Theoretical Framework - TBI

NEW APPROACHES IN SOCIOLOGY STUDIES IN SOCIAL INEQUALITY, SOCIAL

CHANGE, AND SOCIAL JUSTICE

Edited by

Nancy A. Naples University of Connecticut

A ROUTLEDGE SERIES

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THE SOCIAL ORGANIZATION OF POLICY An Institutional Ethnography of UN Forest Deliberations Lauren E. Eastwood

THE STRUGGLE OVER GAY, LESBIAN, AND BISEXUAL RIGHTS Facing Off in Cincinnati Kimberly B. Dugan

PARENTING FOR THE STATE An Ethnographic Analysis of Non-Profit Foster Care Teresa Toguchi Swartz

TALKING BACK TO PSYCHIATRY The Psychiatric Consumer/Survivor/ Ex-Patient Movement Linda J. Morrison

CONTEXTUALIZING HOMELESSNESS Critical Theory, Homelessness, and Federal Policy Addressing the Homeless Ken Kyle

LINKING ACTIVISM Ecology, Social Justice, and Education for Social Change Morgan Gardner

THE EVERYDAY LIVES OF SEX WORKERS IN THE NETHERLANDS Katherine Gregory

STRIVING AND SURVIVING A Daily Life Analysis of Honduran Transnational Families Leah Schmalzbauer

UNEQUAL PARTNERSHIPS Beyond the Rhetoric of Philanthropic Collaboration Ira Silver

DOMESTIC DEMOCRACY At Home in South Africa Jennifer Natalie Fish

PRAXIS AND POLITICS Knowledge Production in Social Movements Janet M. Conway

THE SUPPRESSION OF DISSENT How the State and Mass Media Squelch USAmerican Social Movements Jules Boykoff

ARE WE THINKING STRAIGHT? The Politics of Straightness in a Lesbian and Gay Social Movement Organization Daniel K. Cortese

“RICE PLUS” Widows and Economic Survival in Rural Cambodia Susan Hagood Lee

“BETWEEN WORLDS” Deaf Women, Work, and Intersections of Gender and Ability Cheryl G. Najarian

IF I ONLY HAD A BRAIN Deconstructing Brain Injury Mark Sherry

NEW APPROACHES IN SOCIOLOGY STUDIES IN SOCIAL INEQUALITY, SOCIAL CHANGE, AND SOCIAL JUSTICE

NANCY A. NAPLES, General Editor

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IF I ONLY HAD A BRAIN Deconstructing Brain Injury

Mark Sherry

Routledge New York & London

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Published in 2006 by Routledge Taylor & Francis Group 270 Madison Avenue New York, NY 10016

Published in Great Britain by Routledge Taylor & Francis Group 2 Park Square Milton Park, Abingdon Oxon OX14 4RN

© 2006 by Taylor & Francis Group, LLC Routledge is an imprint of Taylor & Francis Group

Printed in the United States of America on acid-free paper 10 9 8 7 6 5 4 3 2 1

International Standard Book Number-10: 0-415-97572-7 (Hardcover) International Standard Book Number-13: 978-0-415-97572-8 (Hardcover) Library of Congress Card Number 2005029591

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Library of Congress Cataloging-in-Publication Data

Sherry, Mark, 1966- If I only had a brain : deconstructing brain injury / Mark Sherry.

p. cm. -- (New approaches in sociology) Includes bibliographical references and index. ISBN 0-415-97572-7 1. Sherry, Mark, 1966- 2. Brain damage--Patients--Biography. 3. Brain damage--Patients--

Rehabilitation. 4. Brain damage--Miscellanea. I. Title. II. Series.

RC387.5.S54 2006 617.4'81044092--dc22 2005029591

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and the Routledge Web site at http://www.routledge-ny.com

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v

Contents

List of Figures and Tables vii

Chapter One Introduction 1

Chapter Two Understanding the Impairment (ABI) 23

Chapter Three Understanding the Disability 53

Chapter Four The (Im)Possibilities of “Insider, Emancipatory” Research 93

Chapter Five Our Impairments 113

Chapter Six Our Experiences of Disability 141

Chapter Seven Differend Perspectives 169

Chapter Eight Conclusion 199

Notes 215

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Bibliography 217

Index 243

vi Contents

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List of Figures and Tables

FIGURES

Figure 3.1 Questions for a Study of Disability to Address 90

Figure 6.1 Themes Identified in Group Meeting 22 March 2000 142

TABLES

Table 2.1 Glasgow Coma Score 28

Table 2.2 Glasgow Outcome Scale 29

Table 5.1 Details of Injuries Experienced by Participants in this Study 129

Table 7.1 A Continuum of Disability/Impairment Identities 171

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Chapter One

Introduction

This book began, as most do, with a personal experience. I was crossing the road and was run over. Seriously injured and not expected to live, I began my recovery from my life’s most unexpected and traumatic twist. My brain and body was a mess; I had operations for the next 9 years. In one sense, this book is about one of my injuries—a brain injury. But it is really about far more than that. It is about identities, disability, difference, the public and the private, human variation, and about the complex interaction of biological and social forces. It is about power and oppression, and how people are situated in a complex web of interlocking social positions which rarely makes them a “pure” victim or a “pure” oppressor. My journey back from near death has been well documented, through many news stories in my home country Australia, and I gained a tiny degree of fame through this experience. I soon found myself positioned as a disability rights advocate and hundreds of brain injury survivors around the world began to contact me, sharing their stories, asking about my recovery, and looking for answers. I was asked to write about the collective experiences of people who were in rehabilitation with me, and have written this book in the desire to capture some sense of these people, their dreams and aspirations.

Brain injury involves so many elements, it is difficult to know where to begin. Should I start by talking about what it is like to suddenly and unexpectedly become disabled? Or should I begin by discussing the causes of brain injury, such as the domestic violence that leads to so many brain injuries among battered women and children? What about the difficulties that so many people experience with the activities of daily living—how much emphasis should I put on that? Perhaps I should talk about the way some people are misdiagnosed, labeled as “vegetative” and left for years in nursing homes without proper rehabilitation? And the high levels of brain

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injury among ethnic minorities and poor people—how can I draw that to people’s attention?

I struggled with these questions for a long time. In the end, I adopted an interdisciplinary approach to the topic. In order to explain what it is like to be disabled, I drew on the disability studies literature. And in order to understand the mechanics of brain injury, I drew upon the medical lit- erature. However, I felt that these two approaches alone would leave my project seriously incomplete. I wanted to expand its scope. Taking inspi- ration from feminist literature, I wanted to be sure to include the public and the private. I wanted to highlight the sexual dimensions of brain injury, and the effects that brain injury has on intimate relationships. I also wanted to recognize that men and women with brain injuries often have radically different experiences. And when I thought about the uneven distribution of brain injury in the community (certain racial and ethnic groups experience a much higher incidence of brain injury than others), I wanted to examine these dynamics as well. This interest eventu- ally led me to the literature about postcolonialism, which seeks to explain the historical and continuing effects of racism and imperialism among dif- ferent racial groups.

It should be clear that this is not a regurgitation of the traditional rehabilitation approach to brain injury. There are plenty of books on that subject, and many authors who are far more qualified to speak about it than I am. Instead, in this book I am trying to write a cultural analysis of brain injury, which draws upon the knowledge of people who have experi- enced brain injuries in order to see what they can teach us all about iden- tity, disability, our sense of self, and our relationships with the world. The approach I have taken towards brain injury has been deeply influenced by the wider literature on disability studies. Linton (1998a:2) defines disability studies in the following way:

Disability studies takes for its subject matter not simply the variations that exist in human behaviour, appearance, functioning, sensory acuity, and cognitive processing but, more crucially, the meaning we make of these variations. The field explores the critical divisions our society makes in creating the normal versus the pathological, the insider versus the outsider, or the competent citizen versus the ward of the state.

Disability studies has been embraced by many disabled people because of the way it draws upon their experiences and emphasizes society’s failure to accommodate their needs. It also challenges the medicalization of disability and critically examines society’s response to an individual’s impairment.

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One of the more controversial aspects of my language around disability is the conscious use of the phrase “disabled people” ahead of “people with disabilities.” I am one of a minority of people who prefer this term—in Aus- tralia at least. I know that it is very popular in Britain. The reason why “peo- ple with disabilities” is popular is because it suggests that people with disabilities are people first, and their “disabilities” come second. The criticism of this argument from disability scholars, however, is that to accept being a “person with a disability” is to accept conditional humanity: granted person- hood on condition that they act as a “normal” person, albeit with an impair- ment (Michalko, 2002). An alternative terminology, which particularly holds sway in British disability literature, is to refer to “disabled people.” It is sug- gested that this terminology highlights the oppression experienced in a dis- abling environment (Morris, 1993). This argument relies on the distinction between “impairment” (bodily difference) and “disability” (prejudicial social reactions to that difference). Among the most progressive elements of the dis- ability movement, “disabled people” is clearly the preferred terminology and I have chosen to use it in this book. However, I also want to register my unease with certain sections of the disability movement who actively police the use of these terms and who are intolerant of others who occasionally use uncommon language. I have wept when I have seen my own work changed, without my consent, so that it conformed to the editorial guidelines of certain disability magazines. For instance, I was asked to write an article on disability hate crimes by the Australian disability publication, Link magazine, only to see my language changed to fit their preference of “people with disabilities” (Sherry, 2003). I simply want to acknowledge that language around disability is always contested and that there are many positions, both within and outside the movement, on this issue. My use of a language which is preferred only by a minority is meant to be deliberately oppositional, in order to promote toler- ance of a plurality of viewpoints.

Disability means various things to various people. Legislative definitions of disability have become increasingly important in the context of commodi- fied welfare assistance to disabled people and accordingly have been subject to a great deal of attention and review (for instance, Albrecht, 1992; Albrecht and Levy 1981; Hahn 1986; Pedlar and Hutchison 2000; Priestley, 1999; Stone, 1984). Indeed, these definitions have changed so often that Hahn (1985: 294) said “Fundamentally, disability is defined by public policy. In other words, disability is whatever policy says it is.” Particularly in North American disability studies, disability is often defined by contrasting it to “normality” (Davis, 1995; Russell, 1998; Thomson, 1997a). For instance Davis (1995) argues that social relations which highlight and devalue bodily difference consolidate the “hegemony of normalcy.” He reconstructs disability

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not as an object of the body but as part of a hegemonic way of thinking about the body and its role in the body politic. The state of “disability,” like that of “normalcy,” is therefore a reflection of biopower. Indeed, Davis believes a “somatic judicial system” enforces the hegemony of normalcy, marginalizing any departure from the goal of a seamless, whole, complete and unfragmented body. Davis (1995: xii) argues that the goal of disability activists has often been “to help ‘normal’ people to see the quotation marks around their assumed state.” Shakespeare (1996: 96) makes a similar point when he com- ments: “a situation where disabled people are defined by their physicality can only be sustained in a situation where non-disabled people have denied their own physicality.”

The problem with defining disabled people by referring to concep- tions of normality is that the disadvantages experienced by people who are labeled “abnormal” do not derive from biology but from implicit social judgments made about certain forms of human variation (Amundson, 2000). So rather than contrast “disability” and “normality,” as many American disability scholars do, I have tended to follow the British model which attaches a more technical meaning attributed to “disability.” In this British literature, the terms “impairment” and “disability” are used fairly consistently: “impairment” is the term used to refer to medical conditions and “disability” refers to the social reactions to impairment, particularly experiences of discrimination, oppression, social exclusion and marginal- ization (for instance, Abberley, 1999; Ahmad, 2000; Barnes, 1999; Drake, 1999; Marks 1999; Oliver 1996; Oliver and Barnes 1998; Priestley 1999). By recognizing disability as a set of power relationships involving exclusion and marginalization, disability studies makes a parallel with other forms of oppression such as racism and sexism.

Beckett and Wrighton (2000), Garland-Thomson (1997a) and Wen- dell (1996) are among many scholars who explicitly compare the social construction of gender with the social construction of disability. Both femi- nism and disability studies focus on people who have been categorised as the “Other.” They both challenge the public/private divide which locates personal experiences of oppression in the private sphere. Rosemary Gar- land-Thomson (1997a: 22) has highlighted the similarities between the social meaning assigned to disabled and female bodies:

I want to theorize disability in the ways that feminism has theorized gen- der. Both feminism and my analysis of disability challenge existing social relations; both resist interpretations of certain bodily configurations and functioning as deviant; both question the ways that differences are invested with meaning; both examine the enforcement of universalizing

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norms; both interrogate the politics of appearance; both explore the politics of naming; both forge positive identities.

The feminist strategy of distinguishing sex from gender has been a conceptual framework which parallels, and perhaps inspired, the distinc- tion in disability studies between impairment and disability. In the same way that feminist politics has challenged the idea that being biologically female destines a woman to domesticity, child care and passivity, the impairment/disability divide contests the construction of disabled people as passive, helpless and needy.

Garland-Thomson suggests that feminism has considered these issues far more than disability studies. However, it is difficult to speak of the dis- ability movement and the feminist movement as separate entities, since many disabled people are feminists, and many feminists are disability rights activists. Feminism has greatly influenced the political analyses and tactics of the disability movement, though the extent to which feminism has changed to accommodate the needs of women is open to debate. Meekosha (1990) argues that changes within feminism in response to the demands of disabled women have often been little more than rhetorical. Nevertheless political struggles of disabled people have frequently taken inspiration from the feminist movement. For instance the focus on self-organisation and widespread political mobilisation by the disability movement has reflected the influence of the women’s movement and other liberation movements (Shakespeare, 1994a).

Feminist theory is also useful for disability studies because it has extensively grappled with the questions of how to conduct non-exploitative research. Many years ago, feminists such as Bart (1971), Bernard (1973) and Smith (1974) questioned the appropriateness of traditional data collec- tion methods, and Oakley (1981) argued that feminists must explore the significance of non-hierarchical relationships in their methodologies. Acker, Barry and Esseveld (1983) pre-empted Oliver’s (1992) call for “emancipa- tory” research methods when they demanded that research should not be oppressive, that it should question dominant intellectual traditions, and that it should be self-reflective. The importance of adopting methodologies which are non-hierarchical and non-exploitative has only become a major question in disability studies over the last ten years, particularly since the publication of a special edition of Disability, Handicap and Society in 1992. Feminists have a long history of grappling with these questions and it would be foolish for disability studies to ignore this body of literature.

I have also been interested in the way people with brain injuries negoti- ate their identities—some choose to hide their experience of disability, and

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pass as nondisabled; others see a great deal of importance in “coming out” as a disabled person; and most use a host of strategies to negotiate their needs within both friendly and hostile environments. In this regard, I have looked to the writings from queer theory in order to better understand the difficulties associated with passing and coming out. There are many other similarities in the experiences of queers and disabled people, including familial isolation, high rates of violence, and the experience of stereotypes and discrimination. As a result, both the queer and the disability movements, and the intellectual disciplines which study them, share many common characteristics. Both queer theory and disability studies share a debt to feminism, and both oppose hege- monic normalcy and deconstruct identity categories. Queer theory, like femi- nism, is not a unified body of thought, but it is characterized by an approach which consistently problematizes categories of identity (Butler, 1990; Spargo, 1999; Wilson, 2001). Queer Theory is useful because it suggests that binary approaches to identity are fundamentally flawed. One of the strands of queer theory “finds the gaps” between male and female genders—such as the case of intersexed people—and it highlights their significance for the study of gender. “Intersex” is a term used to describe someone who has an anatomy that is nei- ther clearly male nor female (Kessler, 2002). Some of the medical terms used to describe people with such anatomy include Androgen Insensitivity Syn- drome, Kilefelter’s Syndrome, progestin virilization, mixed gonadal dysgene- sis, and true hermaphrodism. Often there is no clear answer to the question “which gender is this child,” but the social importance placed on announcing whether the baby is a boy or a girl means that the individual and the family can face complex issues surrounding identity. This literature is useful for dis- ability studies because it provides lessons on how to incorporate the experi- ences of people who have unorthodox identities—for instance, someone with an impairment who does not identify as disabled. At the moment, they simply “fall through the gaps.” People are commonly assumed to be either disabled or non-disabled—those who experience life at the margins are largely ignored. Queer Theory suggests that the “problem” of such identities stems from a binary way of conceptualising the experience. Binary approaches can never capture the nuances and subtleties of lived experience.

Stein and Plummer (1996) argue that queer theory has four main ele- ments: identifying sexual power in different levels of social life, enforced through binary divides and expressed discursively; problematizing sex, gen- der and identities as fluid categories; preferring anti-assimilationist strategies ahead of civil rights strategies; and being prepared to examine areas which would not generally be regarded as sexual, and providing “queer” readings of non-sexualised or heterosexual texts. Queer theory arose in response to the development of the AIDS epidemic, in particular the individualising

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nature of medical responses, shifts in sex education from an emphasis on sexual identities to an emphasis on sexual practices, continuing homopho- bic positioning of AIDS as a gay disease and the coalitional politics involved in responses to AIDS (Jagose, 1996).

Queer theory is also interesting for disability studies because one of its major themes has been whether queers should adopt a political position of assimilation (arguing that they are “just like you” and therefore deserve exactly the same rights as heterosexuals) or whether they should flaunt their differences. The question of assimilation or defiance is also important for disabled people. Queer people have often engaged in flaunting as a form of transgressive politics and flaunting is becoming increasingly popular in the disability movement. Flaunting involves re-claiming words of hatred and turning them into words of pride—e.g. “crip,” “faggot,” “dyke.” Words like “crip” or “gimp” have been reclaimed by some disability activists as a form of cultural defiance. However, Clare (1999) warns that flaunting may be a double-edged sword, because words of hate still retain their original meanings at some level.

Postmodern approaches can also offer disability studies important insights. One ingredient of a postmodern approach which has been identi- fied by Lyotard (1984:xxiv) is “incredulity toward metanarratives.” That is, postmodernists are reluctant to develop general theories, and tend to stress that their conclusions are localized and specific. Many postmod- ernists have contributed significantly to the rethinking of power, self, the body, and identity in contemporary societies. Their work has challenged traditional notions of power, highlighted the importance of language and discourse, emphasized the role of disciplinary mechanisms affecting both macro and micro politics, suggested that the self was decentered and frag- mented rather than rational and autonomous, and promoted deconstruc- tion as a way of critically interrogating knowledge and “truth claims.” Postmodern approaches recognize that identities have very important per- sonal and social effects, but they emphasize the importance of adopting a critical attitude towards binary and essentialist notions of group identities (Nicholson and Seidman, 1999). Postmodernists also deconstruct tradi- tional notions of oppression and tend to have a more complex and nuanced understanding of the dynamics of power than their modernist counterparts. Drawing upon these insights, I will critically examine the discourse of oppression which underpins a great deal of disability studies literature.

I have also drawn upon the work of Postcolonial theorists. “Postcolo- nial” is described by Ashcroft, Griffiths and Tiffin (2003:2) as “all the culture affected by the imperial process from the moment of colonization to the present day.” Moore-Gilbert (1997:12) adds that “Postcolonial criticism” is

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a more or less distinct set of reading practices, if understood as preoc- cupied principally with analysis of cultural forms which mediate, challenge or reflect upon the relations of domination and subordina- tion—economic, cultural and political—between (and often within) nations, races or cultures, which characteristically have their roots in the history of modern European colonialism and imperialism and which, equally characteristically, continue to be apparent in the present era of neo-colonialism.

Like disability studies, postcolonialism has demanded inclusion, acknowl- edgment of difference and analysis of difference, as well as examination of the historical and representational implications of such difference (Bhavnini, 2001:3). I have been able to draw upon concepts from postcolo- nialism (such as hybridity, ambivalence, exile, and diaspora) and apply them to the experiences of people with a brain injury. For instance, these concepts can be applied to the social exclusion and physical dislocation of brain injury survivors who are homeless, or young survivors who are placed in aged care homes.1 Likewise, the enfreakment of some disabled people in medical textbooks, biographies and even in freak shows could be interpreted through the lens offered by the post-colonial concept of the “exotic.” However, I am not simply basing my arguments on an additive model of identity which supplements previous work on disability with a post-colonial edge. I am actually asking how concepts from both disability studies and postcolonialism would change if we fully integrated both disci- plines. As women of color (such as Amos and Parmar, 2001) have agued with regard to race and gender, the intent is not simply to make ‘visible’ the experiences of a marginalized group: it involves a fundamental rethinking of the analytical categories and essentialisms contained within them.

Postcolonialism is incredibly useful for disability studies, I would sug- gest, when it discusses the topic of identity politics. In this respect, another Postcolonial theorist, Kwame Anthony Appiah (1999), argues that three com- mon assumptions often underpin conceptions of ethnicity: an assumption that there is a common biological foundation; an appeal to a sense of shared his- tory; and a suggestion that people share a common culture. This insight is use- ful because it is sometimes suggested that disabled people share common biological, historical or cultural backgrounds, which fundamentally differenti- ate them from non-disabled people. The following comments from Susan Wendell (1989: 117) reflect these assumptions about disabled people:

We are dis-abled. We live with particular social and physical struggles that are partly consequences of the conditions of our bodies and partly

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consequences of the structures and expectations of our societies, but they are struggles which only people with bodies like ours experience.

Branfield (1998: 143) goes further and argues that non-disabled people can never fully understand the oppression of disabled people:

. . . whilst disabled people are not necessarily politicized to our oppres- sion, by virtue of being disabled alone, the disability movement reflects a socio-political reality. For disabled people, this reality is immediate, growing out of our lived experience and producing a direct knowledge for change, for action. ‘Non-disabled’ people cannot fully know this. For them, their experience, their history, their culture is our oppression.

Postcolonial literature suggests such a binary and essentialist approach to identity is conceptually flawed, inconsistent and has undesirable moral and political consequences. For instance, postcolonial feminists have challenged the essentialist assumption of unity and solidarity among “women qua women” (Amos and Parmar, 2001). Bryan’s (2001) study of black support groups also suggests the need for a reconceptual- ization of “black identity” so that the differences between the ways indi- viduals position themselves and hegemonic constructions of their identity are explored. She stresses that the struggle for hegemony is played out not only at national or international levels, but also between individuals and groups. “Black identity” is far more complex than a sim- ple black/white dichotomy might suggest. In this book, I suggest that in the same way that a black/white divide is theoretically inadequate for conceptualising ethnicity, and a male/female binary is inadequate with respect to sex and gender, the disabled/non-disabled divide is also deeply problematic and conceptually limited. People often position themselves somewhere in-between or outside these binary categories, and this posi- tioning is fluid and contextually dependent.

Postcolonial literature is also useful to disability studies because it emphasises that identities are always enmeshed with gender, ethnicity, class, religion, and other social factors. Appiah (1999: 113) stresses that appeals to “African solidarity” may have political mileage but are always problem- atic in some sense:

To accept that Africa can be in these ways a usable identity is not to for- get that all of us belong to multifarious communities with their local customs; it is not to dream of a single African state and to forget the complexly different trajectories of the continents so many languages and

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cultures. “African solidarity” can surely be a vital and enabling rallying cry; but in this world of genders, ethnicities, and classes, of families, religions, and nations, it is as well to remember that there are times when Africa is not the banner we need.

In the same vein, disability studies must recognize that although a sense of disability identity may be important politically, there will be many occasions when people choose to position themselves according to other social factors. That is, disability studies needs to recognise that there are times when “disability” is not the banner we need.

RESEARCH QUESTIONS

The study upon which this book is based was guided by one primary research question, and three secondary research questions. In the research, the term “Acquired Brain Injury” (ABI) was used. ABI is the most popular term in Australia for this experience. It is a broad term referring to any type of injury to the brain which occurs after birth, including as a result of strokes, motor vehicle accidents, falls, alcohol-induced brain injury, neuro- logical diseases and many other conditions (Commonwealth Department of Human Services and Health, 1994). Traumatic Brain Injury (TBI) is a sub- set of Acquired Brain Injury which refers to those brain injuries which occur suddenly when the brain is hit, penetrated, twisted or violently shaken (Winslade, 1998). Traumatic brain injuries produce sudden and immediate impacts upon the individual concerned.

KEY RESEARCH QUESTION

What does the experience of Acquired Brain Injury tell us about impair- ment, disability, embodiment and identity?

SECONDARY RESEARCH QUESTIONS

• Has the literature on ABI tended to rely on a medical model of disability? How different would our understanding of ABI be if we relied on a social model?

• How can we best understand disability, impairment, identity and embodiment—through a medical or a social model, or something else? How could these models be improved?

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• Can disability studies learn something from other disciplines such as feminism, queer theory, postcolonial and postmodern literature? Can these disciplines learn something from disability studies?

I shall now provide a brief “working definition” of some of these key terms. Following the work of Merleu-Ponty (1962), I would define “embodiment” as the process through which the body operates in the world. According to Williams and Bendelow (1998), embodiment lies ambiguously across the nature/culture divide: it is lived and sentient, as well as expressive and mindful. Following Frank (1991), they position embodiment at the intersection of the corporeal, the discursive and the institutional. Embodiment is at once a personal and a social process, involving the way we experience and interpret our bodies. In arguing for an increased emphasis on embodiment, I want to distinguish my own position from that of authors who argue that there is no material body outside dis- course. For instance, I would disagree with Tremain (2000: 296) who argues:

“ . . . the body” has no pre-given materiality, structure or meaning prior to its articulation in discourse.

Instead, I would side with feminist authors such as Grosz (1994: 23–24) who argue for a “corporeal feminism” and problematize the body as being situated at the intersection of the biological and the discursive:

In the face of social constructionism, the body’s tangibility, its matter, its (quasi) nature may be invoked; but, in opposition to essentialism, biologism, and naturalism, it is the body as cultural product that must be stressed.

“Impairment” is a narrower category than embodiment. Within disability studies, a discussion of impairment usually involves situating bodily difference within a biomedical paradigm which labels and measures deviation from a “norm” (Paterson and Hughes, 2000: 42). However, more recently disability studies has begun to recognize that the experience of impairment, like embod- iment, is both a social and a personal one (Hughes and Paterson, 1997).

“Disability” refers to the social oppression which people with impaired minds or bodies experience. Disability is a fluid category. Not all impaired people are disabled in every context (Oliver and Barnes, 1998).

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“Identity” is a subject position. Hall (1996) stresses that identities are fluid categories which are constructed through difference. Identities are represen- tations that always involve exclusions. Every identity has an “Other” and a “margin” which tests its validity. Identities are often shifting, fragmented and fractured.

WHY STUDY BRAIN INJURY?

One of the reasons why I am studying brain injury is that my personal experience has helped me to understand its relevance to many debates about identity politics within feminism, postcolonialism, postmodernism and disability studies in recent years. As well, it is an intrinsically interest- ing topic: it is important as a public health issue; it has serious and often life-threatening consequences; welfare and health sectors have often responded poorly to the needs of people with brain injuries; and it has been rather neglected within disability studies.

Identity Issues and Brain Injury

If someone survives a brain injury, they inevitably face the challenges of disclosure: who to tell, what to say, how to frame the discussion, and so on. How people with a brain injury meet this challenge tells us a lot about the way we manage our identities, and how those identities some- times seem to manage us. Over the last 20 years there has been a verita- ble explosion of writing on the field of identity—but the experience of brain injury has been largely ignored in this literature. This is interesting, because we tend to assume that negotiating an identity involves a fairly high level of cognitive ability—an assumption which may or may not be true.

Brain Injury as a Public Health Issue

The research for this book was conducted in Australia, where over 339,000 people are disabled because of an Acquired Brain Injury (ABI). It was also conducted in Queensland, the state with the highest rate of ABI in the country (Fortune and Wen, 1999). Although some of the dynamics are clearly local issues, such as those dealing with specific welfare agencies, or problems associated with Australia’s health and insurance system, there are many people with a brain injury all over the world who are dealing with similar problems—trying to understand the changes in their minds and bodies, getting welfare, finding work, dealing with social isolation, and so on. Brain injury is a major public health issue in every country—the US Center for Disease Control (2003) estimates that approximately one and a

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half million Americans experience a traumatic brain injury every year, and the British organization Headway suggests that every year, approximately a million English people attend hospital as a result of head injuries.

Severity of the Impairments Resulting from Brain Injury

ABI is a severe impairment with damaging personal, social, economic and political effects. Indeed, ABI often has lifelong effects on people’s daily liv- ing activities, employment and social activities, and on their cognitive, social, physical, and psychological capabilities. Winslade (1998: 43–44) states that half of the people with serious brain injuries are unable to bathe, feed or dress themselves within three months. For those in a coma, the sta- tistics are worse: 40% die without returning to consciousness, 20% are either in a persistent vegetative state or are severely disabled and 40% recover but may still have some permanent disability. Survival from certain types of head injury is a relatively recent phenomenon; it is only since the 1980s that survival became possible following moderate or severe ABI. Since then, individuals who sustained a moderate or severe ABI have tended to survive the acute onset. Increased survival rates have partly been the result of advances in road safety, medical research and medical technol- ogy (Winslade, 1998).

ABI is Poorly-Resourced

One of the reasons why I was inspired to write this book is that in Aus- tralia, brain injury is, and has been, one of the most poorly resourced of all impairments. Accordingly, significant levels of unmet need exist for most brain injury survivors. Such unmet needs have been recognized in many reviews of service provision, including the Discussion Paper on the Needs of People with Acquired Brain Injury published by Disability Services Queensland in conjunction with the Acquired Brain Injury Outreach Ser- vice and the Brain Injury Association of Queensland (2000), the Study into the Accommodation Needs of Young People Requiring Nursing Home Level of Care by Melbourne Citymission (1999), Making Rights Count: Services for People with a Disability published by the Commonwealth Department of Health and Family Services (1996), and the Review into Ser- vice Provision in Queensland by Elizabeth Kendall (1991). An analysis of these reports indicates that unmet needs include:

• problems with diagnosis and inadequate staff training in acute care;

• barriers to rehabilitation, including lack of services and exclu- sionary eligibility criteria;

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• insufficient community living options and shortages of appropri- ate respite care;

• financial problems, particularly for people without compensable injuries;

• the need for vocational and educational assistance; • the need for public education around brain injury; • lack of support for family members and carers; • lack of services and transport for people in country areas; and • lack of culturally appropriate services for people from Aboriginal

and Non-English Speaking Backgrounds.

ABI is Marginalized within the Social Model

Studying ABI has not yet been a major priority for writers who support the social model of disability. Chappell (1998: 212) argues that very little research has been done within the social model on non-physical and non- sensory impairments and that “some of the arguments emanating from within the social model are assumed to refer to all disabled people, when in reality they do not.” Some authors, such as Longmore (2003), Olkin (1999), Garland-Thomson (1997a) and Wendell (1996) are explicit: they are talking about “physical disabilities” (sic)—cognitive impairments like brain injury are simply ignored. Chappell was writing about the failure of such theorists to consider the position of people with “learning difficul- ties.” However, since the publication of Chappell’s work, there has been a considerable growth in this body of literature, with contributions from Atkinson and Walmsley (1999), Dowse (2001), Goodley (2001, 2000), Knox, Mok and Parmenter (2000), and Young and Quibell (2000). Never- theless, the area of brain injury is still neglected within the social model. Chappell (1998: 212) suggests that as long as a significant number of impairments are ignored within the social model:

. . . the danger is then that the analyses which emerge from the sociol- ogy of disability are theoretically flawed and their explanatory power is weakened.

The failure of social model theorists to incorporate the experiences of brain injury survivors in their writing may be particularly significant, given that the experience of brain injury has some unique elements. For instance, the expe- rience of a coma, the lack of awareness which accompanies some brain injuries, the experience of rejection by services which cater for other disabled people, and the complex social, ethical and biological issues associated with

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the “vegetative state” involve important issues around citizenship, recogni- tion and embodiment which are quite unique to this impairment. By exam- ining the extent to which our theorizing of disability needs to be improved to incorporate the experiences of people with an ABI, this research aims to fill an important gap in the existing literature.

METHODOLOGY

This research project adopted a qualitative and participatory approach. It involved data collection through in-depth interviews, conducted both indi- vidually and in groups, a process of keeping a reflective journal and field notes, and participant observation. Another important aspect of the study involved being self-critical; reflecting on my personal experience of brain injury and examining the extent to which this has influenced the research process. As well, the study confronts the ethical question of how to involve other brain injury survivors in the research process without exploiting them. This is a major methodological question given that many disabled people find traditional research methods oppressive (Barnes and Mercer, 1997; Oliver 1997). In order to address this ethical issue, I used a combina- tion of theoretical and empirical methods including a disability studies framework, “insider” research, and “emancipatory” research methods. I recognise that the term “emancipatory” disability research implies to some extent that all disabled people are heading in the same direction towards one goal of liberation. Later in the book, as I discuss the complexity and heterogeneity of the movement, and the Foucauldian conception of power which problematizes concepts of oppression and emancipation, I explore some of the reasons why I am somewhat uncomfortable with this phrase. Nevertheless, the phrase “emancipatory” research is quite dominant in dis- ability literature and is a useful signpost for the direction of the research.

A “Disability Studies” Framework

I decided very early in my research to adopt a “disability studies” focus rather than a traditional (positivist) approach. Although disability studies is not a unified body of thought, I have chosen to link my work with this field because it has sought to establish alternatives to the traditional approaches which are widely seen as oppressive to disabled people. Oliver (1992) argues that traditional research methodologies have been a “rip off” which have done almost nothing to address the social oppression which disabled people experience on a daily basis. He suggests that if it is to help improve the lives of disabled people, research needs to move in a new direction, examining what he terms “institutionalized disablism” in all its forms.

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Morris (1992: 157) likewise suggests that research into disability issues is usually perceived by disabled people as part of the problem, rather than part of any solution. Linton (1998a) has also identified the flaws of the tra- ditional positivist approach towards disability. She argues that the tradi- tional approach is characterized by the absence of disabled voices. The dominant emphasis is on individual rehabilitation; interventions are not intended to change the context or environment. Environmental changes are demanded by the social model and a “disability studies” approach. While the social model is nowhere near as important in Australia as it is in Britain, either in policy frameworks or in the consciousness of disabled people, it is still influential among sections of the disability movement. For instance, a recent Australian publication states that it “openly embraces a social perspective on disability” (Clear, 2000: xiv). However, a number of the peak bodies in the disability movement are still organized along impair- ment lines and operate according to the “charity” model.2

“Insider” Research

My research could be labeled “insider” research in the sense that I am one of the people being studied as well as the researcher. Again, I need to regis- ter my unease (at the outset) regarding any essentialist identity category which suggests only “insiders” have legitimacy. Such identity categories are usually used to exclude, rather than include. However, I must recognize that I am an active member of various brain injury and disability groups, and participants in the study have been recruited from one of those groups. I have a very close relationship with these people, based on our shared experiences, our long-standing friendships and our open, honest, trusting and supportive relationships. This is a strength rather than a weakness of the research—it is precisely the sort of committed research which disability scholars have demanded—for instance, Moore, Beazley and Maelzer (1998), Oliver (1992), and Stone and Priestley (1996). By involving other brain-injury survivors with whom I have well-established and frank rela- tionships, I have jettisoned the traditional “mystique” of a researcher. I have non-hierarchical relationships with the research participants, based on mutual respect. The level of honesty and trust amongst us meant that each participant felt more at ease identifying areas which were important to them. My accountability and accessibility has also provided a richness of experience that would have been impossible using any other methodology. However, I am acutely aware that the issue of setting appropriate bound- aries can be quite a challenge in “insider” research. I have therefore paid special attention to the issue of defining what material “is” and “is not” part of the research process.

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