffman (1961) described institutionalization as a form of ‘‘civil death’’ in which inmates experienced the temporary and possibly permanent loss of civil rights and civil identity. From a relational perspective, the institution exemplified a particular relational structure that distributed power almost completely to an authority structure and provided few if any opportunities for democracy or choice among the inmates. The state supported the confinement of an inmate through the adjudication process and gave legitimacy to the authority structure. As journalists such as Geraldo Rivera and photographers such as Irving Haberman exposed the brutalities of institutional life, embarrassing both the medical profession and the government-funding institutions, the idea of ‘‘patient rights,’’ the rights to be accorded to someone under care and supervision, gained support. For example, the Developmental Disabilities Assistance and Bill of Rights Act (2000) established rights for those in residential and service settings to be free from abuse, neglect, and exploitation; to be free from the use of physical restraints and seclusion except when ‘‘absolutely necessary to ensure the immediate physical safety of the individual and others’’; and to be free from the use of chemicals as a substitute for habilitation programs. Federal regulations protected institutionalized and vulnerable populations from harmful scientific experimentation. In Youngberg v. Romeo (1982), the Supreme Court found that institutional residents had a right to ‘‘minimally adequate treatment or reasonable training to ensure safety and freedom from undue restraint.’’ The establishment of patients’ rights attempted to provide patients with sufficient power to ensure their basic care and safety while maintaining an asymmetry of power and social control over the patient. Even with the establishment of patient’s rights, basic civil rights, such as rights to sexual privacy and to contract, usually remained void in institutional settings. Many contemporary residential services retain some element of the relational expectations of the institution, most notably asymmetry in power. Disability-specific settings, including special education, nursing homes, group homes, segregated workshops, and day facilities, typically endorse a rhetoric of rights, yet simultaneously restrict rights formally and informally

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due to state demands for accountability, limited funding, liability issues, professional views of the ‘‘best interests’’ of people with disabilities, and professional concerns related to their working conditions, prestige, and income (Drinkwater, 2005; Yates, 2005). The power structure typically allows staff members to make key decisions while residents are provided with little direct input into the structure of their daily lives. Within this context, it may be difficult or even meaningless to assert one’s rights. One may assert a ‘‘right’’ to be in the community or to participate in one’s preferred religion, yet in response may be told about waitlists, short staffing, and other organizational reasons that prevent the fulfillment of one’s ‘‘right.’’ When the support system fails to support them, consumers are left with little opportunity to exercise their rights. Recent Pennsylvania data (Feinstein, Levine, Lemanowicz, & McLaughlin, 2005) provide a glimpse into the current situation. In 2003–2004, 65% of adults receiving residential services through the state’s Office of Mental Retardation reported that they had no input regarding where they lived, and of those who said they had input, the majority (66%) visited no potential living situations other than their current residence; three-quarters (76%) of the respondents did not choose their housemates. Only 31% had a key or a way to independently enter their residence. Almost half (45%) of the survey respondents reported having no input in how they spent their day, regardless of whether they were employed or went to a ‘‘day activity’’ program. In Pennsylvania, like many states, the receipt of services largely requires one to forfeit the right to select one’s own housing, roommates, staff, daily activities, and schedule (O’Brien, 1994; Racino, Taylor, Walker, & O’Connor, 1993). One lives in the ‘‘community’’ but with no independent access to the community, nor even a key to one’s own house. Of course, some services exist which stress individualized support and empowerment; the point here is not to criticize all such settings, but rather to point out that the relational expectations embedded within a setting have an impact on access to rights. To the extent that people with intellectual disabilities live and work in professionalized settings that operate with an asymmetry of power and balance consumer rights against organizational demands, the effectiveness of rights for this population is diminished. Families offer a particularly interesting type of relational setting to analyze. The family is typically seen as a ‘‘private’’ entity, outside the realm of government intervention, contracts, and civil rights. Because family relationships are not treated as standard contract relationships, civil rights claims seems largely nonsensical within this context (Okin, 1989). The behavior of family members is supposed to be guided by altruism rather

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than legal enforcement, and family members are supposed to work as a collective team rather than as individual units. Indeed, turning to formal legal channels is usually taken to be a sign of the demise or dysfunction of a family, rather than part of its standard operation. A person typically would not and could not use the ADA to demand that his/her family make their home accessible or that they provide accessible transportation or equal opportunities within the household. A person with a disability typically would not use civil rights to demand, as one might of residential staff, that family provide supports in voting, identify community-based activities, or assist the disabled family member in attending a preferred place of worship. As an entity largely outside government monitoring and enforcement, the family has tremendous leeway to shape access to rights. Particularly for individuals who require extensive care and support, the assistance provided by the family (or lack thereof) may structure one’s access to all areas of one’s life, including recreation, intimate relationships, education, work, and so on. As a ‘‘private’’ entity, the family can effectively deny access to a large body of rights without individual recourse to the state. Even in the public sphere, where civil rights should have the greatest impact, rights are negotiated and dependent on relational power. Recent studies of the ADA showcase the way in which context, relationship, and power mediates the use of rights in employment and public settings (Campbell, 2005; Engle & Munger, 2003; Francis & Silvers, 2000; O’Brien, 2004). In 1990, Congress passed the ADA, guaranteeing people with disabilities the right to equal treatment in areas such as employment, transportation, and public services. Yet, rather than offering firm guarantees, the rights granted by the ADA provide a set of resources that potentially can be harnessed by people with disabilities to shape identity, discourse, and interaction. When formal claims are made, it is by no means certain that the right in question will be formally upheld. Moreover, most negotiations over rights occur within informal interpersonal settings without even explicitly referencing, let alone enacting, formal laws or legal processes (Engle & Munger, 2003; O’Brien, 2004). Because rights must be claimed and negotiated, uncertainty looms about one’s actual power to exercise a right. People with intellectual disabilities tend to be inexperienced in asserting themselves as rights-bearers, and people without disabilities may dismiss their status as a rights-bearing citizen. Hence, it may be particularly difficult for people with intellectual disabilities to exercise their rights even within the public sphere. Thus, access to rights is contingent on the relational norms and expectations rooted within a given setting. While an individual in one

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setting may effectively exercise a right, she/he may be denied that right in another setting. Insofar as settings have relational patterns, we can see tendencies in access to rights across settings. For example, persons who live in the community may experience greater access to rights to privacy in reproductive decision-making and to contract than people who live in institutional contexts. Yet, people in institutional and residential settings may have more success claiming rights to treatment. When we discuss the development of rights, we cannot simply say that people with intellectual disabilities have rights or do not; we must consider differential access to rights across settings and the settings in which people with intellectual disabilities tend to exist.

Mediating Relational Power Another common simplification of disability history is to assume that rights always and directly provide a source of power to citizens, so that the increasing number of formal rights granted on-the-books must indicate the growing acceptance, integration, and power of people with intellectual disabilities over time. Whereas it is usually true that the absence of formal rights signifies marginality and powerlessness – indeed, in the absence of formal rights, people with disabilities have been subject to genocide, euthanasia, institutionalization, and brutality against which they held little recourse – the opposite has not always proven to be accurate. Rather, rights embedded within asymmetrical relationships can fail to offer power for marginalized populations and may even create new technologies of power over the marginalized. In the late 1960s, Isaiah Berlin argued that the lack of material resources could undercut an individual’s abilities to effectively use his/her rights. ‘‘It is true that to offer political rights, or safeguards against intervention by the state to men who are half-naked, illiterate, underfed, and diseased is to mock their condition; they need medical help or education before they can understand, or make use of, an increase in freedom y Without adequate conditions for the use of freedom, what is the value of freedom?’’ (Berlin, 1984/[1969], p. 17). In a society with vast differences in power and wealth, equal rights do not guarantee equality of outcome and can, in effect, mask oppression because all people appear to be treated equally, yet in fact have very different levels of opportunity. Berlin’s argument is important to consider in examining the issue of rights for people with intellectual disabilities. When people with intellectual disabilities are given rights, they

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are often not provided with corresponding social supports to make the rights feasible or meaningful. As already discussed, when supports exist, they are often tied to waitlists or bureaucratic limitations and obligations. In addition, there is another more subtle argument about the way in which rights may disempower and mask oppression. Whereas Berlin argued that rights may not be exercised due to a lack of resources, Foucaultian analyses (Foucault, 1979; Titchkosky, 2003; Tremain, 2005) indicate that rights may be structured in ways that enforce social control. In his examination of the transformation of authority, Foucault (1979) suggested that historically authority figures ensured conformity through the use of direct force and brutality, whereas in modern times, conformity is ensured through citizens’ participation in multiple bureaucracies such as education, work, and prison, which serve to mold and rehabilitate the individual in light of the society’s norms. In modern times, power becomes more subtle, impersonal, and invasive, encouraging and demanding citizens internalize society’s goals. The agenda of ‘‘normalization’’ and even integration can be viewed in light of Foucault’s ideas. Rather than true integration that enables people with disabilities to make a meaningful contribution in all areas of life, policy instead tends to promote ‘‘controlled integration,’’ in which rights are offered to people with disabilities based on their perceived potential to contribute. A ‘‘cost-benefit’’ analysis occupies the forefront of thinking about rights for the disabled; how expensive or culturally demanding would an accommodation be? Would the economic benefit of inclusion outweigh the economic and social burdens placed on family, employers, and society? As employment and income-maintenance policies developed, legislators assumed that only some individuals with disabilities would be given a right to employment, whereas others were given a ticket out of the labor force through income-maintenance programs (Bickenbach, 1993). Although many work programs include people with intellectual disabilities, a label of intellectual disability can also lead to a relatively easy ticket out of the labor force because the government is usually quick to categorize people with ‘‘mental retardation’’ as totally and permanently unable to work. Integrated employment for people with intellectual disabilities is often viewed by the government as cost inefficient and therefore not a priority. Insofar as the government has supported ‘‘integration,’’ it has often come in the form of segregation or highly supervised settings, so that the rights to education or work actually place people with intellectual disabilities under professional supervision. Employment becomes a form of ‘‘treatment’’ or

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day programming used to meet the needs of service providers rather than an economically meaningful endeavor for the person with an intellectual disability. Although participation in such settings may have value, it places people with intellectual disabilities in environments that encourage and often demand conformity to the rules and expectations of society (Drinkwater, 2005; Simons & Masschelen, 2005). Obviously, not all rights could be so conveniently structured; the rights to vote and to privacy in reproductive decision-making, for example, provide little opportunity to regulate people with disabilities as they exercise these rights. Moreover, these rights are often seen as ‘‘costly’’ to society, precisely because their use cannot be effectively monitored and controlled. Rights to privacy, sexual activity, and procreation in particular are likely to be perceived as creating an addition burden on family and society. When the costs seem to outweigh the contributory merit, the ‘‘right’’ to procreation is often denied to people with intellectual disabilities. Few residential programs provide services to families; few support programs exist for parents with disabilities; and the parental rights of people with intellectual disabilities are still often questioned. Rights offered to this population are not always even treated legally as rights, but rather as ‘‘symbolic’’ gestures to encourage integration. For example, in Pennhurst State School and Hospital v. Halderman (1981) stated that the Developmental Disabilities Assistance and Bill of Rights Act (2000), which guarantees all persons with development disabilities the right to appropriate treatment in the least restrictive setting, ‘‘does no more than express a congressional preference for certain kinds of treatment.’’ In essence, they found that the Bill of Rights offered a symbolic preference but not a ‘‘real’’ set of rights that would be enforced by the government. Controlled integration (Carey, 2009) allows legislators to promise equality, yet hold this promise on the end of a long stick. Integration becomes a reward for contribution and attaining ‘‘normality,’’ afforded to those who best overcome their disability and participate in mainstream society in typical ways (Titchkosky, 2003). Access to supervised settings is provided to those who are considered unsuccessful in attaining normality. As Striker (1999, p. 152) stated, ‘‘the disabled person is integrated only when disability is erased’’ or at least effectively controlled. Outside of the SelfAdvocacy and Disability Rights Movements, the idea of disability rights is rarely tied to the traditional notions of autonomy or self-determination for this population. According to Drinkwater (2005, p. 241), while our rhetoric valorizes inclusion, ‘‘autonomy escapes analysis.’’ Supervised participation, dependent on one’s efforts toward ‘‘normality,’’ is cast as ‘‘rights,’’ but these

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rights fail to offer people with intellectual disabilities the power to change the patterns of relational power and expectations.

CONCLUSION This chapter argues for the importance of a relational approach to understand the development and contemporary application of civil rights for people with intellectual disabilities. Although there has been much discussion and analysis of rights for this population, we have been lacking a general paradigm to guide our analysis. The traditional paradigm that views rights as individual possessions granted based on individual abilities cannot explain transformations through time nor the differential application of rights by setting. A relational paradigm, on the contrary hand, conceptualizes rights as a dynamic form of power, exercised in particular relationships and settings, and thereby expects and explains variations in formal and informal access to rights as they occur through time and setting. A relational approach brings to the fore the history of relational visions, as we struggle to determine how and whether to include various people within American citizenship and society. Rights create relational demands and expectations; they give power to some to affect the lives of others, and therefore, various groups have different visions for what relational expectations, obligations, and changes are appropriate and desirable. Much of variation in vision is tied to the creator’s own place in society and their direct relationship with intellectual disability. Because rights are relational, we must also consider the broader stratification system. We find surprising and often unintended interconnections among groups as they struggle for inclusion and rights. Rights restrictions for people with intellectual disabilities have been used as a way to control other populations like sexually deviant women and immigrants, but at times, intense concerns about other minority populations actually diverted negative attention away from this population. Whereas advances for one group did not necessarily lead to advances for other groups, movement in the rights of one group often affected other groups. We too see the complexity of rights as they emerged within relational settings. People with the same IQ may have had very different access to rights depending on the settings in which they exist. A person may move among settings and have his/her rights transformed as the settings change. Because of the impact of relationship and setting, it is often unclear if people with intellectual disabilities have a right that would be upheld either

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informally or formally. For this population, rights have not offered the power traditionally assumed to flow from rights. In fact, civil rights were and still are often structured to reinforce supervision and professional control, rather than to enhance self-direction and relational power. People with intellectual disabilities were offered ‘‘rights’’ to segregated, regulated activities and denied empowered integration into society. Much work lies ahead of us as we examine the historical development of particular rights and specific movements related to intellectual disability. As we move forward, a relational framework provides a set of analytic tools useful in examining this history across time and place and in situating their history alongside and interconnected with the histories of other populations. A relational approach also encourages us to consider how the relational structure affects integration and therefore how we might move toward greater equality and integration for people with disabilities and all citizens. Civil rights movements, although critical of liberalism, tend to accept and use a rhetoric of autonomy. Yet, the pursuit of autonomy impedes our ability to achieve social justice. Fundamentally social justice requires the creation of relational expectations that prioritize inclusion, participation, empowerment, and a recognition of diverse human needs. We must create and at times impose such expectations. As a society, we need to discuss and debate why and how particular needs should be met, in a world where everyone has needs, realizing that perhaps not all needs can be met. America embraces the concept of individuality and typically avoids the creation of social obligations; however, inclusion, respect, and meaningful participation, the ultimate goals of contemporary rights movements, are necessarily relational concepts and can only be achieved through reimagining the ways in which people relate to each other within society.

NOTES 1. In this work, ‘‘intellectual disability’’ refers to a label which identifies someone as having a level of intelligence significantly lower than average, affecting one’s ability to meet the cultural and social expectations of one’s contemporaries. I treat this idea as a social construction and a contested category, rather than a ‘‘condition’’ inherent in a person’s biological or mental makeup. This does not preclude the possibility of a biological basis for this disability, but suggests that labels shift in meaning through time and social context such that there is no clear demarcation between those considered to have normal intelligence versus those considered to have intellectual disabilities (Bogdan & Taylor, 1976; Noll & Trent, 2004).

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2. Talcott Parsons’ (1951) concept of sick role theorizes that asymmetry of power is functional. According to Parsons, physicians must have sufficient power to impose potentially painful and uncomfortable treatments on sick individuals who otherwise might not pursue their best interests and society’s best interest by improving their health. I, on the contrary, stress the dysfunction of such asymmetry. 3. Of course, many other groups also perceived rights restrictions against the ‘‘feebleminded’’ as in their best interests as well as society’s best interests, including elites and women’s. Scholarship including Davis (1983), Gordon (1974), Rafter (1992), and Skocpol (1992) examine eugenics within the feminist movements. Black (2003), Kevles (1985), and Scott (2005) offer analyses of elite interests in eugenics. 4. Later, some Southern states would dramatically expand their institutional and sterilization programs, so that in the 1950s, North Carolina would actually develop the most active sterilization program in the nation.

ACKNOWLEDGMENTS I thank Blyden B. Potts, Carol A. Marfisi, and the reviewers and editors of Research in Social Science and Disability for their feedback regarding this manuscript.

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FROM ‘‘SURVIVAL OF THE FITTEST’’ TO ‘‘FITNESS FOR ALL’’ TO ‘‘WHO DEFINES FITNESS ANYWAY?’’: 100 YEARS OF (US) SOCIOLOGICAL THEORY ON DISABILITY Corinne Kirchner INTRODUCTION A forward thrust drives the theoretical narrative of disability-in-society, as told by scholars of recent decades. Consider these titles (with emphases added): From Stigma to Identity Politics: Political Activism among the Physically Disabled and Former Mental Patients by Anspach (1979); From Good Will to Civil Rights by Scotch (1984); Moving Disability Beyond Stigma a collection edited by Asch and Fine (1988); The Disability Rights Movement: From Charity to Confrontation by Fleischer and Zames (2001). Each title is like a revved-up engine. Together, they convey a message of forward movement in the status of people with disabilities. The road they all travel starts from a negative starting point and ends at a clear and a more desirable, if not yet perfect, destination. The starting point is the

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subordinated and powerless status of persons with disabilities – a status based on stigma wrapped in pity. The destination: empowerment. These analyses focus on the United States; their authors, while not all sociologists, are close enough for our purpose. The road they all cover starts (chronologically speaking) around the 1940s, and extends – in the case of the earliest – up to the late 1970s; two others cover up to the mid- and late 1980s; and the last one, to the current century. While researching this chapter, I had chosen a tentative title: ‘‘From ‘Survival of the Fittest’ to ‘Fitness for All.’ ’’ (Followed by the necessary colon and dull explanation of what it really is about, i.e., 100 years of sociological theory on disability.) Only later did I recognize how much that title mimicked titles of the works just listed, even though my study covers a longer historical period and has a correspondingly even more negative starting point. My analytic road starts around 1900 and extends to a work published this year (2005). I had liked the initial title because it was catchy and also captured well the main analytic thread I would be using. The key phrases, using ‘‘fitness’’ (physical, mental) as their common subject, and exclusion versus inclusion as the contrasting societal objective, seemed to bracket the 100-year period quite effectively. But not so fast! As it turns out, the most current theoretical work under review here is also the one I most recently encountered. It is a collection of theoretical papers (Tremain, 2005) that apply Foucauldian theory to disability and create at least a major detour in the direction of theorizing (to continue the motoring metaphor). It is too early to tell whether the detour will become a lasting bend in the road of seeming progress. But it became clear to me that I must modify my analysis, and correspondingly, the chapter’s title. Thus, I have added a phrase (‘‘Who defines ‘fitness,’ anyway?’’) which puts into question not only the terms used by theorists, but more fundamentally, the optimistic evaluation that many theorists have drawn from their observation of social change concerning disability phenomena. Maybe, in fact, the road has been subtly curving back. Maybe we are not nearly so far from where we started as the length of the journey may have tricked us into thinking.

AIMS AND BOUNDARIES OF THIS CHAPTER My task was to prepare a chapter conveying the sum and substance of sociological theory on disability over the 100 years since the founding of the American Sociological Association (ASA). One could, I suppose, view that

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definition of the task as narrowing a potentially much more overwhelming one, by placing boundaries of three types. First, the time frame. After all, it is only 100 years. Relevant theorizing dates farther back. For example, according to Bernard (1941), the first book with the word ‘‘sociology’’ in its title, authored by a Henry Hughes, and published in Philadelphia in 1854, contained pertinent and pithy observations. Hughes pronounced that ‘‘members of society are divided into two [economic] classes:y ‘the efficients’ and ‘the inefficients.’’’ The latter: y do not work. They are disabled. This disability may be accidental or essential; temporary or permanent. Inefficients are those disabled by youth, age, sickness, infirmity of mind, bodily hurt or deformity and absolute want of work. [Also, added later, they include] y imbeciles and dotards. (Hughes, 1854, quoted in Bernard, 1941, p. 376)

I can’t discern any event or publication that defines 1905 or even the decade of the 1900s as a turning point in this theoretical domain. So although that is my assigned starting point, I will take it only as a very general one. Indeed, it seems necessary to dip back somewhat earlier to understand the dominant theorizing in that period. Second, my task could be viewed as narrowed by academic discipline: After all, I need review only sociologists. Presumably, I can just skip over the many theorists from other social sciences, philosophy, and other humanities, who have addressed more or less directly, the issue of disability in society. But can I really? Aside from the practical problem that even by 1905, sociology was still new and indistinct enough that the ASA was formed at a meeting of the American Economic Association, there continues to be great difficulty disentangling the disciplinary threads bearing on disability. One might say that is true of any ‘‘applied’’ area of study. To illustrate: A landmark work from 1970, whose sole author seemed to have a problem pigeon-holing her own disciplinary identity, avoided the problem by titling her work: The Sociology and Social Psychology of Disability and Rehabilitation (Safilios-Rothschild, 1970). Varied disciplines have made contributions that cannot be completely disentangled from the work of sociologists. That is illustrated in three compilations that I also consider landmark works. Each volume can be seen as a melting pot of disability theory in which sociology is distinguishable but certainly does not dominate. Those important compilations are (1) the already-cited Moving Disability beyond Stigma (Asch & Fine, 1988) a special issue of the Journal of Social Issues (JSI), in which 4 of the 14 authors self-identified as sociologists (others came from anthropology, political science, social psychology, psychology, and special education); (2) The Handbook of Disability Studies

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(Albrecht, Seelman, & Bury, 2001) in which about 12 of 49 authors selfidentified as sociologists; and (3) Foucault and the Government of Disability (Tremain, 2005) in which only 4 out of 20 authors identified as sociologists; most of the others as philosophers. So while I certainly concentrate here on the work of sociologists, I have covered some authors who are not sociologists, but came to my attention because their work appeared in sociology journals. Third, my scope is narrowed nationally, since the stimulus of ASA’s founding suggests a focus on American sociology. As you probably have by now anticipated, like the 100-year time frame and the aim to feature sociologists, this focus on Americans turns out to be a porous fence to put around the relevant material. Much of the important work that is being used by American sociologists comes from other countries (the reverse is also true). American sociologists throughout the period under study have either drawn upon or contended with much work that originated in England. That applies especially in the earliest and most recent segments of the longer period. Also, considering just the English-speaking countries, in the recent period, Canadian and Australian theorists are found in journals and compendiums alongside the Americans. Thus, on reflection, the factors that might help to narrow my task turn out to be anything but confining. Truth to tell, the breadth of the task is quite intimidating. With that said, I’ll set forth bravely to give you some substance, leaving for an addendum the important business of clarifying how I went about selecting and reviewing the literature, and stating the limitations I know about, so that you can add the ones I don’t know about. Were I to include that up front, it could easily use more than the allotted space.

THREE PERIODS AND THEIR ‘‘TERMS OF DEBATE’’ This review was stimulated by a chronological marker: 100 years of ASA. So, although such markers are always arbitrary (‘‘socially constructed’’), I will follow the chronological approach within that span as the main organizing framework. That is with the understanding that each period contains multiple theoretical threads whose dominance doesn’t neatly fluctuate with the specified years, and there are relevant ‘‘subperiods.’’ I refer to ‘‘The Terms of the Debate’’ in order to focus on the theorizing that dominated that period. However, I recognize that it is neither possible nor desirable to completely separate the theorizing from the events affecting

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people with disabilities in that time period. It is also relevant (Foucauldian analysts might say it is most important) to consider what events were affecting sociologists who were doing the theorizing during each period, and I will touch on that. Here are the periods I propose, and the key terms of debate characteristic of each: 1. 1900s through 1930s: Terms of Debate: Segregation and Survival 2. 1940s through 1960s: Terms of Debate: Rehabilitation and Remedies 3. 1970s to date: Terms of Debate: Civil Rights, Cultural Claims, and the Politics of Statistics. The key questions I posed to myself as I reviewed materials from and about each period were these: A. Were there any theoretical works that explicitly addressed people with disabilities, whatever terminology was used to refer to issues we would today attribute to that term? If not ‘‘disability,’’ what terms were used, with what connotations that differ from today’s? B. When people with disabilities were discussed, who was grouped together, based on what characteristics? To what extent were people with disabilities considered as a ‘‘social group,’’ rather than as aggregated based on shared characteristics?

1900s through 1930s. Terms of Debate: Segregation and Survival Considering the years around ASA’s founding, one might conclude there simply was no sociological theory focusing on disability; my library searches, and searches of indexes of early tomes, produced nothing using those terms for that period. Conversely, one might conclude, more correctly, that disability actually permeated the grand theories of the period, using different terminology. Social Darwinism, as propounded mainly by Herbert Spencer (1820–1903) in Britain, dominated theorizing about societies-at-large. Biological analogies were ascendant (Spencer’s works included treatises on both The Principles of Biology and The Principles of Sociology, Turner, 2000), not only as applied to societies as units of analysis, but also to the qualities of major social categories of people within societies. Spencer coined the term ‘‘survival of the fittest,’’ referring to societies, not individuals, in support of laissez-faire government, but his ideas and terms were picked up and in effect publicized by ‘‘well-known geneticists’’

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(Turner, 2000, p. 89). Turner (2000) calls that development ‘‘tragic,’’ because in his view it accounts for Spencer’s undeserved virtual absence from current study of influential founding theorists. Turner shows that Spencer’s work greatly influenced Durkheim, and through him, the whole structural-functional paradigm that dominated American sociology through at least the 1960s; indirectly, in that way, influencing the thinking of many of us (Turner, 2000; Bynder & New, 1976). The eugenicist implications of Social Darwinism were appearing in the US social policy of the period. Braddock and Parish’s ‘‘institutional history of disability’’ (2001) reports that by 1912 many states prevented marriage of persons under age 45 who were diagnosed with mental disabilities or epilepsy, and that sterilization of institutional residents with intellectual disabilities was ‘‘commonplace’’ in that period. How did sociological theorists deal with the implications of ‘‘survival of the fittest’’ for individuals? My impression is that eugenicists effectively set the terms of the debate for sociologists well into the 1930s, whether the latter were tackling grand theory at the macro-societal level or addressing ‘‘applied sociology.’’ The topic was virtually unavoidable because basic sociological issues of poverty and crime were seen as intimately bound up with deviant physical capabilities and mental/emotional behaviors. Because ‘‘social progress’’ was the basic theme and rationale of sociological theorizing, its flip side, ‘‘degeneration’’ was a pervasive concern. ‘‘Degeneration’’ and ‘‘the unfit’’ were key terms I found in use for discussion of people with disabilities, both terms encompassing the much broader category of moral degeneracy. But while the terms were set by eugenics and other biological selection theories, the sociological response seems to have been dismissive of the eugenicists’ arguments, sometimes energetically opposed, sometimes only tentatively. Let me give some extended quotes. First, from a 1918 book by a professor of sociology (Todd, Theories of Social Progress) ambitiously proposing to summarize and evaluate the ‘‘most important contributions of English, American and Continental writers’’ (p. vii). First, the rationale: ‘‘From Comte onward sociologists have pretty generally agreed that the only justification for a Science of Society is its contributions to a workable theory of progress.’’ In the major section of his book devoted to biological theories of progress, Todd devotes a chapter to the ‘‘Eugenists.’’ Todd offers to demolish the premises and conclusions of eugenics; here are a few tidbits of his argument: By all odds eugenics is the most popular phase of the selection question under discussion in this generation (p. 257). It is to be devoutly hoped that a science to guide social

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selection may be developed. But whether eugenics meets that need does not by any means yet appear (p. 258). After all will mere extinction of the known defectives touch the core of the eugenics problem? Not at all y . The defectives who would thus be eugenically exiled, so to speak, constitute but a tiny fraction of society, only one-half of one per cent y . What of the nearly ninety-nine percent of merely average normal people? Most of them, if we judge by income and ownership of property, are weak and not very solid timber for a sound society. Are we a degenerate lot?.y (E)vidence [is] that not physical but social heredity is responsible for degeneration among civilized peoples (pp. 262–263; emphasis added). The wiser among the eugenists reject utterly all notions of external compulsion y segregation or sterilization of the unfit y may be excellent when wisely applied, [but] mischievous and ridiculous in the hands of fanatics. (pp. 266–267)

Todd refers admiringly to a paper by Lester Ward (first president of ASA, and interestingly, holder of a medical degree [Bloom, 2002])1 that proposed the likelihood that capacities for ‘‘genius’’ are widely dispersed in the population, but pervasive positive social conditions would be needed to bring them out (pp. 269–270). Todd concludes that the best way to bring about the goals of eugenics is to improve social conditions generally. The next quote comes from an extended entry on ‘‘Degeneration’’ in the Encyclopedia of the Social Sciences (1931) written by Frank Hankins, 28th President of ASA: After considering seriously the arguments of ‘‘Aryanism, Nordicism, and Eugenics’’ that there is ‘‘present degeneration of racial quality among western nations y,’’ the author concludes that there may be ‘‘y some decline in the average vitality of the population, due to adaptation to easier conditions of existence. It is not impossible that a rich and humane civilization may permit the undue multiplication of defective and parasitic types ill adapted to more primitive societies.’’ That is actually the end of the entry, and leaves one wondering about the implications – should we return to primitivism as a means to avoid degeneration? Given that the Nazi period was just emerging, it is interesting to learn from the ASA website that Hankins could be considered a socio-biologist who believed in birth control, more for the ‘‘lower classes,’’ and less for the ‘‘privileged classes.’’ However, he is said there to have ‘‘denounced racist policies and believed that racially mixed populations were physically and socially beneficial’’ (ASA Website, 2005). One more example drawn from early American sociology’s leading theorists: Pitirim Sorokin (chaired Harvard’s department of sociology), in his Contemporary Sociological Theories of 1928, gave serious attention to the ‘‘bio-organismic school of society,’’ referring to Spencer, but concluded that concepts of ‘‘more’’ or ‘‘less perfect’’ societies is ‘‘nonscientific.’’ Similarly, Sorokin reviewed empirical studies by Galton and others on inheritance of ‘‘pathological conditions,’’ e.g., deaf-mutism and insanity,

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and inheritance of character traits. He generally put these down as unscientific, vehemently rejecting the aim of producing ‘‘superior races’’ (as he points out, always ‘‘one’s own’’), but he does consider as more scientific the studies of social selection from ‘‘better [or worse] stocks’’ that might correlate with overall societal ‘‘progress or decay.’’ In sum, I venture that dominant social theorists of the early 20th century were made queasy by the coercive implications of eugenics-based policies. Nevertheless, they were inevitably drawn in to dealing, somehow, with the ‘‘fit versus unfit’’ classification of individuals, as a correlate of the reliance on biological models and an underlying belief in studying society for the aim of societal progress. The above deals with the ‘‘survival’’ aspect of the issue. What of the ‘‘segregation’’ aspect? Braddock and Parish (2001) document the importance of institutionalization of people with mental or emotional disabilities in the late 19th and early 20th centuries. In the same period, schools for blind children and for deaf children were founded in the United States (following pioneers in France and England). The optimism brought by educators to the possibilities of educating such children, and the wider optimism of the mental hygiene movement that sought to achieve goals of humaneness and productivity among people with ‘‘defects’’ long believed to prohibit such aims, was not, so far as my research turned up, led or enhanced by sociologists. While it is possible that this seeming gap reflects a lack in my research, I will argue that it is consistent with the tendency in that period, for sociologists to start their analyses by defining the ‘‘unfit’’ very broadly and categorically. Typically, the ‘‘unfit’’ included people with no apparent physical or mental impairments who were in extreme poverty and/or engaged in ‘‘immoral’’ (criminal or otherwise deviant) behavior, along with those who had physical impairments. The former (the ‘‘immoral’’) were considered both the largest portion, and it seemed more possible for social factors to affect their ‘‘unfitness.’’ They thus received the most attention in terms of theorizing what societal structures and policies would improve their behavior and ameliorate their situations. The latter, especially those with physical impairments, but also those with intellectual or mental/emotional impairments, were seen as either in the purview of medical attention, or best provided with charitable economic assistance, since their incapacity was not ‘‘their fault.’’ Todd (1918) refers to Ward’s enthusiasm for education as a vehicle for societal progress, but he points out that education per se can be either a positive or negative force, depending on its content and its availability to all

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classes. Todd then gives this ‘‘throw-away’’ comment on what was then emerging attention to health in educational undertakings (which I take to refer to the specialized schools and other institutions). ‘‘This health thought expresses itself in the care for mental and physical misfits – the truant, incorrigible, unstable and inept – as well as the downright defectives’’ (pp. 527–528). He quickly leaves that topic and moves on to a lengthy and impassioned analysis of the societal progress possible resulting from the proper type of ‘‘social education’’ for all others (i.e., the ‘‘downright nondefectives?’’).

1940s through 1960s: Terms of Debate: Rehabilitation and Remedies2 America’s entrance into WWII affected its sociological establishment in many ways, but among the most relevant for this chapter was the growth in medical and postmedical rehabilitation activities on behalf of returning veterans (Bloom, 2002; Meyerson, 1988; Wessen, 1965). Although Bloom (2002) highlights the period between WWI and WWII as fostering much of the intellectual foundation for modern medical sociology, he attributes an important theme in the growth of medical sociology – hospitals as therapeutic (or not) environments – to research opportunities opened up by post-WWII medical services. At this point, I will raise the question of how work on sociology of disability relates to development of medical sociology, the two being roughly coterminous. I would summarize that relationship as ranging from ‘‘uneasy’’ to ‘‘barely-existent.’’ Bryan Turner (2001) and Gareth Williams (2001) come to a similar conclusion, but it might be a surprising conclusion to some disability scholars, who assume there is a strong relationship. Many in disability studies are aware of the leading role that was played by Irving Zola, a respected medical sociologist, both in theorizing and organizing around disability studies, and by several other leaders who came out of medical sociology (Gary Albrecht, Barbara Altmann, Sharon Barnartt). Maybe the operative term here is ‘‘came out of,’’ since most of the disability scholarship by those medical sociologists was developed in other professional settings. In any case, their work has apparently left few traces in their source discipline. I judge that from the lack of references to any of the just-named scholars or to the topics of ‘‘disability,’’ ‘‘impairment,’’ or ‘‘rehabilitation’’ in the index to Bloom’s otherwise detailed history of medical sociology. I will come back to that point later,

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but bring it up here because I must introduce one very big exception to the lack of disability scholarship in medical sociology. The arena of chronic ‘‘mental disorder’’ (or ‘‘mental illness,’’ ‘‘psychiatric disorder,’’ to use terms common in medical sociology) has been a major avenue of development in medical sociology. Bloom goes so far as to credit the National Institute of Mental Health, created in 1946, as the single most important influence on the ‘‘emergence of medical sociology as we know it’’ (p. 156). Research in mental illness – including conceptual and theoretical lines of inquiry dealing with the nature and consequences of stigma, labeling, and discrimination, and the damaging effects of institutional social structures – has been pursued within medical sociology, but with virtually no interchange with similar work in other areas of disability studies. One can speculate on reasons for that disconnect, but the net result is that I will pursue the rest of this discussion without further tracking of the mental illness work done under the aegis of medical sociology. Returning to the chronology, I will just mention here a publication from 1948, whose significance will be substantiated in the next (post-1970s) section, in connection with a 40-years-later compilation created in its honor (Asch & Fine, 1988). Meyerson, reflecting in 1988, attributed the genesis of the 1948 groundbreaking social psychological research on disability, to a request from the Committee on Social Adjustment of the Social Science Research Council. That Committee had sought a review of research on ‘‘adjustment to physical handicap,’’ sparked largely by the needs of returning veterans. One of the innovations by the original authors (Roger Barker, Beatrice Wright, and others) that had lasting impact was to detect the ‘‘parallels between the situation of people with disabilities and the situations of deprived minority groups’’ (Meyerson, 1988). Also in 1948, an article appeared in a sociological venue introducing a voice, and his set of ideas, that was highly influential in setting the ‘‘terms of debate’’ for the whole era under study. Howard Rusk, a physician, effectively promoted the field of medical rehabilitation, modeling a multidisciplinary approach to helping people with physical disabilities ‘‘restore themselves as useful citizens,’’ (p. 44) with facilities dedicated to the rehabilitation process. In the pages of the Journal of Educational Sociology, he (with coauthor Eugene Taylor) used the example of public concern for veterans to make a plea for a less popular cause: he cited data to show that there were much larger number of civilians with disabilities, including school children who should and could benefit from rehabilitation which, he notes, has been shown by the federal Office of Vocational Rehabilitation, to pay off economically (Rusk & Taylor, 1948). Rusk calls for social research on

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the ‘‘economic, social and personal factors in physical disability,’’ and for training of more people in the various relevant professions to meet the need. But he also calls on educational sociologists to help create a future in which public attitudes will not be a barrier. Specifically, he says: A place must be made for study and discussion of the handicapped both from the standpoint of the individual handicapped person and from the standpoint of the disabled as an economic, social, and political group. We inculcate students with the principles of common courtesy and common sense in their relations with minority groups. We study and discuss economic, social and political factors affecting such minority groups, but the greatest minority group of all, the physically handicapped, have been forgotten in the classroom except for college courses in social disorganization.’’ (p. 48, Emphasis added)

Again, time requires limiting the details of this rather remarkable, for its time and source, statement of a theoretical stance on the nature and solutions for the social role problems of people with disabilities. Suffice it to say that Rusk went on to discuss how to remove the public ‘‘stigma’’ (his term) of disability and assistive technology, comparing the process of habituation to the general public’s then-growing acceptance of eyeglasses. Rusk was certainly influential on bringing about what was, at least potentially, the most significant publication in sociological theorizing that was specifically devoted to the issues of physical disability and rehabilitation. That was the now-classic (but also elusive) publication, Sociology and Rehabilitation (Sussman, 1965) based on a conference that was cosponsored by the federal Office of Vocational Rehabilitation and the ASA. A prestigious (even then) set of sociologists was enlisted for this endeavor, a high proportion of whom probably still have name-recognition in their specialty areas. Sussman’s preface makes clear that they were chosen for past achievements in both empirical research and social theory. He states that the objectives included ‘‘to assess [usefulness of] sociological theories specific to rehabilitation as well as external to medical sociology,’’ but also to ‘‘take the concern of sociologists y into account: Namely, is it possible from studies of rehabilitation as a process and as an institution to facilitate the development of sociology as a science?’’ Sussman illustrated the nonmedical sociological conceptualizations that were brought to bear on rehabilitation as coming from ‘‘intergroup relations, deviance, sociology of occupations, and socialization’’ (Sussman, 1965, pp. iii–iv). I would add to those: social movements, sociology of organizations, and stereotyping, among others. Given that the convener was a federal agency accountable to Congress for a clearly defined agenda, it seems rather remarkable that the organizers seriously sought theoretical analysis, and particularly from people who had

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not previously worked in this field. Whether part of the plan or not, one consequence of having outsiders was that they were less constrained than otherwise to reach conclusions (or, more precisely, hypotheses for potential future research) that could be considered threatening to the professionals operating the system. And they certainly did so, mainly through applications of ‘‘labeling’’ or ‘‘societal reaction theory.’’ Selecting from different analysts, here are some examples: (a) Scheff (1965) observed that rehabilitation counselors or administrators use ‘‘diagnostic stereotypes’’ (or ‘‘typification’’) to label individuals, building case records that support the stereotypes and avoiding information that might not fit; (b) Scott drew from his study of blindness agencies to illustrate agency rehabilitation practices that operate as a socialization process and create as a ‘‘product y a dependent, helpless person who, because of his trained incapacity, requires the sheltered protection of agencies and asylums [in this case] for the blind’’ (Scott, 1965, p. 138); (c) Freidson (1965) described the latent function of rehabilitation agencies’ setting of eligibility criteria and outreach practices, as designed to expand the need for their services, by typically broadening over time the definition of who fits the criteria of need – i.e., the ‘‘rate-producing process’’ (Kitsuse and Cicourel, cited in Freidson 1965, p. 83). (d) Wessen’s (1965) organizational analysis (he notes the paucity of sociologists’ attention to the field) develops the argument for ‘‘rehabilitation as a social movement’’ in relation to the medical profession with which it must regularly deal. ‘‘In a sense, rehabilitation may be said to have been made necessary because of the failures of prior institutions y the family, the school, medical practice’’ (p. 153). Wessen’s analysis would not have been as threatening as the previous examples to rehabilitation workers’ professional self-image, but it could potentially have been threatening to their collegial relations in the work-setting. With the exception of Gritzer and Arluke’s (1985) analysis of the emergence of medical rehabilitation, I haven’t seen any attention to the early social movement aspects of rehabilitation, and I have long thought that it would be fascinating to trace the social processes in the transformation from that phase of rehabilitation to its later situation as the establishment against which the social movement of clients defines itself.3 But research ideas like the topic just suggested, or any number of other studies that were more or less explicitly called for in the 1965 volume have, as far as I can tell, died on the vine. For one thing, except for the few authors who had already been working in the rehabilitation arena, notably Saad Nagi, it does not seem that the others carried any sparks ignited at the conference back into their ongoing careers. Eliot Freidson’s chapter,

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‘‘Disability as Social Deviance,’’ was widely cited in the early stages of academic ‘‘disability studies’’ (at least I used it!), but he did not develop the many directions he could have taken it. I have noted that Sam Bloom made no mention of disability and rehabilitation research in his history of medical sociology; it is interesting to note therefore that not only was Bloom present at the 1965 conference, but he had a paper published in the volume. (Not all of the 40 or so attendees, who included several prior or subsequent ASA presidents who were general theorists – Howard Becker, Robert Bierstedt, Kai Erikson, Amitai Etzioni, William Goode, among others – did prepare papers.) Is it possible that the authors quickly outlived their welcome by their hard-hitting analyses? Or was it simply that no sparks really were ignited? Perhaps they brought their conceptual gifts, so to speak, to the party, but did not find there the proffered exchange of ways that rehabilitation research – not to mention disability research – could advance their future work in ‘‘the science of society.’’ In terms of continuities – or more precisely, discontinuities – about 10 years later when Gary Albrecht (1976) put forward the next significant compilation for the field, The Sociology of Physical Disability and Rehabilitation, only 1 of its 11 chapters was authored by someone who had participated in the 1965 book – Marvin Sussman (1976). Before leaving the topic of what I have perhaps too lightly referred to as ‘‘the party,’’ there is an obvious question to raise about someone who stands out by his non-presence at the event. Why was Erving Goffman, who had by then published two of the arguably most influential works in disability theory: Asylums, 1961 and Stigma, 1963 – not there? The other authors, especially Freidson, were certainly aware of those works and cited them. If I were to pursue this intellectual history, I would try to track down the initial invitation list. I speculate that Goffman had been invited but declined to attend. Although Goffman did eventually become president of ASA (1982, the year he died), he has been described as an ‘‘unusually reticent man’’ (Fine & Smith, 2000). By way of interim summary: the main thrust of theorizing about disability, which was emerging as a focus in the late 1960s, was ‘‘labeling’’ theory, imported from broader social research on deviance, and particularly from applied work in criminology. Goffman’s study in an institution for mentally ill people (Asylums) provided an analysis of intense (‘‘total institution’’) organizational opportunities to carry out processes of labeling and socialization to subordinate roles, that could be, and was, applied by others to understanding experiences in less intense organizational situations. Goffman’s next work, conceptually detailing ‘‘stigma’’ and illustrating its

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many manifestations, provided insights at the micro-level of interaction. While neither book, it seems to me, was intended to be solely or even mainly an analysis of disability phenomena, they set the early tone for disability studies. Given the central insights used by ‘‘Goffmanians’’ – e.g., that the experience of people with disabilities who become entangled (served?) in any kind of institutional program for ‘‘their kind’’ is shaped by the power relations (professionals have the power and related resources), and that their negative interactions do not inhere in any physical difference (the ‘‘primary deviance’’) but in the learned social role based on being labeled abnormal and inadequate (the ‘‘secondary deviance’’) – I personally feel that there is a direct (though incomplete) link to even the most radical ‘‘social model’’ interpretations of more recent times. However, Stigma and Bob Scott’s The Making of Blind Men, seem to be forgotten or perhaps rejected by recent disability theorists (Goffman is not even referenced in Tremain’s (2005), a 340-page compendium). Indeed, I agree that both those iconic treatments of societal reaction theory – perhaps still being assigned to exemplify general labeling theory in, say, criminology, social problems, and social psychology courses – fall short for contemporary purposes. They did not, and perhaps cannot, provide the theoretical grounds for the activist social movements of disabled people. However, that very gap could be plumbed fruitfully for better understanding of the social change from the earlier fragmentation of stigmatized people, to their subsequent mobilization based on ‘‘identity politics’’ (cf. Kitsuse, 1980b). Before reluctantly leaving this period, because so much more could be explored in terms of key sociological concepts that surfaced in attending to issues of disability (e.g., Parsons’ ‘‘sick role’’ and why its features were inadequate in regard to disability, [Nagi, 1965]), I need to address the other half of the label I had assigned it: ‘‘Rehabilitation and Remedies.’’ I admit to taking poetic license in the interests of alliteration, because the usual term for what I mean by ‘‘remedies’’ is ‘‘benefits’’ – specifically the income allowance for people deemed ‘‘unable to work’’ as in the Social Security Administration’s over-the-top terminology, ‘‘permanently and totally disabled.’’ (Take a few seconds to reflect on the multiple connotations, and political functions, of those terms: (a) ‘‘Benefits’’ have been shown to fall far short of replacement income (e.g., Luft, 1978), so what is the benefit? (b) I suggest that the appropriate definition of ‘‘permanently and totally disabled’’ is ‘‘dead’’; is that how people who could not work were viewed?)

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A major event around the middle of the period, i.e. in 1955, was the expansion of the Social Security insurance principle to cover ‘‘disability’’ – then only former workers aged 55 and older. It is noteworthy that Saad Nagi’s enormously influential work on conceptual issues of disability developed from his research on the ‘‘disability determination process’’ for federal Social Security benefits. That program was administered through the state vocational rehabilitation agencies, which as Nagi points out, creates a conceptual conflict-of-interest bound to have role-strain consequences for the staff member and the applicant (Nagi, 1965, 1969). SSA established an Office of Disability Research which conducted a series of major surveys on ‘‘Work and Disability,’’ the first in 1966. That office was headed by sociologist Larry Haber. Although Haber gathered his data for the most pragmatic of policy purposes, in that most pragmatic of agencies, he managed to use it also to publish theoretical analyses. He contributed the concept of ‘‘capacity devaluation’’ (Haber, 1970) (which I feel has been underappreciated) in medical sociology’s flagship journal (JHSB), and explored ‘‘normative adaptation of role behavior’’ with regard to disability and deviance, in that most august of ASA’s journals, the American Sociological Review (Haber & Smith, 1971). Those works are just on the cusp between the periods under study, so I’ll transition here.

1970s to Date: Terms of Debate: Civil Rights, Cultural Claims, and The Politics of Disability Statistics Evidence that the 1970s formed the cusp of two periods of theorizing disability is best found in the writings of, and those compiled by, sociologist Walter Gove. The even-handed title of his 1975 book (issued in a second edition in 1980), ‘‘The Labelling of Deviance: Evaluating a Perspective,’’ belies the concerted attack on that perspective contained within its covers. Chapters by Gove and seven other authors critiqued the labeling perspective in relation to varied deviant types (mental illness, mental retardation, crime, juvenile delinquency), one of which, by Richard Smith (1980), was physical disability. In addition, two of the leading proponents of labeling theory (Schur, 1980; Kitsuse, 1980a) contributed the final two chapters; that did not give them the ‘‘last word’’ since Gove’s preface and opening ‘‘overview’’ performed that function. It is hard to summarize the debate, which is punctuated, in effect, by many ‘‘Yes, but (s) y’’ on both sides. I will try nevertheless to highlight key elements of the critics’ argument as applied to physical disability,

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which they unabashedly linked to the ‘‘medical model’’: (a) the ‘‘primary deviance’’ does have significance – people ‘‘really’’ have some type of physical problem that makes them different; (b) people with physical disabilities (unlike criminals or people with mental illness) seek to acquire a label, because it brings them desired services, i.e., medical care and rehabilitation, or income benefits; and (c) many who had been labeled could become ‘‘delabeled’’ – through ‘‘normalization’’ they could return to ‘‘normal’’ relationships, and do not necessarily become socialized to a deviant role (‘‘secondary deviance’’). No point in going on here – you can find a concise summary in Albrecht (1992, 71ff.). Albrecht concludes that while ‘‘normalization’’ was well-intentioned, it was often ‘‘misunderstood’’ and ‘‘misapplied’’ such that ‘‘most programs in practice have [not] treated the disabled as other than deviants’’ (p. 74). And further, that while the critics of labeling made some good points, they could not explain the full scope of stigmatization. Albrecht felt the argument at least had the merit of forcing theorists to look beyond the paradigms they had been using. Gove’s book found enough audience to justify a 2nd edition in 1980. In the preface to the later one, Gove reflects that over the years the number of studies critical of labeling ‘‘theory’’ (a slip of his pen, because generally he contends labeling is not a ‘‘theory’’ but a ‘‘perspective’’) has greatly increased, but ‘‘appear to have had very little impact on the perspective y’’ (p. 27). ‘‘y Thus, labeling theorists and their critics tend to be talking past each other and, if history is any guide y, it is unlikely that either will drastically change their position’’ (p. 31). Indeed, I would say that instead of one side or the other eventually capitulating, the whole argument became largely irrelevant in disability research (with the big exception once again, of research on mental illness on which a whole session at the 2005 ASA meeting was devoted to ‘‘stigma’’). But that is jumping ahead of the story. First, we should consider a remarkable article that appeared in 1976, even though the field seems to have bypassed it. (At least I have not been aware of it until the search undertaken for this chapter.) The authors, Herb Bynder (then at University of Colorado) and Peter Kong-ming New (University of Toronto) issued a challenge to sociologists with a no-holds-barred approach that was only mildly hinted by the title: ‘‘Time for a Change: From Micro to MacroSociological Concepts in Disability Research’’ (Bynder & New, 1976). First, note the term ‘‘disability research’’ – that was a clue in itself that the authors wanted to move away from being the ‘‘handmaidens’’ to the rehabilitation business, which was still the dominant tone of sociologists’ work in that arena; they called most sociologists working in rehabilitation settings

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‘‘sociologist-therapists,’’ who simply added one more diagnosis for clients being served by rehabilitation professionals. Bynder and New reviewed the status of disability research because of the 1970 appearance of a ‘‘major work in sociology’’ by Safilios-Rothschild. Her book, in their view, raised again the question of the 1965 Sussman compendium: Was sociology making any worthwhile contributions to disability and rehabilitation? They went for the gut by suggesting that most of their colleagues had not even been asking the right questions, but rather that ‘‘sociologists seemed to be mired in a number of limited concepts’’ (p. 45). Let me quote fairly extensively: The sociologist, often the low man on the ‘‘totem pole’’ [in medical or rehabilitation settings], has frequently attempted to gain acceptance by modeling his own role after that of the therapist y .[trying to provide] physicians with practical answers as to why the patient does not get better even though all medical knowledge and technology indicate that the patient should be well or rehabilitated or back on the job. We think this has been particularly evident in the area of the sociology of disability where an overabundance of terms such as sick role and deviance have been used loosely to explain the behavior of patients that do not fit the medical norm y [Put differently] by using terms such as sick role and deviance, attitudes, beliefs, and interpersonal relations, the sociologist has been [doing] micro-sociological analysis, y basically social psychology rather than sociology [Bynder and New conclude – citing Krause’s Marxist analysis, and Safilios-Rothschild’s (1970) and Scott’s (1970) critical analyses of specific rehabilitation systems] – that ‘‘a more meaningful approach y lies in the macro-sociological structural analysis of various institutions and how they impinge directly or indirectly on the disabled, their families, and the professionals who work in the rehabilitation field.’’ (pp. 50–51)

The change that Bynder and New called for is essentially what has been occurring over the following decades, although it is not yet a thoroughgoing shift, and I doubt that it can be attributed to this chapter or other efforts by those authors. Some things about the genesis of the chapter are intriguing, hinting at the marginal situation of disability researchers within medical sociology at the time (and now?). I note that the paper was originally presented at the American Psychological Association meetings; that was in 1973, so it was three years before it was eventually published in the Journal of Health and Social Behavior. The authors refer to a list of about 100 sociologists and psychologists engaged in research on disability whom they surveyed to gain information on concepts used and neglected, and the support they felt they received from colleagues. The response was minimal, but apparently useful. My question: What ever happened to those 100 or so disability researchers of the early 1970s in terms of a presence in medical sociology?

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Appearing in the same year as Bynder and New’s sharp challenge to disability research was the highly eclectic compendium edited by Gary Albrecht (1976). It seems he was aware of the challenge without referencing it, presumably because it was a debate going on among disability researchers at that time. Albrecht notes that his book brings together, without attempting to integrate them, both the ‘‘behaviorist and the macrosociological perspectives on understanding individual response to disability’’ (p. ix). Both sides of the labeling theory divide are represented, e.g., by Safilios-Rothschild (1976) and Gove (1976). Krause (1976), the Marxian analyst, rubs shoulders, so to speak, with Coe (1976), who I suspect is a structural-functionalist, urging collaboration among professionals and semiprofessionals in the rehabilitation process. The collection was innovative by focusing on two topics that even now are, I believe, inadequately studied as forms of social organization that affect and are affected by the disability experience: (1) the family (Cogswell’s (1976) chapter, using role theory) and (2) the larger system of social stratification, (Alexander’s chapter, 1976). He suggests that while disability research has included socioeconomic status variables, it should elaborate those types of analyses; on the other hand, he argues that general status attainment research and theory has not attended to, and would benefit greatly from incorporating, disability variables. Unless I have missed it – which is very possible given the flood of writing in the years since 1976 – neither family nor stratification researchers have picked up that challenge. Conversely, disability research does not seem to have done much more than acknowledge that family and social status are ‘‘there,’’ rather than systematically examining the bidirectional effects of different family structures, and of dynamic aspects of status attainment (or loss) on and as a result of, the disability experience. Now we can return to the rather sad saga of labeling ‘‘theory.’’ It was probably not the urging of Bynder and New to look at larger societal forces, nor the hammering by antilabeling critics, that sent labeling theory under cover. Much more likely, it was the emergence of civil rights legislation at the national level in the early and mid-1970s, and especially the suddenly visible and vocal disability rights movement, that had that effect. Labeling theory simply could not account for those developments. Kitsuse (1980b) put his finger on the problem very effectively in his 1980 presidential address to the Society for the Study of Social Problems. He tried but, in my view, could not come up with a very convincing labeling theory solution. Valiantly, but rather feebly, he proposed that the militant and proud movements among various previously subordinated deviant persons

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(e.g., blacks, gays, prostitutes), be explained by creating a category called ‘‘tertiary deviance.’’ From here on, to pull us through what I see as two subperiods of theory development from the 1980s to the present, I’ll need to move so quickly that I’m at risk of getting a speeding ticket (to revert to the motoring metaphor). I’ll call those subperiods the ‘‘merely modern’’ and the ‘‘postmodern.’’ My speed can be felt in absolute terms, due to the short time remaining. It can be felt even more in relative terms, because starting in the late 1980s, and seemingly exponentially ever since, the number of books and articles on social aspects of disability keeps increasing. Not having done an actual count, I am guessing that, speaking quantitatively, American sociology has barely held its own in that river of writings, compared to other social sciences and humanities, and to British sociology. I have mentioned the 1988 collection, ‘‘Moving Disability Beyond ‘Stigma,’’ a special issue of the journal of the Society for the Psychological Study of Social Issues. (That title could be read as a fond farewell wave to the necessary preparatory work by labeling theorists.) In contrast to the theoretically contradictory chapters within the covers of Albrecht’s collection, virtually all of whose authors were sociologists, the JSI collection aims for and achieves theoretical coherence, while offering a broad range of disciplinary perspectives, only a minority of them sociologists. The vision that informs the full dozen articles is provocatively stated in Fine and Asch’s introduction as: ‘‘imagining a context in which disability would not be handicapping’’ (p. 18). More specifically, the articles all ‘‘reframe disability as a minority-group issue in which a set of socially negotiated meanings of the body are played out psychologically, socially, and politically’’ (p. 18). And there we have the heralding of the new elements that, taken together, mark off what I have a bit facetiously called the ‘‘merely modern’’ period of theory on disability. Those elements requiring study are: minority group theory; a social movement by that minority group; and the political means (socially negotiated meanings) and objectives (civil rights) of that movement. An organizational side note: At this point, it begins to seem presumptuous to refer to ‘‘sociological’’ theory of disability. Let’s just agree that henceforth, I include ‘‘sociological’’ by reference, recognizing that input from social psychology, anthropology, political science, history, and humanities is deeply blended in the key concepts and their postulated interrelationships. The blending was facilitated, and sometimes forced, by carving out a field of ‘‘disability studies’’ where those disciplines could convene to share, and often debate, their thoughts. The formal beginning of

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the field could perhaps be dated to 1980 with the establishment by Irving Zola, of a then-newsletter, now journal, Disability Studies Quarterly. The evolution of the field from its ‘‘medical model’’ origin is neatly marked by the founding of the Society for Disability Studies in 1986 as an outgrowth from the not much older Society for the Study of Chronic Illness, Impairment, and Disability. Virtually at the same time as the ‘‘Beyond Stigma’’ collection was published, another important journal-based collection appeared, this one in a two-volume supplement to The Milbank Quarterly. The latter journal is devoted to cross-disciplinary research, policy and conceptual analyses of ‘‘health and society.’’ The supplement was titled ‘‘Disability Policy: Restoring Socioeconomic Independence.’’ The contributors were mostly economists, but also present were, among other disciplines, epidemiology, history, political science, law, and, yes, sociology. Scotch (1989) reworked for that journal’s audience the analysis of the ‘‘disability rights movement’’ that also formed his chapter in the Fine and Asch 1988 collection. I detect a slight difference in tone between them, with the 1988 article (Scotch, 1988), whose audience was more likely to come from a ‘‘social model’’ understanding of disability, addressing the barriers faced by the movement, whereas the 1989 version, is more didactic in explaining what disability ‘‘rights’’ means, and what is the basis for disability ‘‘activism.’’ Scotch’s article immediately precedes the closing article, a strong statement by Zola of his vision for policy of the future: ‘‘Toward the Necessary Universalizing of a Disability Policy’’ (Zola, 1989). I believe that this was the first published version of the major theoretical contribution that Zola developed over the remaining six years that his too brief life permitted. What was that contribution? In his words from 1989: What I have tried to do in this article is demystify ‘‘the specialness’’ of disability. y Only when we acknowledge the near universality of disability and that all its dimensions (including the biomedical) are part of the social process by which the meanings of disability are negotiated will it be possible fully to appreciate how general public policy can affect this issue. Such a turnaround is easier said than done. (p. 421)

Let me jump ahead a bit to what can be seen, arguably, as a contemporary application of the idea of universalizing disability policy. Granted that this example does not fully implement the universalizing principle, that it even approximates that idea is significant because it appears in the health (‘‘biomedical’’) arena, where we might least have expected it. I am referring to the nation’s public health agenda (as administered through the Centers for Disease Control and Prevention), of eliminating health disparities

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between people with or without disabilities. Both biomedicine and public health had traditionally viewed people with disabilities as, by definition, in poor health and not expected to benefit from health care resources, especially preventive care, as devoted to nondisabled people. But now, ‘‘disability is a demographic;’’ a starting point, not an endpoint; a socially defined ‘‘background variable,’’ analogous to ethnicity or gender. A chapter of HP2010 is devoted to the idea of healthy disabled people, recognizing that health encompasses the full range of social participation, including employment, and that changes in the environment (policy, built, and attitudinal) are necessary to create such participation. Am I saying that a policy of ‘‘universal health’’ now permeates public health or any other policy arena? Hardly! I am saying only that the very concept of a healthy disabled person, being championed within a health-oriented government agency, signals the beginning of the end for the old classification of ‘‘the fit’’ versus ‘‘the unfit.’’ ‘‘Fitness for all’’ has developed a robust theoretical base, if not yet equally widespread understanding and acceptance. Were Zola with us (don’t we wish!), would he feel his theoretical insight of ‘‘universalizing disability’’ is taking hold? I think, probably ‘‘yes.’’ Zola had become politicized around his own disability status quite deep into his career as a medical sociologist; he would later talk about it as a belated recognition of the shared nature of access problems he had long considered personal and to be kept private, to the extent possible. Becoming aware that the barriers he faced to professional venues had been placed by persons in power, whether wittingly or not, he saw his subsequent work in policy analysis as equal parts developing (A) a theoretically sound understanding and (B) effective strategy for the ‘‘turnaround that is easier said than done.’’ In the article I just quoted from, Zola refers to the ‘‘universalizing’’ of policy as ‘‘necessary’’ because he believed it offered the best strategy at that time, and for the foreseeable future, given that policymakers were already anticipating an aging society. Zola contrasted his strategy with the ‘‘minority group, rights-based’’ strategy, for which he heavily credited political scientist Hahn’s work. Zola acknowledged that the minority group rights strategy had accomplished much, but he perceived its limitations (here he cited Barnartt & Seelman, 1988). In a nutshell, a debate was emerging, with both academic and pragmatic significance. Now, I will step into the story myself. This chapter of it could be titled ‘‘The Politics of Disability Statistics.’’ That in fact was the title I had used to entice the written thoughts of colleagues, in 1990, within the informal pages of a ‘‘theme issue’’ of DSQ (Kirchner, 1990). That venture drew enough interest that I subsequently convinced Kay Schriner, then editor of

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the peer-reviewed Journal of Disability Policy Studies (JDPS), to let me develop that topic in a special issue. It appeared in late 1993 (Kirchner, 1993), with major contributions by both Zola (1993) and Hahn (1993), each developing his contrasting perspective. Zola argued more rigorously than in 1999, or at least at greater length, for the ‘‘universality’’ of disability. Seen in terms of policy-relevant statistics about ‘‘the disabled population’’ (read: voters and relatives of voters), that stance would maximize prevalence estimates. By contrast, Hahn’s ‘‘minority group’’ conceptualization of disability would minimize prevalence estimates. Introducing that JDPS issue, I summarized the debate this way: Zola’s approach encompasses ‘‘most people some of the time,’’ whereas Hahn’s approach encompasses ‘‘some people most of the time.’’ I was not certain, then or now, whether those approaches could be made mutually supportive, or if pursuing one necessarily requires abandoning the other. Whatever that case may be, for present purposes, the notion of the ‘‘politics of disability statistics’’ can be the bridge to the final theoretical approach on the disability scene. (Let me restate that: I am sure we have not seen the final theoretical approach; I merely mean the latest approach on the disability studies scene, and thus the final one for this review.) The latest approach is Foucauldian and brings us to the latest in the historically evolving theme of ‘‘fitness’’ as related to disability. Today, the theoretical question is not, as it was in the earliest period, what to do about the ‘‘unfit’’ category of society’s population. Nor is it the idea that has been gradually but drastically reformulated in the recent past: how to make society inclusive enough to promote ‘‘fitness for all.’’ Today, germinating in a seemingly obscure corner of sociology, the fundamental theoretical question is: Who has the power to define the very concept of ‘‘fitness,’’ for what purpose, and with what effects? How can I give you the one-minute primer on Foucault? I can’t, I have hardly read any of the original, and little of the work based on it. I will rely on two chapters by sociologists in Tremain (2005): (1) ‘‘Legislating Disability’’ by Australian Fiona Campbell and (2) ‘‘Who is Normal? Who is Deviant? ‘Normality’ and ‘Risk’ in Genetic Diagnostics and Counseling’’ by German Anne Waldschmidt. Let me say outright that for me, and I venture others of or close to my generation, this is difficult reading, even though these authors both have a seemingly straightforward writing style. They use concepts and terms outside the core literature of my instruction in sociology. ‘‘Ontology; panopticon; unthinkability; the subaltern; logic of supplementarity’’ just to select a few from Campbell’s chapter. Nevertheless, I truly became engaged by the understanding I have been able to achieve thus far.

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Here is what I got out of it: The system of discourse and measurement of disability that pervades our society, including recent civil rights legislation, is based on the underlying view that disability is inherently negative. ‘‘Rights’’ are based on correcting the ‘‘social injury’’ that necessarily accompanies disability. With those assumptions, the new perspective asks: How could one claim with pride the culture they share? There is a danger, and Campbell suggests there is actual evidence, that ‘‘neoliberal societies are sliding into a ‘positive’ laissez-faire form of eugenics, albeit under the guise of the liberal promise of ‘choice’ and ‘freedom’’’ (p. 126). One important arena of the dangerous ‘‘choice’’ Campbell refers to is genetic counseling, the topic of Waldschmidt’s inquiry. From the latter, I will focus on her discussion of today’s ‘‘normalization society.’’ That term is familiar to us, as used in the post-1940s period. But Waldschmidt goes on to distinguish two variants of society’s view of normality – the older version that dominated until mid-20th century. That she calls the ‘‘normative,’’ with clear-cut categories (such as ‘‘fit/unfit’’). Since then and increasingly, as statistical methods became central in governance of society, we rely on probabilistic ways of defining normal. In her words, ‘‘there are now two types of norms that guide human action: normative norms and normalistic norms’’ (p. 193). OK, that may not be the most elegant or even clear way to convey the message. But her point is that the latter, newer type – the ‘‘normalistic’’ or ‘‘statistical norms,’’ – while leading to more flexible and less personalized boundaries of who is considered ‘‘abnormal’’ than the earlier categorical norms, nevertheless still puts some people outside the boundaries. And those people are the targets of genetic diagnostics and counseling. I can’t go farther here, but I think you see how two strands in this long path can now be tied up.

CONCLUSIONS First, this approach brings back but with a quite different spin, the idea of the ‘‘politics of disability statistics.’’ This approach makes the whole enterprise of statistics, and perhaps of quantitative sociology, part of the problem that creates disability disadvantage. Second, we come back again to the threat of eugenics. I close therefore with the question I posed at the outset. How far have we come? Sociological theory has tracked a seemingly consistent march of progress up to the start of this century. Research has observed and theory has tried to account for group affiliation (‘‘identity politics’’) and

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mobilization around correcting previous injustice, even oppression, based on biological differences. Theory, looking at a macro-sociological policy level (but maybe not macro enough) believed that prior wrongs can be corrected through legislation and education about civil rights, and by restructuring environments to be responsive to a full range of those differences. But now, another view sees little change in all that activity, rather just a technical shift in how difference is measured, still retaining an underlying negativity about the fact of difference. The new view, in its hardest-to-take form, accuses social scientists in the same sentence with biomedical scientists and practitioners, of justifying and sustaining that negativity, and ultimately contributing to the vital danger posed by modern (postmodern?) means of eugenically eliminating statistically ‘‘abnormal’’ people. How far have we come?

NOTES 1. Bloom points out that medical degrees at the time could be obtained in six months. Thus he considers Ward’s having the M.D. more a reflection of the fact that scholars of that period were admired for the breadth of their intellectual interests, rather than suggesting that Ward should be viewed as a significant forerunner of medical sociology. 2. Although this period spans only 20 years, compared to the longer ones preceding and following, it yields the largest trove of what I consider noteworthy developments in the sociological theorizing on disability. That is partly because in this period a field explicitly devoted to the subject emerged. But since that field has continued and grown to the present, with the infrastructure of academic programs, journals and a professional association, as well as sections in others, why does it seem that the most recent period offers less to discuss here? Perhaps because until very recently, sociologists were lagging in their efforts at theorizing in this field. 3. An intriguing aspect is to consider Ed Roberts, a founder of the IL movement, having been director of the California vocational rehab agency, and then his colleague, Judy Heumann, becoming the administrator (Assistant Secretary) over the federal rehabilitation service.

ACKNOWLEDGMENTS Thanks to Beth Haller for a critical reading and to Frances Corry for careful copyediting.

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REGARDING DISABILITY: PERCEPTIONS OF PROTECTION UNDER THE AMERICANS WITH DISABILITIES ACT Pepper K. Mueller, Jeffrey A. Houser and Mark D. Riddle ABSTRACT The purpose of this study is to analyze public perceptions of disability and gain insight into the types of health conditions nondisabled people believe should be protected by the Americans with Disabilities Act (ADA). Understanding how the public interprets the ADA could offer perspective on which disabilities are viewed as legitimate and which are not. Data were gathered from a convenience sample of members from local community groups and college classrooms in a metropolitan university setting. Our analyses evaluate the clustering of health condition types due to similar traits and identify which attributes of the health conditions generate this clustering. Results from a series of quantitative and qualitative analyses (e.g., hierarchical cluster analysis, frequency analysis, discourse analysis, etc.) indicate nondisabled respondents perceive physical and cognitive health conditions that are visible, static, and externally acquired as legitimate disabilities that should be protected by the ADA. Disability as a Fluid State Research in Social Science and Disability, Volume 5, 159–180 Copyright r 2010 by Emerald Group Publishing Limited All rights of reproduction in any form reserved ISSN: 1479-3547/doi:10.1108/S1479-3547(2010)0000005009

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INTRODUCTION In 1990, the United States Legislature took an unprecedented step toward securing the rights and privileges of persons with disabilities by passing the Americans with Disabilities Act (ADA). In the opening language of the ADA, Congress estimated that in 1990 roughly 43 million Americans were disabled and as such were covered by the new law (42 Unites States Code, 1990). The language of the ADA recognized the continued problem of societal exclusion stating, individuals with disabilities are a discrete and insular minority who have been faced with restrictions and limitations, subjected to a history of purposeful unequal treatment, and relegated to a position of political powerlessness in our society, based on characteristics that are beyond the control of such individuals. (42 Unites States Code, 1990, Sec. 12101, p. 1)

Even with the ADA’s recognition of this societal exclusion and the formulation of policy measures to combat it, questions still linger as to what qualifies as a disability. In fact, the majority of cases brought forward under the Act have focused on determining if the plaintiff even qualifies for protection under the ADA’s definition of disability. In so doing, the courts have created a paradoxical application of the law, in which the ADA was designed to protect disabled individuals from discrimination in employment, education, and in access to public space, yet most plaintiffs have had to defend their right to bring forth the case first by proving that they are legitimately disabled. Without a clear understanding of the applicability of the Act, there has been little headway in ameliorating the limitations, unequal treatment, and powerlessness experienced by people with disabilities. In this light we aim to address the definition of disability not from the perspective of the legal system, but from the point of view of the person on the street. How does the general public define disability? To whom does the ADA apply? Using the ADA as a perceptual basis, this study seeks to explore how nondisabled persons determine which health conditions qualify as a disability and which do not. While the ADA was not intended for this purpose, it does provide a set of definitions and expectations of which most Americans have at least a basic understanding. Much has been written about how the courts struggle with the ADA’s definition of disability (see Bagenstos, 2000, for a review of recent Supreme Court decisions with regard to the ‘‘legal’’ definition of disability). Likewise public attitudes and perceptions of disability have been studied in the past (cf, Tringo, 1970; Yuker, 1988). However, no attempt has

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been made to reconcile the perceptions of nondisabled Americans and their interpretation of the law itself. This study seeks to fill some of that gap and will determine if patterns of perception and a public definition of disability emerge.

The Americans with Disabilities Act (ADA) In this study, we use the ADA as the foundation for analyzing perceptions about what is and what is not considered a disability. The ADA was not the first legislation to provide rights and protections to persons with disabilities. In the 1960s, the advance of civil rights in many arenas brought about new and dramatic developments in disability rights legislation. One result was a shift in the purpose of disability legislation from providing care and rehabilitative services to disabled persons to ensuring equal rights. The first groundbreaking legislation along these lines was Section 504 of the 1973 Rehabilitation Act. Even as Section 504 was touted as a ‘‘profound and historic shift in disability public policy’’ (Mayerson, 1992, p. 1) in regard to rights for the disabled, it largely went unnoticed at the time. Momentum gained by the disability rights movement increased the call for enforcement and expansion of the rights outlined in Section 504. The result was the current legislation guiding American disability policy, the ADA of 1990. The ADA’s purpose is to provide public accessibility and social integration for millions of Americans with disabilities and to create and reinforce a social order that protects disabled persons from discrimination because of their differences. In the 19 years during which the ADA has been in place, many environmental changes have been carried out to ensure better access to transportation, buildings, and public spaces. Even so, the disabled still face discrimination, are employed at a significantly lower rate than the nondisabled, and remain restricted from full social inclusion. The ADA has been successful in mandating the removal of environmental barriers; however, the policy cannot legislate a change in attitude toward the disabled. Due to the diversity of disability, the framers of the ADA realized that the statute needed a broad definition of disability which was flexible enough to encompass individuals with concrete, traditionally defined disabilities, as well as individuals who were perceived to be disabled when in fact they were not (Mayerson, 1997). Therefore, the ADA provides a definition of disability with a three-pronged approach. Individuals are defined as disabled by the ADA if they (1) have a physical or mental health condition that

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substantially limits one or more major life activities; (2) have a history or record of such health condition; or (3) are perceived by others or ‘‘regarded as’’ having a health condition (42 Unites States Code, 1990, Sec. 12101). In essence, each prong represents a unique stance in the identification of disability. The first prong represents self-identification, the second medical diagnosis, and the third a social interpretation of disability. Prongs one and two lie outside the boundary of the current study; our attention is focused solely on the third prong – the public’s definition. The passage of the ADA Amendments Act of 2008 helped to clarify the legal definition of disability greatly, further supporting our contention that the original policy language in this regard was too vague in defining who should be protected by the provisions of the ADA. However, because this study commenced just as the ADA Amendments Act went into effect, January 1, 2009, we did not consider it a major influence on the perceptions of nondisabled people yet. In addition, because of its recent passage, there was little data available yet to show how this definition clarification is contributing to changing perceptions or Equal Employment Opportunity Commission (EEOC) enforcement in cases of discrimination.

‘‘REGARDED AS’’ VERSUS ‘‘REGARDED BY’’ The ambiguity of the definition of disability prior to the passage of the ADA Amendments Act of 2008 in each of the ADA’s three prongs was an area of contention, as pointed out by critics (e.g., Colker, 2005). First, the ADA does not list the health conditions covered by the act when disability is selfidentified. Interpretation of prongs one and two has been left to the EEOC and the judicial system to establish the necessary criteria for filing grievances under the Act. Second, the third prong opens the door for legal action by individuals who are free of health condition provided others perceive them as disabled. In other words, any individual can be ‘‘regarded as’’ disabled provided they have been ‘‘regarded by’’ others as such. The criteria others use to arrive at the conclusion of just what constitutes a disability are at the heart of the present research. It is important to note the difference between a health condition and a disability. A health condition is a condition that impedes a person’s ability to function at normal or expected levels of physical or mental activity (Nagler & Wilson, 1995). While individuals may have a physical or mental health condition that affects their daily activities, disability is really a result

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of an impaired individual’s interaction with nondisabled persons in their social environment (Liachowitz, 1988). As a person with a physical or mental health condition begins the process of navigating the world outside their own home, conducting business, and engaging in social discourse with other individuals, the metamorphosis from health condition to disability begins to occur. As noted by Marks (1999), ‘‘health conditions are relatively fixed and noncontroversial ‘facts’ of life. By contrast, disability is socially produced and reproduced because of the way health conditions are perceived and treated’’ (p. 118). In essence, what disables an impaired individual are physical barriers that restrict movement or access to a public space, and attitudinal barriers that disrupt social interaction. It is society that disables people with health conditions (Barnes, Mercer, & Shakespeare, 1999). The notion that disability exists outside the body of the impaired person and results from an interaction of environmental constraints and inter-relations with nondisabled others is known as the social model of disability (Tierney, Petak, & Hahn, 1988; Hahn, 1993). The social model of disability concentrates on the social institutions, structures, and interactions that produce prejudice, stereotypes, discrimination, and stigma. This model posits a need for redirecting the public’s assumptions of what it means to be disabled. Fine and Asch (1988) identify five basic misconceptions that the public makes with regard to disability: (1) disability is a biological condition that is synonymous with the person, and therefore the cause of other’s behaviors and attitudes; (2) problems encountered by the person with a disability are a result of the disability; (3) people with disabilities are ‘‘victims;’’ (4) the disability of the person is central to his or her self-definition, social comparison, and reference group; and (5) disability is synonymous with needing help and social support. These assumptions color perceptions, shape attitudes, and nurture prejudice toward the disabled, according to the social model. Prejudicial attitudes provide the basis for covert discriminatory practices that may be responsible for the disparity in employment rates between nondisabled and disabled persons. Indeed, without individual attitudes and perceptions being reinforced within social structures, institutional discrimination would not flourish. While many obstacles to acceptance and integration of persons with disabilities have been cited, the primary obstacle is prejudicial attitudes and discrimination by the nondisabled (Marks, 1999; Yuker, 1994). Institutional discrimination is usually reinforced by individual prejudice and resulting discrimination. The stigma of disability interrupts the social environment and

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renders interaction problematic. Therefore understanding the ‘‘regarded by’’ component of disability lies at the core of achieving the goals set out by the framers of the ADA: social acceptance free from prejudice and discrimination. Others have noted that public understanding about what constitutes a disability are often inconsistent (Popovich, Scherbaum, Scherbaumand, & Polinko, 2003; Wright, 1983). One study about attitudes in the workplace found there was a discrepancy in what participants believed were disabilities covered by the ADA. This discrepancy was most pronounced for psychological conditions like schizophrenia and alcoholism, which participants did not consider to be disabilities at all (Popovich et al., 2003). There seems to be a belief among many nondisabled persons that psychological conditions are self-imposed or unworthy of disability status.

The Purpose of the Research The purpose of this study is to explore which health conditions nondisabled people define as a disability worthy of legal protection under the ADA. This study also explores the question of whether the designations of disability follow any recognizable patterns.

METHODOLOGY This study examines the perceptions nondisabled individuals have toward specific health condition types. Through a series of questions, participants were asked to code a set of health conditions and decide on the disabilities worthy of ADA protection.

Sampling Frame A convenience sample of 295 volunteer participants was recruited through a combination of 10 community civic groups in a mid-western city with a population of 100,000 residents, and three freshman level courses at a midsize, four year university, during the spring of 2009. Data from three respondents were removed from analyses due to lack of response on the survey instrument.

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The Instrument Subjects were given a paper-and-pencil survey created by the authors. The first question asked them to identify ‘‘which individuals y do you believe have disabilities and should be protected by the provisions of the ADA?’’ A list of 57 health conditions that could be perceived as disabilities followed, and subjects could indicate that they felt an item should be protected, that it should not be protected, or that they did not know what the item was. On the second page of the survey, participants were asked about their gender, age, occupation, religious affiliation, highest year of education completed, racial/ethnic background, marital status, disability status, relationship with someone who is disabled and the nature of that association. The final question on the survey instrument gave participants an open opportunity to add any comments they would like. The survey was presented to 10 community groups at their normal place of meeting within the local community of a mid-western city of roughly 100,000 people and it was presented during a regularly scheduled meeting. We also conducted the survey in three freshman level geography classes at a mid-size (16,000 enrollment) four-year university during regularly scheduled class periods. A standardized procedure was followed in which the letter of consent was read and handed out for participants to sign. Upon collection of the letter of consent, the one page, double-sided instrument was passed out with the only instruction to please make sure to flip the page over as there were questions on the back.

Statistical Procedure We suspected that subjects’ choices of disabilities might tend to cluster together, which might, in turn, suggest underlying self-prescribed selection rules individuals used to differentiate between health conditions, which should or should not be covered by the ADA. This suspicion recommended the use of multidimensional scaling (MDS), an exploratory technique used extensively in the analysis of consumer preferences. The dichotomous responses to the first question (1 ¼ yes, 0 ¼ no) were subjected to MDS using the Alscal package in SPSS. The output to the routine is essentially a map of the correlations between variables; the distance between pairs of health conditions decreases as the number of subjects who respond similarly to them increases.

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The Procedure Following collection of the survey instrument, a debriefing period followed. For the majority of the community groups this debriefing period consisted of a statement of the primary research question for this study and a short explanation of how the data would be analyzed. However, of the 10 community groups and three classes, five allowed for a longer discussion period lasting between 30 and 60 minutes in which we collected qualitative data in the form of verbal discussion. Debriefing sessions were audio-taped and then transcribed.

Sample Characteristics Since this study was specifically aimed at evaluating perceptions among nondisabled people, two items measured the respondent’s social distance to a person with a disability. In response to the question ‘‘Are you disabled?’’ 8.6% indicated they were in fact disabled. Just over 86% of the sample indicated they were not disabled and data are missing from 4.8% with regard to their disability status. Because of their affirmative response we removed the 25 participants’ surveys who self-reported disability bringing the total sample down to 267. Slightly more than half of the 267 retained participants were female (57.2%). Ages ranged from 18 to 91 with a mean age of 42.70 years old. The mode for the sample was 19 with a strong secondary mode of 64 years old. The sample was not racially diverse as 85.3% were White, 0.3% were African American, 5.8% were Hispanic/Latino, 0.7% were Asian/ Pacific Islander, 1% were Native American, and 1% were from other racial/ ethnic backgrounds. This sample was well educated, 8.9% indicated receiving a high school diploma General Equivalency Diploma (GED), 36% of the sample indicated having taken some college courses, 6.8% having a two-year degree, 22.9% received a four-year college degree, and 20.5% received some form of a graduate-level degree. Responses to the question on marital status revealed that slightly over half of the respondents (54.8%) were married or in a committed relationship. Almost 35% of the participants indicated they were single, never married, 3.4% were separated or divorced, and 2.4% were widowed. There was no response to the marital status question by 4.5% of the sample. In terms of religion 49.3% indicated they were Protestant, 16.4% Catholic, 0.7% Jewish, 10.6% indicated they practiced no religion, and 16.1% indicated they practice some other religion.

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We did ask an open-ended question following this question about the nature of the health condition for those individuals who answered affirmatively to the ‘‘Are you disabled?’’ question, but we did not include or use any of their responses as we were only interested in what nondisabled respondents believe disability to be. When asked ‘‘do you have a relationship with someone who is disabled?’’ 47.3% said yes, 46.9% said no, and 5.8% did not respond to this question. Of the 47.3% who indicated they had a relationship with someone who was disabled, 33.9% said the nature of the relationship was friendship and 13% said they have a family member who is disabled; however, 53.1% of the respondents who indicated they had a relationship with a person with a disability did not provide information on the nature of this relationship.

Health Condition Coding Each of the 57 health conditions listed on the first item of the survey was coded with respect to: (1) the predominant nature of the health condition (physical, cognitive, chronic illness, psychological, onset-control, and other); (2) the visibility of the health condition (visible vs. invisible); (3) the nature of the health condition’s course (static vs. progressive); and (4) the locus of control over the occurrence or origin of the health condition (internal/ onset-controllable vs. external/onset-uncontrollable). This coding scheme incorporates a wealth of research on the hierarchy of disability (Antonak & Livneh, 1991; Stone & Colella, 1996; Tringo, 1970) and the dimensions of stigma associated with various types of disabilities (Goffman, 1963; Jones et al., 1984; Yuker, 1994).

Survey Manipulation Checks We included four items to the list of health conditions to serve as survey manipulation checks: baldness, infertility, erectile dysfunction, and allergies (although some allergies to food, bees, and latex can be quite deadly and necessitates extreme care). These items are not considered to be disabilities under most definitions of the term and were included to make sure respondents did not succumb to testing fatigue and simply circle ‘‘yes’’ to every item listed. The manipulation checks were effective as all 292 surveys had at least one ‘‘no’’ response to at least one item from this list.

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RESULTS The response percentages for each potential disability are shown in Fig. 1. The 57 potential disabilities have been sorted from the highest rate advocating protection (mental retardation) to the lowest (where the questionnaire check items appear, although drug addiction, which was not one of these items, received less support than did allergies, which was one of our check items). The MDS routine produced the coordinates shown in Fig. 2. The routine diagnostics suggested that a two-dimensional solution was adequate to account for 96% of the variance in the association between variables, with minimal stress.

Visibility

Visibility

Origin

Origin

Mental Retardation Deafness

V O I O

Bipolar Disorder Fibromyalgia

I I

O O

Traum. Brain Injury Down syndrome Paraplegic

I O V O V O

Sickle Cell Anemia Heart Disease

I I I

O O O

Quadriplegic Muscular Dystrophy Multiple Sclerosis Cerebral Palsy Amputee

V O V O IV O V O V O V O I O I O V O

I I I I I

B B O O O

V V

O O

I I I

O O O

I I I

B O O

IV I

O O

I

B B B

Parkinson’s Autism Alzheimer’s Stroke Cystic Fibrosis Epilepsy

I I V V I V V I

Spina Bifida ALS (Lou Gehrig's) Schizophrenia Tourette’s syndrome Leprosy PTSD

O O O O O O O O

Little People/Dwarf Leukemia

V O I O

Burn Victim

IV O I O IV O

Dyslexia Cancer Arthritis Lupus

IV O I O 0 0.25 0.5 0.75 1 proportion of respondents

Yes

Fig. 1.

No

Hemophilia HIV/AIDS Personality Disorder Asthma Crohns Disease OCD Emphysema Facial Disfigurement Chronic Fatigue Diabetes Sleep Disorders Depression Organ Transplant Thyroid Malnutrition IBS Eating Disorders Alcoholism Obesity

I V

Allergies Drug Addiction Erectile Dysfunction Infertility Baldness

C I

*

C C C

* * *

0 0.25 0.5 0.75 1 proportion of respondents

DK/NA

Visibility I = Invisible Origin O = Organic V = Visible B = Behavioral IV = Invisible or Visible = Survey Check

Univariate Statistics and Theme Coding.

B

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‘Regarded as’ Disability

Bald

LP/Dwarf

Physiological Chronic Illness Cognitive Psychological Behavioral Survey check Other

Obese

No Infert

OCD Alcoholism Facial Disfig

Organ Trans

Dyslex

Drug

Burn

Personality Dis ED

Malnutrition Allerg Eating

Depression

Thyroid IBS

Tour

Sleep

Amputee

Diabetes Schiz

AIDS

Chron Fatigue Asthma

Bipol

Yes

PTSD

ALS

Crohn’s Park

Maybe?

Leukemia Arth Cancer

MenRet

Autism

Hemoph

Heart

Emphysema

Stroke

Alzheim

TBI MS

Epilep

Lupus

Spina

DowSyn CP Para Deaf

MD Quad

Sickle CF Fibromyalgia

Leprosy

Fig. 2. Scatterplot from MDS Analysis.

The axes in an MDS analysis, like the factors in a factor analysis, are a matter of mathematical convenience; it is up to the investigator to provide an interpretation of the results. A quick comparison of the univariate responses and the MDS solution suggests that the horizontal axis is most closely related to whether subjects were willing to advocate protection or not; that is, health conditions to the right were more likely to be afforded ADA protection than health conditions toward the left. The second dimension seems to divide those health conditions not considered worthy of ADA protection from those about which subjects were ambivalent (or perhaps ignorant). To further understand the MDS map, we attempted to categorize the disabilities that cluster together; while this effort was somewhat arbitrary (like the interpretation of the axes), it does suggest that subjects were likely to advocate for or against protection on the basis of some fairly simple rules. In the zone marked ‘‘yes,’’ for example, most of the health conditions are of a physiological or cognitive nature; none are among those we have labeled

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‘‘behavioral,’’ about which subjects might have some measure of control. On the other hand, all of the survey check disabilities cluster in the ‘‘no’’ side of things, where they are surrounded by disabilities over which (it might be imagined) persons might have a measure of control. It is interesting to note that health conditions in the ‘‘maybe’’ zone are mostly chronic in nature, suggesting that subjects consider these health conditions the sort of things to which those living with them should be able to adjust.

DISCUSSION The research questions addressed in this study were: (1) how do nondisabled adults define ADA-protected disability? and (2) do certain attributes of a health condition affect its designation as an ADA-protected disability?

Interpreting the Scatterplot As a check on the MDS plot, hierarchical cluster analysis (HCA) was applied to the variables; results from this analysis provide some additional insight into the processes that group health conditions into three distinct clusters, in that interpretation of the loading schedule of the HCA allows the opportunity to discuss the overall strength of the clustering with respect to individual health conditions. Fig. 2 represents a cultural layout of disability when ‘‘regarded by’’ the general public. Health conditions’ location on the scatterplot from left to right represents the level of consensus across the sample on whether or not it qualifies for protection under the ADA. Items within the innermost circles received the highest levels of concurrence, whether for or against support. For example, baldness received the least support for protection under the ADA. Overwhelmingly, our respondents do not regard an individual who is bald as having a disability. Likewise each of the three remaining survey manipulation checks are positioned to the far left of the scatterplot, indicating that they do not consider erectile dysfunction, infertility, and allergies to be disabilities. The location of these items confirms that, overall, respondents were attentive in their attempts to classify health conditions in terms of protection under the Act. On the other hand, deafness, para/quadriplegia, and mental retardation received the highest support for protection under the ADA and represent the core of the ‘‘yes’’ evaluations. On the scatterplot these items cluster together on the extreme right of the image, indicating that, overall,

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respondents had little hesitation in designating these health conditions as disabilities in terms of the ADA. While the same is true for epilepsy, Alzheimer’s disease, and autism there was, however, less agreement across the sample with respect to these health conditions. As the location of a health condition drifts away from the core to which it is attached the level of concordance diminishes. Similar to interpretations of discriminant analysis, the similarity between autism and deafness is significantly higher than between autism and baldness. But there was less consensus across the sample that autism qualifies as an ADA-protected disability.

A Hierarchy of Disabilities The location and concordance of health conditions suggest that a ‘‘hierarchy of disability’’ frames the evaluations made by survey respondents (Tringo, 1970; Antonak & Livneh, 1991). Those conditions that effect sensory losses (e.g., blindness and deafness), mobility health conditions, or health conditions that affect cognitive function are evaluated as more disabling than psychological/mental or chronic illnesses. Horne and Ricciardo (1988) found that this hierarchy has remained relatively stable over time, for both children and adults. Thomas (2000) notes that Tringo’s hierarchy ‘‘remains firmly entrenched’’ 30 years after his groundbreaking report (p. 1156). Health conditions that are primarily physiological were found to have high concordance as ADA-protected disabilities. Health conditions with the highest degree of agreement, which include deafness, quad/paraplegia, muscular dystrophy, ALS, spina bifida, Parkinson’s disease, and multiple sclerosis (MS), form a tight cluster on the far right of the scatterplot. These health conditions received high levels of support, consensus, and affirmation with respect to protection under the ADA from the survey respondents. Interestingly, most of the above health conditions often result in a loss of mobility and can require the use of wheelchairs or other assistive mobility devices. Longmore, P. (2009, personal communication) noted that among the disabled, wheelchair users were accorded elite disability status. In one study Olkin and Howson (1994) found that ‘‘wheelchair users’’ was the response given 58% of the time when subjects were asked to describe what they think of when asked about a disabled person. Likewise cognitive health conditions with physiological roots were also given high concordance in the HCA. Mental retardation, Down syndrome, and traumatic brain injuries neatly fall within the ‘‘yes’’ cluster and show similar levels of consensus across survey respondents.

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Most psychological/mental and chronic illnesses fall nearer the midpoint of the diagram indicating the evaluations of respondents showed far less consistency. In fact, with few exceptions (e.g., cystic fibrosis, schizophrenia, and PTSD) psychological and chronic illnesses did not receive the necessary levels of support to be considered disabilities protected by the ADA when ‘‘regarded by’’ survey respondents. Goffman (1963) in his seminal work (see below for more detail) listed mental disorders under the type of stigma entitled ‘‘blemishes of individual character’’ indicating a predisposition to believe that individuals with mental illnesses can choose to be well, but are deviant in their morals. While the psychiatric professional community has done a great deal to educate people about the organic cause of many psychological disorders, some people still believe it is a matter of willpower or strength of character to overcome these disorders (Overton & Medina, 2008). The qualitative data collected during debriefing sessions indicate survey respondents perceived physical health conditions to be more valid and therefore more worthy of protection by the ADA than mental health conditions. Sample comments include: I think it’s interesting you had psychological disorders on there. I personally wouldn’t consider those a disability.

and Physical disability is more important than mental.

Such statements when combined with the quantitative results indicate that the designation of a health condition as either physical or mental does have an effect on people’s perceptions of its status under the ADA. Results indicate physical and cognitive health conditions are ranked higher with respect to the ADA than psychological or mental health conditions.

Dimensions of Stigma An alternative interpretation of the scatterplot might be provided by incorporating various dimensions of stigma. The word stigma was originally used by the Greeks to describe an external bodily sign, usually a brand, placed on an individual as a permanent indication of moral failing. Criminals, traitors, and slaves were labeled with a symbol indicative of their stigma to forewarn others of their ill repute. Erving Goffman (1963) developed a more comprehensive definition of stigma in today’s terms. When an individual has

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an attribute (physical trait or moral characteristic) that challenges society’s assumptions of what is normal or expected, he/she will be stigmatized. Goffman acknowledges that the identification and application of stigma is rarely foolproof. That is, both false positives and false negatives emerge from the stigmatization process. Goffman defined these errors in perception as the gap between our assumptions of what an individual is expected to be, called the virtual social identity, and the characteristics that an individual actually possesses, called the actual social identity. Because of this gap in perception, the stigmatized individual is subsequently treated as one to be avoided, oppressed, or abused (Goffman, 1963). While Goffman’s work predates the ADA by several decades, the disparity between one’s virtual and actual social identities falls squarely in line with the ‘‘regarded as’’ prong of the ADA’s definition of disability (prong 3). Goffman defined two variations of stigmatized individuals, (1) those who are discredited by virtue of having a readily apparent disability and (2) those who are discreditable by having a disability that is hidden, but may be revealed at any time. Goffman talks at great length about the importance of visibility of a stigma on social interaction and how it shapes social identity. In addition Goffman identifies three dimensions of stigma: (1) blemishes of the body which include physical disability and deformity; (2) blemishes of individual character; and (3) ‘‘tribal’’ stigmas associated with race, nationality, or religious identity. Subsequent research offered differing numbers and kinds of dimensions at play in evaluating disabilities. Shears and Jensema (1969) indentified six dimensions: visibility, communication disruptiveness, social stigma, reversibility of prognosis, level of incapacity, and difficulties in daily living. Jones and his colleagues (1984) also identified six unique dimensions of stigma that influence social interaction: concealability, course, disruptiveness, aesthetics, origin, and peril. Liora Schmelkin (1982) also offers a multidimensional typology of stigma. In a re-evaluation of Tringo’s data she identifies three continua of disability: (1) visible to invisible, (2) organic to societal, and (3) tolerant to intolerant.

Concealability Each typology suggests that the visibility of the disability plays a central role in the social reception of disability. In fact, invisible disabilities are often dismissed, ignored, or minimized by the medical establishment when individuals go in for treatment or diagnosis (Banks & Kaschak, 2003). ‘‘Creeping paralysis,’’ as MS used to be called, was considered a mental

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condition caused by hysteria until the late 20th century (Banks & Kaschak, 2003). Conditions such as chronic fatigue syndrome, fibromyalgia, and multiple chemical sensitivity are still not taken seriously by many medical personnel, employers, or social contacts (Banks & Kaschak, 2003). While it is common for critics to believe that the invisibility of a disability allows a person to escape the sort of stigmatization that attaches to individuals whose disabilities are visible, people with invisible disabilities face other forms of rejection, humiliation, and social disapproval once they ‘‘come out’’ and request accommodations (Davis, 2005). Did members of our sample evaluate health conditions as ADA-protected disabilities based on the visibility of the health condition? For the purposes of this study, we defined visibility and invisibility more concretely to aid our interpretation of the scatterplot results. A visible disability is defined as a health condition that is visibly salient in regular day-to-day activities and where little confusion exists in the minds of nondisabled observers as to the health condition of the disabled individual. Examples of these types of disabilities could include paraplegia, quadriplegia, cerebral palsy, dwarfism, Down syndrome, severe Parkinson’s disease, and blindness. An invisible disability will be defined as a health condition that is not readily understood by visual confirmation alone. It is a health condition that is capable of being hidden or concealed and while momentary events may make the disability apparent; these events lack the day-to-day consistency of a visible condition. Examples of these types of disabilities could include chronic illnesses such as lupus, MS, cystic fibrosis, HIV/AIDS, and most psychological disorders. In evaluating the cluster scatterplot we find that of the 19 items found in the ‘‘yes’’ cluster to the far right of the scatterplot, 11 or 58% are visible health conditions. Within the ‘‘no’’ cluster at the far left, only one (obesity) is visible, whereas 21 or 95% of the health conditions that comprise the ‘‘no’’ cluster are invisible health conditions. In addition to the quantitative data, we collected qualitative data in the form of post-survey administration commentary. Comments made specifically about the visibility of a health condition provide additional support that the concealability of health conditions is an important influence on whether or not a health condition was ‘‘regarded as’’ an ADA-protected disability. One community group participant spoke about the importance of having visual confirmation to know that a disability is real. when I think of ADA I think of the visual thing that I see and there were things on [the survey] that you cannot visually tell if it’s a disability and therefore I couldn’t rank it because I’m tuned in to the visibility of disabilities.

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During a discussion with another community group, a young woman with a disability confirmed her experience with nondisabled people and their need for visual confirmation. She explained how it was difficult to defend using a handicap parking space when among nondisabled observers because she is young and her disability is invisible. I don’t use mine [disabled parking tag] very often, but I have a handicap. I have a disease that y if I walk for a certain length of time the veins in my legs burst so I have to park closer and I have gotten yelled at before.

It is this response that reveals an underlying prejudice people feel against invisibly disabled persons because they are not considered ‘‘legitimately’’ disabled. In response, this specific respondent forgoes using her parking accommodations to eliminate the threat of negative feedback.

ORIGIN Each of the typologies reviewed above includes some notion of the origin of the health condition. Goffman identified a second type of stigma – blemishes of individual character – to denote the role individuals play in the acquisition of the stigma. For Goffman, blemished character was the result of ‘‘weak will, domineering or unnatural passions or treacherous and rigid beliefs’’ (Goffman, 1963, p. 4). Examples included mental disorders, addictions, alcoholism, and suicide attempts. Similarly, Schmelkin (1982) hypothesizes that a continuum exists between organic/physiological disabilities on the positive end and interpersonal/ societal disabilities on the negative end. Organic disabilities are those tied to the physical body of the impaired person. Interpersonal disabilities represent violations of social norms or a failure of self-constraint (cf, Hirschi’s (1969, 1977) social control theory for an interpretation). For Jones et al. (1984) origin refers to the cause of the mark (disability) or how it came to be. Assessment of origin could include differentiating between congenital and noncongenital health conditions or an individual’s role in the acquisition of his or her health condition (Jones et al., 1984). As can be seen in Fig. 2, origin played an important role in the perceptions of survey respondents. Most nondisabled people grow up believing that disability is deviance and bodily perfection is the norm (Stone, 1995). Accordingly, nondisabled people can place the blame upon the stigmatized through the ‘‘Just World Hypothesis’’ (Lerner, 1980). The ‘‘Just World

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Hypothesis’’ is a theory that describes how nondisabled individuals derive comfort by believing that because we live in a world where people generally get what they deserve, a disability must have been brought on by or deserved by the disabled individual due to bad behavior or sin. The Just World Hypothesis is a rationale that protects nondisabled persons from considering the prospect of their own vulnerability and allows them a mechanism for erasing guilt over inaction or lack of empathy. In an even more active fashion, it can provide a justification for prejudice, exclusion, or discrimination against their disabled counterparts (Jones et al., 1984). The Just World Hypothesis provides an illogical but comforting philosophy that the human psyche can use to dismiss the harsh reality of a fragile body in an unpredictable and potentially harmful world. Because of this blame placing rationale, research has shown that an impaired individual is treated better in social interactions when he or she is judged not to be responsible for their own condition (Jones et al., 1984). Our study data echo that sentiment. Respondents indicated by their quantitative responses and in their qualitative comments that they feel any condition that may be the result of poor decision-making or related to a lifestyle choice should not be considered a disability worthy of ADA protection. In fact the data showing this particular dimension’s influence on people’s perceptions are the strongest data by far. The frequency analysis in Fig. 1 indicates attitudinal clarity for a lack of support for alcoholism, drug addiction, obesity, HIV/AIDS, emphysema, and eating disorders. The cluster scatterplot (Fig. 2) shows extreme polarity along the horizontal axis between organic health conditions and the various forms of addictions. Complementary evidence found in respondent commentary indicates strong feelings regarding the origin of a disability. The qualitative data also show origin influences the respondent’s perceptions about what is a disability worthy of ADA protection. Origin was spoken about 16 times in the course of discussion or in the written comments included on the survey instrument. Respondents revealed dramatically different attitudes about a health condition item based on the perception of it being congenital, something that developed later in life but was still ‘‘caught,’’ or acquired through accident through no fault of the disabled individual and something that was internally acquired or selfinflicted. Items most often discussed in the context of these themes were alcoholism, drug addiction, obesity, eating disorders, HIV/AIDS, and to a lesser degree emphysema. Comments varied from merely dismissive to downright passionate that our study would even suggest health conditions

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perceived to be self-inflicted be considered as disabilities. A sample of comments include the following: I based my opinions off of genetic/accidental disabilities, not ones inflicted on the person by themselves; i.e. alcoholic, eating disorder. Substance abuse is not a disability. I don’t think that addictions are disabilities.

In response to a question posed in the discussion period, ‘‘are there any items on the list of possible health conditions you definitely would not consider a disability?’’ the response was direct and immediate, Alcoholic and drug addict because I just thought the more self-imposed it is the less it is a disability. Well I didn’t select as a disability something where you could use self-discipline to correct it like alcoholism. Alcoholism is one I found difficult. I think it’s something that can be corrected. My brother is an alcoholic and has been an alcoholic for years and it’s something that we then call him disabled and expect everyone to take care of him and I don’t think that’s right. I think we should have the self-discipline to correct our self-inflicted conditions.

Cause is just one element in the dimension of origin, however. Jones and colleagues introduced the full complexity and intricacy of blame within the dimension of origin saying we must also differentiate between the responsibility for causing a disability and for maintaining it (Jones et al., 1984). In discussions about health condition types and how those with disabilities should respond to their health condition, numerous respondents indicated it was the responsibility of the disabled to ‘‘take their medication’’ or ‘‘seek treatment.’’ Respondents’ comments echo the work of Parsons (1951) and the interrelation between ‘‘rights’’ and ‘‘obligations’’ of persons occupying the ‘‘sick’’ role. There is a certain disdain for individuals with a disability who do not attempt to remedy their situation.

CONCLUSIONS AND RECOMMENDATIONS Findings of the Study The results of this study support a variety of theories and themes from the sociology of disability. Quantitative and qualitative results showed that a hierarchy of disability exists when the general public attempts to interpret

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who qualifies under the ADA. Visible physiological health conditions were accorded higher rates of protection under the provisions of the ADA than invisible, psychological, or behavioral/self-imposed health conditions. Limitations of the Study The inductive exploratory nature of this study allows us to pick and choose theoretical frameworks that provide the ‘‘best fit.’’ Clearly, deductive hypothesis driven analyses are needed to test the veracity of our results. In addition, the sampling strategy utilized does render results nongeneralizable to the population as a whole. Sample demographics showed significant skew in the education level, age, and ethnicity/race of the respondents. In addition, because the debriefing discussions were en masse, respondents may not have been comfortable to fully express their views about disability. Opportunities for Future Research This study does provide some interesting prospects for future research. Future research could focus specifically on a single dimension of stigma (e.g., concealability or origin) in order to expand upon this study and test specifically for these dimensions using Likert-type attitudinal questions to see if one dimension proves more influential than others. In this day and age where people are cautious about revealing the nature of their attitudes toward disability for fear of divulging beliefs that are no longer politically correct, research needs to be ever mindful of creative ways to collect honest attitudes on sensitive topics (cf, Antonak & Livneh, 2000; Gething, 1994; Thomas, 2001; Yuker, 1986, for an overview on the threats to the validity of direct methods of measuring attitudes toward disability). Without a true understanding of how people perceive disability and individuals who have disabilities it is difficult to address the stigma that is still attached to disability in our society. Much can be done to further the study into how attitudes toward the disabled are formed, what those attitudes are, and how they affect social interaction between disabled and nondisabled persons in modern American society.

REFERENCES Antonak, R. F., & Livneh, H. (1991). A hierarchy of reactions to disability. International Journal of Rehabilitation Research, 14(1), 13–24.

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Antonak, R. F., & Livneh, H. (2000). Measurement of attitudes toward persons with disabilities. Disability and Rehabilitation, 22(5), 211–224. Bagenstos, S. R. (2000). Subordination, stigma, and ‘‘disability’’. Virginia Law Review, 86(3), 397–534. Banks, M. E., & Kaschak, E. (2003). Women with visible and invisible disabilities. New York, NY: Hayworth Press Inc. Barnes, C., Mercer, G., & Shakespeare, T. (1999). Exploring disability: A sociological introduction. Malden, MA: Blackwell Publishing Inc. Colker, R. (2005). The disability pendulum. New York, NY: New York University Press. Davis, A. N. (2005). Invisible disability. Ethics, 116, 153–213. Fine, M., & Asch, A. (1988). Disability beyond stigma: Social interaction, discrimination and activism. Journal of Social Issues, 44, 3–21. Gething, L. (1994). The interaction with disabled persons scale. Journal of Social Behavior and Personality. Special issue: Psychosocial Perspectives on Disability, 9(5), 23–42. Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. New Jersey: Prentice Hall. Hahn, H. (1993). Can disability be beautiful? In: M. Nagler (Ed.), Perspectives on disability (pp. 217–226). Palo Alto, CA: Health Markets Research. Hirschi, T. (1969). The causes of delinquency. Berkeley, CA: The University of California Press. Hirschi, T. (1977). Causes and prevention of juvenile delinquency. Sociological Inquiry, 47, 322–341. Horne, M. D., & Ricciardo, J. L. (1988). Hierarchy of response to handicaps. Psychological Reports, 62, 83–86. Jones, E. E., Farina, A., Hastorf, A., Markus, H., Miller, D. T., & Scott, R. A. (1984). Social stigma: The psychology of marked relationships. New York, NY: W. H. Freeman and Company. Lerner, M. J. (1980). The belief in a just world: A fundamental delusion. New York, NY: Plenum Press. Liachowitz, C. H. (1988). Disability as a social construct. Philadelphia, PA: University of Pennsylvania Press. Marks, D. (1999). Disability: Controversial debates and psychosocial perspectives. London: Routledge. Mayerson, A. B. (1992). The history of the ADA: A movement perspective. Berkeley, CA: Disability Rights Education and Defense Fund Publications. Mayerson, A. B. (1997). Restoring regard for the ‘‘regarded as’’ prong: Giving effect to congressional intent. Villanova Law Review, 42, 1–31, Rev. 587. Nagler, M., & Wilson, W. (1995). Encyclopedia of disability and rehabilitation (pp. 257–260.). New York, NY: Simon & Schuster Macmillan. Olkin, R., & Howson, L. J. (1994). Attitudes toward and images of physical disability. Journal of Social Behavior and Personality, 9, 81–96. Overton, S. L., & Medina, S. L. (2008). The stigma of mental illness. Journal of Counseling and Development, 86(Spring), 143–151. Parsons, T. (1951). The social system. New York: Free Press. Popovich, P. M., Scherbaum, C. A., Scherbaumand, K. L., & Polinko, N. (2003). The assessment of attitudes toward individuals with disabilities in the workplace. The Journal of Psychology, 127(2), 163–178. Schmelkin, L. P. (1982). Perceptions of disabilities: A multidimensional scaling approach. Journal of Special Education, 16(2), 161–177.

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Shears, L. M., & Jensema, C. J. (1969). Social acceptability of anomalous persons. Exceptional Children, 36(2), 91–96. Stone, D. L., & Colella, A. (1996). A model of factors affecting the treatment of disabled individuals in organizations. The Academy of Management Review, 21(2), 352–401. Stone, S. D. (1995). The myth of bodily perfection. Disability and Society, 10(4), 413–424. Thomas, A. (2000). Stability of Tringo’s hierarchy of preference toward disability groups: 30 years later. Psychological Reports, 86(3), 1155–1156. Thomas, A. (2001). The multidimensional character of biased perceptions of individuals with disabilities. Journal of Rehabilitation, 63(2), 3–10. Tierney, K. J., Petak, W. J., & Hahn, H. (1988). Disabled persons and earthquake hazards. Boulder, CO: University of Colorado Press. Tringo, J. L. (1970). The hierarchy of preference toward disability groups. The Journal of Special Education, 4, 295–306. Unites States Code. (1990). Titles I & V of the Americans with Disabilities Act of 1990. Pub. L 101-336, Section 12101, Washington, DC. Wright, B. A. (1983). Physical disability: A psychosocial approach (2nd ed.). New York, NY: Harper. Yuker, H. E. (1986). Attitudes towards disabled persons scale: Susceptibility to faking. Rehabilitation Counseling Bulletin, 29, 200–204. Yuker, H. E. (1988). The effects of contact on attitudes toward disabled persons: Some empirical generalizations. In: H. E. Yuker (Ed.), Attitudes toward persons with disabilities (pp. 262–274). New York, NY: Springer. Yuker, H. E. (1994). Variables that influence attitudes toward persons with disabilities: Conclusions from the data. In: D. Dunn (Ed.), Psychosocial perspectives on disability (pp. 3–22). Corte Madera, CA: Select Press.

PART III AT THE INTERSTICES OF MACRO AND MICRO

‘‘SIT HOME AND COLLECT THE CHECK’’: RACE, CLASS, AND THE SOCIAL CONSTRUCTION OF DISABILITY IDENTITY Deborah L. Little During the past three decades, there has been a mini revolution in the status and treatment of disabled people. Much of the credit for these social changes goes to the disability rights and independent living movements, two interrelated and overlapping struggles to eliminate the social, political, and economic barriers to full citizenship for disabled persons. Some writers have claimed that the future of the disability movement depends on the creation of shared disability identity and recruitment of a new generation of activists (Gill, 1997; Hahn, 1997). However, the disability population is uniquely difficult to organize, stratified as it is by disability-specific and medicalized divisions. The problem is not merely heterogeneity in the experience of impairment. The disability movement contains potential activists who have experiences of multiple or simultaneous oppressions. Disabled persons may share experiences of class, race, and gender oppression among others. Like other identity movements, however, the disability rights movement has been driven by the perspective and experiences of a subset of its population. In the early 1990s, disability studies scholars began to question the unitary focus of disability studies and the disability rights movement in the United States and Britain (Stuart, 1992; Vernon, 1999). Beginning in 2006, Disability as a Fluid State Research in Social Science and Disability, Volume 5, 183–202 Copyright r 2010 by Emerald Group Publishing Limited All rights of reproduction in any form reserved ISSN: 1479-3547/doi:10.1108/S1479-3547(2010)0000005010

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the annual U.S. Society for Disability Studies meetings offered an increasing number of panels on issues of race and disability. Certainly scholars and activists have recognized the enormous debt disability activists have to the civil rights movement, which functioned as a ‘‘master frame’’ within which to understand disability oppression. However, we have limited information on how disability rights activists incorporate issues of race or class into their recruitment activities. What happens to these other identities when activists try to create a unitary collective identity? We know that the issues of a movement often become the issues of one subset, particularly white middle-class activists, and this has been a criticism of the Disability Rights Movement. However, we know little about how competing identities and oppressions are actually handled during the framing work of constructing collective identities. That is to say, we know little about how movement recruiters deal with multiple identities among potential movement activists. The assumption seems to be that these identities merely disappear, at least in the eyes of recruiters, and that the failure to recognize intersecting identities and multiple oppressions becomes a source of dissent and fracturing of social movements. But there are other possibilities. Intersecting identities could be acknowledged and incorporated into the primary collective identity becoming an intersecting and unitary experience of oppression. Alternatively, intersecting identities could be used by movement recruiters to marginalize potential adherents who don’t become active – to explain away a failure in constructing the group. This chapter examines how questions of race and class were handled by staff of an independent living center (ILC) as they recruited potential disability activists and framed a shared disability identity among low-income, primarily nonwhite consumers of independent living services. I argue here that the recruitment and framing processes at this ILC were informed by conscious understandings drawn from the social model of disability and by largely unconscious structural schemas or taken-forgranted assumptions about race. The staff at this ILC actively sought to bring their clients to a shared disability identity and a shared belief that disability is a consequence of social, political, and attitudinal barriers (Little, 2010). For the most part the low-income class status of these consumers was integrated into this frame in a structural approach that linked barriers and discrimination against the disabled to poverty and poor economic outcomes. In contrast, however, staff used a cultural understanding of race to blame consumers who failed to demonstrate commitment to movement goals like independence or a belief in personal efficacy. These ILC disability activists

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integrated class into their framing of disability identity but relied on race to explain individual recruitment failures.

SOCIAL MOVEMENT FRAMES AND INTERSECTING OPPRESSIONS The disability movement is a new social movement (Fagan & Lee, 1997; Shakespeare, 1993) based on identity politics (Anspach, 1979). Activists seek material benefits, challenge cultural constructions of disability, and create new collective identities on the part of recruits. Mobilization in this status-based movement, as in other new social movements, has focused in part on cultural and symbolic issues of identity (Bernstein, 2005; Johnston, Larana, & Gusfield, 1994; Shakespeare & Watson, 2001). Statusbased movements challenge stigmatized identities that are externally imposed. Identities can be deployed strategically by movement activists and recruiters for multiple goals, including changing cultural representations of the group, gaining access to institutions, and/or transforming participants (Bernstein, 2005). We cannot assume that people with disabilities actually self-identify in terms of a shared disability identity (Finkelstein, 1993). For example, Watson (2002) reported, based on a small set of interviews, that many disabled persons explicitly refuse to claim a collective disability. Other researchers note that people with disabilities have neither the shared identity nor shared interpretation of grievances necessary for social movement formation, even though they may report common experiences of stigma and discrimination (Barnartt & Scotch, 2001; Fagan & Lee, 1997; Shakespeare, 1993). The disability population is uniquely difficult to organize because it is stratified by disability-specific divisions like those between visual, hearing, emotional, cognitive and physical disability, variations in onset date, the difference between hidden and manifest impairments, the segregation of the disabled into impairment specific communities, medical centers and charitable agencies, and the lack of adult role models for those growing up with a disability (Scotch, 1988). The existence of other social identities further complicates this diversity. While a focus on one type of oppression seems essential to the original success of an identity movement as it builds a collective identity (Campbell & Oliver, 1996), this unitary focus also leads to fracturing and dissent. The history of the second stage women’s movement clearly demonstrates this problem.

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The disability movement has had two interrelated components, often referred to as the Disability Rights Movement and the Independent Living Movement (Fleischer & Zames, 2001; Pfeiffer, 1993). While these two interrelated movements have had somewhat distinct goals (Barnartt & Scotch, 2001), they have often been referred to as two sides of the same coin, both necessary for disability rights. ILCs have been involved in the Disability Rights Movement since the 1970s (Shakespeare, 1993). They serve as central social locations for interactions between people with different types of impairments. Centers have been compared to the black churches of the civil rights movement or the consciousness raising groups of the women’s rights movement (Barnartt & Scotch, 2001) in terms of their function as social movement recruitment organizations. These types of spaces are ones in which solidary identities can develop away from the physical and ideological control of those having power (Polletta & Jasper, 2001). Framing amplification theory in social movement research explains the processes by which social movement actors interpret relevant events and conditions in ways that will mobilize potential movement followers (Snow, Rochford, & Burke, 1986). The collective action frames produced in these processes constitute a shared meaning and common definition of the situation upon which activists rely. Frame amplification often requires characterizing shared events or conditions as injustices, rather than misfortunes (Snow et al., 1986). Recruiters diagnose social experiences as a shared experience of injustice. The construction of a collective identity can occur through framing processes (Hunt, Benford, & Snow, 1994). Social movement actors provide vocabularies and stories to link the personal identities of potential activists with the social movement collective identity (Benford, 1993). Activists working to create a shared identity engage in tasks that include the demarcation of clear boundaries between the subordinate or ‘‘challenging’’ group and dominant groups and the development of a shared consciousness about the challenges facing group members (Taylor & Whittier, 1992). They define boundaries for the group between those who experience the injustice (us), those who look on (observers), and those who cause the injustice or fight efforts to right the wrongs experienced by oppressed group members (antagonists) (Hunt et al., 1994; Taylor & Whittier, 1992). When recruitment is successful, potential movement members come to define themselves in terms of a collective identity, understood as ‘‘an individual’s cognitive, moral, and emotional connection with a broader community, category, practice, or institution’’ (Polletta & Jasper, 2001). In addition to a shared understanding of experiences and a collective

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identity, efficacy, the belief that one can produce desired effects by one’s actions, is necessary to successful movement recruitment (Benford, 1993; Klandermans, 1984; Snow et al., 1986). While the disability movement has focused on disability identity, many disabled people experience other forms of oppression as well. Yet disability scholars have been criticized for ignoring these other aspects of oppression in the lives of disabled people. For example, Fine and Asch (1988) noted that most scholars treat disability as a ‘‘master status’’ that eclipses all other identities. Only a few researchers have explored the experiences of those having intersecting identities of disability and gender (Deegan & Brooks, 1985; Fine & Asch, 1988; Gerschick, 2000; Morris, 1989) or disability and race (Stuart, 1992; Vernon, 1996, 1999). An exception is the larger literature on the intersections of disability and race in K-12 ‘‘special’’ education in the United States (Connor & Ferri, 2005; Ferri & Connor, 2005; Skiba, Poloni-Staudinger, Gallini, Simmons, & Feggins-Azziz, 2006). There is little work on the intersection of class and disability, even though people with disability are at great risk of poverty, in the Unite States and elsewhere (Batavia & Beaulaurier, 2001; Block, Balcazar, & Keys, 2001). Many theorists initially described the experience of more than one form of oppression as ‘‘additive,’’ in essence taking one form and adding it on top of another to achieve ‘‘double jeopardy’’ (King, 1988) or ‘‘simultaneous oppression’’ (Carby, 2005). For example, Stuart (1992) described the simultaneous oppression of black disabled persons in Great Britain. Hanna and Rogovsky (1991) wrote of the ‘‘plus’’ experience of disabled American women who confronted more stigma than disabled men. This understanding of oppression has been rejected by theorists who describe the multiple experiences of oppression as ‘‘interlocking’’ rather than additive (Collins, 1991). Collins (1991) argues that excluded groups should be viewed with a ‘‘both/and conceptual stance in which all groups possess varying amounts of penalty and privilege in one historically created system.’’ Vernon (1999) describes the shifting salience of different identities. Multiple oppressions are experienced ‘‘singularly, multiply and simultaneously depending on the context’’ (Vernon, 1999). Thus, people experience their social identities and experiences of oppression differently in different situations. The importance of particular identities shifts depending on the circumstance. The experience of multiple oppressions is neither always unitary nor additive. These analyses of the experiences of multiple oppressions do not address the framing question raised by the social movement literature. My paper is informed by Ellen Scott’s (2000) analysis of the role of race in the social movement work of two white feminist organizations explicitly engaged in

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antiracism work. Scott challenges the social movement framing literature for its assumptions that meaning construction is a linear and conscious process. She argues that collective action frames incorporate pre-existing beliefs and that activists carry culture and schemas that inform their action in ways that may not be clearly or consciously available to them. Thus, as activists craft meaning they are guided by consciously created meanings linked to movement goals and by taken-for-granted assumptions grounded in their own cultural context and structural location (Scott, 2000; see also Taylor & Whittier, 1992). Members of the organizations studied by Scott carried two understandings of racism in their minds, an individualized understanding based on prejudice and a structural understanding based on institutionalized patterns of unequal treatment. Members consciously relied on the structural understanding to shape their efforts to hire women of color. The unconscious (individualized) understandings crept into efforts to understand tensions in the agencies as the culture changed with the hiring of more women of color.

METHODS This chapter relies on 15 months of ethnographic research in 2002 and 2003 at an ILC (which I call Midwest ILC) in an urban Midwestern county. The center I studied engaged in disability rights movement activities on a regular basis and consciously sought to recruit people with disabilities to movement participation. Midwest ILC is located in a large Midwestern urban area with a large nonwhite population. It provided the four core services required by its federal and state funders, that is, information and referral, peer counseling, independent living training, and advocacy. The Center was actively involved in local, state, and federal issues and participated in education and advocacy for its consumers. At the time I did this research, the Center was working on litigation and advocacy seeking alternatives to nursing home life for disabled persons. Midwest served more than 3,000 consumers per year and more than onethird participated in independent living skills training. Fifty-four percent of the consumers had a physical disability, while 15% had emotional impairments, and 13% had multiple disabilities. ILC clients are called consumers, a reflection of the grounding of the Independent Living Movement in the consumerism, self-help, and de-medicalization movements of the 1960s and 1970s (DeJong, 1983). The center population was representative of the

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community in which it was located. This urban community had a population that was 50% European American, 42% African American, 4% Hispanic or Latino, and 4% other races in the early twenty-first century according to the 2000 census. Sixty-eight percent of the consumers were African American, 27% were Caucasian, and 4% were Hispanic. The Center served more men (60%) than women in 2002–2003. The majority of ILC consumers were not employed. In this metropolitan area, 65% of nondisabled working age adults were employed compared with 45% of disabled working age adults. The staff resembled the consumers in terms of race and gender. ILCs are peer organizations, and most employees either had a current impairment or had been disabled in the past. Several staff members were former consumers of the independent living training course. All staff met Center criteria for living independently themselves, and all were able to discuss their own disabilities and the disability experience with ease. Midwest ILC chose to work on recruitment for the disability rights movements while teaching independent living skills. Training was offered in class settings to small groups of 12–20 working age disabled adults. During a 15-month period, I gathered data through participant observation using the extended case method (Burawoy, 1991). I use this method in an analysis of the construction of meaning through the framing processes described by social movement theory (Eliasoph & Lichterman, 1999). The extended case method is one in which existing theories are reconstructed; this research reconstructs social movement framing analysis while elucidating the process of creating a collective disability identity. My data here are drawn from field notes on classes on independent living skills, staff meetings, and outside functions planned by the ILC, formal agency documents, and staff and consumer informal unstructured interviews during fieldwork.

CONSTRUCTING A COLLECTIVE IDENTITY Disabled persons came to Midwest for aid with material problems. Most sought assistance with housing, either seeking affordable units or help modifying properties to make them accessible. The ILC helped with these questions, but their goal was much larger. The assistant director noted that the majority of consumers had no concept of the type of ‘‘independence’’ required to live independently. Thus, Midwest began their services with education about independent living. The staff gave every consumer a copy of the ‘‘Consumer Handbook’’ that described the mission of the ILC to

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empower people with disabilities to ‘‘achieve’’ independence through ‘‘participation, education, and self-determination’’ by promoting ‘‘dignity, well-being and choices.’’ These written materials define independent living as: the ability to participate fully in society and exercise personal control over lives. Control is based upon the ability to make informed choices of various options thereby minimizing reliance on others in making decisions and in performing everyday activities.

This meaning of independent living was introduced to consumers multiple times during independent living classes. Creating a collective identity and producing a feeling of efficacy were the largest challenges faced by ILC staff. The former was difficult because of the range of impairment experiences among the consumers. The latter was difficult because many consumers had been socialized to their disability within medical and educational institutions that taught them to be compliant and accommodating. ILC workers created a feeling of shared identity by essentially ignoring race and gender differences while representing individual disability-related experiences and emotions as common to all disabled persons. For example, Dionne, a staff member with congenital blindness responded as follows to a woman who expressed concern that she felt and saw things differently since her stroke as follows: That’s because you’re still adjusting, learning to cope. They say people who get their disability later in life find it harder to cope; to adjust y As a child I was happy. But when I grew up enough to know that I couldn’t do everything other people do, I went through all those feelings for a very long time. People say it’s different if you’re born with it, but we all have the same feelings.

Staff encouraged consumers to share individual experiences of stigma, exclusion, paternalism, and discrimination and then reframed them in terms of a common experience of disability oppression. They asked consumers to clarify their different functional needs and abilities to encourage assertiveness in claiming benefits and rights. For example, a facilitator asked group members what they would need in the way of accommodation in an apartment: ‘‘There are different kinds of disabilities so we need different types of accommodation. For example, a deaf person needs a flashing light, not a doorbell. What do you need, Don?’’ Don, who is visually impaired, said, ‘‘An intercom.’’ She asked Mike, who has difficulty speaking. He gestured. She said, ‘‘Mike needs a sign, pad and pencil.’’

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ILC activists thus worked to acknowledge the heterogeneity of impairment while building a group identity. This was accomplished by recognizing functional differences between impairments while interpreting experiences, whether of discrimination, stigma, pity, accommodation needs, or over protectiveness, in common terms. Gender differences in the disability experience were only acknowledged in the context of a risk of sexual exploitation of women. Racial differences in the disability experience were neither discussed by staff nor sought from consumers.

INTEGRATING CLASS AND DISABILITY The vast majority of people with disabilities in the world are poor and disempowered (Charlton, 1998). While the connections between income and disability are complex, it is clear that disability is highly correlated with poverty in the United States (Batavia & Beaulaurier, 2001; Beresford, 1996; McKernan & Ratcliffe, 2005). Census data from 2000 (Wang, 2005) show that families with a disabled family member had a significantly higher poverty rate (12.8%) than families where all members were nondisabled (7.7%). The relationship between class and disability entails many elements. Jenkins (1991) notes the connection between disability and a need for economic resources, disability and the limitations on family income, disability and marginal status in the labor market, and class and the incidence of disability. In essence, there is a connection between poverty and the creation of impairment as well as between impairment and the creation of poverty (Stone, 2001). However, the Disability Rights Movement has been a middle-class movement and disability politics has been a politics divided by social class (Russell, 1998). Indeed, if we examine the two strands of the disability movement, we can see that the movement divides along the lines of severity of impairment and class (DeJong, 1983). Broadly speaking, the Disability Rights Movement demands civil rights, including employment rights, and the Independent Living Movement demands the assistance needed to ensure independent living in the community. These benefits are accessible to the poor only through social benefits in the United States. One commentator has suggested that the Disability Rights Movement, grounded as it is in a ‘‘rights’’ frame, ignores class and capitalism because it is framed against the norm of the able-bodied (working middle class) white male (Davis, 2001). Nonetheless, empirical evidence demonstrates that there have been struggles over ‘‘class-based’’ issues like government benefits in the

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protests of disabled activists during the last three decades of the twentieth century (Barnartt & Scotch, 2001). Most consumers at Midwest ILC shared a low-income economic class location. The majority relied on public disability benefits like Social Security Disability or Supplemental Security Income. Many received Medicaid benefits. The ILC explicitly acknowledged the low-income economic class status of consumers by teaching about eligibility for social security, SSI, Medicaid and Medicare, federally subsidized housing, and special utilities programs for low-income persons with disabilities. The program binder given to each student in the independent living classes had large sections of written material on these types of benefits. According to staff, other ILCs in nearby suburbs did not serve the same type of consumer. One staff member said sarcastically that the consumers in an ILC located in a wealthier white suburb called their center to complain about snow on the sidewalks. In contrast, Midwest ILC staff worked to get some consumers off of the sidewalks and streets and into accessible housing. At times, Midwest seemed to be a poverty program as much as a disability organization. The clearest recognition of the class location of consumers came in discussions of wage work. Staff carefully and repeatedly told consumers that wage work in and of itself was not the measure of independence or the exercise of disability rights. This was true even of staff who expressed a belief that those with skills should work, rather than‘‘collect a check.’’ Most staff, however, recognized the link between income benefits and health care in U.S. social policy. Without a program of national health care, many disabled people are forced to turn to government income support to have health care. Thus, when a consumer inquired about work or training, the staff member often asked whether the individual’s Medicaid benefits would be affected. In addition to concerns about health care, staff recognized the different functional abilities, education, skills, and work experience of the average consumer. The majority of consumers, like disabled people nationwide (Batavia & Beaulaurier, 2001), had a high school education or less. However, the barriers to wage work were not explicitly linked to education or skills in discussions with consumers. Nor were they linked to impairment. Instead, staff and consumers both told cautionary tales about the state vocational rehabilitation program where disabled clients were herded into the ‘‘three F’s’’ of work offered to disabled persons, or ‘‘food, filth, and flowers.’’ Ironically, the small work training program offered by the

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ILC also steered some clients into ‘‘filth’’ while others went a step up to clerical/receptionist work. This program reflected both the ‘‘skills’’ of consumers and the structural realities of the urban job market for disabled persons. While 67% of nondisabled working age adults were employed in this area, only 45% of disabled working aged adults had jobs. Thus, while ILC staff helped any consumer who expressed interest in vocational training or job search, they recognized that the opportunities were limited for these consumers. In the case of class, staff used a structural understanding of the class oppression facing consumers. The multiple oppressions of class and disability were perceived as interconnected under one ‘‘overarching system of domination’’ (Collins, 1991). The expectation that adults will engage in wage work to achieve independence is built into the cultural milieu in which the center operated. It is part of the hegemonic ideology about adulthood and citizenship in the United States (Fraser & Gordon, 1994). However, staff explicitly rejected this interpretation of independence and justified other choices including reliance on disability benefits. In one use of the concept ‘‘collect a check,’’ a staff member described the choices facing disabled persons in this way: Like in school, they don’t really teach you about employment. They kind of expect for you to go out and collect your SSI or SSDI and all that stuff. But as a person, I don’t have to sit at home and play video games if I’m collecting SSI. I can get out there and do something with my life if I choose to. You know, like I said, I cook, baking bread y Too often blind people or people with disabilities are stereotyped as sitting at home, collecting a check and guess what most of us do? Sit and home and collect the check. It’s like, come on now, when are you going to wake up and do something for you? When are you going to stop waiting for somebody else to do for you?

In her interpretation, common to ILC employees, the choice was not wage work or benefits. It was passivity or self-determination. Indeed, ILC staff helped consumers get public and private disability benefits on a daily basis. Moreover, consumers were encouraged to join advocacy actions for MICASSA benefits (Medicaid payments for personal assistance provided in the home rather than institutions) and for local transit passes. It was assumed that the ILC’s clients were low income, in need of social benefits, and deserving of those benefits because of their disabled status. Thus, the low-income class status of most consumers was incorporated into the disability frame and social supports for disability were described as legitimate disability rights demands.

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DISTINGUISHING RACE AND DISABILITY In contrast to the structural understanding of class, ILC staff interpreted race in cultural and individualistic terms. Debts to the Civil Rights movement were acknowledged in discussions of the history of antidiscrimination laws. Some facilitators of the independent living classes exhorted consumers to agitate for their rights as African Americans had done. For example, during one class an African-American staff member encouraged consumers to speak out against mistreatment in nursing homes. The facilitator said, ‘‘But again I want to stress to you that we have a choice. I talk to people and they say ‘they’ll make it worse for me’.’’ A consumer interrupted, saying, ‘‘And they will!’’ The facilitator continued, ‘‘So you do need strong support, but it’s important to say something. I liken it to the civil rights movement. Just because you are a person with a disability does not mean you don’t want to live in your own home, drive your own care, ride on the bus. We are Americans. I understand about being afraid, but if you band together with others, what can they do to all of you?’’

Here the classic metaphor of the Civil Rights Movement, getting a seat on the bus, was used to appeal to consumers’ desires to live in the community. However, other similarities between the disabled and African-American experiences of oppression were not examined at all. ILC staff did not explore shared structural aspects of race and disability discrimination. They did not integrate the two oppressions into a common frame. Instead, race was either ignored or used to explain or blame disabled consumers for a failure of efficacy. Social movement researchers have described many of the tactics used to create a belief in efficacy, or the belief that people can produce desired results and avoid undesired ones through their actions (Bandura, 2000; Klandermans, 1984). These strategies stress the power of the group to accomplish desired results. Common discursive tactics include references to past successes, exhortations about the necessity of standing up for oneself, and portrayals of involvement as a moral obligation (Snow et al., 1986). Midwest ILC staff used several of these tactics in their efforts to move consumers to action. One prominent feature of identity movements is their desire to challenge the dominant cultural codes that justify the subordination of members of the group. As Shakespeare (1993) notes, the fact of a social movement is itself a challenge in the case of disabled persons because the action contradicts dominant cultural views that the disabled are passive. Thus, efficacy itself becomes a central part of the meaning of the Disability Rights Movement. The movement is the message. One staff member put it bluntly to consumers

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when she told them, ‘‘Nothing bothers me more than to call someone in a year only to find out that they are in the same place, having done nothing to change their lives.’’ This statement reflected the staff’s broad understanding of efficacy. It is consistent with the notion that the exercise of choice and self-determination by disabled people is itself a challenge to the dominant cultural and attitudinal oppression. Thus, the ILC promoted an efficacy continuum in which personal action and collection action were both essential to disability rights movement participation. One staff member told the class, ‘‘‘I can do it myself!’ Those are the words I love to hear!’’ Another explained the necessity of participation in the disability rights movement during the following class interaction: Martha, a wheelchair user said, ‘‘I tried to take the bus yesterday. I waited 30 minutes and finally the bus came. The driver told me I couldn’t take it because the lift didn’t work. He told me to wait for the next bus. I waited another 15 minutes. Then the person with me paid $9 for a cab so we wouldn’t be late for my appointment.’’ Dionne, an ILC staff-member responded, ‘‘There’s an ongoing problem with DOT. Every time it happens we need to complain!’’ Martha said, ‘‘I am going to complain. My daughter is contacting DOT. I called my son’s father, who is a bus driver. We were just talking about it (here in class at the ILC), and her I experienced it!’’ Don, another ILC consumer, interjected, ‘‘I had an experience too with a guy. He waited 6 hours for a bus on a Saturday.’’ Dionne responded, ‘‘Previous IU classes have made this a class project. They have written letters. Another way to advocate is to go to the monthly meeting on DOT and Para transit issues. Another good place is the city council. We have to get our voices heard. Many times we just sit back and take stuff. But that is not the correct approach. Martin Luther King and Rosa Parks didn’t just sit back. We must be our own advocates. No one is going to stick up for us. If you really want to do something, you can do something, no matter where you at.’’

Many class facilitators told consumers that no one would help the disabled but themselves. They encouraged consumers to take action in groups and find strength in numbers. Consumers were taught administrative procedures for asserting rights and chided when they failed to act. Conversely, staff publicly congratulated consumers whenever they took action for themselves, whether it was a blind consumer insisting on carrying her own tray at a buffet, a consumer in a wheelchair writing to the transit authority to complain about poor bus service, or consumers attending a local protest or rally.

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However, when consumers remained ‘‘passive’’ as interpreted by center employees, the failure was often attributed to ‘‘black culture.’’ Many researchers have examined beliefs about the continued black/white equality gap in the United States, finding that respondents explain inequality because of either (1) personal attributes of individuals or (2) aspects of the broader social structure (Hunt, 2007). Working age African Americans are more likely to have any type of disability and to have a severe disability (Waldrop & Stern, 2003). There is ample research reporting the health disparities between whites and African Americans (Smedley, Stith, & Nelson, 2003). Many of the links between race and disability are structural, rooted in institutional patterns of systemic racial and economic discrimination. Yet prejudice also continues, albeit in new and often unconscious forms. Contemporary racism includes feelings of antiblack animus, antiblack stereotypes, and general resistance to government policies that might help blacks (see Quillian, 2006 for a recent review of the literature). Survey data continue to show that while one-third of whites attribute black/white inequality in income, jobs, and housing to discrimination, almost half attribute the inequality to a lack of motivation or willpower on the part of blacks (Krysan, 2008). Thus, the dominant explanation among whites for black/white inequality in the United States is cultural rather than structural. While not espousing the same level of support, studies show that greater numbers of blacks and nonwhite Hispanics also support motivational explanations for black/white inequality (Hunt, 2007). While the social model of disability espoused by the Disability Rights Movement and the understanding of impediments espoused by the Independent Living Movement include the kind of systemic social and political barriers to wage work that explain the low-income class location of disabled persons, there is little in these frames to explain links between race and disability. The dominant connection between African Americans and people with disabilities is historical; disability movement activists credit the Civil Rights Movement as a ‘‘master frame’’ for modeling demands for equality, discourse, and effective protest tactics. U.S. disability movement activists regularly note their debt to the social movement of blacks, as described earlier. However, this research indicates that recruiters will unconsciously draw from dominant cultural schemas as they construct meaning in recruitment activities. Scott (2000) found activists drawing from pre-existing understandings of race to explain difficulties in their antiracism work. Here, activists drew from pre-existing racial understandings to explain failures in movement recruitment.

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Sometimes the reference to black culture was coded through references to an urban underclass as in the following explanation offered by one staff member: A lot of people don’t become successful because they continue the behavior they had before they became disabled. We see that a lot here in inner cities. So, we try to do what we can for them, but if they’re not going to change their behavior, then the chance of their success is very slim y To me, independent living is something you’ve got to feel inside. I mean, you have to want to be independent. And a lot of people have that continuous welfare mentality of collecting a check and a lot of things done for them and it just doesn’t work.

This explanation for a failure of efficacy and self-determining behavior in potential recruits implies a racialized cultural understanding of the failure. ‘‘People’’ don’t become ‘‘successful’’ because they continue their ‘‘welfare mentality of collecting a check’’ which they have learned in urban inner city communities, according to this analysis. Black inner city culture causes the failure of disability movement recruitment efforts, leaving people dependent, on welfare, collecting a check, and having things done for them. Like dominant white explanations for continued black/white inequality, this explanation blames continued passivity of some disabled persons on the lack of motivation among blacks. At other times the explanation for a perceived lack of self-determination was specifically, rather than implicitly, racial. In this class, a black female facilitator lectured black male consumers as follows: There are whites and blacks here. You see a 5 year old white kid and he’s very articulate, you see the same black kid and he can’t say much – but both can be taught the same thing. We aren’t taking care of our people. The black woman needs someone with a brain between his ears (she points to her own head, ears). You are fathers, pick up a book, educate yourselves – we’re not taking care of business.

While the topic here was black fatherhood, the causal analysis again implicitly blamed black culture for a failure to act or ‘‘take care of business.’’ This ILC focused on getting disabled consumers out of nursing homes because many younger people with disabilities lived in these institutions. One staff member attributed this to black culture as well, saying, We have a gentleman who is 55 in a nursing home and he has seizures and he’s been there 10 or twelve years and his sister is his guardian and she said that he was gone, one time and he left and went to Northland Mall. And I thought well maybe he wanted to go to Northland Mall, what is wrong with that? It’s, I think, attitudes of others, especially here in the city. It seems like, I don’t know if it’s the culture, the African-American culture, or the city culture or what, but it’s like if you’re not capable of being on your own then you

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belong in a nursing home. The city has 45 nursing homes and I would say that at least 20 to 30 percent of those people shouldn’t be in there if not more.

In the most explicitly racial explanation, a staff member attributed individual failure at participating in the disability right movements to black culture, saying: I don’t know if it’s a culture thing that there aren’t that many African-Americans in the movement. I mean, I would say the consumers that really want to be involved and actually be involved and would like to become employees and/or volunteer for years to get to that point where they prove themselves are not in the African-American community. You would think it would be, because of the people we are serving, 90% of our population are African-American. I would say they are not the majority of people who really want to get involved and pitch in and that’s a cultural thing.

Race served as a taken-for-granted assumption and a set of hidden meanings to explain consumer’s behavior. Rather than linking the experiences of multiple oppressions, as this ILC did with class and disability, race was interpreted in individualistic and cultural terms. Pre-existing and common beliefs in the alleged deficits of black culture were mapped onto the goals of the disability rights movement and offered up as explanations for the failure of the movement to attract large numbers of African Americans. A cultural understanding of race served to explain the perceived passivity of individual consumers. Collecting a check in this sense reflected a ‘‘welfare mentality’’ of passivity, fear, and unwillingness to become independent. Barriers confronting people with disabilities were laid at the feet of the black community as well, in that parents and family were variously described as overprotective, pitying, exploitative, and uncaring.

CONCLUSION This research is limited by its focus on only one site. Nonetheless, it suggests the need for more empirical work on the construction of collective disability identity and more theoretical work on intersectionality and social movement framing. In this case, the social movement recruitment organization saw a structural connection between class and disability. Class oppression became, in the minds of ILC staff, part of a social model of disability in which social and political barriers to wage work or social benefits reduced the economic life chances of people with disabilities. The two oppressions intersected and the framing of collective identity became one in which the consequences of

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disability and class oppression were linked and movement goals included improvement in the material well-being of disabled people. In contrast, ILC staff did not see a connection between oppression on the basis of race and oppression on the basis of disability. There was no overarching structure of oppression (Collins, 1991) under which staff could easily connect the two experiences. Moreover, these movement activists understood disability to be a master status, and their goal was to bring all people with disabilities to awareness of this identity. This did not mean that race was merely ignored, however. Instead, the racism that is part of most Americans’ ‘‘cultural toolkit’’ (Swidler, 1986) became an unconscious but very alive part of the explanation for recruitment failures. This is a troubling finding. It suggests that disability scholars and disability activists need to do more work to understand the lived experience of nonwhite disabled people and better theorize the intersections between disability and race. In addition, this research helps to reconstruct social movement frame amplification theory by expanding our understanding of the ways in which multiple identities enter into frames, shaping the construction of collective identity. It suggests that the problem of single identity movements centered on a stigmatized social identity may not be that the movements ignore the multiple oppressions experienced by some movement members. Instead, the problem may be that unconscious stereotypes about these other identities keep organizers from recognizing the causes of recruitment failures. Without a better understanding of intersectionality, or the overarching system of domination, recruiters will not be able to avoid the painful divisions of recent identity movements.

ACKNOWLEDGMENTS This research was funded by the Robert Wood Johnson Foundation Scholars in Health Policy Research Program.

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ACTIVISM, MODELS, IDENTITIES, AND OPPORTUNITIES: A PRELIMINARY TEST OF A TYPOLOGY OF DISABILITY ORIENTATIONS Rosalyn Benjamin Darling and D. Alex Heckert Several years ago, one of the authors (Darling, 2003) proposed a typology of orientations toward disability based on opportunity structure theory in sociology. In order to determine whether this theoretical, literature-based typology could be tested empirically, the authors conducted an exploratory study involving two convenience samples of people with disabilities. The results of this study generally supported the typology and suggested directions for future research. In this chapter, we briefly review the development of the typology, report the findings from our study, and discuss their implications and importance. Why is a typology of orientations needed? Certainly, developers of typologies need to be cautious about ‘‘pigeonholing’’ people, which tends to promote stereotyping and a lack of attention to individual differences. However, ideal types have both theoretical and practical values. From a theoretical standpoint, the existence of categories provides a basis for delineating empirical possibilities and a starting point for research into the correlates, antecedents, and effects of various categorical realities. Disability as a Fluid State Research in Social Science and Disability, Volume 5, 203–229 Copyright r 2010 by Emerald Group Publishing Limited All rights of reproduction in any form reserved ISSN: 1479-3547/doi:10.1108/S1479-3547(2010)0000005011

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For example, if one type includes individuals who internalize societal stigma toward disability and another includes those who reject such negative views, studying those who typify these positions would shed light on the personal characteristics and social interactions that serve as filters of social norms. Previous research on race, for example, has shown that most AfricanAmericans do not have low self-esteem, even though the norms of the larger society favor whiteness. As Rosenberg and Simmons (1971) and others have shown, African-Americans tend to interact with race-based reference groups that reject the norms of the white majority. Similar processes no doubt operate in the case of other stigmatized groups, such as people with disabilities. Applications of knowledge based on research using a typology of disability orientations would be valuable as well. If research indicated, for example, that certain categories of individuals with disabilities were more likely to have high self-esteem or to participate in desired social activities, practitioners and policy makers might engage in activities to assist individuals in the acquisition of resources that enabled them to become part of those categories. If disability activism were the goal, and certain types were shown to be associated with activism, movement leaders might benefit from this information, because it would assist them in locating potential recruits for the Disability Rights Movement. As Putnam has written, ‘‘Knowing why some people experiencing disability support and become involved in disability rights issues and others do not is critical to understanding disability politics’’ (2005, p. 188). In order to have practical applications, a theoretical typology would need to be operationalized. As Putnam argues, Despite the inherent intellectual and scientific challenges of developing, testing, and validating a disability identity measure, the venture seems important. y Only by empirical investigation will knowledge about disability identity move forward. We know that disability identity has been important to collective action, but we have not been able to describe or quantify it in a way that guides our intellectual understanding of disability. (2005, p. 204)

The instrument to be described in this chapter makes a major contribution to addressing the methodological challenge of operationalizing the concept of disability orientation and the related concept of disability identity, as well as providing a means for studying the association between these concepts and other variables. For example, elsewhere (Darling & Heckert, 2010), we have reported on some interesting associations between age and disability

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orientation in the same dataset used in the quantitative analysis described later in this chapter. Additionally, the instrument we developed could be valuable in further quantitative research that determined the actual prevalence of various orientations among people with disabilities in the United States today, as well as the correlates of these orientations. The instrument could also be used in selecting subjects for qualitative research that examined the antecedents and consequences of different orientations. Finally, the instrument might be useful to practitioners in determining appropriate intervention strategies for various individuals who use their services.

BACKGROUND The Concept of Disability Orientation The concept that guides the present research is orientation toward disability. This concept is related to, but broader than, the concept of disability identity that has driven some previous research in this area (see, e.g., Gill, 1997; Putnam, 2005). The concept of identity or self suggests a person’s definition of him or herself and usually includes both cognitive (‘‘I am a person with a disability’’) and evaluative (‘‘I am proud to be a person with a disability’’) components. Most research on disability identity has included some associated behavioral (role-playing) variables in addition to descriptions of the content of the self-concept of people with disabilities. For example, Anspach (1979), Stryker (2000), and others have used the concept of identity politics to suggest the interaction between a person’s identity and activism to promote positive social change for individuals who share that identity. Thus, activism can be regarded as one of the behavioral outcomes that may result from a particular identity. Another variable that appears to be associated with disability identity is model or perspective. In the past, most orientations toward disability were based on a medical model, and people with disabilities were commonly categorized on the basis of whether or not they had ‘‘accepted’’ and adapted to their limitations (see, e.g., Solnit & Stark, 1961). More recently, a social or sociological model, which shifts the focus from the individual to the larger society, has become popular (see, e.g., Oliver, 1996). In some writings (e.g., Hahn & Belt, 2004; Linton, 1998), adherence to a social model has been linked to activism. Certainly, the belief that disability is a social,

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rather than a personal, problem is compatible with activities intended to create social change. However, not all people with disabilities share a common perspective, and whether most individuals with disabilities today have rejected the medical model in favor of a social one is an empirical question. Because research and practice need to address diverse segments of this population, the inclusion of models that reflect the entire range of disability orientations is important. The concept of disability orientation that will be used in this chapter, then, includes the following components: disability identity, level of disability rights activism, and adherence to either a medical or social model of disability. Thus, disability orientation includes both cognitive/evaluative (self/identity) and behavioral (role-playing) variables, along with beliefs about whether disability is a personal or a social problem. The nature of the relationship among these variables is an empirical question. For example, identity may be an independent variable that produces varying levels of activism, and identity itself may depend on the model to which a person subscribes. To understand the direction of effects, a researcher would have to design a longitudinal study. Such a study is beyond the scope of this chapter, which relies on a ‘‘snapshot’’ of individuals at a single point in time. However, questions about the nature of the process are important ones and suggest directions for future research, which will be discussed in more detail later in the chapter.

The Relationship between Orientation and Access to Opportunities Opportunity structure theory in sociology (Cloward & Ohlin, 1960) posits that individual outcomes are related to opportunities for integration into the larger society and its norms, or, alternatively, into smaller subcultures. This theory, in turn, derives from anomie theory (Merton, 1949), which is based on the premise that most people in society desire the same goals. The theory would suggest that those individuals who have access to normative social and occupational roles would be less likely to identify with a disability subculture, because most people have internalized the values of the larger society. However, those who were unable to achieve such integration might choose alternative roles and identities if those roles and identities were available to them. About 30 years ago (Darling, 1979), one of the authors developed a typology of orientations among parents of children with disabilities. Interviews with families had suggested that these orientations centered on

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attempts to achieve ‘‘normalization,’’ or a lifestyle that was similar to that of people who did not have disabilities, confirming the tenets of opportunity structure theory. (This use of the term, normalization, is a little broader than its common usage in the intellectual disability literature.) Although this typology originally was based on a sample of parents, its relevance to adults with disabilities at the time was made clear in the previously mentioned article (Darling, 2003). During the past several decades, largely through the efforts of the Disability Rights Movement (see, e.g., Charlton, 1998; Shapiro, 1994; Stroman, 2003), the identity of at least some individuals with disabilities has changed, and a stigma-based identity has been replaced by ‘‘disability pride’’ (see, e.g., Linton, 1998). With its genesis in the Disability Rights Movement, the newer identity has been rooted in the social model and often has been accompanied by activism. Proponents of the newer identity/ model reject the norms of the larger society that label disabilities as failings and persons with disabilities as morally inferior to ‘‘normals.’’ Swain and French (2000) describe an ‘‘affirmation model’’ that views disability as part of a positive social identity and rejects older models that view disabilities as personal tragedies. They argue that disability is increasingly being recognized as a normal form of human diversity rather than as a condition that needs to be changed or eliminated. People with disabilities who adopt this view have been characterized as ‘‘proud, angry, and strong.’’ The affirmation model clearly rejects the notion, based in anomie theory, that everyone in society accepts the dominant cultural norms with regard to abilities and appearances. If, in fact, the affirmation model is rapidly replacing older views, the normalization-based typology described above may be obsolete. However, the actual orientations of people with disabilities today remain an empirical question. Although many disability activists clearly adhere to the newer model, large numbers of individuals with disabilities who are not part of recent social movements may continue to accept the older views and regard themselves as victims of personal misfortune. Thus, a typology of current disability orientations would need to include both the normalization and affirmation models, along with any other orientations that were found to exist. In order to develop such a typology, the first author reviewed a considerable amount of the recent literature about and by people with disabilities (Darling, 2003). This literature included numerous autobiographical accounts (e.g., Kisor, 1990; Kuusisto, 1998; Mairs, 1996), media accounts for both lay and professional audiences,

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writings by movement activists, and published studies of various disabled populations by social scientists and other academic researchers. This literature review suggested that orientations to disability do indeed reflect differential access to opportunities to achieve either (or both) normalization or (and) the alternative, affirmative definitions promoted through disability culture and disability rights movements. The following section will provide a context for the development of an instrument to measure disability orientations by reviewing the development of the typology on which the instrument was based. The Literature-Based Typology Table 1 depicts the literature-based typology. This table is based on the finding that two primary orientations to disability appear to exist. The first, or ‘‘cultural majority,’’ orientation includes acceptance of and/or access to generally accepted norms about appearance and ability, based on cultural values of attractiveness and achievement. The minority, or subcultural, orientation involves acceptance of and/or access to alternative norms about appearance and ability, based on a value of diversity. Access and acceptance are not necessarily coexistent in the same individual. In some cases, individuals may have access to opportunities for success in the societal mainstream but may choose to reject mainstream norms in favor of identification with the minority. Conversely, individuals who do not have opportunities for inclusion in mainstream society may identify with the Table 1.

A Typology of Disability Orientations. Norms/Goals of Cultural Majority

Normalization Crusadership Affirmation Situational identification Resignation Apathy Isolated Affirmation

Norms/Goals of Disability Subculture

Access

Acceptance

Access

Acceptance

þ  þ/ þ  þ/ 

þ þ  þ þ  

þ/ þ þ þ  þ/ 

  þ þ   þ

Notes: þ, Has access or accepts; , does not have access or does not accept; þ/, may or may not have access.

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majority nonetheless. However, individuals may have access to the minority subculture but may not choose to identify with it or may accept its norms even though they are isolated from it. Each of the types will be described in greater detail later, along with illustrative examples from the literature review. (These descriptions are from Darling, 2003.) Normalization The literature suggests that individuals who adopt this orientation are those who accept the norms of the larger society with regard to appearance and/or ability and who manage to achieve lifestyles that are similar to those of individuals of their social status who do not have disabilities. Those with disabilities that are not highly visible may even choose to pass as ‘‘normal.’’ Typically, these individuals have supportive families and employers and have sufficient financial resources to purchase other supports that may be needed, such as accessible housing. They are likely to welcome rehabilitation efforts by professionals, as well as technological advances such as cochlear implants that allow them to function more ‘‘normally.’’ Conversely, they may reject ‘‘stigma symbols,’’ such as white canes or orthopedic appliances. Most of their social interactions are likely to center around individuals without disabilities. A good example of this orientation is Henry Kisor (1990), a deaf journalist working for a major newspaper who functions well orally, is married to a hearing person, and whose social life is almost exclusively within the hearing world. Contrary to the ideal-typical orientation suggested above, Watson (2002) presents data that suggest that at least some who consider themselves ‘‘normal’’ do not accept the stigma that typically accompanies the normalization perspective. Their disabilities were not the most salient aspects of his respondents’ identities, and they did not view them with pride; however, they did not deny their disabilities either. These findings suggest that actual disability orientations may be more complex than the ideal types described here. Crusadership As described in an earlier work (Darling, 1979), crusaders are those who accept the norms of the cultural majority but who do not have access to a normalized lifestyle. Consequently, they become involved in the disability subculture in an attempt to achieve normalization. Their activities may include self-advocacy, as well as involvement in larger social movements, in order to create normalization-promoting social change. Typically, when

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their crusades were successful, these individuals would adopt a normalization orientation. A recent example of a crusadership orientation would be the late actor, Christopher Reeve. After his paralysis in an equestrian accident, Reeve was prominent in the media as a campaigner for research into a cure for spinal injuries. Although his celebrity afforded him access to a wealth of resources, the visibility and extent of his disability prevented him from achieving the normalization he desired. Consequently, he espoused a medical model, rather than simply affirming his new identity as a person with a disability.

Affirmation Like crusaders, affirmers identify with the disability subculture in order to achieve their goals. However, unlike crusaders, their identification is not temporary. The goal for these individuals is not normalization. Although they may seek access to the right to participate fully in society, they continue to view their disability as their primary identity and to view their disability in positive terms. Some writers have referred to this orientation in terms of ‘‘coming out’’ as a person with a disability (see, e.g., Gill, 1997), and parallels between queer and disabled identities have been noted by others (see, e.g., Sherry, 2004). Disability pride seems to include two aspects, self-esteem and separation. Russell (1994) likens disability pride to the black pride that arose from the Civil Rights Movement. She writes, ‘‘like Malcolm [X], disabled people must learn to celebrate our own bodies and respect who we are’’ (p. 13). The second aspect involves the rejection of assimilation or the notion of a ‘‘melting pot.’’ Gill (1994) argues that ability and disability do not exist on a continuum and that people who are labeled by society occupy a separate and distinct social status. People who do not share this experience of oppression cannot identify as disabled. She writes, ‘‘politically and psychologically our power will come from celebrating who we are as a distinct people’’ (p. 49). Many of the leaders of the Disability Rights Movement seem to share this view, and disability movements and the rise of disability culture clearly have contributed toward viewing disability in a positive light. However, the view is not new; in an article written almost 40 years ago, Anspach used the concept of ‘‘identity politics’’ to describe the connection between political activism and the repudiation of societal conceptions of disability (Anspach, 1979). More recently, Hahn and Belt (2004) have found positive disability identities in a sample of disability rights activists.

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Situational Identification Some people are chameleons. They seem to be able to maintain multiple identities or to adopt whatever identity seems appropriate or expedient at any given time. In some cases, these identity shifts simply reflect ambivalence, or the inability or unwillingness to choose between competing norms. Thus, some disabled individuals who have access to full inclusion in society may choose normalization when interacting with individuals without disabilities but may reject norms of ‘‘fitting in’’ to society when interacting with their disabled peers. Further, Gilson and DePoy (2004) suggest that the nature of a disability may make it more salient in some situations than in others. As one of their respondents remarked, ‘‘I deal with my disability when it is shoved in my face like when I have to do something in a practical way or I have to fill out some papers and then I get on with being just a human being’’ (p. 20). Resignation Some individuals who desire, but are unable to achieve, normalization do not have access to the disability subculture either. They may be illiterate or living in poverty or in isolated rural areas without access to a computer. Such individuals are more likely to be exposed to the norms of the majority culture than to those of the disability subculture, because of the dominance of the majority view in the media and in society in general. Thus, they do not have the resources to achieve normalization but also lack opportunities for learning about affirmation. This population is perhaps the least studied group of people with disabilities and the least likely to be empowered to speak for itself. In one of only a few studies of African-Americans with disabilities, Devlieger and Albrecht (2000) suggest that the inner-city individuals they interviewed were more focused on issues of poverty and racism than they were on their disabilities. They write, ‘‘In a way, one could say that in the inner-city cultural context, there is no time to deal with a disability’’ (p. 58). In some ways, their respondents had more of a normalization than a resignation orientation, because they did not define themselves primarily in terms of their disabilities. However, they did seem to accept society’s negative definition of disability, based on a medical model. Apathy To include all logical possibilities in the typology, one would need to acknowledge that some individuals might simply be apathetic or completely uninformed. This category might include people with significant mental

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illness or intellectual disability. Such individuals might be truly unaware of the norms of either the majority culture or the disability subculture. This lack of awareness would be unrelated to their access to opportunities for normalization. Isolated Affirmation Finally, some individuals who do not have access to the disability subculture may, on their own, arrive at an affirmation orientation. Sociological knowledge about the processes of socialization would suggest that such an outcome is highly unlikely. However, the possibility of innovation based on ideas derived from other social movements or related social situations cannot be excluded. The founders of the Disability Rights Movement would exemplify this type. Early leaders of the movement such as Ed Roberts advocated affirmation long before it was a common disability orientation. Today, isolated affirmers would be likely to join the disability subculture upon learning of its existence. Empirical Evidence Some evidence suggests that the affirmation categories may represent a larger share of the population today than they did in the past. A national survey conducted in 2000 (National Organization on Disability, 2000) found that among the disabled population as a whole, 47% shared a sense of common identity with other people with disabilities. This percentage had increased by seven points from a similar survey conducted in 1986. However, people who identify with other people with disabilities do not necessarily accept the norms and goals of the disability subculture. Many of these individuals may simply see themselves as part of a group of fellow sufferers who are not able to achieve normalization. Further research is needed to clarify the overall orientations of individuals with various identities. The affirmation literature is probably the most rapidly growing body of writing in the field of disability studies today. The proponents of the affirmation orientation have tended to be well educated and very adept at communicating their message. Much of this literature presents a dualistic view, namely, one of a world in which a social (or affirmation) model is replacing the older medical (or normalization) model. Such a view, suggesting an ‘‘in-group’’ and an ‘‘out-group,’’ is not uncharacteristic of social movements in general and serves a valuable purpose in promoting the rights of people with disabilities. However, sociologists need to understand

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all segments of the disabled population. Whether the orientations of most people with disabilities have changed since the advent of the Disability Rights Movement is an empirical question. The typology presented above was intended as a framework for guiding future research in the disability field. Large-scale surveys are needed to determine whether and in what proportion the orientations described above are present in the population of people with disabilities today. Discovering the correlates of each type also is an important research topic. For example, the nature and visibility of an impairment, as well as the time of its acquisition (present at birth or acquired later in life) might be important variables in disability orientation. Some evidence suggests that those with more severe impairments (National Organization on Disability, 2000) and those with congenital impairments are more likely to identify with the disability community. As one individual has written, ‘‘What have I lost? I was born with y my impairment. y I y am very happy with who I am’’ (Higgins, 2002). This writer goes on to suggest that those who acquire their impairments later in life might be more likely to experience a sense of loss and to identify with the medical model. The field of disability studies today includes a mix of empirical research and ideological writings. Few studies have attempted to link these strands of work. As a result, although the ideological literature continues to expand, we know very little about the actual identities, roles, and beliefs of different segments of the population or about how those orientations develop. Studies that describe the disability experience as it exists for large numbers of people in the world today are essential if we are to have a true sociology of disability. Such research would help researchers and practitioners understand the social forces that shape choices and orientations, and, ultimately, the quality of life of various sectors of the population of people with disabilities.

THE STUDY In order to begin the process of subjecting this literature-based typology to empirical testing, the authors conducted a preliminary study with both qualitative and quantitative components. The purpose of the study was to learn whether the proposed typology reflected actual orientations toward disability and to determine whether these types could be measured. The methods and findings are discussed below.

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Methods Qualitative Component The first phase of our research consisted of a qualitative study involving depth interviews with a convenience sample of 10 individuals, secured through contacts with disability organizations. All of these individuals lived in small cities or rural areas. The interviews were conducted by the first author over a period of three months and lasted about two hours each. The respondents were all middle-aged or older adults. Some had lifelong disabilities, whereas others had acquired their disabilities more recently. The interview schedule consisted of questions relating to:  Disability identity (e.g., ‘‘Is your disability an important part of who you are as a person?’’)  Social/medical model (e.g., ‘‘Do you ever wish that someone would find a cure for your disability?’’)  Activism (e.g., ‘‘Are you familiar with the Disability Rights Movement?’’ ‘‘Have you ever engaged in any activities to fight for your rights as a person with a disability?’’)  Access (to both mainstream and disability-related activities) (e.g., ‘‘Have you ever been employed?’’ ‘‘About how often do you get together with friends or family?’’ ‘‘Do you have access to the Internet?’’ ‘‘Do you belong to any disability-related organizations?’’)  Other disability-related areas suggested by the respondent. Because an analysis of the data from this phase of the research supported the literature-based hypothesis that a variety of orientations toward disability exist, we proceeded with the quantitative component of the study. Quantitative Component Based on our literature review and interview results, we developed a survey, the Questionnaire on Disability Identity and Opportunity (QDIO). The questionnaire was divided into two parts. The first part consisted of a 130-item Likert scale with 5 response choices to measure the various dimensions of orientation to disability. Because the ‘‘direction’’ of the items was intentionally varied to avoid response patterning, in some cases a person with a particular attitude might agree with one item and disagree with another item measuring the same attitude. The second part consisted of 14 questions that identified demographic and behavioral characteristics

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of the respondents. The instrument was designed to measure the following dimensions discussed earlier in this chapter:  Access (to mainstream society and to the disability subculture)  Orientation  Identity (pride vs. stigma/shame)  Model (social vs. personal)  Role (activism vs. passivity) Although some individuals who have access to an activity may choose not to participate in it, for the purposes of our research, we operationalized access as participation. Clearly, a person can participate only in those activities to which he or she has access. Questions about participation were included in the second part of the QDIO, as well as in scale items. Examples of questions in this area include: ‘‘About how often do you engage in social activities outside of your home, like visiting friends or eating out in restaurants?’’ and ‘‘Please check the activities in which you participate at least once a month’’ (followed by a list of both mainstream activities and activities indicating participation in disability-related organizations). Identity was operationalized through various scale items, including the following, among others: ‘‘I don’t think of myself as a person with a disability,’’ ‘‘My disability is an important part of who I am,’’ ‘‘I am proud of my disability,’’ and ‘‘I try to hide my disability whenever I can.’’ As these examples suggest, items reflected both disability pride and shame. Model was operationalized through scale items such as the following: ‘‘All buildings should be accessible to people with disabilities,’’ ‘‘I feel sorry for people with disabilities,’’ and ‘‘Doctors and other medical professionals know what is best for people with disabilities.’’ As these examples suggest, some items suggested adherence to a social model, whereas others suggested adherence to a personal or medical model. Finally, activism was operationalized primarily through the following question: ‘‘Have you ever participated in a demonstration, written a letter to your congressional representative, or engaged in another activity to try to increase the opportunities available to people with disabilities?’’ Passivity was suggested by lack of activism as well as by scale items such as, ‘‘The most important thing for people with disabilities is to learn to accept what they cannot change.’’ Normalization was expected to be reflected in agreement with items indicating access to mainstream society, rejection of disability pride and the social model, and a lack of activism. Affirmation was expected to be reflected in agreement with items indicating access to the disability

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subculture and acceptance of disability pride (rejection of stigma), belief in the social model, and activism. Crusadership was expected to be reflected in agreement with items indicating lack of access to mainstream society and acceptance of stigma, the personal model and activism. Finally, resignation was expected to be reflected in agreement with items indicating lack of access to both mainstream society and the disability subculture, acceptance of stigma and the personal model, and a rejection of activism. Isolated affirmation and apathy were not expected to be found in a sample drawn from the participants in disability-related organizations, and situational identification could not be measured by a survey conducted at a single point in time. However, these orientations would need to be considered in future research. The QDIO was distributed anonymously with the assistance of four Centers for Independent Living, a social club and two assistance programs for people with disabilities, a rehabilitation facility, a posting on a disability website, and an Internet listserv with subscribers with disabilities. A total of 390 usable forms was returned from respondents in at least 6 states representing all regions of the United States. The data from these forms were analyzed using the techniques of factor and cluster analysis (using the Likertscale items only), as well as cross-tabulations between the clusters that emerged and the demographic and behavioral items in the QDIO. The results of this analysis are reported in the next section.

Results Qualitative Component Although our qualitative sample was small, we were able to identify the orientations of normalization, affirmation, crusadership, and resignation. The following quotes are illustrative: Normalization: [Do you think of yourself as a person with a disability?] Not at all. [Why not?] I function real well. y I have a lot of family and my children, and there’s nothing wrong with any of them. They don’t consider me with a disability either.

Affirmation: [What effect has your disability had on your life?] (If I didn’t have a disability) I think I would be a totally different person. y I am a better person. y I could never be that way if I were able-bodied.

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Resignation: [What effect has your disability had on your life?] Well, I just love to be out and among people, and it breaks my heart when I can’t. I just y I know my limits but I wish I didn’t have them, but, praise the Lord, he knows best.

Crusadership: [Response to a follow-up question about the nature of an organization created by the respondent] We’re going to get all these doctors, hopefully, and we’re going to give them an office booklet that explains the disease y , and, hopefully, it’s going to make it a lot easier for people that have the disease, because the problem is the people who are supposed to know something about this stuff, they don’t know anything about it. They don’t know how to handle these people. y Five years, we’re gonna have a treatment.

None of the qualitative responses suggested orientations that had not been considered previously. Because these orientations seemed to reflect those in our literature-based typology, we ended this phase of the study after interviewing 10 individuals and began the quantitative phase. In the section below, we describe the results of our analysis of the data from the QDIO. Quantitative Component (This and the following section are based on Darling & Heckert, 2010, pp. 134–135.) The 388 respondents in our sample ranged in age from young adults to those over 65, although younger adults predominated (median and modal ages were in the 18–35 year age group). The sample included people from large, urban areas, as well as from small towns and rural areas; however, the majority were from small towns and small- or medium-sized cities. A little more than half (54.3%) of the respondents were men. The most common type of impairment in the sample (46.3%) was mobility related. Other impairments represented included vision (19.5%), hearing (16.5%), speech (16.2%), cognitive (25.7%), and cosmetic (4.9%) impairments. Obviously, some respondents had more than one impairment. Like many samples of people with disabilities, these respondents generally had low incomes (68.6% had household incomes of under $25,000 a year) and were underemployed (only 20% worked full time or were retired). The large majority of the sample (83.6%) was European American, 8.3% identified themselves as African-American, and the rest identified with other racial backgrounds. A minority (17.5%) were college graduates, and the rest had less education. A large number (44.3%) had their disabilities since birth, an additional 24.3% had their disabilities for less than five years, and the remaining 31.4% fell somewhere in between.

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Analysis of the data suggests that respondents had widely diverging orientations toward disability. The 30-item scale was analyzed using exploratory factor analysis (EFA) to determine whether the items could be meaningfully grouped. The results of the factor analysis are reported in the next section. The data were then analyzed using k-means cluster analysis, using the factors identified by EFA, to determine whether respondents could be grouped in meaningful ways. In addition, clusters were cross-tabulated with responses to the behavioral and demographic items on the questionnaire to determine whether the types that emerged correlated with other characteristics in expected ways. Exploratory Factor Analysis Examination of the scree plot for EFA of the 30-item QDIO indicated that a four-factor solution was appropriate. Because we had reason to suspect that the four factors would be correlated, we ran the EFA using oblique rotation as well as varimax (orthogonal) rotation. Since the results were virtually identical with regard to which items loaded on the four factors, we present the results from the varimax rotation in Table 2. The four factors that emerged were: Disability pride, Exclusionþdissatisfaction, Social model, and Personal/medical model. Based on item analysis, a few items were dropped for conceptual reasons or in the interests of parsimony (Preacher & MacCallum, 2003). Reliability analyses revealed Cronbach’s alpha levels (shown in Table 2) that were respectable for three of the subscales (Disability pride ¼ .78; Exclusion/dissatisfaction ¼ .73; Social model ¼ .72) and marginally acceptable for the Personal/medical model subscale (alpha ¼ .63) (DeVellis, 1991). Although the alpha coefficients are not as high as desirable, we judged them to be acceptable given the relatively small number of items in the subscales and the fact that we used self-report administration of the survey, which may have presented challenges for some of the participants. Although the survey was designed for self-report, we suspect, based on anecdotal evidence, that a small number of participants from the rehabilitation facility that contributed to the sample may have had low levels of literacy. This may have resulted in some misunderstanding of survey items. Cluster Analysis The cluster analysis was based on the four factors derived from the factor analysis, sorting the sample according to common factor affinities. A sixcluster solution was determined to be the most interpretable. These clusters largely reflected four of the types in the theoretical typology described

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Table 2.

Summary of Exploratory Factor Analysis Results for QDIO Using Varimax Rotation (n ¼ 388). Alpha Factor 1 Factor 2 Factor 3 Factor 4

Disability pride I am a better person because of my disability My disability is an important part of who I am I am proud of my disability My disability enriches my life

.78

Exclusion/dissatisfaction My disability limits my social life My disability keeps me from working In general, I am satisfied with the quality of my life (reversed) I am often excluded from activities because of my disability

.73

Social model Lack of accessibility and discrimination by employers are the main reasons why disabled people are unemployed It is not easy for people with disabilities to be treated as ‘‘normal’’ People with disabilities need to fight for their rights more than nondisabled people do The biggest problem faced by people with disabilities is the attitudes of other people All buildings should be accessible to people with disabilities I am familiar with the Americans with Disabilities Act (ADA) and think it is a good law I am familiar with the Disability Rights Movement and support its goals

.72

Personal/medical model If I had a choice, I would prefer not to have a disability I feel sorry for people with disabilities I wish that someone would find a cure for my disability Doctors and other medical professionals know what is best for people with disabilities People with disabilities need to learn to adjust to living in a world in which most people are not disabled

.63

.531 .613

.160 .131

.129 .091

.016 .072

.635 .706

.033 .059

.194 .209

.103 .069

.014 .043 .486

.194 .170 .064

.677 .594 .496

.010 .133 .178

.073

.408

.556

.066

.069

.590

.017

.019

.031

.430

.163

.118

.038

.555

.097

.092

.082

.596

.127

.036

.095

.537

.064

.093

.198

.398

.043

.039

.228

.427

.025

.021

.269

.213

.120

.346

.093 .219

.060 .311

.179 .319

.421 .416

.175

.002

.058

.474

.024

.124

.067

.353

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Table 2. (Continued ) Alpha Factor 1 Factor 2 Factor 3 Factor 4 I try to hide my disability whenever I can People should try to overcome their disabilities The most important thing for people with disabilities is to learn to accept what they cannot change

.042 .100

.072 .067

.351 .109

.406 .398

.135

.044

.120

.410

Eigenvalues % of variance

4.11 13.7

3.91 13.0

2.12 7.07

1.74 5.78

Note: Items loaded with each of the four factors are indicated in italics. Source: From Darling and Heckert (2010, p. 136).

above: normalization (30% of the sample, divided into two clusters as explained below), crusadership (21% of the sample), affirmation (11% of the sample), and resignation (16% of the sample), although not in all proposed dimensions. The remaining cluster (22% of the sample) tended to be neutral with regard to all four factors. Table 3 shows the cluster centers for each factor. The original typology included ideal types, which, like all ideal types in sociology, only approximate actual orientations. Consequently, we were not surprised to find that our respondents showed some response variability and were not ‘‘perfect’’ examples of the types they closely approximated. Cross-Tabulations Most of the demographic and behavioral items included in the questionnaire were significantly associated with cluster. The only items with no association were gender, race, whether respondents attended religious services, whether they talked on the telephone with friends and family, and the nature of the place where they lived (rural vs. urban). This finding is not surprising, given the lack of theoretical connection between any of these items and the variables being measured in this study. The other items were all significantly associated with cluster (chi squares with po.000 except for income, for which po.03). Table 4 shows the dominant characteristics of each cluster based on the cross-tabulations. As Table 4 suggests, cluster 4 showed no tendencies in the crosstabulations that were remarkable; rather, these respondents tended to fall somewhere in the middle on all items, just as they had on the scale items that determined the clusters. We suspect that this group either had difficulty in

Disagree/strongly disagree (4.17)

Agree/strongly agree (1.81)

Agree (2.02)

Agree/not sure (2.31)

Exclusion

Social model

Personal model

1 (Resignation)

Disability pride

Factor

Not sure (3.06)

Not sure/agree (2.83)

Disagree/strongly disagree (4.24)

Disagree/strongly disagree (4.13)

Agree/not sure (2.41)

Agree/strongly agree (1.77)

Not sure/agree (2.61)

Agree/not sure (2.26)

3 (Crusadership)

4

Agree/not sure (2.46)

Agree/not sure (2.22)

Not sure (3.05)

Disagree/not sure (3.62)

Cluster

Disagree/not sure (3.35)

Agree/strongly agree (1.84)

Disagree/strongly disagree (4.18)

Agree/strongly agree (1.61)

5 (Affirmation)

Cluster Centers and Their Meaning for Each Factor.

2 (Normalization II)

Table 3.

Agree/not sure (2.44)

Agree/not sure (2.42)

Disagree/strongly disagree (4.24)

Not sure/agree (2.67)

6 (Normalization I)

Activism, Models, Identities, and Opportunities 221

Unlikely to read disabilityrelated magazines

Most likely to attend disability-related meetings

Most socially active Most likely to engage in disability activism Most likely to use e-mail Most likely to visit disability websites Likely to visit other websites

Less socially active Most likely to engage in disability activism Somewhat likely to use e-mail Somewhat unlikely to visit disability websites Somewhat unlikely to visit other websites

Most likely to be employed full- or part-time (34.9%) Most highly educated (40.9% college graduates)

Younger

5 (Affirmation)

Most have disability since birth

4

Most have disability since birth

Mostly unemployed or students

3 (Crusadership)

Unlikely to visit disability websites Likely to visit other websites Unlikely to attend disability-related meetings Unlikely to read disabilityrelated magazines Highest income (po.029)

Most not mobility impaired Most have disability since birth Least need for assistance with ADLs Most socially active Least likely to engage in disability activism

Mostly students

Younger

6 (Normalization I)

Note: p-values for w2 values for all variables o.000, except for income (po.029). Full cross-tabulation results available upon request.

Lowest income (po.029)

Most not mobility impaired Somewhat likely to have acquired disability Least need for assistance with ADLs Somewhat socially active Least likely to engage in disability activism Somewhat likely to use e-mail Unlikely to visit disability websites Likely to visit other websites

Mostly mobility impaired Most have acquired disability Most need for assistance with ADLs Least socially active Least likely to engage in disability activism Most do not use e-mail Unlikely to visit disability websites Unlikely to visit other websites Unlikely to attend disability-related meetings

Unlikely to attend disabilityrelated meetings

Mostly students

Younger

Older

Mostly retired or unemployed Least educated

2 (Normalization II)

Cluster

Dominant Demographic and Behavioral Characteristics of Each Cluster.

1 (Resignation)

Table 4.

222 ROSALYN BENJAMIN DARLING AND D. ALEX HECKERT

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understanding the questionnaire or chose to respond in random ways. The inclusion in the sample of people with cognitive disabilities may account for this finding to some extent. However, because of the anonymity of respondents, we are unable to confirm or deny this possibility. Because this cluster was completely unremarkable, the following analysis will focus on clusters 1, 2, 3, 5, and 6 only. Discussion The factor and cluster analyses and cross-tabulations support the literaturebased typology of disability orientations to a large extent. Below, we describe each of the ideal types that emerged from our analyses and then compare them with respect to the components of disability orientation presented earlier. Normalization I (Cluster 6) This group is marked by a high level of inclusion in mainstream society. They are socially active and have the highest income of any of the clusters. They tend to be younger, and many are students. Although they have had their disabilities since birth, they are not very disabled, as indicated by their low level of need for assistance with daily activities. Although they use the Internet, they do not visit disability-related websites or participate in disability-related activism. However, they do not reject or deny their identity as individuals with disabilities. They do not strongly identify with either the social or the personal model. Normalization II (Cluster 2) This group is similar to the one above in that they are younger, they are included in mainstream society, and they are not very disabled. Similarly, they do not strongly support either the social or the personal model of disability and do not engage in disability-related activism. However, unlike the first normalization cluster, they are likely to have acquired their disability after birth and to reject an identity of disability pride. Affirmation (Cluster 5) Like the normalization clusters, this cluster shows a high level of inclusion in mainstream society and is the most likely to be employed. These respondents tend to be younger, and many have graduated from college. They are socially active and use both e-mail and the Internet, as well as

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attending meetings of disability-related organizations. They are the most likely of any of the clusters to engage in disability activism. They favor the social model over the personal model and are the most likely of any cluster to have an identity of disability pride. Most have had their disabilities since birth. Crusadership (Cluster 3) Although not as activist as the affirmation cluster, these respondents also prefer the social model and do engage in a considerable amount of disability activism. However, unlike the affirmation cluster, they are somewhat likely to be excluded from mainstream society and are mostly unemployed and less socially active. Most have had their disabilities since birth and have some disability pride. Resignation (Cluster 1) These respondents are the oldest of any of the clusters. They also are the least educated and have the lowest incomes. They are the most likely to be excluded from mainstream society and are the least socially active. They are the most disabled of any of the clusters and are likely to have acquired their disabilities later in life. They do not use the Internet and do not engage in disability activism. They were the most likely to agree with the personal model of disability and to reject disability pride. Although not predicted by the literature review earlier in this chapter, the emergence of two normalization clusters is not surprising. As the article by Watson suggested, some individuals who achieve normalization do not deny their identities as people with disabilities, an orientation that describes our second normalization cluster. However, others who achieve normalization (Normalization I) do appear to accept the societal norm of stigma and to reject the notion of disability pride. Interestingly, all of the clusters that had their disabilities since birth seemed comfortable enough with their identities to agree with items suggesting disability pride. Both clusters that had acquired their disabilities later in life, however, accepted the societal norm of stigma, as indicated by their rejection of disability pride. To summarize our findings relating to the major variables of the study, we developed a table characterizing each cluster accordingly. Table 5 compares the five orientations above in terms of four major variables: Identity (pride vs. stigma), Access (inclusion vs. exclusion from mainstream society), Model (personal vs. social), and Role (activism vs. passivity). We discuss the implications of this table in the text below.

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Table 5.

Normalization I Normalization II Affirmation Crusadership Resignation

Characteristics of Each Orientation for Four Variables. Identity

Access

Model

Role

Stigma Some pride Pride Some pride Stigma

Inclusion Inclusion Inclusion Exclusion Exclusion

No preference No preference Social Social No preference

Passive Passive Activist Activist Passive

Table 5 suggests that lack of access to opportunities for social participation may be a determinant of activism for those with a crusadership orientation. For the individuals in this category, activism may be a way of attempting to acquire opportunities for inclusion in mainstream society that are already available to those in the affirmation category. However, those in the affirmation category appear to be activists for more altruistic reasons, as they already have achieved inclusion for themselves. They may become involved and remain active in the Disability Rights Movement or disabilityrelated organizations as a way of showcasing their pride and creating social change for other people with disabilities. Lack of opportunities for social participation does not appear to be an impetus to activism for those in the resignation category. These individuals had the most significant disabilities of any of the clusters, and most had acquired their disabilities later in life. Perhaps they were too involved in issues of rehabilitation or coping to engage in activism. Activism, after all, is time-consuming and requires at least a minimal level of energy. Those who are older and who have less education also are less likely to use the Internet or to have access to the disability subculture described earlier in this chapter. Degree of disability also seems to have some bearing on activism. Interestingly, the most (Resignation) and the least (Normalization I and II) disabled clusters had the lowest levels of activism. As opportunity structure theory would suggest, those with less significant disabilities may be better able to ‘‘fit in’’ with mainstream society and, thus, to identify with mainstream norms rather than those of the disability subculture, whereas those with the most significant disabilities may not have access to either mainstream society or the disability subculture. Although the affirmation cluster had the highest level of disability pride, disability identity appears to be unrelated to activism in general. Rather, the primary determinant of identity seems to be whether or not one is born with a disability. People with lifelong disabilities learn from an early age to feel comfortable with their identity, whereas those who acquire disabilities later

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in life have already been socialized into the societal norm of stigma. This finding contradicts the expectation, based on our literature review and the qualitative component of the study, that all but those in the affirmation cluster would reject disability pride but supports the association reported by Hahn and Belt (2004) between positive disability identity and early age of disability onset. Thus, the presence of disability pride cannot be explained by adherence to the social model alone. One additional finding of this study did not strongly support our expectations. All of the clusters agreed to some extent with the social model (factor 3), although some (affirmers and crusaders) agreed more strongly than others. Perhaps most people with disabilities today have been exposed to the message of the Disability Rights Movement, or perhaps our measure needs to be refined to discriminate better among clusters. The personal model factor, which had the lowest alpha, may also need more refinement, although the clusters tended to be associated with it in predictable ways, with the affirmers disagreeing with it the most and the resigned agreeing with it the most. Thus, an understanding of disability orientation seems to involve all of the postulated elements: identity, access, model, and role. Model and role seem to be associated in predicted ways, whereas identity seems to depend more on whether or not one’s disability is acquired after birth than on model. Access appears to be associated with the presence or absence of activism in more complex ways. Those in the resignation cluster do not engage in activism, even though they lack access to opportunities for inclusion in mainstream society; yet, they also appear to lack access to opportunities for learning about activism. Clearly, further research, especially of a qualitative nature, is needed to establish the accuracy of the explanations offered here. In particular, future research needs to explore the processes through which people come to adopt various orientations toward disability. However, the findings of this study suggest that the process of becoming an activist depends to some extent on both personal (nature of the disability) and social (access to opportunities) factors.

CONCLUSIONS Our findings provide a limited test of the existence of the social model of disability and suggest that both the personal and the social models are present to varying degrees in various segments of the population of

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people with disabilities in America today. The study also raises some interesting questions about the interaction between opportunities and orientations. Opportunity structure theory appears to be supported in part by the research. The normalization clusters, which have access to mainstream society, seem to reject disability activism. The crusadership cluster’s activism and fairly strong identification with the social model may be motivated by a lack of opportunities for inclusion. The affirmation cluster appears to reject mainstream views of disability regardless of opportunities for inclusion because they identify strongly with the social model of the disability subculture. Finally, the resignation cluster, like Merton’s ‘‘retreatism’’ category, seems to consist of people who lack access to both mainstream society and to the disability subculture. Although the results of our study are promising, further research is needed to test our instrument and our findings with a randomly selected, representative sample. The convenience sample used here included an overrepresentation of young adults and of students, mostly from a large rehabilitation center. In addition, the sample included an overrepresentation of non-urban and low-income respondents. Nevertheless, the fact that the clusters were associated with most of the variables predicted by theory in a logical way, provides evidence of the convergent validity of the clusters. In addition, the fact that interpretable clusters were derived from the four factors generated from the factor analysis provides evidence that the four QDIO subscales are valid as well. In other analyses (Darling & Heckert, 2010), we found evidence of convergent validity, as age was negatively associated with disability pride and positively associated with exclusion, as predicted by theory. Regardless, a next step for future research would be to validate the QDIO with a larger and more representative sample of people with disabilities. The validated instrument would then serve as the basis for a large-scale study using a national or international sample to determine the proportion of people in the population who adhere to each of the orientations identified. The association of orientation with quality of life is also an important area for future research. In addition to further quantitative research, qualitative studies are needed to explain how individuals come to adopt various orientations and how these orientations may change over time in relation to the presence or absence of various interactional opportunities. Increased knowledge about the career paths of individuals with disabilities would be valuable for practitioners and policy makers in their work to increase opportunities for this population.

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Future research in this area would have important practical applications. In addition to increasing our knowledge about the population of people with disabilities, the QDIO could be used by practitioners to learn more about the disability orientations of particular individuals. Further research is needed to help us more fully understand the relationship between disability orientation and quality of life. The research reported here suggests that some orientations (normalization and affirmation) produce greater life satisfaction than others, perhaps because of more opportunities for inclusion in mainstream society. A better understanding of disability orientation might result in interventions to promote those orientations that are associated with a better quality of life. In addition, policy makers need to be aware of the diversity of orientations toward disability when developing legislation or programs. Social policy can increase or decrease opportunities for social inclusion. The research reported here represents a first step in broadening our knowledge in an important yet understudied area.

REFERENCES Anspach, R. R. (1979). From stigma to identity politics: Political activism among the physically disabled and former mental patients. Social Science and Medicine, 13A(6), 765–773. Charlton, J. I. (1998). Nothing about us without us: Disability oppression and empowerment. Berkeley, CA: University of California Press. Cloward, R. A., & Ohlin, L. E. (1960). Delinquency and opportunity a theory of delinquent gangs. New York, NY: The Free Press. Darling, R. B. (1979). Families against society: A study of reactions to children with birth defects. Beverly Hills, CA: Sage. Darling, R. B. (2003). Toward a model of changing disability identities: A proposed typology and research agenda. Disability and Society, 18(7), 881–895. Darling, R. B., & Heckert, D. A. (2010). Orientations toward disability: Differences over the lifecourse. International Journal of Disability, Development and Education, 57(2), 131–143. DeVellis, R. F. (1991). Scale development: Theory and application. Newbury Park, CA: Sage. Devlieger, P., & Albrecht, G. (2000). Your experience is not my experience: The concept and experience of disability on Chicago’s near West side. Journal of Disability Policy Studies, 11(1), 51–60. Gill, C. J. (1994). Questioning continuum. In: B. Shaw (Ed.), The ragged edge: The disability experience from the pages of the first fifteen years of the disability rag (pp. 42–49). Louisville, KY: The Advocado Press. Gill, C. J. (1997). Four types of integration in disability identity development. Journal of Vocational Rehabilitation, 9, 39–46. Gilson, S. F., & DePoy, E. (2004). Disability, identity, and cultural diversity. The Review of Disability Studies, 1(1), 16–24.

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Hahn, H. D., & Belt, T. L. (2004). Disability identity and attitudes toward cure in a sample of disabled activists. Journal of Health and Social Behavior, 45(4), 453–464. Higgins, M. (2002). Posting to the disability-research discussion list. Available at http:// www.jiscmail.ac.uk/lists/disability-research.html. Accessed on February 10, 2002. Kisor, H. (1990). What’s that pig outdoors? New York, NY: Hill & Wang. Kuusisto, S. (1998). Planet of the blind: A memoir. New York, NY: The Dial Press. Linton, S. (1998). Claiming disability: Knowledge and identity. New York, NY: NYU Press. Mairs, N. (1996). Waist-high in the world: A life among the nondisabled. Boston, MA: Beacon Press. Merton, R. K. (1949). Social theory and social structure. New York, NY: The Free Press. National Organization on Disability. (2000). 2000 N.O.D./Harris survey of Americans with disabilities. New York, NY: Harris Interactive. Oliver, M. (1996). Understanding disability: From theory to practice. New York, NY: St. Martin’s Press. Preacher, K. J., & MacCallum, R. C. (2003). Repairing Tom Swift’s electric factor analysis machine. Understanding Statistics, 2, 13–43. Putnam, M. (2005). Developing a framework for political disability identity. Journal of Disability Policy Studies, 16(3), 188–199. Rosenberg, M., & Simmons, R. G. (1971). Black and white self-esteem: The urban school child. Washington, DC: American Sociological Association. Russell, M. (1994). Malcolm teaches us too. In: B. Shaw (Ed.), The ragged edge: The disability experience from the pages of the first fifteen years of the disability rag (pp. 11–14). Louisville, KY: The Advocado Press. Shapiro, J. (1994). No pity: People with disabilities forging a new civil rights movement. New York, NY: Times Books. Sherry, M. (2004). Overlaps and contradictions between queer theory and disability studies. Disability and Society, 19, 769–783. Solnit, A. J., & Stark, M. H. (1961). Mourning and the birth of a defective child. The Psychoanalytic Study of the Child, 16, 523–537. Stroman, D. F. (2003). The disability rights movement: From deinstitutionalization to selfdetermination. Lanham, MD: University Press of America. Stryker, S. (2000). Identity competition: Key to differential social movement participation? In: S. Stryker, T. J. Owens & R. W. White (Eds), Self, identity, and social movements (pp. 21–40). Minneapolis, MN: University of Minnesota Press. Swain, J., & French, S. (2000). Towards an affirmation model of disability. Disability and Society, 15, 569–582. Watson, N. (2002). Well I know this is going to sound very strange to you, but I don’t see myself as a disabled person: Identity and disability. Disability and Society, 17, 509–527.

DEAF WOMEN’S WORK EXPERIENCES: NEGOTIATING GENDER, ABILITY, AND THEORIES OF RESISTANCE Cheryl Najarian Souza ABSTRACT Using life history interviews with 10 college-educated Deaf women, this chapter investigates how the women saw themselves ‘‘between worlds’’ and how they balanced being both workers and mothers. While considering Gabel and Peters’ (2004) call for a theory of resistance in the field of disability studies along with Garland-Thomson (2004) who argues for a feminist disability studies theory, the author argues that when theorizing about the construction of a worker, which is a fluid identity, it is necessary to consider notions of gender along with ability and to note places where individuals resist stereotypes placed on them by the larger society. The women of this study resisted ideas of deafness as a ‘‘disability’’ and did things to show they were a linguistic minority and part of the Deaf community. Teaching, in certain contexts, was a place where they educated people about their deafness and became, in their words, ‘‘lifetime educators.’’ Those who worked in hearing offices developed strategies such

Disability as a Fluid State Research in Social Science and Disability, Volume 5, 231–252 Copyright r 2010 by Emerald Group Publishing Limited All rights of reproduction in any form reserved ISSN: 1479-3547/doi:10.1108/S1479-3547(2010)0000005012

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as being lifetime educators, self-advocates, volunteering in these offices, and often denying a part of their Deaf identity.

INTRODUCTION This chapter investigates the paid work experiences of college-educated Deaf women with the specific goal of looking at their identity constructions. All of the women spoke of being in between the worlds of the Deaf and the hearing in their family and work experiences. How they learned American Sign Language (ASL) and English and used them to communicate in their workplaces influenced how they saw themselves as Deaf women. The work of learning the languages of both worlds and their skills of knowing how to go back and forth between them affected their career experiences and opportunities. Many of the women viewed being bilingual as an advantage, as the sooner they acquired this skill the easier it was to negotiate their way in these two worlds. Being bilingual, however, influenced their social networks, which shaped where the women made places for themselves. This, then, affected their paid work environments and opportunities, sometimes limiting their opportunities.

SOCIAL MODEL, RESISTANCE, AND FEMINIST THEORY In this chapter, I argue that we need to take an intersectional approach where we combine a theory of resistance along with gender. In this way, we are able to look at the differences and similarities between and among people who are labeled disabled or abled. Through the empirical example of Deaf women workers, we can see how they resist being seen as disabled and also how they resist being seen as mothers who cannot also perform paid work. They do this in an effort to be seen by the larger hearing society as legitimate workers. By doing an analysis that includes an examination of issues of gender, ability, and resistance, it furthers our knowledge about the construction of workers and how the concept of a worker, which is something fluid and based on context, is based on perceived ideas about gender and ability. Currently, one of the major theoretical frameworks used by disability studies scholars is the social model of disability. Shakespeare (2006) defines the social model of disability as the idea that ‘‘disability’’ is a social creation

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or a relationship between people with impairment and a disabling society. While an impairment is defined as something attached to the individual, disability is seen as structural and public. The strengths of this model, as he argues, are that it has been politically effective, that it has liberated disabled people, and that it has been psychologically effective by improving the selfesteem of disabled people. He offers four weaknesses of this model, which include asking if the model rejects medical intervention, if it creates a false binary between disability and ability while defining disability as oppression, that impairment and disability are interrelated, and asks if it is possible to have a barrier-free society. Gabel and Peters (2004) have taken these critiques of the social model, and although they do not entirely discount it, argue instead that what is needed is a resistance theory of disability that includes a multiplicity of approaches so that we do not risk putting people with disabilities into one category or end up ‘‘othering’’ certain groups of people. Resistance theory is not a grand narrative, but rather ‘‘a way to understand the complex relationships and negotiations between divergent ideas like discourse, the material body, socio-political systems and processes, power relations, cultural contexts of disability, impairment, and so on’’ (Gabel & Peters, 2004, p. 586). They conclude their article with four unanswered questions, two of which I explore in this chapter. These include: (1) What are the limitations of resistance theory in relation to the issues and problems facing disabled people? and (2) How can resistance theory expand and improve the conversation about the social model and where are we heading? Garland-Thomson (2004) argues that we need to look at gender and ability and that feminist theory and disability theory need each other to further theorizing on the concepts of ability and gender. I argue, then, that an intersectional approach to our studies is needed that includes looking at gender, ability, and resistance. The empirical data that I will use is looking at the experiences of Deaf women workers. Through their experiences, we can see how they resist being seen as disabled and also how they resist being seen as mothers who cannot also perform paid work. They do this in an effort to be seen as legitimate workers. Thus, by doing an analysis that includes an examination of gender, ability, and resistance, it furthers our knowledge about the construction of workers in the United States and how the concept of a worker is gendered as well as abled. By labeling themselves a linguistic minority, these Deaf women make political decisions about the languages they speak at work and the jobs that they take in the Deaf or hearing worlds. This is not to say that they overcome their disability; rather this project examines how they navigate

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their identities in the world of paid work. Resistance theory helps us to understand how they resist being seen as different in hearing contexts and being seen as not able to work due to being mothers. The strategies that they develop to resist being stigmatized in the hearing world include being lifetime educators, self-advocates, volunteering in these offices, and often denying a part of their Deaf identity. These strategies are also gendered since they are trying to balance their positions as people who are Deaf as well as their positions as mothers.

DEAFNESS AND IDENTITY Since all of the women identified themselves as Deaf, I have chosen to identify them as such. The term deaf has been used when referring to this group and Deaf when speaking of the Deaf community in the United States who are a linguistic minority due to their native language of ASL (Padden & Humphries, 1988; Lane, 1999). I argue that the terms deaf, Deaf, and hearing are defined on the basis of changing social contexts, namely, workplaces where people spend large amounts of time and are socially constructed. This perspective resonates with Deaf studies scholars who argue for a more flexible understanding of identity construction (Brueggemann & Fredal, 1999; Corker, 1999; Haualand, Gronningsaeter, & Hansen, 2003; Breivik, 2005; Davis, 2007). For example, Breivik (2005) has shown how his Norwegian Deaf respondents negotiated their deaf/Deaf identities in their changing family and social contexts. In my previous research, I have analyzed how Deaf women negotiated the slippery nature of their identities in terms of how they experienced their schooling (Najarian, 2008). The language used here regarding the terms deaf/Deaf is contestable and not something stagnant. A goal of this research is to investigate the changing nature of the terms deaf/ Deaf and how the women navigate places for themselves and their Deaf identities in their work environments.

DEAF WOMEN IN THE WORKFORCE Various scholars have looked at women with disabilities and paid work and argued that they face a double discrimination; one on the basis of their sex and the other on the basis of the perceived disability (Blackwell-Stratton, Breslin, Mayerson, & Bailey, 1988). Others claim that women with disabilities have not been part of the women’s employment revolution of the 1970s and 1980s and instead of struggling to be ‘‘supermoms’’ have

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fought for the right to be workers and mothers (Russo & Jansen, 1988; Garland-Thomson, 1997). Recent research has more broadly addressed how to develop the best public policies with regards to the Americans with Disabilities Act (1999) (Smits, 2004). Few scholars have included women with different abilities in their analyses and little research exists about college-educated Deaf women’s experience in the paid workforce. Barnartt (1997) did investigate gender differences in both educational and occupational attainment for deaf individuals over time; however, while her work is a significant and invaluable contribution, its scope does not address the connections between the paid and unpaid work experiences of Deaf women. This research, then, while building off of these literatures, looks at the paid work of Deaf women while connecting it to their unpaid work lives. As these women negotiate places for themselves in their working environments, they also do the work of developing their identities as Deaf women. This study uncovers the various obstacles that they face in these environments and how they struggle to resist these barriers in efforts to become part of the Deaf and hearing worlds. As I will show in the findings sections, language becomes a key factor in how they find places for themselves in their working environments and in how they are able to resist being stigmatized for their deafness. The authors in the book, Working Families (2001), edited by Hertz and Marshall (see Galinsky, 2001; Gerson & Jacobs, 2001; Moen & Han, 2001) contend that the paid and unpaid work that women do are inextricably linked. Along with this group of feminist scholars, my research looks at both paid and unpaid labor and the everyday practices of these Deaf women in an effort to highlight this link. These scholars work to unpack the myth of a binary public and private divide between work and family. While adding to these literatures, my research will look at the similarities and differences of these connections for Deaf women.

METHODOLOGY This analysis is part of a larger study where I conducted life history interviews with 10 Deaf women, who live in Rochester, New York and Boston, Massachusetts (Najarian, 2006). Respondents were found through personal contacts and snowball sampling. I emailed potential interviewees, told them that I am hearing, know sign language, and have a Deaf brother. I expressed my interest in hearing their life stories and struggles. Although I know sign language, I know Sign Exact English (SEE), not ASL, and

38

47

45

63

Kristen

Janice

Stephanie

Teresa

White

White

Jewish

White

White

Race/ Ethnicity

Highest degree obtained.

41

Beth

a

Age

Pseudonym

MA

BA

MA

MA

MS

Degreea

Table 1.

Retired, volunteers for Deaf Women organization. Last job: Secretary at NTID and taught part time, editor of Deaf newsletter

Homemaker, ASL Specialist at school for Deaf, deaf blind interpreter

Director at school for Deaf

Counselor and teacher at NTID

Assistant Professor at NTID

Occupation

Married; deaf husband

Married; deaf husband

Married; deaf husband

Married; deaf husband

Separated; hard of hearing husband

Marital Status

Sample Characteristics of Rochester Women.

Hearing son, age 37; hearing daughter, age 36; hearing daughter, age 32

Hearing daughter, age 16; hearing daughter, age 14; hearing son, age 11

Deaf son, age 18; deaf daughter, age 15

Deaf son, age 10; deaf daughter, age 8

Hearing daughter, age 14; hearing son, age 9

Children

236 CHERYL NAJARIAN SOUZA

36

34

39

38

Heather

Ellen

Debbie

Marie

White

White

White

White

White

Race/ Ethnicity

Highest degree obtained.

39

Carol

a

Age

Pseudonym

BS

MBA

3 years of college

MA

AAS

Degreea

Table 2.

Homemaker, works part time for father-in-law doing taxes and paperwork, volunteers as her daughter’s Girl Scout Troop leader

Homemaker, volunteers at consulting company, volunteers at a deaf organization

Homemaker, part-time ASL teacher

Statistics Analyst/Programmer at hearing university

Assistant Controller at school for deaf

Occupation

Hearing daughter, age 10; hearing son, age 8; hearing son, age 4; hearing son age 18 months

Hearing son, age 10; hearing daughter, age 6

Married; hearing husband

Married; hard of hearing husband

Deaf daughter, age 2; deaf daughter, age 6 weeks

Hearing son, age 9; hearing son, age 5

Hearing daughter, age 6

Children

Divorced; deaf first ex-husband; Remarried; deaf husband

Divorced; deaf ex-husband

Married; deaf husband

Marital Status

Sample Characteristics of Boston Women.

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so I offered to pay for sign language interpreters. Tables 1 and 2 provide an overview of the Deaf women. Since the Deaf community is a small one, pseudonyms were given in an effort to protect their identities. Respondents ranged in age from 34 to 63 and all are college educated. College educations ranged from having three years of college experience to a Master’s degree. Since I was also interested in how education as a context affected their career paths, I chose to interview only those who had college experience and who learned to negotiate being in the hearing and Deaf worlds in both their work and school contexts. In the findings section, I trace more closely the career paths of these women and how it relates to their identities as Deaf. To provide a brief overview of their current occupations, of the ten women, eight work in some aspect of Deaf education or advocacy, one works at a hearing university, and one works part time for her father-in-law. Nine of the ten women were married while one was divorced. One of the nine who was married at the time of the study had earlier been divorced and one was separated. All except for one respondent had married men who were Deaf or hard of hearing. At the time of the interviews, the women had anywhere from one to four children ranging in age from 6 weeks to 37 years old. Three of the mothers had all deaf children while seven had all hearing children. Although this sample is composed of a particular group of Deaf women who were college educated, the homogenous nature of my sample allowed me to look more closely at differences in terms of their identities. Despite them not being representative of all deaf women, they add to the literatures on women and work. As somewhat privileged because of their college educations and, as they described, as part of the first generation of college-educated Deaf women in the United States, these women were more apt to have work experiences in both hearing offices and those mostly comprised of deaf people. These experiences make them an interesting group, then, to study when looking at how identities change over a variety of contexts and to explore the notion that disability and ability are fluid states. I interviewed five women from Rochester, New York, because of its large Deaf community and its location to the National Technical Institute for the Deaf (NTID), which is part of Rochester Institute of Technology (RIT). I also interviewed five women from Boston, Massachusetts, to investigate, despite the small sample size, any similarities and differences that might exist between these two cities. The first set of interviews took place from June

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2002 until March 2003. Eight interviews were in women’s homes and two were in their office environments. The interviews lasted from one and a half to three and a half hours, the average being two and a half hours. All interviews were audio and visually recorded. Interviews were transcribed by me. Next, from May 2003 until July 2003, I did follow-up interviews with the women over email. All interviews were semistructured, open ended, and active. I asked them to trace the history of their work lives. I interviewed the women using a general set of questions regarding their paid work experiences. Through the use of grounded theory method, I let the analysis and themes arise from their stories (Glaser & Strauss, 1999). I paid attention to the struggles they had and where they resisted these circumstances. By using feminist qualitative methods, which proposes to make the experiences of women known to those who may not know of them, I worked to highlight this group of women and add to the literatures on women in the workplace (DeVault, 1999b; Reinharz, 1992).

FINDINGS The findings section is divided into the women’s experiences as teachers and their jobs other than teaching. While resonating strongly with the Deaf community and Deaf culture, due to the larger hearing society in their work, school, and family groups, they often worked to ensure greater ease of communication with both worlds. To do this, the women made political decisions about their identities as Deaf women when they used their native language of ASL versus using English. In most cases, as the women told me, if they used ASL, they were seen as Deaf whereas if they used English they were seen as deaf. As I will argue, making political decisions about their personal relationships, especially with their husbands and in their friendships, became part of the work of negotiating between two worlds as well as within them. As I will show, their stories suggest that marrying Deaf men and having Deaf friends was often perceived as a political decision by others in the Deaf community and hearing world about whether they were a part of the Deaf community or hearing world. The women also actively resisted ideas of deafness as a ‘‘disability’’ and did things to show how they were instead part of a linguistic minority. Teaching, for many of these women, became a place where they did the work, as they described to me, of being ‘‘lifetime

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educators’’ where they educated people about deafness and where they also resisted stereotypes that deaf people cannot teach. Experiences as Teachers Eight of the ten women in this study had worked as teachers in residential schools for the deaf, colleges for the deaf, or in deaf education programs in hearing schools. Of these eight, four also taught and continue teaching ASL courses as either part of their current positions or as a part-time job. Six of these eight women still continue to work as teachers in their current positions or as an aspect of their job. The two exceptions are Teresa, who recently retired from her teaching position and Heather, who, although she works at a hearing university, is now a statistics analyst and programmer. Despite never having taught, Debbie and Marie have both worked at an organization for the Deaf, and Debbie continues to work there. Marie also worked as a Resident Advisor at NTID. Working in the Deaf world, especially in a teaching capacity, is a common experience of these Deaf women. All five of the Rochester women, then, have worked as teachers involved in deaf education while three of the Boston women have had these experiences. All of the women in this study have at one time worked for a school for the deaf or a Deaf organization, and these kinds of work were important to how the women thought of themselves as Deaf women and negotiated their identities. ‘‘Between Worlds’’ Labeling these women’s experiences in the Deaf and hearing worlds, as I have done, is an attempt to organize their experiences by making them visible; however, this is a false divide. The women’s experiences in these two worlds, of course, overlapped and there were also differences within these working environments. In an effort to analyze their lives in a social and political context, I have decided, in an effort to both organize and ground their stories, to use the language of these women, especially with regards to how they name being a part of the ‘‘Deaf world,’’ ‘‘hearing world,’’ or in ‘‘between worlds.’’ Teresa described what it meant to be part of the worlds of the Deaf and the hearing and how the experiences of family, school, and work all relate to being in ‘‘between worlds’’: T: My experience is mostly working with Deaf people. That is easy. Hearing communities can make an impact for deaf women in their jobs and their relationships. I’m in the hearing world a lot when it comes to working. My advantage was I could

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speak and lip read. I’m not the average Deaf woman. I know a mother who got married. She worked for many years in the ‘‘hearing industry.’’ [She worked with all hearing people in her office.] Then, she was offered a job teaching at NTID. She’s had the experience of working in both worlds. She said there was a BIG difference. She enjoyed the work with the hearing, but the socialization, which is very important for a Deaf woman’s self esteem was lacking. She didn’t have that coffee hour time or find it easy to be with people. One on one was fine, but when they got together as a group, she suffered from that. So, getting together with a group of Deaf women is like, ‘‘oh, relax,’’ feel good about yourself and that can influence your children.

Because Teresa was raised in a strong oral community in the Midwest, she raised her three hearing children to use English as their native language instead of learning sign. After moving to Rochester and experiencing a cultural shift, she redefined what it meant to be a Deaf woman by becoming active in and working with members of the Deaf community. Later, this would influence her desire to work in the deaf world at NTID. Through her teaching and activism, Teresa integrated herself within the larger Deaf community where she learned ASL and developed friendships with other Deaf mothers. Teresa’s comments show some of the connections that exist between paid and unpaid work and how they shape the women’s sense of themselves as Deaf. ‘‘Deaf People can’t Teach’’ Teresa described her first work experience as a ‘‘teacher’’ at an oral state residential school for the deaf: T: In the 1960s, women didn’t have careers. You became a teacher or a minister’s wife. I thought to myself, I’m not gonna marry a minister. Me, become a teacher? I can’t be a teacher. Deaf people are not teachers. Deaf people can’t teach. (She rolls her eyes and smiles.) I went to visit my deaf elementary school. The principal gave me a job there, teaching Home Economics and Gym. I was the first deaf teacher at that school. It was a total oral school. All the teachers taught speech and communication. I couldn’t do that, so I never really had a real classroom. That was my ‘‘teaching’’ (She puts her hands up and puts quotes over the word ‘‘teaching.’’). No signing. It was all talking. I knew some signs then, but I couldn’t use them. It was a very strong oral school. And it still is today.

Due to her deafness, Teresa was not seen as able to teach, an occupation, in most cases, that is usually seen as women’s work. As a former graduate of this oral school and a college-educated Deaf woman, however, she was seen as able to teach deaf children particular topics. Due to the philosophy of the school as well as the time in history, Teresa, who is at age 63 the oldest woman in this study, taught her students in the oral tradition. Through her paid work, Teresa was also defining what it meant to be a Deaf woman. Thus, a strategy that she used in developing her identity as a Deaf woman

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was to resist becoming a ‘‘minister’s wife’’ and instead work for pay as a teacher at this school. By working for pay and marrying later in life, Teresa resisted what a larger hearing society might expect of her as a collegeeducated woman who was also deaf in the 1960s. Getting into Teaching As larger cultural ideas about deafness and deaf education underwent some changes, Teresa, as well as the seven other deaf women, got positions as teachers. No woman in this study, however, worked as a teacher at an all hearing school. While ideas may have shifted somewhat about Deaf women as capable teachers, those who do become teachers continue to be tracked into work environments in the Deaf world or working with deaf students in predominantly hearing settings. Still, by working as teachers, many of these women were the first generation of college-educated Deaf women to work for pay. In this way, they were able to resist some of the stereotypes of a larger hearing society that they were ‘‘unable’’ to work. Beth’s story illustrates how she made the shift from working in an all hearing work environment to work at NTID: B: In [the Midwest], I really faced a lot of discrimination. People telling me that I was deaf. I couldn’t do this. I wouldn’t be able to answer the phone. And I thought that maybe I’d try here in Rochester ‘cause they would know more about deaf people and they wouldn’t be as discriminatory. But I was so wrong. The discrimination was still here as well. People would say, ‘‘well how are you and I going to communicate?’’ And I said, ‘‘it will be fine and just kind of work it out with me.’’ And they would be like, ‘‘What if the communication breaks down?’’ And I said, ‘‘just try me out and see.’’ And they said, ‘‘well maybe we’ll put you in the darkroom because there’s not a lot of communication there.’’ So, I was working in the darkroom. There wasn’t a lot of creativity involved. It was very boring, very limited. I had no communication with anybody. I just didn’t like it so I began looking for a different job. My husband suggested, ‘‘why don’t you look at NTID?’’ Because he never forgot that every time I arrived home from work I was starved for communication. And I did find a job at NTID working as a graphic designer working with the faculty and the staff.

After working in the hearing world as a graphic designer in two different geographical locations, Beth explains why she makes the decision to work in the Deaf community. In her new position at NTID, she was able to be in an environment where communication came with greater ease causing her to enjoy her work. Her relationship with her hard of hearing husband who also works at NTID shows that her personal connection with him led her to work in a similar environment in the Deaf world. Therefore, Beth’s decision to pursue this job came in part from a decision to be part of the Deaf community.

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Of the ten women in this study and the seven who had worked specifically at schools and colleges for the deaf, six of their husbands also worked in such places. Of these six, five of these husbands worked at the same school or college for the deaf as their wives. Currently, Beth and Carol’s husbands still work at the same school for the deaf where the women are also employed. Debbie, Heather, and Marie, the three women who currently work in the hearing world, also seem to have a connection between their working environments and their personal contacts. Debbie’s husband is hearing, Heather is divorced, and Marie’s husband is hard of hearing and both she and he work for her father-in-law’s family business. The relationships that these Deaf women developed with their husbands illustrate that they used and in some ways needed these personal contacts and networks in order to get jobs. Beth’s career continued at NTID where she was asked, through the connections that she developed with faculty in her job and in her Master’s program, to teach an ASL course. Currently, she is in a tenure track position at NTID as an Assistant Professor. After her unsatisfying experiences in the hearing work environment, Beth sought employment in the Deaf world where she was encouraged to pursue a career where she also teaches ASL. Due to the working environment and her identity as Deaf whose native language was ASL, she was seen as ‘‘able’’ to teach; however, her story illustrates how these women can often be tracked into such professions because of their identities. Still, Beth’s work as a college professor was a place where she resisted stereotypes from a larger hearing society that deaf women could not teach.

Jobs Other than Teaching All of the women, except for Janice, had at one time worked in the hearing world. Of these nine women, seven had held professional jobs in the hearing world, whereas the other two, Kristen and Teresa, had worked part-time jobs in high school or college. Each of these nine women had stories of sometimes feeling socially isolated in their all hearing work environments. Four of the seven women who held professional jobs in the hearing world said that the feelings of social isolation were a major reason for leaving their job and taking a position in the Deaf world. Of the three women who worked in the hearing world and developed social connections with their work colleagues which made them stay in these jobs, Heather is the only one who currently still works for pay in the hearing world. The other

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two women, Debbie and Marie, both volunteer part time in hearing workplaces. Working in the Hearing World: Volunteering as a Strategy of Resistance Debbie, one of the three mothers who held a professional position in a hearing office and developed social relationships with colleagues, was recently laid off. She is the only woman in the study who is married to a hearing man who is a lawyer and they have two hearing children. Since she is currently a stay at home mother, she wanted to ensure a smooth transition when she does go back to working full time. Volunteering at a hearing office, for Debbie, has become a strategy that she used to ensure later access to working in a hearing office: D: To keep my hand in business, I’ve been volunteering for a consulting company. I know I can put something on my resume because I know that I’ll be out of work for a long time. I have to convince people, I am Deaf, but I’m o.k. I can work. I’ve got something in my mind. The job involves a lot of communication and writing. I don’t like to write. I’ve learned that I have to challenge myself. Just do it. I go through more drafts than an average hearing person. The job’s a little bit different than my previous job. It’s an area that I’d like to test to see if I want to change my career. If there’s nothing there, I’ll go back to what I’ve been doing. I have a backup plan. I’ve learned that I have to be a self advocate for myself and tell people what I need. ‘‘I’m deaf. You need to face me.’’ When I need an interpreter, I discuss with them who pays for it. I try to work harder than my peers just to show them who I am. That’s what I’ve learned from working. They’re cruel out there. But, I’ve learned to stay positive. I’ve learned from my mistakes.

Debbie develops strategies to be seen as a legitimate worker and mother and actively works to resist the stigma of being Deaf and a stay at home mother and not hirable because of this. The social context plays a role in her experience. She uses three strategies to be a self-advocate and negotiate being Deaf and resist being stigmatized and instead be seen as a legitimate worker. They include telling people what she needs, especially with regards to interpreters, working harder by trying to improve her writing, and staying positive. She also uses strategies to been seen as a legitimate worker despite being a stay at home mother and woman. As she says to ‘‘keep her hand in business,’’ she volunteers at consulting company. She is able to do this, in part, because of her class position where her husband makes enough money for her to volunteer at a non-paying job. Second, she has developed a ‘‘backup plan.’’ Since she knows that she will be out of work for a time while raising her two children, in case she is unable to obtain work in her own field, she is learning another area to make herself more marketable. Although these strategies are important,

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they are, unfortunately, individual solutions, which placed an unfair burden on these women. Working in a Predominantly Deaf Environment: Locations Matter Eight of the ten women had, at one time, worked for pay in a predominantly Deaf environment or one where there was a mix of deaf and hearing employees. Five of the ten women currently work in such environments. The five women who do not currently work in such an environment include Teresa who is retired, but who did work in such an environment throughout her professional career, Heather who works in the hearing world, Ellen who currently teaches ASL to hearing families part time, Debbie who has worked for pay in the hearing world, and Marie who volunteers part time for her father-in-law’s business. All five of the Rochester women and three of the Boston women had then, at one time, worked in a predominately deaf environment. Although the experiences varied, the eight women who had these kinds of jobs said that they felt socially connected in their working environments and that, due to structural things that were in place, such as an office of interpreters or colleagues being part of or familiar with the Deaf community and knowing ASL, their jobs were enjoyable. Teresa, who worked as the first deaf secretary in her all hearing department at NTID, describes her experience: T: Michael saw an ad that they were looking for a part-time temporary research assistant. It read: ‘‘Must know how to type.’’ I’m an expert typist. Michael said, ‘‘Look at this. Typing skills.’’ So, we went over to see someone there and got the job. One of the teachers saw me and said ‘‘Will you type up this exam for me?’’ It blew their mind how fast I was, because the other secretary was on the phone, she just couldn’t finish her work. They asked me, ‘‘Why don’t you apply for that position?’’ But, I told them, ‘‘I can’t. I’m deaf. I can’t use the phone.’’ The woman went to talk to the chairperson and told him, ‘‘We need her.’’ So, they hired me with some modifications. The other secretary would take care of all the phone calls. I would take care of everything else. Because of my typing skills because of the TTYs (telephone for the deaf). So, I could thank the TTY. After eight years, I told my boss I was tired of it. So, he gave me a course to teach. It was Life Skills. So, I would work. Then go teach. But, I only taught part time. I didn’t have a full time job. But, that was o.k. with me because my number one priority was my family.

Teresa describes how, in part, because of her typing skills she was able to get this job. As she implies, her ‘‘disability’’ actually put her at an advantage, in some ways, to develop the necessary typing skills for this position. As with Beth, Teresa got connected to this job opportunity through her Deaf husband who worked as a professor at NTID. They then together went to investigate the opportunity in the office. Teresa’s personal relationship with

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her Deaf husband, then, played an important role in her career path and opportunities. Location and the larger Deaf community of Rochester also mattered in her obtaining, keeping, and moving up in this job, which led to her, as with Beth, being asked to teach at NTID. Since there were connections between NTID and the Rochester Deaf community, the Rochester women were better able to integrate themselves into this paid deaf work environment at NTID. Working ‘‘Part Time’’ Like many mothers, the women in this study also had stories of balancing their paid work experiences along with their families. All of the women in this study had worked for pay at some point in their lives and all except for Teresa, who is retired, Debbie, who volunteers for a company and is looking for part-time work, and Marie, who volunteers part time for her father-inlaw’s business, are currently employed in either full-time or part-time paid positions. Among the seven women who currently work in paid positions, all but one have full-time jobs, while Ellen works part-time teaching ASL at night. Among the women who currently work for pay, almost all have jobs in the Deaf world, except for Heather who works with all hearing people. Debbie works in a hearing office and also in the Deaf world with a Deaf advocacy group. Marie, who worked in the hearing world in the past, currently still works in the hearing world, however, she does her work out of her home. The influence of these working environments on the women’s sense of themselves as mothers as well as on their families also has implications for how they saw themselves and how they developed strategies to do this work. Various researchers have shown how work environments, because they also function as places where people make social connections, relate to how women experience unpaid work (Hochschild, 1997). For these Deaf women, this became especially salient in how they conceptualized work and family, as well as what it means to be Deaf, hearing, or somewhere in between. The women in this study spoke of wanting to work for pay, the need for flexibility in their working environments along with offices that might make accommodations for their deafness, and the importance of doing activist work with members of the Deaf community. How the women communicated at home and in their workplaces influenced how they thought of themselves as Deaf women and how they developed strategies to integrate themselves into these communities. When the women in this study had children, similar to most women, working for pay became more complicated; however, many were able to

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negotiate with their bosses or families plans for working at home while remaining at their paid jobs. Seven of the ten women quit their paid jobs at various points to stay at home and raise their children. The other three women, Beth who is separated from her husband, Heather who is divorced, and Carol whose husband was laid off, spoke of continuing to work for pay because it was economically necessary. Various researchers have looked at the benefits and drawbacks of ‘‘flexible’’ workplaces and the influence they have on women (Martin, 1994; Hochschild, 1997). There remains little research on how the ideology of flexibility affects women with ‘‘disabilities’’ or those who are Deaf. All of the women in this study spoke of wanting to put family first and so, as with many hearing women, flexible working environments where they could vary their schedules were seen as desirable. Additionally, all of them needed to find a workplace environment that was amenable to making accommodations for their deafness. Since accommodations were something they had to advocate for in hearing office settings and not something already in place as in most primarily deaf office environments, this became especially important for the three women, Heather, Debbie, and Marie, who worked for part of their careers in hearing workplaces while also raising their children. Seven of the women spoke of working part time so that they might more easily balance their work as mothers with their careers. Definitions of ‘‘part time’’ varied, although all of the women spoke of how working in an office environment where they could communicate more easily with hearing supervisors and colleagues impacted how they negotiated doing part-time work. Marie, a mother of four, describes how, at her previous job in a hearing office, she worked part time: M: I loved my job there. They were great people. That’s why I couldn’t leave. It was just a wonderful company. They gave me an interpreter. They gave me a TTY. It was better than [my previous company]. I notice that as I get older, my life gets a little bit better with hearing people. I have a little bit more of self esteem. I made friends with a lot of people at that job. I left that job to take care of the kids. With my first two kids, I worked part time. But I worked three days a week, ten hours per day. I felt it was easier for me to work ten hours, so I could concentrate on my work. My mother-in-law baby sat three days a week. And my husband worked nearby. So, he was around to help me out. They were willing to let me do that. They would have done anything to keep me there.

Marie’s story suggests that this office, while making accommodations for her deafness, such as the TTY and interpreter, was an environment where she was also able to negotiate a flexible schedule and work part time so that she might be at home with her children. Her story illustrates how she befriended many hearing people at this job, which helped her to negotiate

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this flexible schedule. Marie told me that she later quit this job after having her fourth child because she wanted to stay at home with her children. Like Debbie, who volunteers at a consulting company, Marie also volunteers at her father-in-law’s business where she manages his books and tax information. In this way, these two women were able to keep their identity as professional workingwomen. However, their unpaid status shows that this kind of decision along with the ideology of flexibility contributes to the overall disparity of pay for men and women.

CONCLUSION This chapter has highlighted some of the connections between these Deaf women’s paid work experiences and opportunities and how they balanced their mothering and paid work. I have intended to explore the questions put forth by Gabel and Peters (2004) regarding resistance theory and disability theory, which include: (1) What are the limitations of resistance theory in relation to the issues and problems facing disabled people? and (2) How can resistance theory expand and improve the conversation among the social model and where we are heading? My research, although consisting of a small sample size, suggests that limits of resistance theory include making a general claim about people with disabilities. Instead, I argue, what is needed is an intersectional approach that looks at how people perceived as disabled in certain contexts resist being stigmatized on the basis of their ‘‘disability,’’ but also on the basis of their gender. I also argue for an analysis that includes looking at language and its relationship to changing identity constructions. To address the second question as posed by Gabel and Peters (2004), my analysis supports the idea to consider the social model as a way of looking at what it means to be disabled so long as that also includes an analysis of the linkages between the terms disabled and abled. I would also argue that it is especially necessary to consider the social model when considering how we might think of what it means to be a legitimate worker and how all of these identities are fluid ones that change over time and place. As stated, my research shows that language is a part of this identity construction. As the women negotiated what it meant to be Deaf women, they made political decisions about being in the Deaf world, hearing world, or somewhere in between often based on how they would communicate in these settings. The ways in which they communicated in their personal relationships and in their current families also influenced some of their decisions to work in a deaf, hearing, or mixed environment.

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One finding was that the women often made political decisions about their personal relationships in their choices of husbands and friends. That is, they often chose partners and friends who were also Deaf and whose native language was ASL. This was seen as a political decision because they, through these relationships, worked and socialized primarily with members of the Deaf community. Their experiences of going back and forth between worlds or cultures connects with literature written by women of color who describe their experiences as a kind of border crossing (Ahmed, 2000; Anzaldua, 1990; Lugones, 1990). Although these Deaf women had similar experiences, they differ from this body of literature in that they did not literally cross borders into other worlds or countries. Instead, the women in this study experience a kind of border crossing where the boundaries are less tangible. Social relationships were places, then, where the women developed strategies to integrate themselves into hearing and Deaf communities and worlds, which influenced where they worked for pay. Despite having laws such as the ADA in place, this study has also shown how these Deaf women still struggled to overcome obstacles in all hearing offices where their employers would not make accommodations for their deafness. Although some employers did make accommodations, another finding of this study is that, for these women to ‘‘succeed’’ in their work environments, they also needed to have meaningful social relationships with their colleagues and had to work to dispel stereotypes of what it meant for them to be deaf. This resonates with scholars who have shown that women of minority races and social classes experience paid work in different ways (Amott & Matthaei, 1996; Sokoloff, 1992). In order to negotiate these differences, the women developed four major strategies to work in all hearing environments including educating their hearing colleagues about deafness, working around hearing employers who would not make accommodations for their deafness, denying part of their Deaf identity, and volunteering in hearing offices to prove themselves as valuable employees. Especially in all hearing workplaces, deaf women will not have equal access and opportunities in their paid workplaces unless accommodations are made for their deafness and that these work environments strive to dispel stigmas about what it means to be a deaf working woman. Another finding was that even when working in a predominantly deaf environment, the women still had to go back and forth between worlds in these settings and make political decisions about their identities. For example, these women, who are part of the first generation of collegeeducated deaf women to work in professional positions, often took positions as teachers at schools for the deaf. By doing this, they were often seen by the

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larger hearing society as ‘‘legitimate’’ teachers and workers since they were part of the structure of paid work. In this way, their experiences are similar to scholars who have found that women of minority races are often, as they call it, tracked into particular professions (DeVault, 1999a; Sokoloff, 1992). The Deaf women in this study were tracked into becoming teachers of the deaf, but also, in part, chose these work settings as places where they might feel at home as well as make a difference in the lives of other deaf people. This study also found that there were differences within these predominantly deaf working environments. The women developed strategies to integrate themselves into these environments by asking for interpreters and sometimes having their Deaf husbands help them find jobs. One difference in these environments from all hearing offices was that in offices where the staff was predominantly deaf, there were services in place, such as offices of sign language interpreters as well as an overall climate where most of their hearing colleagues were at the very least familiar with the Deaf community and Deaf culture. These kinds of environments served to help hearing and deaf colleagues communicate with greater ease. These work environments, however, often existed in particular career sectors and communities, such as teaching in schools for the deaf in places such as Rochester and DC. These findings illustrate that the paid work opportunities for these college-educated Deaf women, especially in the hearing world, are indeed limited. How the women balanced their mothering and paid work was another place where they negotiated their identities and made what can be viewed as political decisions about themselves. Their experiences of mothering and paid work overlapped as they struggled to find hearing offices where they could have flexibility as well as accommodations made for their deafness. Since this was often difficult to find in such an office environment, many of the women ended up working in deaf offices so that they might better balance their positions as mothers and activists with their paid work experiences. This research has shown how scholars need to consider theories of resistance, gender, and the social model of disability in order to better uncover how both disabled and abled identities are ones based on context and language and are indeed fluid constructions which should be contested.

ACKNOWLEDGMENTS I would like to thank the women of this study and their families for sharing their stories and for challenging me to think in new ways. Thank you also to

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Dr. Barbara Altman and Dr. Sharon Barnartt for their careful consideration of my work and for their insightful comments. I am also grateful to Marjorie DeVault at Syracuse University and to my friends and colleagues in the Sociology Department and the Center for Women and Work at the University of Massachusetts, Lowell. Finally, I wish to thank my family and friends and my wonderful husband, Michael.

REFERENCES Ahmed, S. (2000). Strange encounters: Embodied others in post-coloniality. New York, NY: Routledge. Amott, T., & Matthaei, J. (1996). Race, gender, and work: A multi-cultural economic history of women in the United States (Rev. ed.). Boston, MA: Sound End Press. Anzaldua, G. (1990). Haciendo caras, una entrada: An introduction. In: G. Anzaldua (Ed.), Making face, making soul, Haciendo Caras: Creative critical perspectives by feminists of color (pp. xv–xxviii). San Francisco, CA: Aunt Lute Books. Barnartt, S. (1997). Gender differences in changes over time: Educations and occupations of adults with hearing losses, 1972–1991. Journal of Disability Policy Studies, 8(1, 2), 7–24. Blackwell-Stratton, M., Breslin, M., Mayerson, A., & Bailey, S. (1988). Smashing icons: Disabled women and the disability and women’s movements. In: M. Fine & A. Asch (Eds), Women with disabilities: Essays in psychology, culture, and politics (pp. 306–332). Philadelphia, PA: Temple University Press. Breivik, J. K. (2005). Deaf Identities in the making: Local lives, transnational connections. Washington, DC: Gallaudet University Press. Brueggemann, B., & Fredal, J. (1999). Studying disability rhetorically. In: M. Corker & S. S. French (Eds), Disability discourse (pp. 129–135). Philadelphia, PA: Open University Press. Corker, M. (1999). New disability discourse, the principle of optimization and social change. In: M. Corker & S. French (Eds), Disability discourse. Philadelphia, PA: Open University Press. Davis, L. (2007). Deafness and the riddle of identity. Chronicle of Higher Education, 53(19), B5–B8. DeVault, M. (1999a). Ethnicity and expertise: Racial-ethnic knowledge in sociological research. In: M. DeVault (Ed.), Liberating method: Feminism and social research (pp. 84–103). Philadelphia, PA: Temple University Press. DeVault, M. (1999b). Talking back to sociology: Distinctive contributions of feminist methodology. In: M. DeVault (Ed.), Liberating method: Feminism and social research (pp. 25–45). Philadelphia, PA: Temple University Press. Gabel, S., & Peters, S. (2004). Presage of a paradigm shift? Beyond the social model of disability toward resistance theories of disability. Disability & Society, 19(6), 585–600. Galinsky, E. (2001). Toward a new view of work and family life. In: R. Hertz & N. Marshall (Eds), Working families: The transformation of the American Home (pp. 168–186). Berkeley, CA: University of California Press. Garland-Thomson, R. (1997). Extraordinary bodies: Figuring physical disability in American Culture and literature. New York, NY: Columbia University Press.

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Garland-Thomson, R. (2004). Integrating disability, transforming feminist theory. In: B. Smith & B. Hutchison (Eds), Gendering disability (pp. 73–103). New Jersey: Rutgers University Press. Gerson, K., & Jacobs, J. (2001). Changing the structure and culture of work: Work and family conflict, work flexibility, and gender equity in the modern workplace. In: R. Hertz & N. Marshall (Eds), Working families: The transformation of the American Home (pp. 207–226). Berkeley, CA: University of California Press. Glaser, B. G., & Strauss, A. L. (1999). The discovery of grounded theory: Strategies for qualitative research. New York, NY: Aldine De Gruyter. Haualand, H., Gronningsaeter, A., & Hansen, I. L. S. (2003). Uniting divided worlds: A study of deaf and hard of hearing youth, Centraltrykkeriet AS, Norway. Available at http:// www.fafo.no/pub/rapp/412/412.pdf#search ¼ ‘haualand’. Retrieved on April 2006. Hertz, R., & Marshall, N. (Eds). (2001). Working families: The transformation of the American home. Berkeley, CA: University of California Press. Hochschild, A. R. (1997). The time bind: When work becomes home and home becomes work. New York, NY: Henry Holt and Company. Lane, H. (1999). The mask of benevolence: Disabling the deaf community. San Diego, CA: DawnSign Press. Lugones, M. (1990). Playfulness, ‘world’ – Travelling, and loving perception. In: G. Anzaldua (Ed.), Making face, making soul, haciendo caras: Creative critical perspectives by feminists of color (pp. 390–402). San Francisco, CA: Aunt Lute Books. Martin, E. (1994). Flexible bodies: The role of immunity in American culture from the days of polio to the age of aids. Boston, MA: Beacon Press. Moen, P., & Han, S. K. (2001). Gendered careers: A life-course perspective. In: R. Hertz & N. Marshall (Eds), Working families: The transformation of the American Home (pp. 42–57). Berkeley, CA: University of California Press. Najarian, C. G. (2006). ‘‘Between worlds’’: Deaf women, work, and intersections of gender and ability. New York, NY: Routledge. Najarian, C. G. (2008). Deaf women: Educational experiences and self-identity. Disability & Society, 23(2), 117–128. Padden, C., & Humphries, T. (1988). Deaf in America: Voices from a culture. Cambridge, MA: Harvard University Press. Reinharz, S. (1992). Feminist methods in social research. New York, NY: Oxford University Press. Russo, N., & Jansen, M. (1988). Women, work, and disability: Opportunities and challenges. In: M. Fine & A. Asch (Eds), Women with disabilities: Essays in psychology, culture, and politics (pp. 229–244). Philadelphia, PA: Temple University Press. Shakespeare, T. (2006). The social model of disability. In: L. Davis (Ed.), The disability studies reader (2nd ed., pp. 197–204). New York, NY: Routledge. Smits, S. (2004). Disability and employment in the USA: The quest for best practices. Disability & Society, 19(6), 647–662. Sokoloff, N. (1992). Black women and white women in the professions. New York, NY: Routledge.

WHY DOES GROWTH HURT? THE DUAL ROLE OF NORMALIZATION AND STIGMATIZATION IN THE EXPERIENCE OF GROWTH HORMONE TREATMENT Leslie Rott ABSTRACT While there has been a significant amount of research conducted on growth hormone (GH) in the field of medicine, very few studies have actually examined the experience from the vantage point of adults who were treated for short stature as children. On the basis of in-depth interviews with three women and two men, I explore the experiences of those who have firsthand knowledge of such treatment. What becomes clear in these narratives is that GH serves as both a normalizing and a stigmatizing force for the recipient. More broadly, this study seeks to contribute to the growing body of research on issues of physical appearance that plant the seeds for unequal treatment of individuals by society.

Disability as a Fluid State Research in Social Science and Disability, Volume 5, 253–277 Copyright r 2010 by Emerald Group Publishing Limited All rights of reproduction in any form reserved ISSN: 1479-3547/doi:10.1108/S1479-3547(2010)0000005013

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[T]he discrimination in favor of tallness is one of the most blatant and forgiven prejudices in our society John Kenneth Galbraith (noted economist who was well over 6u) (Galbraith, Christian Science Monitor, 1977)

INTRODUCTION Short stature has often been a ‘‘stigma’’ or ‘‘disability,’’ a condition that needs fixing by the medical profession (e.g., Allen, 2006; Allen & Fost, 1990, 2004; Conrad & Leiter, 2004; Conrad & Potter, 2004). This has led not only to an increase in the use of growth hormone (GH) by doctors and parents but also to an increase in the visibility and growing concern about the use of such treatments in popular culture and the media (Mestel, 1993; Rubin, 2006; Simon, 2003; Toufexis, 1993). As a result of this attention, whether the use of GH constitutes an actual medical treatment or the treatment of a stigmatized identity in society has been brought into focus. Much of the controversy on GH treatment has taken place in the medical community (see e.g. Boulton et al., 1991; Downie et al., 1996; Sandberg, Brook, & Campos, 1994; Sandberg & Voss, 2002; Skuse, 1987; Ulph, Betts, Mulligan, & Stratford, 2004). Little is known, however, about those who have undergone such treatments, which consist of daily injections, frequent medical testing, unknown and often debilitating side effects, and the increased use of hormones during an already uncertain time of life (e.g., Allen, 2006; American Academy of Pediatrics, 1997). For a treatment that is supposed to increase height, thereby increasing self-esteem and life chances, there is much to be studied and little known about the personal and social experiences of those who have undergone such treatment.

BACKGROUND AND SIGNIFICANCE When GH was first introduced in the United States, before 1985, it was taken from the pituitary gland of human cadavers. Unfortunately, many of those who had been given such injections were diagnosed with, and subsequently died, from the human form of Mad Cow Disease, known as Creutzfeldt–Jakob Disease (e.g., Conrad & Leiter, 2004; Conrad & Potter, 2004). It seems rather coincidental that just six months after the pituitaryderived hormone was stopped from being used, a safer, cheaper, synthetic version of GH was developed and introduced. Whereas the pituitary-derived

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form had been in limited supply,1 synthetic GH was made available in greater quantities, opening up the realm of people of who could qualify for treatment. This ‘‘safer’’ form of the hormone has also been subject to a fair amount of controversy, however, with various parties vying for primacy (Conrad & Leiter, 2004; Finkelstein et al., 2002), such as doctors, parents, and pharmaceutical companies. In its early stages, the use of synthetic GH was approved for children who met specific medical criteria (Bercu, 1996), such as those having a severe GH deficiency, and those with Turner and Prader–Willi syndromes. However, it then became common practice to use GH to treat children who have ‘‘idiopathic short stature’’ (ISS), or those who are considered to be ‘‘short normal,’’ that is, children who are short but have no medical conditions associated with their height. Such children represent the largest group of those who can be treated with GH under the most recent FDA guidelines (e.g., Cutler, 2004; Finkelstein et al., 2002).2 In terms of height, ‘‘short normal’’ is defined by Allen (2006) as a predicted height of 5u3v and under for males, and a predicted height of 4u11v and under for females. One of the many issues that is addressed in the existing literature is the ethical conundrum in the medical community to relieve suffering when technology that enables them to do so exists (Cadwallader, 2007; Churchill, 1994). In the case of GH, doctors who prescribe it and the pharmaceutical companies who make GH are the primary arbiters of defining suffering, which helps to reinforce the societal notion that being tall is good and being short is bad. Cadwallader (2007) suggests that suffering is used to ‘‘justify’’ the use of many technological innovations to produce normalization. She refers to suffering that is not caused by the deviation, itself, but rather, by the attention that society places on the deviation as an explicit failure to fulfill the ‘‘ideal’’ image. In this case, normalization is based on bringing height, and therefore appearance, to a more socially accepted range. Werth (1994) has suggested that simply by making GH available stigmatizes health and that short stature was not considered a disease until there was a treatment available to remedy it. If such ‘‘normalizing’’ treatments are available, they are seen as an individual’s responsibility to undertake. Such treatments medicalize height by providing a medical solution that enhances a social problem more than it heals a medical one; it should be noted, however, that the distinction between what is considered an enhancement and what is considered a treatment does not have agreed upon definitions (Conrad & Leiter, 2004; Conrad & Potter, 2004; Hogle, 2005). This rhetoric of suffering masks the issue of whether the widespread use of GH further stigmatizes short stature (e.g., Cutler, 2004; Law, 1987;

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Sandberg, Bukowski, Fung, & Noll, 2004; Voss, 2000) and hurts even more those who do not have access to such treatment (e.g., Sandberg & Voss, 2002). Access to treatment is related to issues of gender, as more boys than girls are treated with GH (Lee, Davis, Clark, & Kemper, 2007; Sandberg et al., 1994) and socioecomic status, as GH treatment is expensive and is often not covered by insurance (Allen, 2006; Conrad & Leiter, 2004; Finkelstein et al., 2002; Werth, 1994); GH treatment costs, on average, between $30,000 and $50,000 per inch of height gained (Allen, 2006; Conrad & Leiter, 2004; Finkelstein et al., 2002). Those who are of short stature and come from poor families are at a double disadvantage because they are unable to afford such treatments. As Churchill (1994, p. 196) suggests, the prohibitive cost of GH treatment ‘‘[C]aters to middle-class American parental aspirations for a perfect child.’’ The participants in this study fell in line with this, as they all came from families that were considered middle class or above. Because research on GH in the social sciences, specifically in the field of sociology, has been scant (Conrad & Leiter, 2004; Conrad & Potter, 2004; Werth, 1994), asking people who are several decades older than when they were treated with GH will have an interesting perspective on their current life and how being treated with GH has had an impact on them, both in the past and in the present. With the expected benefit of treatment to reduce the stigma of short stature by increasing height, do those who have been treated with GH feel more or less stigma as a result of treatment?

METHOD I conducted semi-structured, in-depth interviews with three women and two men who were treated with GH as children. Respondents were recruited in a Midwestern town in the following ways: (1) flyers were posted in various locations on the campus of a large, local university, (2) posts advertising the study were placed on Craig’s List for several large, nearby cities, (3) postings were placed in relevant clinics at a large, local hospital, (4) an advertisement about the study was posted on Facebook Marketplace and the author’s personal Facebook page,3 and (5) several relevant national organizations were contacted to aid in recruitment efforts.4 Participants were offered a $15 gift card (to Starbucks or Borders) for taking part in the study. The sample was not limited by height, age, race, or gender. The only requirement was that respondents had been treated with GH and were over the age of 18 at the time of their interview. This study had set out

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to interview individuals who were considered ‘‘short normal.’’ It appears, however, that even in such cases, there is still some medical justification, such as ‘‘genetics,’’5 provided for the necessity of GH treatment. This may be an interesting finding in and of itself; however, this fluidity in treatment criteria is precisely what keeps short stature in the ‘‘medical marketplace’’ as a condition that warrants medical treatment (American Academy of Pediatrics, 1997; Conrad & Leiter, 2004). Participants ranged in age from 21 years of age to late 50s. Three of the participants were recruited locally, while two were recruited through national organizations that focus on short stature. Three of the participants were Caucasian, one was Asian, and one was Latina. Participants were asked various background and historical questions, both general and specific, about their families, their childhood and adolescence, and their experience with GH. Contextual questions were asked to ground GH experience against the broader lives of participants, although I was most interested in participants’ direct experiences with GH and how the treatment subsequently impacted their lives. Interviews lasted between 45 minutes and 2 hours. Three of the interviews were conducted in person and two were conducted over the phone. Interviews were audio recorded with a tape recorder (in person) or using Skype (phone).6 I transcribed the interviews and used a combination of open and focused coding, conducting close readings of each transcript in order to identify recurring themes (Emerson, Fretz, & Shaw, 1995). Further coding was done using NVIVO qualitative software. As a short woman, I came to this research with my own unique perspective. I was never treated with GH, although my current adult height would have made me a prime candidate for such treatment. While I was given the opportunity to undergo treatment, I did not take it. My identification as a short woman was useful in building rapport with participants, given our shared experiences. Although I did not disclose my personal feelings about GH, all but one participant asked near the end of the interview whether I was treated with GH, and I did disclose such information. My not being treated with GH did not seem to affect rapport, based on reactions by respondents, but it is very likely that my short stature did.

ANALYSIS7 Participants – whose names have been replaced with pseudonyms to protect anonymity and confidentiality – all had varying experiences with GH

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treatment based on starting and ending age, reasons for treatment, and various other factors. The following sections examine participants’ retrospective narratives about treatment in chronological order (before, during, and after), focusing on the dual role of GH as being both normalizing and stigmatizing.

Height as a Problem All participants described various issues that height posed in their lives. Whether it was concerns over height presented by their parents or social difficulties as a result of being short, it comes as no surprise that height is a salient factor in the lives of children who are treated with GH. Height Conscious Parents One of the major findings of this study is that all participants spoke of having ‘‘height conscious’’ parents. In other words, all participants noted that their parents’ feelings about their height were a major contributing factor in the GH decision-making process. Given that there is a limited time frame when GH can be prescribed to children (pre-puberty), the decision about whether to treat a child is made before the person is old enough to provide informed consent (e.g., Allen & Fost, 2004).8 This can be seen in the age range of treatment of participants in this study; the starting age of participants ranged from 5 to 12 years old and ending age ranged from 9 to 15 years of age. Rachel, a 27-year-old Caucasian woman, whose parents were both doctors, spoke to this issue in her interview: And I think, especially because my father was an endocrinologist, he had charts of my brothers and I from the very beginning. Medical charts to estimate our growth, to estimate our bone density, to estimate the tiniest little thing. And though my parents are both shorter stature, our height was definitely something that was perceived [as] are we normal or not? y It defined normality.

What is especially interesting here is that Rachel described her height in relation to ‘‘normality,’’ in the medical sense. This discussion of whether a short child is normal is something that recurs throughout the narratives of the participants in this study, and also, in relation to the literature on GH, specifically short stature being viewed as a stigma.9 While the example from Rachel’s father charting her height and the heights of her siblings may

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seem extreme, all the participants in this study mentioned variations of this. For instance, Ella, a 27-year-old Caucasian woman, said: Growing up, they [parents] noticed that my little sister, who is 18 months younger than me, was getting bigger than me, by the time I was five. And they noticed that there was an issue, in about the third grade, when I was in a recital, and I was considerably shorter than the next short kid in the front row. Um, they brought this up to my pediatrician several times, who was a very conservative pediatrician, who did not believe in, um, too much action and just let the course take its action, and noticed something was not happening, and he, at that point, in the, maybe fourth grade, recommended that I see an endocrinologist y

As Ella’s narrative indicates, it was her parents and doctor, not her, who spurred the discussion, so that treatment with GH was sought and ultimately received. These comments by Rachel and Ella are particularly interesting because both of them had a fair amount of agency in the decision-making process, and yet, as these descriptions suggest, parental awareness of their height played a major role in the process. Given that at least one parent was of short stature, it seems that parental personal experience of negative attitudes and treatment based on height were a great impetus for obtaining treatment for their children. Sarah, a Latina in her late 50s,10 described a similar situation when she was growing up. Speaking about her parents, she said: Um, so I think that when I was a child, I was given growth hormone because they had this thing between the two of them about height [laughs]. Height, which you know, like I said, I don’t think it was really about height. I think it was about, you know, his [father’s] need to criticize people, rather than to be warm and loving y I think that because it was an issue between the two of them, then it was an issue all the time. You know, for me also. And like they, you know, they ended up giving me growth hormone to make sure that I would grow as much as I could grow.

While Sarah’s narrative suggests that her parents’ fascination was not ‘‘really about height,’’ it significantly impacted her own life and shows the importance parents place on having a child that reaches their maximum growth potential. This section makes clear that parental interest in height is a major factor leading children of short stature to be treated with GH. This is especially interesting given that all interviewees came from families where at least one parent was short stature; suggesting that parents feel a stigma because of their own height, which they then pass on to their children (Goffman, 1963, p. 30),11 making GH an attractive option so parents can spare their children some of the negative treatment they may have experienced because of their height. It is difficult to ascertain whether treatment is dependent on parental

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height,12 but in these cases, it is clear that parents’ personal concerns about stature had a significant impact on the lives of their children.13 The decisions that parents make not only affect their children in childhood, but the consequences carry on into adulthood.14 Height Conscious Others In addition to sharing experiences of height conscious parents, all participants spoke of having a lot of attention paid to their height when they were growing up. They recognized this attention as one of several factors that led to their eventual desire to be treated with GH. This attention, aside from coming from parents, came primarily from teachers and peers. Ella spoke at length about her interactions with teachers and how she felt such relations were laden with assumptions about her based solely on her height. She said: It made me feel like I was, um, sometimes inferior to the other children of my grade y because people didn’t take me as seriously, um, even teachers I feel like sometimes acted like I was just really cute and y it made me feel like I was a little kid in, even though I was the same age as everybody else. And it made me feel often inferior to others and that I had to prove more to them y

While the literature on GH has not directly questioned those impacted by such treatment, it does confirm the kind of behavior by teachers towards short children that Ella described (Law, 1987; Sandberg et al., 2004; Skuse, 1987). Furthermore, some of the earliest interactions that participants point to in relation to their height are in reference to members of their peer groups (Sandberg & Voss, 2002).15 Overall, when participants described interactions with peers, they described the exchanges as being negatively charged. The interactions with peers fell into two broad categories: jokes, name calling, and teasing; and social isolation (Sandberg et al., 1994, 2004; Skuse, 1987). The experience most common among children of short stature is being teased and being called names because of their height. Ella described her experience as follows: People would call me ‘‘Pinkie’’ and ‘‘Little Ella’’16 and people would call me ‘‘Short Stuff’’ and they’d put their elbows on me and they would, you know, act like I was a good armrest. And there was a lot of attention put on how tiny I was and how small I was. And I can distinctly remember in elementary school, just all the girls saying how

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cute I was, but cute in the sense like your kid sister cute y So I had a cute appearance, but I think the cute was more in the sense of derogatory in meaning you’re cute like a little kid. But you’re not one of us y [A]nd it was not an issue by any means in preschool. And I can remember kindergarten being just great, but it was about second grade when everyone else was starting to really grow and I was not there y it would make school sometimes hard.

Ella’s description of the treatment that she received from her peers reinforces several important issues. She talks about how she had nicknames based on her height and that her friends would call her ‘‘cute.’’ The concept of ‘‘cuteness’’ ties directly to the fact that height is often associated with presumed age and short children are treated as younger than they actually are based solely on height cues (e.g., Boulton et al., 1991; Clopper, Mazur, Ellis, & Michael, 1994; Law, 1987). Similarly, Rachel said, ‘‘I was always the butt of jokes y And, especially if I was older than some of my friends, I got a lot of teasing about that y.’’ Caleb, a 39-year-old Caucasian man also described being teased and called names such as ‘‘squirt,’’ ‘‘shorty,’’ and ‘‘small fry.’’ While children can be teased for various reasons, it is important that height was the main focus for the participants in this study, further emphasizing the importance that society places on height. As was suggested earlier in this section, negative experiences with peers are some of the earliest memories that short children have based on their height and they are also some of the incidents that stay with them the longest. Probably the most negative experiences relating to short stature are the feelings of alienation from their peers that all subjects reported, often distancing themselves from other children because of the negative treatment they received. Caleb voiced this in his description of his late elementary and early middle school interactions: I mean that’s a blow to the ego y after a while you just get tired of it. Um, it was like social isolation and stuff like that from friends. You know, they don’t want to be around you cause you’re different y it was kind of, you know, alienating y I wouldn’t go out y I’d be withdrawn and silent and stuff like that. I didn’t really cry a lot, but I just, it just upset me. (emphasis added)

Short children are made to feel acutely aware of the difference that exists between them and their taller peers (Martel & Biller, 1987). Not only are the experiences themselves negative, but so too can be the outcomes of such occurrences when children withdraw socially as a way of coping with peer isolation and rejection.

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Height Experiences Participants also had other issues with height that they experienced later in life. Caleb spoke at length about the difficulties of dating when one is a short man: And then dating, well forget about it [laughs]. That’s difficult. I was in class y And all of a sudden they came up with body image types. You know? And of course they started saying something about what’s the typical male body image, what’s the ideal male body image? Uh, tall, muscular, blah, blah, blah. You[’ve] got to be 5u10v. I’m like, oh jeez. You know? So that’s the way it is. That’s the way women prefer their men is tall. So what are you going to do? It sucks, you know? But, I mean, I’m okay with it now. I’m almost 40, so if that’s the way women want their man, what can I do? It gave me a headache, you know? I don’t care. It’s, I mean, sometimes it sucks, though. I’ll tell you that. But, I mean, I’ve had a couple girlfriends, too. So, one of mine was pretty tall. One of my first girlfriends was like 5u11v. So, some women are mature about it, some women actually give me a chance, which is nice.

Experiences such as the one Caleb described earlier have been corroborated in studies on the impact of height on male–female interpersonal relationships (Gillis & Avis, 1980; Graziano, Brothen, & Berscheid, 1978). In a similar tone, Caleb talked about difficulties in being able to play sports.17 These negative experiences related to being a short person extend to both genders and are routine in a society that values height.18 Rachel described her height issues more generally: [W]hen I started growth hormone, I was old enough to go into a restaurant and just eat a meal by myself. And I noticed that whenever I was in line, people would just pass by me and go in front of me because they all just assumed that I was the daughter of the person in front of me or that I was, you know, I was a child. And I would always get the kiddy menu, I would always get the kiddy crayons y [I]t really did hurt when people just took it for granted that I was not someone who needed services, that somebody else had to take care of me.

This description helps to show how even the anonymous actions of strangers in regard to height can have a negative and long-lasting impact (Goffman, 1963). Ella suggested that she tried to compensate for her height (and the way she was treated) in the following ways: Other than just trying to be funny and fun, um, just trying to be athletic and smarter than all the other kids. I mean, I can remember doing better than them in most of the academics and just using that to, a lot of that had to do with my teachers because they made me feel like I was just little and so I wanted to excel in academics to prove to them that I was just like everybody else, if not better. So I was in the higher level, um, math class, that you could take in elementary school, and higher level reading classes.

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While Ella was able to compensate for her height by excelling in school, not all short children are able to do that. Even for Ella, such tactics were not enough to stifle the temptation of GH treatment and taller stature as a medical solution for a problem that is socially defined as such by parents and others that short children interact with in their daily lives. As Goffman (1963, p. 9) suggested, when people attempt to correct a stigma, such a procedure ‘‘provides a special indication of the extremes to which the stigmatized can be willing to go, and hence the painfulness of the situation that leads them to these extremes.’’

GH as a Solution: Whose Decision is it Anyway? Trying to decipher which party (parents, doctors, or the child) had agency in the GH decision-making process is difficult. While parents were implicated in the height concerns that were present in participants’ lives, it is much more difficult to ascertain who the chief decision maker was in actually going through with treatment. Several participants described being elated by the prospect of becoming taller. Caleb said during his interview: But uh, after a while I found out, you know, when they told me about growth hormone, I said, of course, you know, give me some [laughs]. I want to be taller cause I was 4u2v at the age of 12, so, I was like, well, I want to catch up to my peers y I was always, you know, the shortest kid in class y So, I didn’t really know at that time that I actually had a deficiency y I just thought, well, I’m short, my parents are short, I’m short. So [I thought] it was like a growth delay type [of] thing.

Ella similarly described a ‘‘celebratory’’ feeling in not having to be short like many members of her family: And um, you know, it definitely was a very open thing. And it was kind of, um, to the rest of my family, almost like a relief, like maybe that’s what has been going on with everybody y And it was kind of like, oh, this is what has been going on and we never figured it out. So, it was almost celebratory that we figured it out and that I could be taken care of y and not have to go through what my cousins went through and the rest of my family members who were quite short stature y and that I would not have to live a life where I was shorter than everybody else.

Goffman (1963, p. 9) wrote that one way to deal with a stigmatized identity is to ‘‘make a direct attempt to correct’’ it, which is exactly the opportunity that GH provides to short children. The picture becomes further complicated, though, when we analyze participant narratives through the course of their interviews, as many

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wavered on the question of their agency in the decision-making process. Ella said: Um, I made the decision that I did because I knew that I was tired of being the shortest kid in the bunch. I was tired of being, my sister was often thought of, everyone thought my sister was the older sister. When we would go out to dinner or people who didn’t know us, they thought she was the older one. And I was really tired of being thought of as the little sister when I wasn’t y I thought well, if I have to take a shot every night, then, and that’s going to make it better, then that’s what I want to do because I just felt like I wasn’t taken as seriously as maybe some of my, um, counterparts in school were. So I was on, I was on it in a moment’s time y And I was, um, very much part of it from the very beginning y Um, but, I just, anything to make, anything that would’ve made a difference at that point, was well welcomed.

While Ella provides her personal justification for undertaking treatment, she also said that her endocrinologist recommended that she begin GH treatment after watching no height and weight changes in her for over a year. Ella also described her parents’ consciousness of her short stature and the fact that they repeatedly brought it to her doctor’s attention (quoted earlier). Speaking of her parents’ part in the decision-making process, she noted: Um, I think other factors that got me into [treatment] was just that my parents really did not want to see their daughter be unhappy. And me being short made me feel unhappy. It made me feel unequal. And I think they started to really understand that I did not want to be like that. And so they said, ‘‘let’s find a solution to help you not be like that, then.’’ And other than that, just me saying ‘‘I don’t want to be short. We need to figure this out. How can we make this work?’’ And finding out that there was a reason why I wasn’t growing, and that all I had to do was take some shots, I was like, ‘‘sign me up!’’ And my parents were more of the viewpoint, ‘‘if you’re not okay with this, then we’re not okay with it and let’s make a change.’’ But they never made me feel like, you’re, you know, a short person. ‘‘What’s your problem? Why aren’t you growing?’’

Rachel suggested, ‘‘[W]e, I made the decision along with my parents, to have growth hormone. It was not something that my parents enforced on me. And since I was eight years old y I have chosen my chemotherapy treatments y and I chose the growth hormone. And my parents were, I think, happy with that decision, but they in no way pushed me.’’ For Rachel, the combination of her cancer and the isolation that she suffered because of it led to an effort by her parents to make her life better, which she described as follows: You know, I had gone through so much and I had so many other things that prevented me from being, you know, one of the crowd, they [parents] wanted to make, at least, whatever they could, you know, like other children y But at that age, especially when you’re a girl, you want to fit in so bad. You want to be just like everyone else. You want

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the same clothes, you want the same brands, you want the same hairdo y And at the same time, to be so small, my parents tried to give me everything that they could to make me feel like I was part of the crowd again. So they did buy me, you know, the designer clothes, the designer shoes. They bought me a really wonderful wig. Um, and they helped me with my height. And I think they did it from the very best of intentions.

The slight ambivalence that Rachel expresses, in terms of decision-making between herself and her parents, hints at the complicated nature of decision making about such treatment, especially given the early age at which GH treatment is prescribed. Several participants placed the onus for treatment specifically on their doctors. William, a 21-year-old Asian man, said: ‘‘Yeah. I feel like most of it was from my doctors. I mean, I don’t really specifically know y But it was more them than my parents. They [parents] pretty much just went along with what the doctors said. So, I think they took the doctor’s word,’’ suggesting that both he and his parents were passive actors in the process. Similarly, Rachel said: [S]o they wanted to make sure that they [doctors] did everything that they possibly could to y give me quote ‘‘as normal a life as possible’’ y I was so ill and I was so much, you know, already entrenched in, in medicine because I had, had cancer for four years prior, that to me, whatever my doctor said was the word of g-d [laughs]. It really was y And, you know, at that point, these people had saved my life over and over and over again. So if they told me to take the pill, I was damned well going to take the pill.

These descriptions of decision making paint a complicated picture regarding who impacted the process. It is clear that doctors, parents, children, and even other family members, all have thoughts, feelings, and opinions that they contribute to the process, but it is difficult to ascertain who had the final say about initiating GH treatment for these interviewees. According to Rachel: But it also gives me one more advantage over, one more advantage that maybe I shouldn’t have y And why did I deserve the advantage of growth hormone? Growth hormone is an advantage and should I have changed my body to make other people happy or did I take growth hormone to make me happy? That’s something that I think, I think I did for both reasons. It makes me feel better about myself, but it also makes other people relate to me in a different way.

These issues in regard to decision making are important because past literature has suggested that children are completely passive actors in the treatment process. While this is clearly untrue, what the findings presented here help to show is that the flow of information is indeed both privileged and limited and that respondents had little agency in the decision-making process as compared to parents and doctors.19

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One would think that Rachel, who was surrounded by doctors and a constant flow of medical information, would have been the most informed about GH treatment. Her narrative illuminates the different types of knowledge that are passed along between the various parties involved in the GH treatment process: [M]y parents and my doctor went through it thoroughly. They explained the whole thing to me, no baby language, no little child language. Um, being the daughter of an endocrinologist, I already knew what GH was, I knew what GHRH [growth hormone releasing hormone] was y Those are things I knew before I could talk [laughs] y And having my father there and having his friends there who are all also endocrinologists, it was very easy for me to go to people who told me the blank and ultimate truth.

The above description would lead one to believe that Rachel was extremely knowledgeable about the process and had more information than other participants. It became clear during her interview, however, that this was not the case. In fact, while Rachel was inundated with complicated medical knowledge, she had little practical knowledge about GH, such as how much height was likely to be gained and side effects that could be a result of GH treatment. After describing taking a biology class in college from which she learned about the risks from the pituitary-derived form of GH and worried that she was going to die,20 she said, ‘‘[A]t 10 years old, I knew more than a second year medical student. Um, but it was very much medicalyyou know, this amoeba and that amoeba, and they formed blah, blah, blah y.’’ This lack of practical knowledge about GH was common among all participants. When asked what he knew during the process, Caleb, who was treated with the pituitary-derived version of GH said, ‘‘Nothing [laughs]. I didn’t know anything [laughs] y All I knew is that I was going to be taller. At, when I was 12, you know, that’s all I was thinking about. I just wanted to be taller. I wasn’t really thinking about, you know, all the history and stuff like that y.’’ While some of this lack of knowledge may be attributed to age, participants’ suggested that their parents were just as much in the dark as they were. Caleb said that while he thinks all parties involved have more knowledge today than when he was treated with GH, he suggested that a main purpose of the organization he is a part of is to tell parents and children what doctors may not tell them about GH, suggesting that there still exists a ‘‘competence gap’’ between parents and children, and doctors in regard to GH treatment (Haug & Lavin, 1981). This ‘‘gap’’ in knowledge no doubt impacts the decision-making process. It is interesting to note that the only case of purposeful respondent agency came from Ella, who suggested that she was the one who decided when to

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stop treatment. She described, ‘‘And as I got into the ninth and tenth grade, once we got towards the end, I kind of started realizing this is good. I’m where I want to be. And I think it was actually me who said, ‘are we done yet? Should we take another bone scan? I think I’m happy with where I’m at y.’’’ It is telling that this most agentic experience came from the respondent who was the most positive about GH treatment overall.

Effectiveness of Treatment Disclosure Overall, the entire GH treatment process is met with a healthy dose of skepticism by both parents and others in the child’s life. Participants mentioned actively concealing the fact that they were going through GH treatment. Ella describes only talking about GH treatment with those who were a part of the GH organization that she and her mother were involved in, and only disclosing to others if it was necessary to do so: Um, but probably other than my family, not a lot of people knew. Um, you know, I think we always told my teachers because, you know, with having that many injections in you, you sometimes do get marks and you sometimes do bruise and so when in the summer, when it’s getting warm out, I might have a short sleeve on. Um, I think we told my teachers so that they were aware that, you know, nothing was going on at home. Um, and because, again, I had to go to an appointment once every three months, there was definitely some missed time in school y The only community I really remember anyone knowing was y the kids that I would talk to about because they understood and, and they too were going through the same thing.

This brings to light several important issues. It seems extreme to associate the bruises from GH shots to parental abuse, but given the specialized nature of treatment, it suggests that potentially more (negative) attention could be given to the child as a consequence of treatment by teachers and peers (e.g., Cutler, 2004; Law, 1987; Saenger, 2000; Sandberg et al., 2004; Voss, 2000). Other participants confirmed that GH made them more conscious of their height, and this seems, in some cases, to be tied to the respondent’s opinion about the effectiveness of treatment. For instance, William suggested that he did not tell people about treatment because he did not want to attract attention, especially because he felt that GH did not work for him. He said: So I just personally, I kept it to myself. I kept a really low profile, and just, um, went along with it. y I just decided to keep it to myself because I didn’t feel it was necessary to bring the attention y and then trying to explain about it. I didn’t know how people

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would react to it. Would I be teased? y I just didn’t bother y I mean, it happened like so long ago and also it’s just, I feel like it hasn’t really worked for me y

Furthermore, William said, ‘‘I became more self-aware, self-aware and self-conscious about my height because of that [GH treatment].’’ And for children like Rachel, going through GH treatment becomes a further deviation from an already far-flung ‘‘norm’’ of childhood experience:21 It just, it was just one more routine thing that made me feel that I am always going to be ill, I am never going to get out of this medical model of disease y I did feel very much that, you know, I’m going to continue doing this kind of thing for the rest of my life and I’m never going to have a chance to live a day [gets emotional] when I don’t have to take any pills or any IVs, or any, anything else y

On the basis of the above statements, GH treatment, itself, can contribute to participants feeling that something is wrong with them, which may not have been as salient or occurred at all without treatment. Several participants, however, described GH as being a normal part of their life. Rachel said, ‘‘You know, I was already sick with cancer, so this was just, you know, taking one more pill. This was nothing special, this was nothing new y this was just another pill to swallow kind of thing. It really was not anything out of the normal,’’ William said, ‘‘[I]t was just a normal part of my life,’’ and Sarah said, ‘‘I don’t think for me it was any different than y having to take a shot against the flu.’’ Such comments help to reinforce the difficulties of undertaking procedures that are not medically necessary for children and the impact such treatments can have on them for the rest of their lives. Side Effects The major negative aspect of treatment mentioned by participants was that expectations for height were not met. Caleb suggested, ‘‘But uh, that’s all I wanted to do. I just wanted to be like my peers and stuff, and stop all the teasing. But I still never caught up [laughs].’’ Many have suggested that the purpose of GH treatment in childhood is to promote ‘‘catch up’’ growth, so that short children will not become short adults. As was Caleb’s experience, however, rarely does such catching up ever occur; most often, those who are treated with GH only gain a few inches of height and are still short after treatment (e.g., Conrad & Leiter, 2004; Conrad & Potter, 2004; Cutler, 2004; Voss, 2000).22 Caleb spoke with regret about the experience, saying, ‘‘[I]f I were to take it again, just to be taller, for all the risks – no – I wouldn’t do it.’’

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Participants also mentioned the following physical side effects that occurred both during and after treatment with GH; cancer, diabetes, growing pains, headaches (caused by intercranial pressure), painful injections, and reproductive problems, which have all been noted in the medical literature as potential side effects of GH. There is no way to know for sure whether these health issues are a direct result of GH treatment, but it is significant that so many of the side effects mentioned in the literature were experienced by participants in this study. While participants described much of the results of GH negatively, there were positive changes that were seen as a result of treatment. Ella exclaimed happily, ‘‘[G]osh, I love hGH!’’ She was the most positive about treatment, which could be related to her descriptions of personal agency that she felt she had throughout the entire experience. Ella mentioned that the nicknames she had based on her height went away, she was noticed more by men, she had a lot of energy and was more athletic, and has more confidence in herself as a result of GH treatment (or the attention she received because of it). She described more generally: And all of these things that, you know, had been so difficult, were no longer difficult y [D]efinitely feeling like I’m one of the group, was a benefit. I no longer felt like I was the little kid. Um, I no longer felt like I looked like the little sister. I started to feel like I looked like the older sister y It has made me feel like I’m just an average person y And my life was just, it was normal. And that’s, that’s what I wanted to be. I just wanted to look, as much as I could, in terms of height, like everybody else.

She also mentions in terms of employability: Oh, I think that there is no way that I would be in the position that I’m in. Um, I do outside sales. I see 200 different people a month. Um, and, um, you know, in, in the nature of my job, it involves a lot of cold calling and I have a confidence when I walk into any place. It could be, um, a place that is an employer of a hundred or 500. I walk in with total confidence. And I’m very happy with my appearance and that is such a central part of being an outside sales person. I think if I would have been 4u8v, I don’t think I would have the confidence that I have. I don’t think that I would be in the industry that I have and most likely, because I learned at a young age to have a very outgoing personality and be very communicative, I probably would have done something internally y sales, but nothing like I am today and having the success that I am today.

As Ella’s description suggests, GH treatment made her feel more socially accepted, more ‘‘normal.’’ Rachel also mentioned positive changes she noticed as a result of GH: I do feel better at 4u11.8v [laughs], though I would have liked to have reached that 5u mark. Um, but it, it definitely means that I don’t have to shop in the girls, you know, [size] 7 to 16, which is nice y I have noticed that I am treated with much more respect

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than I was when I was shorter. And that saddens me. But I also welcome it. It’s also a welcoming change. You know, I definitely have to take a look at society and analyze society, but at the same time I do enjoy, I do enjoy my benefits, my privilege of being a tall person. ‘‘Tall person’’ [puts fingers up and makes quote marks] y I really do appreciate that people, you know, treat me like an adult because I am an adult, whereas before it was, it didn’t matter how old I was, it was still, ‘‘oh we thought you were in middle school’’ kind of mentality.

Sarah described the utility of GH in an ambivalent way. She suggested that it had both negative and positive effects on her life. Positively, she said: I think it’s part of what allowed me to, to commit myself to more sort of serious endeavors than a lot of good looking women commit themselves to. And I think that this was because of this upbringing. You know, that, where there was this constant criticism. And so I think it allowed me to actually take a different route. You know, to take the route of women that are more intellectual, more committed y

Despite that, however, there were negative effects, as well. Sarah described: Negatively, it was of course a form of criticism that was sort of awful to be told you’re not good enough looking. You know, the negative part of it is y I think that anytime that you don’t accept a person for what they are and you are constantly criticizing them, you know, that’s a very negative thing to do. And on some level, you’re humiliating them because you’re not accepting them as they are.

As is seen with the positive aspect that Sarah mentioned, some aspects considered helpful by participants are questionable in their optimism. Rachel said, ‘‘I think it’s made me a very much more empathetic person and I think that as someone who wants to go into social work, it will really help me understand some of what other people are going through.’’ Such treatment, with all of its unknowns, seems like a hefty price to pay for becoming more intellectual and empathic, as Sarah and Rachel suggested were the positive effects of GH on their lives. In relation to this, Goffman (1963, p. 11) confirms that suffering from a stigma can be ‘‘a blessing in disguise’’ and ‘‘can teach one about life and people.’’ Personal experience with GH treatment profoundly affected participants’ feelings about GH and whether or not they would pursue such treatments for their own children. Given all this information, Ella was the only participant who said she would seriously consider GH treatment for her own children, if and when the time comes. She said: Absolutely y I know that when my child is old enough to sit still and endure the tests that are involved with it, so I would say five or six, and if I noticed that y they were not growing the way that they should y visibly, which is pretty easy to tell, I will get them immediately tested, knowing now that genetically I’ve got it in me and could carry it and pass it on to my child. Um, so, and if they’re hGH deficient, although at a young age,

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it’s hard to explain to somebody, here’s what’s going on, um, in the best way that I can, and hopefully when I’m a mom I’ll know how to do this y I’ll just say, ‘this is your choice. You get to do what you want to do,’ and if at that time when they’re young, they decided that they do not want to do it, maybe when they’re older and can, um, more conceptualize what’s going on, I’ll continue to bring up the discussion and always let them know if that’s what they want to do, I’m behind them. If they do not want to do that, I will also be behind them. But I will get the testing done y as soon as I can.

As Ella was quoted earlier, the only potential effect of not being treated with GH is short stature. Yet, knowing this, it seems that for Ella, there is something inherently bad about having a child of short stature, and it’s no wonder, then, that the stigma against height is perpetuated (Goffman, 1963).

DISCUSSION AND CONCLUSION In many ways, GH treatment plants the seeds of its own demise, while simultaneously further stigmatizing short stature, and consequently, other social statuses, as well. This study makes clear that a complex combination of social and personal factors are at work in the GH decision-making process. Goffman (1963, p. 121) said that ‘‘Tolerance y is usually part of a bargain,’’ and for short children to gain acceptance in society, GH treatment is the price they pay for social inclusion. It is not clear, however, that GH treatment actually leads to social acceptance, as all the participants in this study were still short after treatment. Participants other than Ella expressed being disappointed that they were not further accepted in society. Unlike previous research that has come down firmly either for or against the use of GH, by interviewing adults who had been treated with GH as children, the picture that emerges is far more complex than this literature suggests. On the basis of participant interviews, GH comes to be seen as being both normalizing and stigmatizing. This is consistent with Goffman (1963, p. 9) who suggested, ‘‘Where such repair is possible, what often results is not the acquisition of fully normal status, but a transformation of self from someone with a particular blemish into someone with a record of having corrected,’’ or in the case of GH, attempted to correct ‘‘a particular blemish.’’ Furthermore, Goffman (1963, p. 130) suggested that normalization and stigmatization are ‘‘cuts from the same standard cloth,’’ and this can be seen in the experience of adults treated with GH as children. Because the stigma is not completely gotten rid of, Goffman’s normalization is not

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fully recognized with the utilization of GH. However, while there was some degree of social acceptance seen by participants, the continued use of GH shows that we are a long way from short stature no longer being seen as a problematic identity by society at large (Wolfensberger & Tullman, 1982). It is still unclear, given the interviews described in this study, however, when GH is a medical necessity and when it is used merely for ‘‘cosmetic’’ reasons (e.g., Saenger, 2000; Ulph et al., 2004). Even in the cases where GH is said to treat children who have diseases – cancer, chronic renal insufficiency, Turner syndrome, and Prader–Willli syndrome23 – it is still only being used to treat the height component, which begs the question as to the appropriateness of such treatments on children who are considered to be ‘‘short normal’’ (or ISS). Certainly, it would be useful to do comparisons with groups of people who had experienced other types of height-altering treatments; for example, those that have had limb-lengthening surgery to increase height (Daniel, Kent, Binney, & Pagdin, 2005) and tall women who have undergone estrogen treatment to stunt their growth (Lee & Howell, 2006). Additionally, it would be useful to conduct interviews with children who decide not to go through GH treatment as a comparison to those who do. However, since most of those who were treated with GH as children are not tracked, it is even less likely to find those who explored the option, but ultimately decided against it. Furthermore, those who participated in this study may have different opinions than those who did not.24 Some have suggested that in cases where GH increases height, children will remain psychologically small and may need time to psychologically adjust to their newfound height, or that any change in treatment and behavior attributed to GH is merely a placebo effect (Allen & Fost, 1990; Downie et al., 1996). Furthermore, the existing literature has suggested several substitutes to GH, such as psychotherapy or other forms of treatment (e.g., Allen & Fost, 1990; Churchill, 1994; Law, 1987; Sandberg & Voss, 2002; Ulph et al., 2004) as less invasive substitutes than GH for short children. However, even these less invasive treatments reinforce the stigma that being a short person is somehow deficient. Is there indeed a purpose to GH treatment when there will always be a population of short children? Furthermore, if height continues to be an attribute for which there is a medical solution, what other social statuses are next on the list to be medicalized? If rectifying social ills is left in the hands of the medical profession, everyone becomes a potential patient and no one will escape unscathed.

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NOTES 1. Caleb, who was treated with the pituitary-derived version of GH, suggests this, saying he was treated ‘‘[B]ecause I had a deficiency. A medical condition. Um, I was, you know, I was short in stature. Of course I was being teased and stuff like that. So, that took part in their decision, as well y They wouldn’t have given it [GH] to me at that time because it was only, they only allowed, uh, growth hormones to be used on kids with medical conditions at that time because there was [a] limited supply y.’’ 2. GH has also been implicated in other ‘‘off-label’’ uses such as antiaging and athletic gain, but such issues go beyond the scope of this paper. See for example Conrad and Potter (2004) for a discussion of the several other uses of GH. 3. While the author thought that utilizing Facebook would be a way to enlarge the sample, no participants were recruited through the social networking site. 4. The names of the organizations are not presented here, to protect the anonymity and confidentiality of participants. 5. This is not actually a medical condition. 6. Skype phone conversations were recorded using Pamela recording software. 7. Quotes were transcribed verbatim and were edited only for clarity, but not for content, unless otherwise stated by words added in square brackets. 8. Scholars working on a similar bodily intervention, cochlear implants to ‘‘correct’’ deafness, have also pointed to this and other ethical dilemmas similar to those cited regarding GH treatment (Hogan, 1998; Hyde, 1995; Hyde & Power, 2000; Poitras Tucker, 1998). Similar discussions have also taken place around intersexuality (see Dreger, 1998). 9. Goffman (1963, preface) considered a stigma to be ‘‘[T]he situation of the individual who is disqualified from full social acceptance.’’ 10. Because her treatment occurred, to her recollection, at least 45 years earlier, Sarah did not remember some of the more specific details about her treatment. Despite her lack of recall on some aspects, however, Sarah had many of the same experiences with GH treatment, as did the other participants in this study. 11. It should be noted that this is an opposite case from that of some deaf parents, who want their children to be more like them, rather than unlike them. A further discussion of this goes beyond the scope of this chapter. 12. For example, whether the shorter or the taller parent is more often the one who seeks treatment for the child. 13. One caveat here is that this study is from the perspective of the participants and not their parents. However, participants had nothing to lose or gain by giving honest portrayals of their experiences, so there is no need to question the validity of their accounts, despite the young age at which such experiences occurred. 14. In the medical literature on GH, Allen and Fost (1990, 2004) caution that parental expectations of height should not be the basis for GH treatment, ‘‘Parental concern about disadvantages of their child’s short stature is legitimated by a ‘heightist’ premise in modern America: to be tall is good and to be short is to be stigmatized’’ (1990, p. 17). So with that ‘‘‘heightist’ premise’’ in mind, it is no wonder that parents worry about their children’s short stature and actively try to alleviate such concerns (Deren, 1987; Werth, 1994), as can be seen in the histories of these cases. 15. These include those people that participants considered friends and those who they knew through school who were merely acquaintances.

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16. It should be noted that this comment does not have the effect with the pseudonym as it did with the participant’s real name. 17. Caleb described, ‘‘Well, like I said, the sporting was, the sports was one of them. I wouldn’t get much playing time y So, of course I didn’t get any good, any better at whatever sport y It wasn’t like I wasn’t improving. They just didn’t give me a chance, you know? y So if you lack confidence, it doesn’t matter how good you are, or how good you might be, if you’re not confident, you’re not going to play well. You know, you’re going to question yourself y It [short stature] hurt there in the athletic field, that’s for sure.’’ 18. Although Caleb’s discussion of dating and sports emphasizes the emasculating nature of short stature on men, a further discussion of this point goes beyond the scope of this chapter. 19. Since these descriptions by respondents were made retrospectively, it is hard to know for sure how accurate they are. 20. It should be noted that Rachel was NOT treated with the pituitary-derived version of GH. 21. Overall, Rachel pointed out, ‘‘I think that my experience is very unique y I think that definitely my experience is not the norm and I think that should be taken into consideration y but in a way, my experience is the normyyou know, 80% of childhood cancer survivors have had some kind of growth hormone treatments y.’’ Rachel had four episodes of cancer, several of which occurred after receiving treatment with GH. 22. Participants in this study gained more height than is typically common in children treated with GH; however, all participants are still short, despite their significant height increases. 23. Some also include in the disease category idiopathic short stature (ISS) and small for gestational age (SGA). 24. Participants in this study suggested altruistic motives for wanting to participate in the study, which were aligned with their personal beliefs about GH.

ACKNOWLEDGMENTS The author thanks Renee´ Anspach for her kind and diligent comments on earlier drafts of this chapter. The author also thanks those, including the editors of this volume, who provided comments about an earlier draft of this chapter that was presented during the ‘‘Disability and Social Life’’ regular session at the 104th Annual Meeting of the American Sociological Association, San Francisco, CA, on August 11, 2009.

REFERENCES Allen, D. (2006). Growth hormone therapy for short stature: Is the benefit worth the burden? Pediatrics, 118(1), 343–348.

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Allen, D., & Fost, N. (1990). Growth hormone therapy for short stature: Panacea or Pandora’s box. The Journal of Pediatrics, 117(1), 16–21. Allen, D., & Fost, N. (2004). hGH for short stature: Ethical issues raised by expanded access. The Journal of Pediatrics, 144, 648–652. American Academy of Pediatrics – Committee on Drugs and Committee on Bioethics. (1997). Considerations related to the use of recombinant human growth hormone in children. Pediatrics, 99(1), 122–129. Bercu, B. (1996). The growing conundrum: Growth hormone treatment of the nongrowth hormone deficient child. Journal of the American Medical Association, 276(2), 567–568. Boulton, T. J. C., Dunn, S. M., Quigley, C. A., Taylor, J. J., Thomson, L., & Members of the Australian Paediatric Endocrine Group. (1991). Perceptions of self and short stature: Effects of two years of growth hormone treatment. Acta Paediatrica Scandinavica Supplement, 377, 20–27. Cadwallader, J. (2007). Suffering difference: Normalization and power. Social Semiotics, 17(3), 375–393. Churchill, L. (1994). Bias, opportunity, and justice in growth hormone therapy. In: B. Stabler & L. Underwood (Eds), Growth, structure, and adaptation: Behavioral, social, and cognitive aspects of growth delay (pp. 195–202). Chapel Hill, NC: University of North Carolina at Chapel Hill, School of Medicine, Office of Continuing Medical Education. Clopper, R., Mazur, T., Ellis, A. M., & Michael, P. (1994). Height and children’s stereotypes. In: B. Stabler & L. Underwood (Eds), Growth, structure, and adaptation: Behavioral, social, and cognitive aspects of growth delay (pp. 7–18). Chapel Hill, NC: University of North Carolina at Chapel Hill, School of Medicine, Office of Continuing Medical Education. Conrad, P., & Leiter, V. (2004). Medicalization, markets, and consumers. Journal of Health and Social Behavior, 45, 158–170. Conrad, P., & Potter, D. (2004). Human growth hormone and the temptations of biomedical Enhancement. Sociology of Health and Illness, 26(2), 184–215. Cutler, L. (2004). Growth hormone treatment for idiopathic short stature: Implications for practice and policy. Archives of Pediatrics and Adolescent Medicine, 158, 108–110. Daniel, E., Kent, G., Binney, V., & Pagdin, J. (2005). Trying to do my best as a mother: Decision-making in families of children undergoing elective surgical treatment for short stature. British Journal of Health Psychology, 10, 101–114. Deren, S. (1987). Shot night: Medical procedures can be painful for parents too. The Exceptional Parent, 17(5), 13–14. Downie, A., Mulligan, J., McCaughey, E. S., Stratford, R. J., Betts, P. R., & Voss, L. D. (1996). Psychological response to growth hormone treatment in short normal children. Archives of Disease in Childhood, 75, 32–35. Dreger, A. (1998). When medicine goes too far in the pursuit of normality. The New York Times. Emerson, R., Fretz, R., & Shaw, L. (1995). Writing ethnographic field notes. Chicago: University of Chicago Press. Finkelstein, B. S., Imperiale, T. F., Speroff, T., Marrero, U., Radcliffe, D. J., & Cuttler, L. (2002). Effect of growth hormone therapy on height in children with idiopathic short stature: A meta-analysis. Archives of Pediatrics and Adolescent Medicine, 156(3), 230–240.

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Galbraith, J. (1977). Galbraith: Interview. The Christian Science Monitor, 159, 22. Gillis, J., & Avis, W. (1980). The male-taller norm in mate selection. Personality and Social Psychology Bulletin, 6(3), 396–401. Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. New York: Simon and Schuster. Graziano, W., Brothen, T., & Berscheid, E. (1978). Height and attraction: Do men and women see eye-to eye? Journal of Personality, 46(1), 128–145. Haug, M., & Lavin, B. (1981). Practitioner or patient? Who’s in charge. Journal of Health and Social Behavior, 22(3), 212–229. Hogan, A. (1998). The business of hearing. Health, 2(4), 485–501. Hogle, L. (2005). Enhancement technologies and the body. Annual Review of Anthropology, 34, 695–716. Hyde, M. (1995). Some ethical dimensions of cochlear implantation of deaf children. Annals of Ontology, Rhinology, and Laryngology, 166(1), 19–20. Hyde, M., & Power, D. (2000). Informed parental consent for cochlear implantation of young deaf children: Social and other considerations in the use of the ‘Bionic Ear’. Australian Journal of Social Issues, 35(2), 117–127. Law, C. (1987). The disability of short stature. Archives of Disease in Childhood, 62(8), 855–859. Lee, J., & Howell, J. (2006). Tall girls. Archive of Adolescent and Pediatric Medicine, 160(October), 1035–1039. Lee, J. M., Davis, M. M., Clark, S. J., & Kemper, A. R. (2007). Threshold of evaluation for short stature in a pediatric endocrine clinic: Differences between boys versus girls. Journal of Pediatric Endocrinology and Metabolism, 20(1), 21–26. Martel, L., & Biller, H. (1987). Stature and stigma: The biopsychosocial development of short males. Lanham, MD: Lexington Books. Mestel, R. (1993). It’s a tall, tall world – Ethics of giving extra growth hormone to healthy short people – 1993 – The year in science column. Discover. Available at http:// www.findarticles.com/p/articles/mi_m1511/is_n1_v15/ai_14909343. Retrieved on January 5, 2007. Poitras Tucker, B. (1998). Deaf culture, cochlear implants, and elective disability. The Hastings Center Report, 28(4), 6–14. Rubin, R. (2006). The debate is growing: Is being short a disability? USA Today, November. Available at http://www.usatoday.com/news/health/2006-11-12-short-debate-cover_ x.htm. Retrieved on January 3, 2007. Saenger, P. (2000). The case in support of GH therapy. The Journal of Pediatrics, 136(1), 106–109. Sandberg, D. E., Brook, A. E., & Campos, S. P. (1994). Short stature – A psychological burden requiring growth-hormone therapy. Pediatrics, 94(6), 832–840. Sandberg, D. E., Bukowski, W. M., Fung, C. M., & Noll, R. B. (2004). Height and social adjustment: Are extremes a cause for concern and action? Pediatrics, 114(3), 744–760. Sandberg, D., & Voss, L. (2002). The psychosocial consequences of short stature: A review of the evidence. Best Practice and Research Clinical Endocrinology and Metabolism, 16(3), 449–463. Simon, C. (2003). Human growth hormone helps small kids grow, but some call its wider use shortsighted. The Washington Post, September 20. Available at http://mc2.vicnet.net.au/ home/shortboys/web/hgheffects.html. Retrieved on January 28, 2007.

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Skuse, D. (1987). The psychological consequences of being small. Journal of Child Psychology and Psychiatry, 28(5), 641–650. Toufexis, A. (1993). A growing controversy. Time, July 12. Available at http://www.time.com/ time/magazine/article/0,9171,978833,00.html. Retrieved on January 3, 2007. Ulph, F., Betts, P., Mulligan, J., & Stratford, R. J. (2004). Personality functioning: The influence of stature. Archives of Disease in Childhood, 89(1), 17–21. Voss, L. (2000). Growth hormone therapy for the short normal child: Who needs it and who wants it? Journal of Pediatrics, 136(1), 103–106. Werth, B. (1994). How short is too short? Marketing human growth hormone. In: H. Schwartz (Ed.), Dominant issues in medical sociology (pp. 249–255). New York: McGraw-Hill. Wolfensberger, W., & Tullman, S. (1982). A brief outline of the principle of normalization. Rehabilitation Psychology, 27(3), 131–145.

DISPROPORTIONALITY: A SOCIOLOGICAL PERSPECTIVE OF THE IDENTIFICATION BY SCHOOLS OF STUDENTS WITH LEARNING DISABILITIES Dara Shifrer, Chandra Muller and Rebecca Callahan ABSTRACT The disproportionate identification of learning disabilities among certain sociodemographic subgroups, typically groups who are already disadvantaged, is perceived as a persistent problem within the education system. The academic and social experiences of students who are misidentified with a learning disability may be severely restricted, while students with a learning disability who are never identified are less likely to receive the accommodations and modifications necessary to learn at their maximum potential. In addition to inconsistent definitions of and criteria for diagnosing students with learning disabilities that may result in misdiagnoses, it is feared that discrimination also plays a role. We use the Education Longitudinal Study (ELS) of 2002 to describe national patterns in learning disability identification by individual- and school-level characteristics. Our results indicate that sociodemographic characteristics are predictive of being identified with a learning disability. Whereas some Disability as a Fluid State Research in Social Science and Disability, Volume 5, 279–308 Copyright r 2010 by Emerald Group Publishing Limited All rights of reproduction in any form reserved ISSN: 1479-3547/doi:10.1108/S1479-3547(2010)0000005014

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conventional areas of disproportionality are confirmed (males and language minorities are more likely to be identified), differences in social class entirely account for black and Hispanic disproportionality. Discrepancy between the results of bivariate and multivariate analyses reaffirms the importance of employing sophisticated methodology in explorations of disproportionality.

Although federal guidelines for the identification of students with a learning disability (LD) are presumed to be based on medical criteria, the disproportional identification of certain sociodemographic groups gives rise to concern that diagnoses are sometimes operationalized through a social or functional perspective. The fact that disproportional identification with a learning disability occurs among groups who are already socially disadvantaged – racial/ethnic minorities, language minorities, and students of low socioeconomic status (SES) – is particularly discomfiting to both educators and researchers. With the intent of informing both research and policy efforts, this study utilizes a large national dataset with both special and regular education high school students, The Education Longitudinal Study (ELS) of 2002, to achieve a more comprehensive understanding of national patterns in disproportionality in the identification of learning disabilities. More specifically, rather than focusing on single characteristics of students, we employ analyses that consider systematic differences in the backgrounds of various status groups, to determine which characteristics are really driving the disproportional identification of certain groups with learning disability.

BACKGROUND Rates of Learning Disability Identification There has been mounting concern over the persistent disproportionate identification of various status groups with learning disability (ERIC/OSEP, 2000; OSEP, 2007).1 The groups that have been disproportionately identified by schools with a learning disability in the past few decades include males, racial/ethnic and language minorities, and low SES students (Anderson, 1997; Coutinho & Oswald, 2005; Daniels, 1998; Deshler et al., 2004). Seventy-three percent of the students identified with a learning

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disability in 1993 were male (Anderson, 1997). American Indian/Alaska Native students have been the racial group most likely to receive special education services for specific learning disabilities, being 1.8 times more likely to receive them than all other racial/ethnic groups combined (OSEP, 2007). Hispanic students are 1.1 times more likely to receive services for specific learning disabilities (OSEP, 2007). Although literature looking at disproportional identification by race/ethnicity has tended to focus on the disproportional identification of black students with mental retardation and emotional disturbance (OSEP, 2007; Skiba et al., 2008), there is evidence to suggest that black students have increasingly been identified with learning disabilities in contrast to whites since the 1970s (Ong-Dean, 2006). Asian students are actually at lower risk than white students of being in receipt of special education services for a learning disability (OSEP, 2007). Disproportionality raises concerns about the validity and reliability of the label ‘‘learning disabled’’ (Giovingo, Proctor, & Prevatt, 2005) and suggests that referral to special education may be being used as a tool of discrimination (McDermott, Goldman, & Varenne, 2006; Ong-Dean, 2006; Reid & Knight, 2006).

Causes of Disproportionality Inaccurate, Vague, or Variable Diagnosis Methodology Disproportionality is attributed to variation in, and even inaccurate, methods of referral, assessment, and diagnosis. The wide variety of diagnostic models and psychological tests with which children are identified is evidenced in the fluctuating rates of identification and degree of disproportionality across states and even across schools (Coutinho & Oswald, 2005; Skiba et al., 2008). Lester and Kelman (1997) specifically found that ‘‘variation in LD diagnostic levels across states is significantly related to distinctions in diagnostic practice as well as, or instead of, actual disease prevalence.’’ The LD Initiative, part of the 1997 reauthorization of Individuals with Disabilities Education Act (IDEA), was a response to charges that diagnoses of learning disabled were not occurring accurately. Although the federal government mandated that a diagnosis of learning disabled should not be associated with ‘‘cultural factors,’’ ‘‘environmental or economic disadvantage,’’ or being of ‘‘Limited English proficiency’’ (OSEP, 2007), the guidelines for identification were still vague enough that a high degree of state-level discretion remains evident. Since our data precedes the introduction of Response to Intervention (RTI) in 2004 (see description of RTI at the end of this section), students in

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ELS were most likely identified with a learning disability through one of three basic models: the ability-achievement discrepancy, low-achievement, and intraindividual discrepancy models. The classic model of diagnosis, the ability-achievement discrepancy model, aligns with the archetypal notion of learning disabilities. Once a student is exhibiting low achievement, without a discernible outside factor (behavior, family background, etc.), a ‘‘specific degree of difference between intellectual ability and performance’’ must be documented to classify that student with a learning disability (LDA, 2009). This model came under criticism when it was determined that the group of students being identified with a learning disability by the discrepancy model was not distinct from those designated as simply low-achieving (Fletcher, Denton, & Francis, 2005; Shinn, 2007). Not only are IQ tests often criticized for being culturally biased (Skiba et al., 2008), but a diagnosis of learning disability from the discrepancy model depends on the type of IQ or achievement assessments used, as well as the methodology for determining the discrepancy (Clampit & Silver, 1990 ; McLeskey, Waldron, & Wornhoff, 1990). There is also debate over which group of students should act as the reference group (Giovingo et al., 2005; McLeskey et al., 1990; Shinn, 2007); for example, comparisons can be made on the basis of age or grade (Giovingo et al., 2005). McLeskey et al. (1990) demonstrated that using a regression-based, versus a standard-score based, procedure resulted in proportionate identification with a learning disability among a sample of black and white students. Under-identification of black students actually results in some contexts not only from the use of a standard score procedure but also from having an IQ cut-off, because blacks tend to score lower on standard measures of IQ (McLeskey et al., 1990). The low-achievement model, in which any student unexpectedly performing below a certain achievement level can be identified with a learning disability, is an alternative to the discrepancy model. This model has been widely criticized for its tendency to overidentify learning disabilities (Fletcher et al., 2005; Giovingo et al., 2005; Meyen, 1989); Meyen (1989) further notes that the low-achievement model likely contributes to disproportionate representation of minorities and males, because of the two groups’ propensities to exhibit lower achievement levels. Although Fletcher et al. (2005) found that most low-achievement models are highly valid insofar as cognitive correlates, they acknowledge that the model does not fit the classic notion of learning disabilities. This alliance to the discrepancy notion of learning disabilities is mirrored in Meyen’s (1989) criticisms that (1) the low-achievement model does not determine if a child’s low achievement is commensurate with his/her ability and (2) high-ability students with

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learning difficulties but average achievement would not be identified by the low-achievement model. The third model, the intraindividual discrepancy model, compares specific cognitive measures of individual students; an uneven profile, strengths in some areas and weakness in others, suggests a learning disability, while a flat profile is an indicator of ‘‘expected underachievement’’ (Fletcher et al., 2005). Like the low-achievement model, the intraindividual discrepancy model results in high numbers of diagnoses (Giovingo et al., 2005). Another attempt to address variable and inaccurate diagnostic practices was made with the 2004 reauthorization of IDEA, with a specific ‘‘disproportionality amendment’’ and the incorporation of a new choice of diagnostic model, RTI (Bradley, Danielson, & Doolittle, 2007; Harris-Murri, King, & Rostenberg, 2006; Shinn, 2007). Specifically intended to reduce disproportionality, RTI is a diagnostic/referral model that is both a criticism and supplement for the three traditional models. Bradley et al. (2007) describe the three tiers of RTI as (1) the receipt of research-based instruction by all students, (2) observation of all students for response to instruction, and (3) ‘‘individualized and intensive interventions and services’’ for those students who need it. The discrepancy model can still be employed within RTI, as it is a hybrid model that is not to take the place of a comprehensive evaluation (Bradley et al., 2007; Fletcher et al., 2005); however, local agencies can no longer require a discrepancy because that model was thought to contribute to disproportionality (Bradley et al., 2007; Harris-Murri et al., 2006). In contrast to the discrepancy model, while an educational need is required, RTI does not require that the child fails before action can be taken (Bradley et al., 2007; Harris-Murri et al., 2006). Despite the issuance of an IDEA regulatory guide in 2006, the process of RTI is still somewhat ambiguous and its effect has not been thoroughly researched (Bradley et al., 2007). As stated before, our data precedes this diagnostic model. Although racial/ethnic minorities are at risk of misdiagnosis because of their lower average achievement levels, available diagnostic methods also put language minorities at risk of misdiagnosis. As it is difficult to gauge ‘‘normal second language acquisition,’’ a lack of English fluency can be mistaken for low intelligence or disability (Klingner & Harry, 2006). Language minorities are further impacted by IQ tests not being administered in their native language (Artiles, Rueda, Salazar, & Higareda, 2005, Klingner & Harry, 2006). Artiles et al. (2005) emphasize the importance of measuring disproportionality through various indicators. For example, while some studies find that Hispanics are not overrepresented nationally

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(Artiles et al., 2005; Ochoa, Pacheco, & Omark, 1988), Artiles et al. (2005) notes that this may not be true within certain districts or states. Consistent with the finding that the limited English-proficient (LEP) are disproportionately placed in classes for students with learning disabilities (Ochoa et al., 1988), the salience of language status rather than race is emphasized in the finding that English language learners with limitations in both their first and second languages had the highest rates of overrepresentation among Hispanics in elementary and secondary learning disability classes (Artiles et al., 2005). In another example of the association between disproportionality and definitions of learning disabilities, the ‘‘good’’ behavior of girls may lead to their under-identification because definitions of learning disability are based on male norms (Anderson, 1997). Although inconsistent diagnosis methods are undesirable in general, certain status groups – like males, racial/ethnic minorities, and language minorities – may be the most negatively effected. Discrimination Many researchers are concerned that disproportionate representation is part of the long history of racism within education (Patton, 1998; Skiba et al., 2008). Some attribute disproportionate diagnoses to blatant educator racism (Anderson, 1997; Skiba et al., 2008). An institutional perspective portrays the situation as the rejection of minority cultures by the dominant culture (Patton, 1998), or the use of the disability label as an instrument of disadvantage (Reid & Knight, 2006). There has, unfortunately, been little empirical research to substantiate claims like these. For example, Reid and Knight (2006) describe disproportionality as a result of the ‘‘historical legacies of racism, classism, sexism, and ableism,’’ which contradicts the fact that it is males rather than females who are actually overrepresented. Describing the field as polarized between disability and inequality researchers, Ong-Dean (2006) notes that if historical trends are examined, diagnoses of learning disability actually began as an advantage, with whites disproportionately identified in the 1970s. Ong-Dean (2006) believes that as learning disabilities became institutionalized and identification came to benefit the interests of the institutions (funding, managing problematic students, etc.), identification transitioned from being a ‘‘high road’’ to being a ‘‘low road’’ for many, although not all, students. SES as a Covariate With documented links between SES and early cognitive development and subsequent educational achievement (Shonkoff & Phillips, 2000), the fact

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that racial/ethnic minority students disproportionately have low SES may contribute to disproportionate (but potentially accurate) diagnoses of learning disability (Blair & Scott, 2002; Daniels, 1998; MacMillan & Reschly, 1998; O’Connor & Fernandez, 2006; Skiba et al., 2008). DSM-IV (2000) explicitly links cognitive disorders and environmental factors, associating mixed receptive-expressive language disorder with environmental deprivation, for example. MacMillan and Reschly (1998) point out that blacks are disproportionately identified by schools to participate in intervention programs (e.g., Head Start, Chapter 1, and Follow Through), and thus, it follows that they might also be disproportionately eligible for special education as well. Whether learning disability diagnoses are accurate or inaccurate, most researchers agree that disproportionality in the identification of learning disabilities occurs because of a complex interaction of factors: inconsistent definitions and criteria; student characteristics; teacher preparation and attitudes; classroom and school processes; and structural inequities (ERIC/OSEP, 2000; Skiba et al., 2008). Ong-Dean (2006) states that, however real learning disabilities might be, it is undeniable that our approach to handling them is not ‘‘socially neutral.’’ This study focuses on the social predictors of being identified with a learning disability and on determining the individual- and school-level characteristics that contribute to disproportionality. Specifically, we utilize a large nationally representative dataset of both regular and special education students to ask: (1) are students with certain sociodemographic characteristics more or less likely to be identified with a learning disability by mainstream high schools? and (2) are certain types of schools more or less likely to identify students with a learning disability?

DATA AND METHODS We employ the first wave of the ELS of 2002, a longitudinal nationally representative dataset of 16,373 high school sophomores in approximately 750 schools; this survey was conducted by the National Center for Education Statistics (NCES), a division of the U.S. Department of Education. The population for this survey consists of spring-term 10th graders in 2002 enrolled in regular public schools, which include State Department of Education schools and charter schools and Catholic and other private schools, but does not include special education schools. NCES selected the 750 schools through a stratified sample based on school size using the preliminary 1999–2000 Common Core of Data and the provisional

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1999–2000 Public School Survey data files of public and private schools as a sampling frame (NCES, 2004). Then a stratified sample (based on race/ ethnicity) of 26 sophomores was selected from each participating public or private school (NCES, 2004). The first wave of data includes student- and school-level measures from student, school administrator, and parent surveys. Retrospective questions on the student and parent surveys provide important information on sociodemographic characteristics and family background and enable longitudinal models predicting having been identified with a learning disability by the 10th grade.2 Filtering students who do not have a value for the dependent variable (identification with a learning disability) results in an analytic sample of 10,847 sophomores in 546 schools; see complete details in the next section.

Dependent Variable School administrators were asked to identify which students have an Individualized Education Plan (IEP) on the 10th-grade enrollment lists or the subsequent sampled student roster; an IEP is an indication that the student has been identified as eligible for special education services. Subsequently, for students with an IEP, schools were requested to indicate the associated specific federal disability category; our analysis focuses on the students who are identified by their school with a ‘‘specific learning disability’’ as per this variable (BYIEPTYP).3 For reasons that are unclear, schools did not report on the IEP status of 7,314 of the students in the sample. By utilizing our knowledge that the students in ELS are clustered within schools, we were able to determine that 351 of the schools indicated the IEP status of all of the students sampled from their school, 196 schools reported on some of the students sampled, and 204 schools reported on none of the students sampled. By comparing school-level distributions, we found that, despite differences in reporting, there were comparable percentages of students identified as having an IEP and identified with a learning disability in the set of schools that reported on all of their students and the set of schools that reported on some of their students. Concluding that the schools who reported on some of their students had for the most part simply only reported when students did have an IEP, we were able to impute that the school had not identified the student with a learning disability for the 1,788 students who did not have an IEP report at those schools. After excluding the 4,213 students attending schools that did not report the IEP status of

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any of their students, we achieve an analytic sample of 10,847 students and 546 schools. To understand how our analytic sample diverges from the nationally representative sample collected by NCES, we examine differences between the characteristics of the schools in our analytic samples and those of the schools that were excluded (summarized in Table 1). In one example, 17% of the schools in the analytic sample are located in an urban region, whereas 31% of the excluded schools are urban, indicating lower response rates for IEP reports among urban schools; alternatively, 40% of the schools in the analytic sample are located in a rural region, whereas 27% of the excluded schools are in a rural region. Although the differences are statistically Table 1.

Descriptive Statistics of School-Level Covariates (2001–2002 School Year). Mean or Proportion (SD)

School total enrolment Percent free or reduced lunch eligible Percent racial/ethnic minority Percent limited English proficient Urbanicity Urban Suburban Rural Region Midwest Northeast South West School control Public Catholic Other private N (schools) Note: Means and proportions are weighted. po0.05, po0.01, po0.001.

Analytic sample

Excluded sample

841.40 (641.30) 25.58 (17.40) 28.63 (27.82) 2.20 (6.12)

1121.20 (631.65) 23.02 (10.06) 35.09 (24.34) 2.52 (6.99)

0.17 0.43 0.40

0.31 0.42 0.27

0.30 0.17 0.37 0.16

0.21 0.16 0.34 0.29

0.84 0.04 0.12 546

0.48 0.07 0.45 205

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significant, the two groups of schools do not diverge dramatically on key measures of school segregation; this is important because schools with higher proportions of poor children or racial/ethnic minorities exhibit lower mean levels on many educational outcomes (Massey, Charles, Lundy, & Fischer, 2003; Orfield, 2002; Sua´rez-Orozco & Sua´rez-Orozco, 2001; Willis, 1981). There is an average of 25.58% of students eligible for the free or reduced lunch program among the schools in the analytic sample and an average of 23.02% among the excluded schools. The average proportion of students who are racial/ethnic minorities is 28.63% for schools in our analytic sample and 35.09% for the excluded schools. Nevertheless, because the differences between the schools in the analytic sample and the excluded schools are statistically significant, we cannot claim with confidence that our analytic sample is nationally representative.

Independent Variables Our primary independent variables include the conventional predictors of disproportionality: gender, race/ethnicity, and language status. As the actual learning disability diagnosis is likely to have occurred before the 10th grade, we were careful to only include retrospective variables that were not likely to have resulted from being identified with a learning disability, such as sets of variables measuring SES and its covariates, immigration history, other academic challenges, and school-level covariates of SES. Mean and mode imputation was used to account for missing values on all independent variables except for race and gender; imputation flags were included in all regression models to account for the influence of having imputed on missing values.4 The proportions, or means and standard deviations, of all student-level variables utilized in our analytic models are provided in Table 2 (Table 1 presented the same for school-level measures). Additionally, Table 2 provides bivariate analyses, that is, analyses that only consider one characteristic of the student at a time, of how the average sociodemographic characteristics of students with learning disabilities differ from students without learning disabilities. Basic Measures and Covariates of SES Two distinct basic measures of SES are used: highest parental education level and family income. We also include correlates of SES: family structure, number of siblings, cognitive family resources, material family resources,

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Table 2.

Descriptive Statistics for Individual-Level Outcome and Covariates. Mean or Proportion (SD) Analytic sample

Identified as LD per IEP Standard measures of disproportionality Male Not a native English speaker Race White Black Hispanic Asian American Indian/Alaska Native Other racea

Identified with a LD

0.06 0.50 0.12

0.66 0.15

0.64 0.13 0.15 0.03 0.01 0.04

0.60 0.14 0.17 0.02 0.01 0.06

0.26 0.39 0.35 8.99 (36.47)

0.35 0.39 0.26 8.30 (40.51)

0.58 0.14 0.03 0.18 0.03 0.04 2.05 (22.79) 4.08 (19.07) 4.27 (19.81)

0.48 0.15 0.05 0.21 0.04 0.06 2.31 (27.58) 4.02 (21.82) 4.24 (22.41)

Student’s early academic history Daycare Preschool Head Start Kindergarten

0.28 0.68 0.14 0.97

0.28 0.67 0.20 0.98

Immigration history Parent not a native English speaker Student not born in the United States

0.10 0.06

0.07 0.03

Basic measures of SES Highest parental education level High school degree or less Some college Bachelor’s degree or higher Family income Covariates of SES Family structure Biological mother and biological father Biological mother and male Biological father and female Biological mother only Biological father only Other family structure Siblings Family resources – cognitive Family resources – material

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Table 2. (Continued ) Mean or Proportion (SD) Analytic sample Parental nativity One parent born outside of the United States Both parents born outside of the United States Other academic hindrances Other parent-reported impairments Visual impairments Hearing impairments Speech/language impairments Orthopedic impairments Mental retardation Emotional disturbance Other disability Ever in an ESL Program N (students)

0.05 0.10

0.008 0.005 0.011 0.004 0.002 0.020 0.013 0.07 10,847

Identified with a LD

0.06 0.07

0.040 0.008 0.068 0.009 0.007 0.051 0.047 0.12 583

Note: Means and proportions are weighted. ‘‘More than one race’’ or ‘‘Native Hawaii/Pacific Islander.’’

a

and the student’s early academic history. The cognitive family resources indicator (values range from 0 to 5) is an index summing the presence of the following items in the student’s home: daily newspaper, magazine, computer, Internet access, and 50 books or more. The material family resources indicator (values range from 0 to 5) is an index summing the presence of these items in the student’s home: DVD player, electric dishwasher, clothes dryer, fax machine, and student’s own room. The student’s early academic history is described by four dichotomous variables indicating whether the student participated in daycare, preschool, Head Start, and kindergarten. Language and Immigration History As a student report of being a non-native English speaker does not capture the great variation in the English proficiency of these students during the school years, we expand upon this measure with the cluster of variables describing immigration history. This set includes dichotomous variables that indicate whether the parent answering the parent survey is a non-native English speaker and whether the student was born in the United States. We compare students whose parents were both born in the United

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States to those with one parent or both parents born outside of the United States. Other Academic Hindrances In addition to a student report of having ever been in an English as a Second Language (ESL) program, we include parent reports of the student’s impairments: visual, hearing, speech/language, mental retardation, emotional disturbance, and other disability. School-Level Covariates of SES Because of variation in the diagnostic procedure across schools, we include school-level covariates of SES. Additionally, because the student was probably not identified at their 10th-grade school, we chose school-level variables that were likely to be evocative of the SES of the student’s middle and elementary schools. In addition to the school’s region and urbanicity, we include measures indicating the percentage of the student body that is eligible for the free or reduced lunch program, members of a racial/ethnic minority, and of limited English proficiency.

Analytic Plan In an attempt to replicate previous research on disproportionality, we begin with a bivariate analysis of patterns in identification with a learning disability by gender, race/ethnicity, and language status. Our first multivariate model includes the same sociodemographic indicators used in the bivariate analysis, but the results may be different because this ‘‘fixed effects model’’ holds the schools constant (the students are clustered according to the school they attend). We then estimate a series of nested multivariate models designed to assess whether the race/ethnicity, gender, and language status can be explained by SES, covariates of SES, and immigration history. Specifically, basic measures of SES are included in model 2, the covariates of SES are added in model 3, measures of immigration history in model 4, indicators of other academic hindrances in model 5, and school-level covariates of SES in model 6. In addition to potentially explaining disproportionality of identification with a learning disability by gender, race/ethnicity, and language status, these nested models illuminate other individual- and school-level characteristics that predict identification.

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We use HLM6 software to predict being identified with a learning disability in the 10th grade with hierarchical logistic regression models. HLM6 is software specifically designed for the analysis of data that is hierarchically clustered. In this case, our students are nested in schools, and this clustering would bias our estimates without using hierarchical linear modeling (because the experiences of students in the same school are more similar than those of students in another school). As we are interested in both student- and school-level predictors of identification with a learning disability, hierarchical models allow us to study relationships at both the student and the school levels, while also accounting for variability at each level. Whereas the statistical software STATA adjusts standard errors to account for within-school residuals that are correlated, HLM6 addresses the same issue by partitioning variance between levels 1 and 2. All variables are centered around the grand mean, and models are weighted with individual- and school-level weights. Laplace estimates are reported because these estimates are more robust and accurate for logistic regression modeling within HLM (Raudenbush, Yang, & Yosef, 2000).

RESULTS Bivariate Analysis Six percent of our analytic sample is identified with a learning disability as per an IEP, which is consistent with national benchmarks (OSEP, 2007). Males are disproportionately identified, representing 50% of our analytic sample but 60% of those identified with a learning disability (Table 2). Similarly, non-native English speakers comprise 12% of the analytic sample but 15% of those identified with a learning disability (Table 2). Blacks, Hispanics, and students of an ‘‘other race’’ are also disproportionately identified with learning disabilities (Table 2). The other descriptive statistics in Table 2 provide a general portrait of our analytic sample and help the reader better understand why each measure behaves as it does in the multivariate models; for example, in contrast to 58% of students without learning disabilities, 48% of students with learning disabilities live with both of their biological parents. We reserve further examination of these characteristics until the multivariate analyses, because it is less meaningful to consider differences in family structure, for example, without also accounting for the confounding role of differences in SES. The descriptive

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statistics on gender, race, and language status in Table 2 are a replication of the sort of bivariate analysis that is commonly used to examine disproportionality, and our findings are consistent with past research. This gives us confidence that our data accurately represent the nation.

Multivariate Analyses Model 1 (Table 3) Table 3 presents odds ratios from hierarchical logistic regression models predicting having an IEP for a learning disability in the 10th grade. Controlling on all other measures in the model, odds ratios contrast the odds that a student with a certain characteristic will have been identified with a learning disability to the odds of a student with a contrasting characteristic having been identified (students in the reference group).5 We focus on the predictors of identification that are statistically significant. In contrast to the bivariate analyses, model 1 considers the gender, language nativity, and race/ethnicity of the student simultaneously and accounts for the influence of students being clustered in schools through the use of hierarchical models. The gender difference in the odds of identification with a learning disability is statistically significant; the odds are 2.14 times higher for males than females. There are also statistically significant differences in the odds of identification by race/ethnicity. In comparison to the odds of a white student, the odds of identification are 42% higher for black students, 38% higher for Hispanic students, and 54% lower for Asian students. The differences in the odds of identification between whites and American Indian/Alaska Natives and students of an ‘‘other race’’ are not statistically significant and marginally significant, respectively; this may be in part due to the low frequency of these students in the sample. The difference in the odds of identification between native English speakers and non-native English speakers is not statistically significant, net of the effect of gender and race/ethnicity. Model 2 (Table 3) In addition to gender and race, model 2 considers the influence of differences in SES, as measured by parental education level and family income. Whereas gender differences in identification remain statistically significant, there is no longer a statistically significant association between being identified with a learning disability and being black, Hispanic, or of an ‘‘other race’’ once we account for differences in SES. Asian students,

Covariates of SES Family structure Biological mother and biological father (ref) Biological mother and male

Basic measures of SES Highest parental education level High school degree or less Some college (ref) Bachelor’s degree or higher Family income

(0.09) (0.13)

(0.13) (0.14) (0.23) (0.40) (0.19)

– 1.42 1.38 0.46 1.54 1.39þ

(SE)

2.14 1.17

Exp(B)

Model 1

1.16 – 0.76 0.89

– 1.12 1.14 0.45 1.26 1.30

2.18 1.03

Exp(B)

(0.12) (0.02)

(0.10)

(0.14) (0.15) (0.23) (0.39) (0.19)

(0.10) (0.13)

(SE)

Model 2

– 1.00

1.11 – 0.84þ 0.92

– 0.78 0.91 0.38 0.97 1.15

2.01 0.99

Exp(B)

(0.14)

(0.12) (0.02)

(0.11)

(0.15) (0.16) (0.24) (0.40) (0.20)

(0.10) (0.14)

(SE)

Model 3

– 0.97

1.13 – 0.84 0.91

– 0.79 1.19 0.59þ 0.94 1.23

1.99 1.58

Exp(B)

(0.15)

(0.12) (0.02)

(0.11)

(0.15) (0.16) (0.27) (0.41) (0.21)

(0.10) (0.16)

(SE)

Model 4

Odds Ratios from Hierarchical Logistic Regression Models Predicting Having Been Identified with a Learning Disability.

Ascriptive characteristics Male Not a native English speaker Race White (ref) Black Hispanic Asian American Indian/Alaska Native Other racea

Table 3.

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a

0.33761 546 10847

‘‘More than one race’’ or ‘‘Native Hawaii/Pacific Islander.’’

po0.05, po0.01, po0.001.

Variance component N (schools) N (students)

Immigration history Parent non-native English speaker Student not born in the United States Parental nativity Neither parent born outside of United States One parent born outside of United States Both parents born outside of United States

Biological father and female Biological mother only Biological father only Other family structure Number of siblings Family resources – cognitive Family resources – material Student’s early academic history Daycare Preschool Head Start Kindergarten

0.56769 546 10847

0.36794 546 10847

(0.13) (0.11) (0.13) (0.27)

0.99 1.02 1.63 1.01

–

(0.23) (0.14) (0.23) (0.23) (0.03) (0.05) (0.05)

1.28 1.00 1.43 1.39 1.08 0.87 1.02

0.39549 546 10847

– 0.84 0.61þ

0.55 0.56

0.98 0.99 1.57 0.84

1.26 0.96 1.38 1.35 1.08 0.86 1.03

(0.22) (0.29)

(0.27) (0.28)

(0.13) (0.12) (0.13) (0.28)

(0.24) (0.15) (0.23) (0.24) (0.03) (0.05) (0.04)

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however, continue to experience statistically significant lower odds of identification than white students. Net of race and gender effects, the odds of identification for students whose parents have a bachelor’s degree or higher are statistically significantly lower (by 24%) than those of students whose parents only attended some college. The odds of identification decrease a statistically significant amount with increasing family income net of all controls, an 11% decrease in odds of identification with every one-unit increase in family income. The primary results of this model, that racial/ ethnic overidentification is explained by the lower average SES of these groups, remain consistent in models 3 and 4. In sum, while the bivariate results suggest that race was a key predictor of disproportionality in the identification of learning disabilities, the multivariate analyses show that disproportionate identification is actually a function of students’ SES disparities. This contrast in results makes evident the importance of accounting for systematic differences between sociodemographic status groups by employing multivariate analyses. Model 3 (Table 3) All previous measures, as well as the set of variables described as covariates of SES in the ‘‘Data and Methods’’ section, are included in model 3. Although the effect sizes change slightly, the race and gender results remain the same. Higher family income also remains a significant negative predictor of identification, but with the inclusion of the SES covariates, the effect of having parents with a bachelor’s degree or higher is rendered marginally significant; this suggests that the odds of identification are reduced for students with more highly educated parents in part through lower numbers of siblings or the presence of more cognitive resources in the home. Net of all other controls, each additional sibling increases the odds of identification by 8%. With each additional cognitive resource in the student’s home, the odds of identification decrease by 13%. Students who participated in Head Start are 1.63 times more likely to be identified than students who did not; in addition to being a covariate of SES, this association is likely a result of the support authorized by the Handicapped Children’s Early Education Assistance Act of 1968 (PL 90-538) and the Economic Opportunities Amendments of 1972 (PL 92-424) for increased Head Start enrollment for young children with disabilities (OSEP, n.d.). There is never a statistically significant difference in the odds of identification for students with different family structures; more material family resources; or who participated in daycare, preschool, or kindergarten in any of the models. Overall, these findings confirm the important

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contributions of home environment and resources to the development of learning ability or style and highlight potential factors contributing to the disproportionate identification of racial/ethnic minorities (who are also more likely to be low SES). Model 4 (Table 3) In addition to all previous variables, model 4 includes measures that describe the student’s immigration history. Net of all controls, the odds of identification for students who were not born in the United States are 44% lower than those of students born in the United States. In contrast to students whose parents are native English speakers, the odds of identification are 45% lower for students whose parents are non-native English speakers. The odds of identification for students whose parents were born outside of the United States are 39% lower than those of students whose parents were born inside the United States (this difference, however, is only marginally statistically significant). Now that we account for the lower odds of more recent immigrants, a statistically significant effect emerges for non-native English speakers; net of all controls, the odds of identification are 1.58 times higher for non-native English speakers than native English speakers. Adding these measures of immigration history also rendered the differences in the odds of identification only marginally significant for Asians and insignificant for students whose parents have a BA or higher. Models 5 and 6 (Table 4) Model 5 accounts for the impact of other academic hindrances, and model 6 considers the influence of school-level characteristics on a student’s odds of being identified with a learning disability (Table 4). Net of other controls, the odds of identification with a learning disability are 2.20 times higher for students whose parent reported the presence of visual impairments, 8.00 times higher for students with speech/language impairments, 1.70 times higher for students with an emotional disturbance, and 2.66 times higher for students with an ‘‘other disability,’’ the association between being identified with a learning disability by the school and the parent reporting that the student is mentally retarded is only marginally significant. There is never a statistically significant difference in the odds of identification with a learning disability for students whose parents report they have hearing or orthopedic impairments. These findings support the comorbidity of learning disability with other psychological and developmental delay conditions, but not necessarily physical impairments. Having ever been in ESL is also a statistically significant predictor of identification with a learning disability;

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Table 4. Odds Ratios from Hierarchical Logistic Regression Models Predicting Having Been Identified with a Learning Disability. Model 5 Exp(B)

Model 6 (SE)

Exp(B)

(SE)

Ascriptive characteristics Male Not a native English speaker Race White (ref) Black Hispanic Asian American Indian/Alaska Native Other racea

1.97 1.49

(0.10) (0.17)

1.95 1.48

(0.11) (0.18)

– 0.79 1.12 0.58þ 0.97 1.30

(0.16) (0.17) (0.28) (0.42) (0.21)

– 0.87 1.21 0.58þ 1.09 1.34

(0.18) (0.19) (0.29) (0.42) (0.22)

Basic measures of SES Highest parental education level High school degree or less Some college (ref) Bachelor’s degree or higher Family income

1.12 – 0.86 0.91

Covariates of SES Family structure Biological mother and biological father (ref) Biological mother and male Biological father and female Biological mother only Biological father only Other family structure Number of siblings Family resources – cognitive Family resources – material Student’s early academic history Daycare Preschool Head Start Kindergarten Immigration history Parent non-native English speaker Student not born in the United States Parental nativity Neither parent born outside of United States One parent born outside of United States Both parents born outside of United States

(0.13) (0.13) (0.02)

1.11 – 0.89 0.91

(0.12)

– 0.96 1.28 0.96 1.45 1.28 1.08 0.89 1.01

(0.15) (0.25) (0.16) (0.24) (0.25) (0.03) (0.05) (0.05)

– 0.92 1.23 0.96 1.38 1.30 1.08 0.90þ 1.00

(0.15) (0.26) (0.16) (0.25) (0.25) (0.04) (0.06) (0.05)

0.95 1.00 1.57 0.89

(0.13) (0.12) (0.14) (0.29)

0.95 1.02 1.55 0.87

(0.13) (0.12) (0.14) (0.29)

0.58þ 0.52

(0.28) (0.28)

0.58þ 0.51

(0.29) (0.29)

– 0.84 0.60þ

(0.23) (0.30)

– 0.86 0.61

(0.23) (0.31)

(0.13) (0.02)

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Table 4. (Continued ) Model 5 Exp(B) Other academic hindrances Other parent-reported impairments Visual impairments Hearing impairments Speech/language impairments Orthopedic impairments Mental retardation Emotional disturbance Other disability Ever in an ESL Program

2.20 0.76 8.00 0.81 0.32þ 1.70 2.66 1.86

School-level covariates of SES Region Midwest (ref) Northeast South West Urbanicity Urban (ref) Suburban Rural Percent eligible for free-lunch Percent racial/ethnic minority Percent 10th graders LEP Variance component N (schools) N (students)

0.42482 546 10847

Model 6 (SE)

(0.30) (0.51) (0.23) (0.56) (0.63) (0.26) (0.26) (0.15)

Exp(B)

(SE)

2.14 0.73 8.00 0.78 0.33þ 1.65 2.61 1.88

(0.31) (0.51) (0.23) (0.57) (0.65) (0.26) (0.26) (0.15)

– 1.28 0.99 0.91

(0.19) (0.16) (0.21)

– 1.04 1.32 0.99 1.00 1.01

(0.15) (0.19) (0.01) (0.00) (0.01)

0.41619 546 10847

po0.05, po0.01, po0.001. a

‘‘More than one race’’ or ‘‘Native Hawaii/Pacific Islander.’’

the odds of identification for a student who reports having ever been in an ESL program are 1.86 times higher than those of similar students who do not report having been in ESL. Including these measures of other academic hindrances also renders the effect of having a parent who is non-native English speaker marginally significant; the effect of having a parent who is a non-native speaker was most likely encompassed by the effect of having ever been in an ESL program. The degree of poverty in a school’s student body was the only significant school-level predictor; net of all other controls, the odds of a student being identified decrease by 1% with every 1%

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increase in the percent of the student body eligible for the free or reduced lunch program. Once school-level characteristics are accounted for, the association between being identified and the number of cognitive family resources is only marginally significant, and the association between identification and having two parents who were born outside of the United States is insignificant.

DISCUSSION The major new findings of this study are that (1) the disproportionate identification of black and Hispanic students with learning disabilities is entirely explained by their lower SES, and (2) language minorities and males are disproportionately identified with learning disabilities even after controlling for all other differences. The fact that students are being identified with learning disabilities in concordance with socially constructed and ascriptive characteristics suggests that social contextual factors play a role in the development of learning difficulties (variation in home resources as a result of differences in social status) or that methods of identification do not sufficiently distinguish between social/cultural differences and actual learning differences. For instance, we found that students with speech/language impairments and emotional disturbances are more likely to be identified with a learning disability, whereas there is no difference in the likelihood of identification for students with more obvious physical impairments such as hearing and orthopedic impairments. Although this may be the result of authentic comorbidity between learning disabilities and the first set of conditions, it could also be the result of a certain fluidity in the identification of less visible conditions. In fact, ‘‘soft’’ disability categories (learning disability, mental retardation, and emotional disturbance versus physical handicaps) are particularly susceptible to disproportionality (Skiba et al., 2008). As researchers in psychology and medicine work toward more comprehensive understandings of what truly constitutes a learning disability, attempts are being made at the federal, state, district, and school levels to standardize the process of diagnosing a child with a learning disability. Diagnoses of learning problems may reflect social differences rather than learning differences, and therefore, the solution to some ‘‘biological’’ issues may lie in addressing social problems such as economic inequality. Although it is possible that some racial/ethnic minorities are identified with a learning disability because of cultural misunderstanding or direct discrimination, we found that the overrepresentation of racial/ethnic

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minorities is entirely explained by their greater likelihood to have low SES. Although previous research in the field of special education has tended to emphasize the possibility that racism underlies the overidentification of racial/ethnic minorities, our results support research that finds an association between resources at home and the development of both cognitive and learning ability (Shonkoff & Phillips, 2000). A multidisciplinary report released in 2000 by the National Research Council and Institute of Medicine of the National Academies concludes that early experiences influence brain development; culture influences early development through child-rearing beliefs and practices; and that the brain can actually be harmed by poor nutrition, health, or chronic stress (Shonkoff & Phillips, 2000). Correspondingly, the lesser likelihood of identification for the individual student in a high-poverty school is likely a result of the school being unable to meet the greater demand for services, or special education infrastructures with less funding and fewer resources (Skiba et al., 2008). The distinction between race/ethnicity and differences in social class by race/ethnicity is important because policy change that focuses exclusively on discriminatory practices within the school will not address the learning problems that result from having fewer resources in the home. For example, the requirement that special education data be disaggregated by race/ethnicity was initiated by the IDEA Amendments of 1997 (ERIC/OSEP, 2000; OSEP, 2007); furthermore, it is specified in federal regulations that identification with learning disability should not be related to ‘‘environmental or economic disadvantage.’’ These policies may be counterproductive if there is a valid connection between poverty and learning difficulties. Finally, the disjunction between the findings from bivariate and multivariate analyses of disproportionality emphasizes the necessity of employing sophisticated methods that account for systematic differences between status groups. Our findings do confirm that the disproportionate representation of males and language minority students persists and is not simply explained by differences in SES or family background. There may be gendered differences in socialization that result in the disproportionate identification of males, or there has been evidence to suggest that there are biological gender differences that make boys more likely to have disabilities or at least make girls better equipped to compensate for learning difficulties (Anderson, 1997). In contrast, there is no credible evidence for a biological connection between being a language minority and having a learning disability. Although it is possible that systematic cultural differences in the home environments of non-native English speakers affect the development of learning ability (similar to low SES students), we think it more likely

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that current methods for identification do not adequately distinguish between a lack of English language fluency and having a learning disability. The disproportionate identification of students who have ever been in an ESL program may be a result of other needs of the student being recognized once they have been evaluated for ESL services or that students who were in ESL programs attend schools that offer more services in general, including special education services. Alternatively, students who reported having been in ESL may have continued experiencing language difficulties that impacted learning ability after having been exited from ESL, but educators may have been unaware that the student was ever in an ESL program, especially if the non-native English speaker had achieved fluency in at least social English. Similarly, the odds of identification with a learning disability may be lower for more recent immigrants because they may be more likely to be consistently recognized as an English language learner (rather than a student with neurological learning difficulties) than second- or thirdgeneration immigrants who have achieved at least social fluency in English. Additionally, more recent immigrants simply have not been at risk of being identified with a learning disability for as much time as students who began school in the United States. The ever-evolving and even subjective definitions of learning disability are also thought to contribute to disproportionality. Many authors (Algozzine & Ysseldyke, 1986; Daniels, 1998; Fletcher et al., 2005; Levine & Nourse, 1998) believe that the term ‘‘learning disabled’’ describes a student who has trouble learning, relative to his/her intelligence, but not as a result of some other condition or context; beyond this, however, there is a wide range of definitions and criteria that describe learning disabilities more specifically than the federal category of ‘‘specific learning disability.’’ For example, the Learning Disabilities Association of America differentiates between four types of learning disabilities: input, organization/integration, memory, or output (LDA, 2009), whereas the 4th edition of the Diagnostic and Statistical Manual of Mental Disorders published by the American Psychiatric Association describes six different types of learning disabilities: reading disorder (dyslexia), mathematics disorder, disorder of written expression, expressive language disorder, mixed receptive-expressive language disorder, and phonological disorder (DSM-IV, 2000). This lack of consistent terminology is likely to contribute to difficulties in implementing and monitoring reliable diagnoses. Although the 2004 reauthorization of IDEA mandates that a school must comply with four components of a list of eligibility requirement instructions (historical review and educational assessment, area of concern and evaluation method, exclusionary factors,

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and observation) to identify a student with a learning disability, the process of diagnosis is otherwise left to the discretion of the state (OSEP, 2004). The lack of a consistent diagnostic method across states is evident in the fact that in some states, boys are 1.7 times more likely to be identified with a learning disability than girls, whereas in other states, boys are 2.7 times more likely to be identified than girls (Coutinho & Oswald, 2005). Adding to the confusion, the criteria for, or symptoms of, various learning disabilities are often similar or identical (Giovingo et al., 2005). For example, the symptoms characterizing a math disorder are similar to those characterizing conduct disorder, attention-deficit hyperactivity disorder depression, and other learning disorders (DSM-IV, 2000). There are also often psychosocial correlates of learning disabilities. With overlapping symptoms and manifestations, as well as inconsistent criteria, cultural or gender differences are potentially more easily misinterpreted as symptoms of a learning disability. It is generally thought that the subjectivity of definitions and criteria for learning disabilities exacerbate disproportionate representation of various sociodemographic status groups.

CONCLUSION This study suggests new possibilities for educational policy, future data collection, and methodological practices in special education research. Our finding that the disproportionate identification of racial/ethnic minorities is driven by systematic differences in SES implies that differences in economic and cultural resources across students of various status groups must be addressed. As bivariate analyses do not consider the correlation between race/ethnicity and SES, this finding also exemplifies that sophisticated methods (multivariate analyses) and better sources of data (with measures of SES as well as basic sociodemographic characteristics) are essential in future research on disproportionality and learning disabilities in general. By conducting only bivariate analyses, an implicit assumption is made that the average backgrounds of these different groups of people are similar and unrelated to the outcome of interest. As bivariate results would suggest targeting racist practices in special education, while multivariate results exemplify that material differences in the circumstances of these groups must be addressed, future research and informed policy-making should rely on the use of sophisticated methodology that accounts for the confluence of factors that contribute to a student having or being identified with a learning disability. Although there is medical evidence to suggest linkages between

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childhood poverty and difficulties with learning (Shonkoff & Phillips, 2000), there is no research that suggests that language minorities should have a higher prevalence of learning disabilities; poor diagnostic procedures or discrimination seemingly still play a role in the disproportionate identification of certain groups. In addition to general clarification and standardization of what constitutes a learning disability, it is imperative that diagnostic methods specifically targeting non-native English speakers be developed. Efforts should also be made to increase educator awareness that seeming fluency in English may mask an English language learner. Although the use of a dataset like ELS – large and nationally representative of students receiving both special and regular education – is a strength of this study, there were some inherent limitations within the dataset. More specific measures indicating when the student was identified with a learning disability and the nature of the disability would have been an asset for our study. Although the indicator of school identification with a learning disability (rather than a parent or student report) is a unique strength of ELS, this measure also had several missing observations. This data also does not enable us to locate the mechanisms whereby various sociodemographic characteristics are associated with an increased likelihood of identification with a learning disability. For example, although SES is significantly associated with being identified with a learning disability, it is not clear if it is most often due to environmental or other factors affecting childhood development or even identification. Additionally, we were not able to determine the role, if any, of discriminatory practices in diagnosis. It is also important to keep in mind that this study focuses on a subgroup of the students identified with learning disabilities, because it is likely that there were students in our sample who were identified in elementary school but then exited from special education before the 10th grade; it also excludes those students who have learning difficulties that have not yet been identified by the school. Taking these limitations into consideration, by utilizing a large dataset and employing sophisticated methods, our findings are a substantial contribution to research on disproportionality. Rather than focusing on eradicating racial differences in identification or achieving proportionate diagnoses, an increased emphasis on detecting the factors and mechanisms that explain disproportionality will reveal more valid targets for policy reform. MacMillan and Reschly (1998) are concerned that the focus on limiting disproportionality may result in the denial of services to students who need them. Many researchers advocate a shift in focus from the reform of screening, diagnosis, and classification, to the improvement of policy, programming, and instruction (Algozzine, 2005;

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Algozzine & Ysseldyke, 1986; Daniels, 1998; MacMillan & Reschly, 1998). Future research should explore (1) specific and potentially valid mechanisms that contribute to disproportionate identification of low SES and male students with the goal of either addressing root causes or of achieving a better understanding of potential treatments and (2) determining the various aspects of the education system that contribute at a multitude of levels to the seemingly invalid disproportionate identification of language minorities and possibly some subset of low SES, racial/ethnic minority, and male students identified with learning disabilities.

NOTES 1. It is important to maintain a distinction between being diagnosed with a learning disability, being referred to be considered for special education eligibility, and actually being in receipt of special education services. The measure of school identification with a learning disability used in our study implies that the student is receiving special education services; unfortunately, we have no independent measure of services received or of diagnosis specifically. 2. As evident by the dearth of studies that use large datasets to study learning disabilities, it is difficult to find data with both measures of disability and sociodemographic characteristics (Ong-Dean 2006). In contrast to ELS, the federal datasets that are specifically focused on special education issues do not include peers who are not identified with a learning disability as a base of comparison. 3. Specific learning disabilities’’ is also an optional response to a question on the base year parent survey: ‘‘In your opinion, which of these disabilities does your tenth grader have?’’ We chose to exclusively use the school report rather than the parent report of disability, because there was a lack of consistency between the two measures, and because it is not clear whether the parent report is based on a diagnosis by a psychologist nor whether the student has been identified by the school with disability. There are no other measures of having been identified with a learning disability in the database. 4. Imputation is used to ensure that students are not excluded from an analysis because they are missing a value on one or a few of the independent variables included in the multivariate model. Imputation means that the missing value is replaced by the mean (for continuous measures) or the mode (for categorical measures) of that particular variable. Additionally, we construct a new dichotomous variable called an imputation flag, in which a value of 1 indicates that imputation was performed on the relevant variable for this student. By including imputation flags in the models, we account for any influence that imputing might have on our results. 5. If the odds ratio [‘‘exp(B)’’ in Table 3] is larger than 1, then students exhibiting that characteristic have an increased odds of being identified, whereas odds ratios that are less than 1 indicate a lesser likelihood of identification. Percentage increases in the odds of being identified can be calculated from odds ratios by subtracting 1 from ‘‘Exp(B)’’ and multiplying by 100 [100(Exp(B)1)%].

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ACKNOWLEDGMENTS This research was supported by grants from the National Science Foundation (HRD-0834177, Chandra Muller, PI, and HRD-0965444, Rebecca Callahan, PI). This research was supported by grant, 5 R24 HD042849, Population Research Center, awarded to the Population Research Center at The University of Texas at Austin by the Eunice Kennedy Shriver National Institute of Health and Child Development. This research has received support from the grant, 5 T32 HD007081, Training Program in Population Studies, awarded to the Population Research Center at The University of Texas at Austin by the Eunice Kennedy Shriver National Institute of Health and Child Development. Opinions reflect those of the authors and do not necessarily reflect those of the granting agencies.

REFERENCES Algozzine, B. (2005). Restrictiveness and race in special education: Facts that remain difficult to ignore anymore. Learning Disabilities – A Contemporary Journal, 3(1), 64–69. Algozzine, B., & Ysseldyke, J. E. (1986). The future of the LD field: Screening and diagnosis. Journal of Learning Disabilities, 19(7), 394–398. Anderson, K. G. (1997). Gender bias and special education referrals. Annals of Dyslexia, 47(1), 151–162. Artiles, A. J., Rueda, R., Salazar, J. J., & Higareda, I. (2005). Within-group diversity in minority disproportionate representation: English language learners in urban school districts. Exceptional Children, 71(3), 283–300. Blair, C., & Scott, K. G. (2002). Proportion of LD placements associated with low socioeconomic status: Evidence for a gradient? Journal of Special Education, 36(1), 14–22. Bradley, R., Danielson, L., & Doolittle, J. (2007). Responsiveness to intervention: 1997 to 2007. Teaching Exceptional Children, 39(5), 8–12. Clampit, M. K., & Silver, S. J. (1990). Demographic characteristics and mean profiles of learning disability index subsets of the standardization sample of the Wechsler intelligence scale for children-revisited. Journal of Learning Disabilities, 23(4), 263–264. Coutinho, M. J., & Oswald, D. P. (2005). State variation in gender disproportionality in special education findings and recommendations. Remedial and Special Education, 26(1), 7–15. Daniels, V. I. (1998). Minority students in gifted and special education programs: The case for educational equity. The Journal of Special Education, 32(1), 41–44. Deshler, D. D., Lenz, B. K., Bulgren, J., Schumaker, J. B., David, B., Grossen, B., & Marquis, J. (2004). Adolescents with disabilities in high school setting: Student characteristics and setting dynamics. Learning Disabilities: A Contemporary Journal, 2(2), 30–48. DSM-IV. (2000). Diagnostic and statistical manual of mental disorders (4th ed.). Washington, DC: American Psychiatric Association.

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ABOUT THE AUTHORS Sharon N. Barnartt is professor and department chair in the Department of Sociology at Gallaudet University. She has coauthored two books: Deaf President Now: The 1988 Revolution at Gallaudet University (1995) and Disability Protests: Contentious Politics 1970–1999 (2000). She coedited Disability Studies Quarterly, Special Issue on Deafness, volume 18, issue 2, 1998, and the Journal of Disability Policy Studies: Special Issue on Women and Disability, volume 8, 1997. She has also presented papers and published widely in the areas of gender differences in socioeconomic status, disability policy issues, social movements in the deaf and disability communities, and disability in developing countries. She has been a board member and president of the Society for Disability Studies, member and chair of the American Sociological Association’s Committee on the Status of Persons with Disabilities, and chair of the American Sociological Association’s Disability and Society Section-in-Formation. She is a founder and coeditor of the Research in Social Science and Disability volume series. Rebecca Callahan, PhD, is an assistant professor of education at The University of Texas at Austin. Her current interests include the academic preparation of immigrants and language minorities and educational policy. Allison C. Carey is an associate professor in the Department of Sociology and Anthropology at Shippensburg University, specializing in disability studies, medical sociology, and sociology of the body. She is author of On the Margins of Citizenship: Intellectual Disability and Civil Rights in Twentieth Century (Temple University Press, 2009), which was awarded the 2010 Scholarly Achievement Award from the North Central Sociological Association, and numerous articles on disability policy. Her current service includes leadership positions in the Society for Disability Studies, the American Sociological Association’s (ASA) Committee on the Status of People with Disabilities, and ASA’s Disability and Society section-information, as well as work with several local disability organizations. Jay Chaskes, PhD, is a professor in the Sociology Department at Rowan University, Glassboro, New Jersey, where he primarily teaches courses in the sociology of disability and related topics. Previously, he has conducted 309

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research and published in the areas of the micro politics of higher education and the lived experience of undergraduate students. Since becoming a person with a disability and a wheelchair user, he has increasingly focused his teaching and research on disability and identity. He is currently conducting narrative research on the lived experience of undergraduate students with a disability. Rosalyn Benjamin Darling, PhD, is Professor Emeritus of Sociology at Indiana University of Pennsylvania, where she taught graduate and undergraduate courses for 14 years. She is the author of eight books and numerous articles and chapters, almost all of which are concerned with the sociology of disability. Before her academic career, she founded and directed an agency serving families of young children with disabilities. She has served on many disability-related boards and policy advisory committees. Dr. Darling is currently writing a book on disability identity for Lynne Rienner Publishers. Mary Jo Deegan is professor of sociology at the University of NebraskaLincoln. She is the author of over 175 articles and the author or editor of 20 books including Jane Addams and the Men of the Chicago School, 1892– 1918; The American Ritual Tapestry; Race, Hull-House, and the University of Chicago; and Self, War, and Society: The Macrosociology of George Herbert Mead. The latter book was awarded the ASA, History of Sociology Section, ‘‘Distinguished Scholarly Publication Award of 2009.’’ Her book, Women and Disability: The Double Handicap, coedited with Nancy Brooks, helped to establish the then-new specialization of gender and disability. She has published numerous articles on physical disability that she is now preparing for a book. Patrick J. Devlieger is a professor of anthropology at the University of Leuven and a visiting professor of disability and human development at the University of Illinois at Chicago. His research interests rely on ethnographic fieldwork and critical analysis regarding thematic topics of disability in cultures, including language, religion and spirituality, space, cultural minorities, violence, and actor networks. Current research focuses on a multicountry study of disabled sports by people with intellectual disabilities and a study on the intersection between physical and bodily borders and boundaries, on cross-border trade by disabled people in the D.R. of Congo. He published critical articles and books in the anthropology of disability, including Rethinking Disability, and Blindness and the Multi-Sensorial City. He founded Ethnographica Journal of Culture and Disability.

About the Authors

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D. Alex Heckert, PhD, is a Professor and Chair of Sociology at Indiana University of Pennsylvania. Most of his published research has been in the areas of family sociology, deviance, and medical sociology. He has published in journals such as Social Forces, Journal of Research in Crime and Delinquency, Journal of Marriage and Family, Demography, Journal of Family Issues, Deviant Behavior, Rural Sociology, Family Relations, Violence and Victims, Journal of Family Violence, Journal of Interpersonal Violence, and The Sociological Quarterly, among others. He and Dr Darling have collaborated on evaluations of disability-related programs and on research on disability orientation. Jeffrey A. Houser PhD, is an assistant professor of sociology at the University of Northern Colorado. Corinne Kirchner (PhD, Columbia Sociology) is lecturer in sociomedical sciences at the Mailman School of Public Health, Columbia University, teaching both ‘‘Disability Policy’’ and ‘‘Social Dimensions of Aging,’’ and is Faculty Fellow at Columbia’s Institute of Social & Economic Research and Policy, where she co-organizes the ‘‘Workshop on Meaning: Language and Socio-Cultural Processes.’’ Since ‘‘re-wiring’’ from the American Foundation for the Blind (AFB) after 30 years as Director of Social Research, Kirchner has been researching, writing, and organizing in Sociology of Language. At AFB, she conducted research on employment, sociodemographics, environmental factors in physical activity, independent living services for older persons, and other concerns of the blind and visually impaired population of the United States, with funding from federal agencies such as the National Institute on Disability and Rehabilitation Research and the private sector (e.g., Robert Wood Johnson Foundation). Among national professional service positions, she has been president of the Society for Disability Studies and coeditor of its journal, Disability Studies Quarterly, editorial board member of the Journal of Disability Policy Studies, and on the Census Bureau’s Advisory Committee on the Decennial Census. Deborah L. Little is an associate professor of sociology at Adelphi University and a former legal services attorney. Her research in disability began with an ethnographic study of an Independent Living Center. She is now working with a colleague on the intersections of care theory and disability studies. Her work has been published in Social Politics and the Disability Studies Quarterly.

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Pepper K. Mueller, MA, finished her Master’s of Arts degree in December 2009 receiving the Dean’s Citation of Excellence and the Outstanding Thesis Award. This article is a summary of her thesis work entitled, ‘‘How dimensions of stigma influence perceptions of disability.’’ She is currently employed at the University of Northern Colorado in the Anthropology and Geography Departments. Chandra Muller, PhD, is a professor of sociology at The University of Texas at Austin. Her current interests include attainment and achievement in science, technology, engineering, and mathematics for diverse students. Mark D. Riddle, PhD, is an associate professor of sociology at the University of Northern Colorado. Leslie Rott, is a sociology PhD candidate at the University of Michigan. Her research focuses on the body, disability, medical sociology, and qualitative methodology. Dara Shifrer, MA, is a graduate student of sociology at The University of Texas at Austin. Her current interests include education, stratification, and race/ethnicity. Cheryl Najarian Souza is an associate professor in the Department of Sociology and a faculty associate at the Center for Women & Work at the University of Massachusetts Lowell. She is also a visiting scholar at the Center for Women in Politics and Public Policy at the University of Massachusetts Boston. Her areas of expertise include disability studies, gender, work and family, and qualitative research methods. In her book, ‘‘Between Worlds: Deaf Women, Work, and Intersections of Gender and Ability’’ (Routledge, 2006), she investigates the educational, paid work, and mothering experiences of Deaf women. In her recent project, ‘‘The public and private lives of politicians: Negotiating work, family, and public policies,’’ she is exploring how both men and women politicians experience their lives as public officials and how they negotiate this experience with their private family lives. Through the use of interviews and observations of respondents, she is investigating how these individuals create, manage, implement, and use public policies. As with her previous research, she is exploring this topic while using sociological, gender studies, and disability studies frameworks.