Lennard J. Davis (Ed.)-The Disability Studies Reader-Routledge

The Disability Studies Reader

The Fourth Edition of the Disability Studies Reader breaks new ground by emphasizing the global, transgender, homonational, and post-human conceptions of disability. Including physical disabilities, but exploring issues around pain, mental disability, and invisible disabilities, this edition explores more varieties of bodily and mental experience. New histories of the legal, social, and cultural give a broader picture of disability than ever before. Now available for the first time in eBook format.

Lennard J. Davis is Professor of Disability and Human Development, English, and Medi- cal Education at the University of Illinois at Chicago. He is the author of, among other works, Enforcing Normalcy: Disability, Deafness, and the Body; Bending Over Backwards: Disability, Dismodernism, and Other Difficult Positions; My Sense of Silence: Memoirs of a Childhood with Deafness; and Obsession: A History. The Disability Studies Reader

Fourth Edition

Lennard J. Davis First published 2013 by Routledge 711 Third Avenue, New York, NY 10017 Simultaneously published in the UK by Routledge 2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN Routledge is an imprint of the Taylor & Francis Group, an informa business © 2013 Taylor & Francis The right of the editor to be identified as the author of the editorial material, and of the authors for their individual chapters, has been asserted in accordance with sections 77 and 78 of the Copyright, Designs and Patents Act 1988. All rights reserved. No part of this book may be reprinted or reproduced or utilised in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publishers. Trademark notice: Product or corporate names may be trademarks or registered trademarks, and are used only for identification and explanation without intent to infringe. Library of Congress Cataloging in Publication Data Davis, Lennard J., 1949– The disability studies reader / Lennard J. Davis.—4th ed. p. cm. ISBN 978–0–415–63052–8 (hardback)— ISBN 978–0–415–63051–1 (pbk.)— ISBN 978–0–203–07788–7 (ebook) 1. People with disabilities. 2. Sociology of disability. 3. Disability studies. I. Title. HV1568.D5696 2013 362.4—dc23 2012024747

ISBN: 978–0–415–63052–8 (hbk) ISBN: 978–0–415–63051–1 (pbk) ISBN: 978–0–203–07788–7 (ebk)

Typeset in Utopia by Swales & Willis Ltd, Exeter, Devon CONTENTS

Preface to the Fourth Edition xiii

1 Introduction: Disability, Normality, and Power 1

LENNARD J. DAVIS This essay lays out the way in which normality came to hold powerful sway over the way we think about the mind and body. Calling on scholars and students to rethink the disabled body so as to open up alternative readings of culture and power, Davis signals the critical approach to this Reader in general while discussing historical and social perspectives in particular.

PART I: HISTORICAL PERSPECTIVES

2 Disability and the Justification of Inequality in American History 17 DOUGLAS C. BAYNTON Baynton discusses how disability is used to justify discrimination against marginalized groups in America, surveying three great citizenship debates of the nineteenth and early twentieth centuries: women’s suffrage, African American freedom, and the restriction of immigration.

3 “Heaven’s Special Child”: The Making of Poster Children 34 PAUL LONGMORE This essay provides an examination of the history of telethons, describing them as cultural mechanisms that display poster children to evoke sympathy and profit. While the child becomes a celebrity in the eyes of the public, he or she also can be construed as an exploited spectacle.

4 Disabling Attitudes: U.S. Disability Law and the ADA Amendments Act 42 ELIZABETH F. EMENS vi | CONTENTS

In light of the Americans with Disabilities Act (ADA) and the more recent ADA Amend- ments Act (ADAAA), in which definitions of disability and impairment narrowed with the ADA and broadened with the ADAAA, this essay speculates on whether the broader vision of disability will survive in the court system. Considering social attitudes and connections between the private and public spheres of American culture and politics, Emens predicts that the courts will ultimately find new ways to narrow the scope of the law’s protections.

PART II: THE POLITICS OF DISABILITY 5 Disabling Postcolonialism: Global Disability Cultures and Democratic Criticism 61 CLARE BARKER AND STUART MURRAY An exploration of the intersections of two major critical fields—Postcolonial Studies and Disability Studies—this essay discovers new approaches to literary and cultural criticism. Realizing that postcolonialism and disability are both tied to questions of power, Barker and Murray assert that Critical Disability Studies “needs to adapt its assumptions and methodologies to include and respond to postcolonial locations of disability.”

6 Abortion and Disability: Who Should and Should Not Inhabit the World? 74 RUTH HUBBARD This essay presents the problem of prenatal testing in relationship to disability and, while not opposing testing, raises concerns about the discrimination inherent in such interventions.

7 Disability Rights and Selective Abortion 87 MARSHA SAXTON Saxton alerts readers to the possible conflict between the goals of the abortion rights movement and that of the disability rights movement, and she proposes goals for both that might bring their aspirations in line with one another.

8 Disability, Democracy, and the New Genetics 100 MICHAEL BÉRUBÉ Bérubé considers whether prenatal testing for genetic diseases fits in with our notions of democracy. Would it be in the interests of a democratic culture to promote or restrict the rights of parents to select the child they want, particularly when it comes to disability?

9 A Mad Fight: Psychiatry and Disability Activism 115 BRADLEY LEWIS This essay locates disability activism in the Mad Pride movement, which fights for the rights of psychiatric survivors and consumers of mental health services. CONTENTS | vii

10 “The Institution Yet to Come”: Analyzing Incarceration Through a Disability Lens 132 LIAT BEN-MOSHE This essay analyzes the reality of incarceration through the prism of disability by connecting prisons to psychiatric hospitals and other institutions that house people with cognitive, developmental, psychiatric and physical disabilities. Ben-Moshe therefore suggests the pressing need to expand notions of what comes to be classified as “incarceration.” The essay also highlights abolition, the call to close down prisons and other institutions, as a strategy to resist further incarceration.

PART III: STIGMA AND ILLNESS 11 Stigma: An Enigma Demystified 147 LERITA COLEMAN BROWN This essay examines Erving Goffman’s key concept of “stigma” from a disability studies perspective.

12 Unhealthy Disabled: Treating Chronic Illnesses as Disabilities 161 SUSAN WENDELL Chronic illness is a major cause of disability, especially in women. Therefore, any adequate feminist understanding of disability must encompass chronic illnesses. Wendell argues that there are important differences between healthy disabled and unhealthy disabled people that are likely to affect such issues as treatment of impairment in disability and feminist politics, accommodation of disability in activism and employment, identification of persons as disabled, disability pride, and prevention and “cure” of disabilities.

PART IV: THEORIZING DISABILITY 13 The Cost of Getting Better: Ability and Debility 177 JASBIR K. PUAR Puar argues for a deconstruction of what ability and disability mean and pushes for a broader politics of capacity and debility that puts duress on the seamless production of able bodies in relation to disability. Examining the recent “It Gets Better” campaign against queer youth suicide, Puar links suicide to forms of slow death, asking which bodies are able to capitalize on their vulnerabilities in neoliberalism and which are not.

14 Enabling Disability: Rewriting Kinship, Reimagining Citizenship 185 FAYE GINSBURG AND RAYNA RAPP Anthropologists propose a new notion of kinship to see how cultures claim or reject disabled fetuses, newborns, and young children. viii | CONTENTS

15 Aesthetic Nervousness 202 ATO QUAYSON Coining a new term—“aesthetic nervousness”—the postcolonial critic theorizes the crisis resulting from the inclusion of disability in literary or dramatic works.

16 The Social Model of Disability 214 TOM SHAKESPEARE This essay includes a description of the social model and a criticism of some aspects of that paradigm.

17 Narrative Prosthesis 222 DAVID MITCHELL AND SHARON SNYDER The authors develop the idea that narrative requires disability as an essential component of storytelling, particularly so the plot can fix or cure the impairment.

18 The Unexceptional Schizophrenic: A Post-Postmodern Introduction 236 CATHERINE PRENDERGAST This essay argues that postmodernism has failed to deconstruct the schizophrenic, keeping a monolithic view based on some canonical writings rather than seeing the schizophrenic as part of a new emerging group that is active, multivocal, and seeking to fight for their rights.

19 Deaf Studies in the 21st Century: “Deaf-Gain” and the Future of Human Diversity 246 H-DIRKSEN L. BAUMAN AND JOSEPH J. MURRAY This essay offers a rhetorical shift from “hearing loss” to “Deaf-gain” by shedding light on the cognitive, creative and cultural contributions of Deaf communities to human diversity.

PART V: IDENTITIES AND INTERSECTIONALITIES 20 The End of Identity Politics: On Disability as an Unstable Category 263 LENNARD J. DAVIS Davis argues that postmodern ideas of identity challenge the existent models in disability studies and further argues that since disability is a shifting identity, newer paradigms are needed to explain it.

21 Disability and the Theory of Complex Embodiment—For Identity Politics in a New Register 278 TOBIN SIEBERS Using the ideas of post-positivist realism, Siebers argues that disability is a valid and actual identity as opposed to a deconstructive-driven model. CONTENTS | ix

22 Defining Mental Disability 298 MARGARET PRICE The contested boundaries between disability, illness, and mental illness are discussed in terms of mental disability. Ultimately, Price argues that higher education would benefit from practices that create a more accessible academic world for those who identify or are labeled as mentally disabled. The excerpt included here explores various ways to name and define mental disability, drawing evidence in part from the author’s own experience.

23 Disability and Blackness 308 JOSH LUKIN Lukin provides a short history of the intersection of blackness and disability, highlighting the experiences of Johnnie Lacy and Donald Galloway, who were members of the Berkeley Center for Independent Living in the 1960s. The essay traces a theme of black involvement and yet exclusion from disability activism. It also moves into the current moment and follows some of the recent scholarship in the field.

24 My Body, My Closet: Invisible Disability and the Limits of Coming Out 316 ELLEN SAMUELS This essay discusses the coming-out discourse in the context of a person whose physical appearance does not immediately signal a disability Considering the complicated dynamics inherent in the analogizing of social identities, the politics of visibility and invisibility, and focusing on two “invisible” identities of lesbian- femme and nonvisible disability, Samuels “queers” disability in order to develop new paradigms of identity, representation, and social interaction.

25 Integrating Disability, Transforming Feminist Theory 333 ROSEMARIE GARLAND-THOMSON This essay applies the insights of disability studies to feminist theory.

26 Unspeakable Offenses: Untangling Race and Disability in Discourses of Intersectionality 354 NIRMALA EREVELLES AND ANDREA MINEAR Erevelles and Minear draw on narratives exemplifying the intersections between race, class, gender, and disability. Through the stories of Eleanor Bumpurs, Junius Wilson, and Cassie and Aliya Smith, the margins of multiple identity categories are placed at the forefront, outlining how and why individuals of categorical intersectionality are constituted as non-citizens and (no)bodies by the very social institutions (legal, educational, and rehabilitational) that are designed to protect, nurture, and empower them. x | CONTENTS

27 Compulsory Able-Bodiedness and Queer/Disabled Existence 369 ROBERT MCRUER This essay points to the mutually reinforcing nature of heterosexuality and able- bodiedness, arguing that disability studies might benefit by adopting some of the strategies of queer theory.

PART VI: DISABILITY AND CULTURE 28 Cripping Heterosexuality, Queering Able-Bodiedness: Murderball, Brokeback Mountain and the Contested Masculine Body 381 CYNTHIA BAROUNIS Using the two films as examples, the essay argues that disability in one is normalized by depicting disabled athletes as hyper-masculine while homosexuality in the other is invested with values of able-bodiedness.

29 Sculpting Body Ideals: Alison Lapper Pregnant and the Public Display of Disability 398 ANN MILLETT-GALLANT The author of this essay ponders how Alison Lapper’s monumental self-portrait statue of her pregnant, non-normative, nude body fits into the history and culture of public art.

30 “When Black Women Start Going on Prozac …” The Politics of Race, Gender, and Emotional Distress in Meri Nana-Ama Danquah’s Willow Weep for Me 411 ANNA MOLLOW Mollow considers the ways in which readers of Danquah’s work think about depression in black women, particularly in terms of how intersectionality affects the idea of mental impairment in the social model of disability.

31 The Enfreakment of Photography 432 DAVID HEVEY The essay reveals that disabled people are used as metaphors of being marginalized, isolated, freakish, and weird in high-culture photography.

32 Blindness and Visual Culture: An Eyewitness Account 447 GEORGINA KLEEGE Kleege critiques philosophers and critics who have exploited the concept of blindness as a convenient conceptual device, erasing the nuances and complexities of blind experience.

33 Disability, Life Narrative, and Representation 456 G. THOMAS COUSER CONTENTS | xi

This essay argues that disability has become a major theme in memoirs and other forms of life-writing, opening up that experience to readers and taking control of the representation.

34 Autism as Culture 460 JOSEPH N. STRAUS Straus poses the question of whether we can think of autism as not simply a cognitive disorder but as a culture and part of culture.

35 Disability, Design, and Branding: Rethinking Disability for the 21st Century 485 ELIZABETH DEPOY AND STEPHEN GILSON This essay presents an innovative way of thinking about disability as disjuncture and the significant role that design and branding play in creating this ill-fit. DePoy and Gil- son assert that design and branding provide the contemporary opportunity and relevant strategies for rethinking disability and social change, healing notions of disjuncture in the postmodern and post-postmodern world of disability studies.

PART VII: FICTION, MEMOIR, AND POETRY 36 Stones in My Pockets, Stones in My Heart 497 ELI CLARE A memoir that explores the way the author’s disability, queer identity, and memories of childhood sexual abuse intersect with and thread though one another.

37 Unspeakable Conversations 507 HARRIET MCBRYDE JOHNSON An account by the late disabled writer who meets and argues with utilitarian philosopher Peter Singer, himself an advocate for withdrawing life support from severely disabled people.

38 Helen and Frida 520 ANNE FINGER A dreamlike account of being disabled as a child and imagining a romantic movie starring Helen Keller and Frieda Kahlo.

39 “I Am Not One of The” and “Cripple Lullaby” 526 CHERYL MARIE WADE Poems that explore issues of identity and self-definition from a disabled perspective.

40 “Beauty and Variations” 528 KENNY FRIES A poem that explores the nature and meanings of beauty. xii | CONTENTS

41 Selections from Planet of the Blind 530 STEVE KUUSISTO A memoir by the poet/writer of being a teenage boy with limited eyesight and an expansive imagination.

42 Selected Poems 537 JIM FERRIS This selection includes twelve previously unpublished poems by this poet and disability studies scholar.

List of Contributors 553

Credit Lines 559

Index 563 PREFACE TO THE FOURTH EDITION

In each of the previous three editions I began the preface by taking the pulse of the field of disability studies at the current moment. In the first edition I lamented the lack of traction disability studies was having in getting attention. In the second I saw disability studies on the rise. In the third edition I wrote “disability studies is definitely part of the academic world and civil society,” noting that Barack Obama had included people with disabilities in his acceptance speech. Now it the fourth edition I can say that disability is not only accepted but also has become very much a critical term in discussions of being, post-humanism, political theory, transgender theory, philosophy, and the like. In a recent talk I gave at the CUNY Graduate Center, a PhD student asked the question “Why is disability studies so hot right now?” While I didn’t quite agree about the relative temperature of the subject, I do think that having the question even asked at this moment is a sign of the times. As we begin to think through the complexities of being and post-identity, disability has become an almost necessary aspect of understanding the human–animal relationship, questions of interdependency and independence as well as issues around the construction or materiality of gender, the body, and sexuality. Perhaps an indicator of the currency of disability studies is the asymptotic shortening of the time between editions (based on Routledge’s assessment of the viability of the field). Between the first and second editions, there were 10 years, between the second and third there were four, and between the third and the fourth, three years. What this diminishing interim period has allowed is that we are moving to a point where this text is becoming less of an anthology and more of a yearbook. Because of that fact, I have been able to replace some very good essays in good conscience, feeling that those authors removed may well reappear in future editions, while also having the excitement of including many new and younger scholars who are dealing with the most current issues. This is also the first Reader that will be available electronically. In the previous issue I lamented the difficulty of being able to provide easier access to the work because of the cost of doing business in the electronic age. This time, Routledge was deeply committed, along with me, to making the edition available as an e-book. Obviously the advantage will be that many more people with disabilities will be able to engage with the work in this more flexible and accessible format. I am particularly pleased with this advancement because the late Paul Longmore had made a particularly strong plea for an electronic version of the Disability Studies Reader, and am doubly glad that the volume will be accessible in this way and that an essay of Longmore’s on telethons will appear as well. xiv | PREFACE

As always, I have had a tough time in selecting which works would remain and which would be newly included. With the aid of Routledge’s very helpful marketing department, I have been able to see which essays are being used in courses and which are not. My decisions are not made completely on a utilitarian basis, but at least the marketing information provides a bit of perspective on these factors. I am ever mindful of providing a balance between essays of foundational and historic interest in disability studies and newer ones that provide continuing conversation with the current moment. I also want to thank the many people who responded to my call on various Internet lists for sugges- tions of topics and particular essays to showcase. These responses really do make a difference and help me with my very difficult task. This edition has, based on these requests and my own viewpoint, more essays relating to the global. We have more UK based academics writing, and more on law, race, social policy, visual culture, cognitive and affective disabilities, post-humanism, and reformulations of sex and gender. There are more challenges to received wisdom, as the field evolves, and more attempts to rethink some of the founding notions of disability, while holding onto what continues to work. I would particularly like to thank Steve Rutter, my editor at Routledge, who keeps me on track and moves me along when I falter. Leah Babb-Rosenfeld provided assistance, along with her replacement Samantha Barbero. Elizabeth Geist, my research assistant at Fordham University, where I was a distinguished visiting professor this past semes- ter, was very helpful in providing organization and support. John Harrington, the Dean of Fordham University, and the Department of English there, gave me the time and the opportunity to be able to do much of the editorial work on this project. As always, my own departments at the University of Illinois at Chicago were very helpful, as were my colleagues in disability studies and English. I would like to thank the instructors who reviewed the third edition and provided feedback: Sarah L Allred, Berry College Paul Marchbanks, California Polytechnic State University Heather Garrison, East Stroudsburg University of Pennsylvania Adriana Estill, Carleton College Nolana Yip, Georgetown University Mary Oschwald, Indiana University of Pennsynvania David G. LoConto, Jacksonville State University Michael F. Bérubé, Pennsylvania State University Zosha Stuckey, Syracuse University Mary Oschwald, Portland State University Jami Anderson, University of Michigan, Flint Chris Gabbard, University of North Florida Rebecca Babcock, University of Texas of the Permian Basin Kristenne M. Robison, Westminster College Christopher Krentz, University of Virginia Jean Franzino, University of Virginia Sharan E. Brown, University of Washington To help instructors with the use of this book in courses, we have provided test questions that can be obtained by contacting Routledge at [email protected] for a copy of these test items. CHAPTER 1

Introduction: Normality, Power, and Culture Lennard J. Davis

We live in a world of norms. Each of us endeavors to be normal or else deliberately tries to avoid that state. We consider what the average person does, thinks, earns, or consumes. We rank our intelligence, our cholesterol level, our weight, height, sex drive, bodily dimensions along some conceptual line from subnormal to above-average. We consume a minimum daily balance of vitamins and nutrients based on what an average human should consume. Our children are ranked in school and tested to determine where they fit into a normal curve of learning, of intelligence. Doctors measure and weigh them to see if they are above or below average on the height and weight curves. There is probably no area of contemporary life in which some idea of a norm, mean, or average has not been calculated. To understand the disabled body, one must return to the concept of the norm, the normal body. So much of writing about disability has focused on the disabled person as the object of study, just as the study of race has focused on the person of color. But as with recent scholarship on race, which has turned its attention to whiteness and intersectionality, I would like to focus not so much on the construction of disability as on the construction of normalcy. I do this because the “problem” is not the person with disabilities; the problem is the way that normalcy is constructed to create the “problem” of the disabled person. A common assumption would be that some concept of the norm must have always existed. After all, people seem to have an inherent desire to compare themselves to others. But the idea of a norm is less a condition of human nature than it is a feature of a certain kind of society. Recent work on the ancient Greeks, on preindustrial Europe, and on tribal peoples, for example, shows that disability was once regarded very differently from the way it is now. As we will see, the social process of disabling arrived with industrialization and with the set of practices and discourses that are linked to late eighteenth- and nineteenth-century notions of nationality, race, gender, criminality, sexual orientation, and so on. I begin with the rather remarkable fact that the constellation of words describing this concept “normal,” “normalcy,” “normality,” “norm,” “average,” “abnormal”—all entered the European languages rather late in human history. The word “normal” as “constituting, conforming to, not deviating or different from, the common type or standard, regular, usual” only enters the English language around 1840. (Previously, the word 2 | LENNARD J. DAVIS

had meant “perpendicular”; the carpenter’s square, called a “norm,” provided the root meaning.) Likewise, the word “norm,” in the modern sense, has only been in use since around 1855, and “normality” and “normalcy” appeared in 1849 and 1857, respectively. If the lexicographical information is relevant, it is possible to date the coming into consciousness in English of an idea of “the norm” over the period 1840–1860. If we rethink our assumptions about the universality of the concept of the norm, what we might arrive at is the concept that preceded it: that of the “ideal,” a word we find dating from the seventeenth century. Without making too simplistic a division in the history, one can nevertheless try to imagine a world in which the concept of normality does not exist. Rather, what we have is the ideal body, as exemplified in the tradition of nude Venuses, for example. This idea presents a mytho-poetic body that is linked to that of the gods (in traditions in which the god’s body is visualized). This divine body, then, this ideal body, is not attainable by a human. The notion of an ideal implies that, in this case, the human body as visualized in art or imagination must be composed from the ideal parts of living models. These models individually can never embody the ideal since an ideal, by definition, can never be found in this world. Pliny tells us that the Greek artist Zeuxis tried to paint Aphrodite, the goddess of love, by using as his models all the beautiful women of Crotona in order to select in each her ideal feature or body part and combine these into the ideal figure of the goddess. One young woman provides a face and another her breasts. The central point here is that in a culture with an ideal form of the body, all members of the population are below the ideal. No one young lady of Crotona can be the ideal. By definition, one can never have an ideal body. And there is no social pressure, we would imagine, that populations have bodies that conform to the ideal. If the concept of the norm or average enters European culture, or at least the European languages, only in the nineteenth century, one has to ask what is the cause of this conceptualization? One of the logical places to turn in trying to understand concepts like “norm” and “average” is that branch of knowledge known as statistics. It was the French statisti- cian Adolphe Quetelet (1796–1847) who contributed the most to a generalized notion of the normal as an imperative. He noticed that the “law of error,” used by astronomers to locate a star by plotting all the sightings and then averaging the errors, could be equally applied to the distribution of human features such as height and weight. He then took a further step of formulating the concept of “l’homme moyen” or the average man. Quete- let maintained that this abstract human was the average of all human attributes in a given country. Quetelet’s average man was a combination of l’homme moyen physique and l’homme moyen morale, both a physically average and a morally average construct. With such thinking, the average then becomes paradoxically a kind of ideal, a position devoutly to be wished. As Quetelet wrote, “an individual who epitomized in himself, at a given time, all the qualities of the average man, would represent at once all the greatness, beauty and goodness of that being” (cited in Porter 1986, 102). Furthermore, one must observe that Quetelet meant this hegemony of the middle to apply not only to moral qualities but to the body as well. He wrote: “deviations more or less great from the mean have constituted [for artists] ugliness in body as well as vice in morals and a state of sickness with regard to the constitution” (ibid., 103). Here Zeuxis’s notion of physical beauty as an exceptional ideal becomes transformed into beauty as the average. Quetelet foresaw a kind of utopia of the norm associated with progress, just as Marx foresaw a utopia of the norm in so far as wealth and production is concerned. INTRODUCTION: NORMALITY, POWER, AND CULTURE | 3

Marx actually cites Quetelet’s notion of the average man in a discussion of the labor theory of value. The concept of a norm, unlike that of an ideal, implies that the majority of the population must or should somehow be part of the norm. The norm pins down that majority of the population that falls under the arch of the standard bell-shaped curve. This curve, the graph of an exponential function, that was known variously as the astronomer’s “error law,” the “normal distribution,” the “Gaussian density function,” or simply “the bell curve,” became in its own way a symbol of the tyranny of the norm. Any bell curve will always have at its extremities those characteristics that deviate from the norm. So, with the concept of the norm comes the concept of deviations or extremes. When we think of bodies, in a society where the concept of the norm is operative, then people with disabilities will be thought of as deviants. This, as we have seen, is in contrast to societies with the concept of an ideal, in which all people have a non-ideal status.2 In England, there was a burst of interest in statistics during the 1830s. A statistical office was set up at the Board of Trade in 1832, and the General Register Office was created in 1837 to collect vital statistics. The use of statistics began an important movement, and there is a telling connection for the purposes of this essay between the founders of statistics and their larger intentions. The rather amazing fact is that almost all the early statisticians had one thing in common: they were eugenicists. The same is true of key figures in the eugenics movement: Sir Francis Galton, Karl Pearson, and R. A. Fisher.3 While this coincidence seems almost too striking to be true, we must remember that there is a real connection between figuring the statistical measure of humans and then hoping to improve humans so that deviations from the norm diminish. Statistics is bound up with eugenics because the central insight of statistics is the idea that a population can be normed. An important consequence of the idea of the norm is that it divides the total population into standard and nonstandard subpopulations. The next step in conceiving of the population as norm and non-norm is for the state to attempt to norm the nonstandard—the aim of eugenics. Of course such an activity is profoundly paradoxical since the inviolable rule of statistics is that all phenomena will always conform to a bell curve. So norming the non-normal is an activity as problematic as unty- ing the Gordian knot. MacKenzie asserts that it is not so much that Galton’s statistics made possible eugenics but rather that “the needs of eugenics in large part determined the content of Galton’s statistical theory” (1981, 52). In any case, a symbiotic relationship exists between statistical science and eugenic concerns. Both bring into society the concept of a norm, particularly a normal body, and thus in effect create the concept of the disabled body. It is also worth noting the interesting triangulation of eugenicist interests. On the one hand Sir Francis Galton was cousin to Charles Darwin, whose notion of the evolutionary advantage of the fittest lays the foundation for eugenics and also for the idea of a perfectible body undergoing progressive improvement. As one scholar has put it, “Eugenics was in reality applied biology based on the central biological theory of the day, namely the Darwinian theory of evolution” (Farrall 1985, 55). Darwin’s ideas serve to place disabled people along the wayside as evolutionary defectives to be surpassed by natural selection. So, eugenics became obsessed with the elimination of “defectives,” a category which included the “feebleminded,” the deaf, the blind, the physically defective, and so on. 4 | LENNARD J. DAVIS

In a related discourse, Galton created the modern system of fingerprinting for personal identification. Galton’s interest came out of a desire to show that certain physical traits could be inherited. As he wrote:

one of the inducements to making these inquiries into personal identification has been to discover independent features suitable for hereditary investigation. . . . it is not improbable, and worth taking pains to inquire whether each person may not carry visibly about his body undeniable evidence of his parentage and near kinships. (cited in MacKenzie 1981, 65)

Fingerprinting was seen as a physical mark of parentage, a kind of serial number written on the body. But further, one can say that the notion of fingerprinting pushes forward the idea that the human body is standardized and contains a serial number, as it were, embedded in its corporeality. Thus the body has an identity that coincides with its essence and cannot be altered by moral, artistic, or human will. This indelibility of corporeal identity only furthers the mark placed on the body by other physical qualities—intelligence, height, reaction time. By this logic, the person enters into an identical relationship with the body, the body forms the identity, and the identity is unchangeable and indelible as one’s place on the normal curve. For our purposes, then, this fingerprinting of the body means that the marks of physical difference become synonymous with the identity of the person. Finally, Galton can be linked to that other major figure connected with the discourse of disability in the nineteenth century—Alexander Graham Bell. In 1883, the same year that Galton coined the term “eugenics,” Bell delivered his eugenicist speech Memoir upon the Formation of a Deaf Variety of the Human Race, warning of the “tendency among deaf-mutes to select deaf-mutes as their partners in marriage” (1969, 19) with the dire consequence that a race of deaf people might be created. This echoing of Dr. Franken- stein’s fear that his monster might mate and produce a race of monsters emphasizes the terror with which the “normal” beholds the differently abled.4 Noting how the various interests come together in Galton, we can see evolution, fingerprinting, and the attempt to control the reproductive rights of the deaf as all pointing to a conception of the body as perfectible but only when subject to the necessary control of the eugenicists. The identity of people becomes defined by irrepressible identificatory physical qualities that can be measured. Deviance from the norm can be identified and indeed criminalized, particularly in the sense that fingerprints came to be associated with identifying deviants who wished to hide their identities. Galton made significant changes in statistical theory that created the concept of the norm. He took what had been called “error theory,” a technique by which astronomers attempted to show that one could locate a star by taking into account the variety of sightings. The sightings, all of which could not be correct, if plotted would fall into a bell curve, with most sightings falling into the center, that is to say, the correct location of the star. The errors would fall to the sides of the bell curve. Galton’s contribution to statistics was to change the name of the curve from “the law of frequency of error” or “error curve,” the term used by Quetelet, to the “normal distribution” curve. The significance of these changes relates directly to Galton’s eugenicist interests. In an “error curve” the extremes of the curve are the most mistaken in accuracy. But if one is looking at human traits, then the extremes, particularly what Galton saw as positive INTRODUCTION: NORMALITY, POWER, AND CULTURE | 5 extremes—tallness, high intelligence, ambitiousness, strength, fertility—would have to be seen as errors. Rather than “errors” Galton wanted to think of the extremes as distributions of a trait. As MacKenzie notes:

Thus there was a gradual transition from use of the term “probable error” to the term “standard deviation” (which is free of the implication that a deviation is in any sense an error), and from the term “law of error” to the term “normal distribution.” (1981, 59)

But even without the idea of error, Galton still faced the problem that in a normal distribution curve that graphed height, for example, both tallness and shortness would be seen as extremes in a continuum where average stature would be the norm. The problem for Galton was that, given his desire to perfect the human race, or at least its British segment, tallness was preferable to shortness. How could both extremes be considered equally deviant from the norm? So Galton substituted the idea of ranking for the concept of averaging. That is, he changed the way one might look at the curve from one that used the mean to one that used the median—a significant change in thinking eugenically. If a trait, say intelligence, is considered by its average, then the majority of people would determine what intelligence should be—and intelligence would be defined by the mediocre middle. Galton, wanting to avoid the middling of desired traits, would prefer to think of intelligence in ranked order. Although high intelligence in a normal distribution would simply be an extreme, under a ranked system it would become the highest ranked trait. Galton divided his curve into quartiles, so that he was able to emphasize ranked orders of intelligence, as we would say that someone was in the first quartile in intelligence (low intelligence) or the fourth quartile (high intelligence). Galton’s work led directly to current “intelligence quotient” (IQ) and scholastic achievement tests. In fact, Galton revised Gauss’s bell curve to show the superiority of the desired trait (for example, high intelligence). He created what he called an “ogive,” which is arranged in quartiles with an ascending curve that features the desired trait as “higher” than the undesirable deviation. As Stigler notes:

If a hundred individuals’ talents were ordered, each could be assigned the numerical value corresponding to its percentile in the curve of “deviations from an average”: the middlemost (or median) talent had value 0 (representing mediocrity), an individual at the upper quartile was assigned the value 1 (representing one probable error above mediocrity), and so on. (1986, 271)

What these revisions by Galton signify is an attempt to redefine the concept of the “ideal” in relation to the general population. First, the application of the idea of a norm to the human body creates the idea of deviance or a “deviant” body. Second, the idea of a norm pushes the normal variation of the body through a stricter template guiding the way the body “should” be. Third, the revision of the “normal curve of distribution” into quartiles, ranked in order, and so on, creates a new kind of “ideal.” This statistical ideal is unlike the classical notion of the ideal, which contains no imperative that everyone should strive to be perfect. The new ideal of ranked order is powered by the imperative of the norm, and then is supplemented by the notion of progress, human perfectibility, and the elimination of deviance, to create a dominating, hegemonic vision of what the human body should be. 6 | LENNARD J. DAVIS

While we tend to associate eugenics with a Nazi-like racial supremacy, it is important to realize that eugenics was not the trade of a fringe group of right-wing, fascist mani- acs. Rather, it became the common belief and practice of many, if not most, European and American citizens. When Marx used Quetelet’s idea of the average in his formulation of average wage and abstract labor, socialists as well as others embraced eugenic claims, seeing in the perfectibility of the human body a utopian hope for social and economic improvement. Once people allowed that there were norms and ranks in human physiology, then the idea that we might want to, for example, increase the intelligence of humans, or decrease birth defects, did not seem so farfetched. These ideas were widely influential and the influence of eugenicist ideas persisted well into the twentieth century, so that someone like Emma Goldman could write that unless birth control was encouraged, the state would “legally encourage the increase of paupers, syphilitics, epileptics, dipsomaniacs, cripples, criminals, and degenerates” (Kevles 1985, 90). One problem for people with disabilities was that eugenicists tended to group together all allegedly “undesirable” traits. So, for example, criminals, the poor, and people with disabilities might be mentioned in the same breath. Take Karl Pearson, a leading figure in the eugenics movement, who defined the “unfit” as follows: “the habitual criminal, the professional tramp, the tuberculous, the insane, the mentally defective, the alcoholic, the diseased from birth or from excess” (cited in Kevles 1985, 33). In 1911, Pearson headed the Department of Applied Statistics, which included Galton and the Biometric Labora- tories at University College in London. This department gathered eugenic information on the inheritance of physical and mental traits including “scientific, commercial, and legal ability, but also hermaphroditism, hemophilia, cleft palate, harelip, tuberculosis, diabetes, deaf-mutism, polydactyly (more than five fingers) or brachydactyly (stub fingers), insanity, and mental deficiency” (ibid., 38–9). Here again one sees a strange selection of disabilities merged with other types of human variations. All of these deviations from the norm were regarded in the long run as contributing to the disease of the nation. As one official in the Eugenics Record Office asserted:

. . . the only way to keep a nation strong mentally and physically is to see that each new generation is derived chiefly from the fitter members of the generation before. (ibid., 39–40)

The emphasis on nation and national fitness obviously plays into the metaphor of the body. If individual citizens are not fit, if they do not fit into the nation, then the national body will not be fit. Of course, such arguments are based on a false idea of the body politic—by that notion a hunchbacked citizenry would make a hunchbacked nation. Never- theless, the eugenic “logic” that individual variations would accumulate into a composite national identity was a powerful one. This belief combined with an industrial mentality that saw workers as interchangeable and therefore sought to create a universal worker whose physical characteristics would be uniform, as would the result of their labors—a uniform product. One of the central foci of eugenics was what was broadly called “feeblemindedness.”5 This term included low intelligence, mental illness, and even “pauperism,” since low income was equated with “relative inefficiency” (ibid., 46).6 Likewise, certain ethnic groups were associated with feeblemindedness and pauperism. Charles Davenport, an American eugenicist, thought that the influx of European immigrants would make the American population “darker in pigmentation, smaller in stature . . . INTRODUCTION: NORMALITY, POWER, AND CULTURE | 7 more given to crimes of larceny, assault, murder, rape, and sex-immorality” (cited in ibid., 48). In his research, Davenport scrutinized the records of “prisons, hospitals, alm- shouses, and institutions for the mentally deficient, the deaf, the blind, and the insane” (ibid., 55). The association between what we would now call disability and criminal activity, mental incompetence, sexual license, and so on established a legacy that people with disabilities are still having trouble living down. This equation was so strong that an American journalist writing in the early twentieth century could celebrate “the inspiring, the wonderful, message of the new heredity” as opposed to the sorrow of bearing children who were “diseased or crippled or depraved” (ibid., 67). The conflation of disability with depravity expressed itself in the formulation “defective class.” As the president of the University of Wisconsin declared after World War One, “we know enough about eugenics so that if the knowledge were applied, the defective classes would disappear within a generation” (ibid., 68). And it must be reiterated that the eugenics movement was not stocked with eccentrics. Averell Harriman’s sister, Mary Harriman, as well as John D. Rockefeller, funded Davenport. Prime Ministers A. J. Balfour, Neville Chamber- lain, and Winston Churchill, along with President Theodore Roosevelt, H. G. Wells, and John Maynard Keynes, among many others, were members of eugenicist organizations. Francis Galton was knighted in 1909 for his work, and in 1910 he received the Copley Medal, the Royal Society’s highest honor. A Galton Society met regularly in the Ameri- can Museum of Natural History in New York City. In 1911 the Oxford University Union moved approval of the main principles behind eugenics by a vote of almost two to one. In Kansas, the 1920 state fair held a contest for “fitter families” based on their eugenic family histories; a brochure for the contest noted about the awards, “this trophy and medal are worth more than livestock sweepstakes. . . . For health is wealth and a sound mind in a sound body is the most priceless of human possessions” (ibid., 62). County fairs like these also administered intelligence tests, medical exams, and screened for venereal disease. In England, bills were introduced in Parliament to control mentally disabled people, and in 1933 the prestigious scientific magazine Nature approved the Nazis’ proposal of a bill for “the avoidance of inherited diseases in posterity” by sterilizing the disabled. The magazine editorial said “the Bill, as it reads, will command the appreciative attention of all who are interested in the controlled and deliberate improvement of human stock.” The list of disabilities for which sterilization would be appropriate were “congenital feeblemindedness, manic depressive insanity, schizophrenia, hereditary epilepsy, hereditary St Vitus’s dance, hereditary blindness and deafness, hereditary bodily malformation and habitual alcoholism” (cited in MacKenzie 1981, 44). We have largely forgotten that what Hitler did in developing a hideous policy of eugenics was just to implement the theories of the British and American eugenicists. Hitler’s statement in Mein Kampf that “the struggle for the daily livelihood [between species] leaves behind, in the ruck, everything that is weak or diseased or wavering” (cited in Blacker 1952, 143) is not qualitatively different from any of the many similar statements we have seen before. And even the conclusions Hitler draws are not very different from those of the likes of Galton, Bell, and others.

In this matter, the State must assert itself as the trustee of a millennial future. . . . In order to fulfill this duty in a practical manner, the State will have to avail itself of modern medical 8 | LENNARD J. DAVIS

discoveries. It must proclaim as unfit for procreation all those who are afflicted with some visible hereditary disease or are the carriers of it; and practical measures must be adopted to have such people rendered sterile. (cited in Blacker 1952, 144)

One might want to add here a set of speculations about Sigmund Freud. His work was made especially possible by the idea of the normal. In fact, it is hard to imagine the existence of psychoanalysis without the concept of normalcy. Indeed, one of the core principles behind psychoanalysis was “if the vita sexualis is normal, there can be no neurosis” (Freud 1977, 386). Psychoanalysis through talk therapyt bring patients back to their normal selves. Although I cannot go into a close analysis of Freud’s work here, it is instructive to think of the ways in which Freud is producing a eugenics of the mind— creating the concepts of normal sexuality, normal function, and then contrasting them with the perverse, abnormal, pathological, and even criminal. The first depiction in literature of an attempt to norm an individual member of the population occurred in the 1850s during the development of the idea of the normal body. In Flaubert’s Madame Bovary, Charles Bovary performs a trendy operation that would correct the club foot of Hippolyte, the stable boy of the local inn. This corrective operation is seen as “new” and related to “progress” (Flaubert 1965, 125). Hippolyte is assailed with reasons why he should alter his foot. He is told, it “must considerably interfere with the proper performance of your work” (ibid., 126). And in addition to redefining him in terms of his ability to carry out work, Homais adds: “Think what would have happened if you had been called into the army, and had to fight under our national banner!” (ibid., 126). So national interests and again productivity are emphasized. But Hippolyte has been doing fine in his job as stable boy; his disability has not interfered with his performance in the community under traditional standards. In fact, Hippolyte seems to use his club foot to his advantage, as the narrator notes:

But on the equine foot, wide indeed as a horse’s hoof, with is horny skin, and large toes . . . the cripple ran about like a deer from morn till night. He was constantly to be seen on the Square, jumping round the carts, thrusting his limping foot forwards. He seemed even stronger on that leg than the other. By dint of hard service it had acquired, as it were, moral qualities of patience and energy; and when he was given some heavy work to do, he would support himself on it in preference to the sound one. (ibid., 126)

Hippolyte’s disability is in fact an ability, one which he relies on, and from which he gets extra horsepower, as it were. But although Hippolyte is more than capable, the operation must be performed to bring him back to the human and away from the equine, which the first syllable of his name suggests. To have a disability is to be an animal, to be part of the Other. A newspaper article appears after the operation’s apparent initial success, praising the spirit of progress. The article envisages Hippolyte’s welcome back into the human community adding: “Hasn’t the time come to cry out that the blind shall see, the deaf hear, the lame walk?” (ibid., 128) The imperative is clear: science will eradicate disability. However, by a touch of Flaubertian irony, Hippolyte’s leg becomes gangrenous and has to be amputated. The older doctor lectures Charles about his attempt to norm this individual. INTRODUCTION: NORMALITY, POWER, AND CULTURE | 9

This is what you get from listening to the fads from Paris! . . . We are practitioners; we cure people, and we wouldn’t dream of operating on someone who is in perfect health. Straighten club feet! As if one could straighten club feet indeed! It is as if one wished to make a hunchback straight! (ibid., 131)

While Flaubert’s work illustrates some of the points I have been making, it is important that we do not simply think of the novel as merely an example of how an historical development lodges within a particular text. Rather, I think there is a larger claim to be made about novels and norms. While Flaubert may parody current ideas about normalcy in medicine, there is another sense in which the novel as a form promotes and symbolically produces normative structures. Indeed, the whole focus of Madame Bovary is on Emma’s abnormality and Flau- bert’s abhorrence of normal life. If we accept that novels are a social practice that arose as part of the project of middle-class hegemony,7 then we can see that the plot and character development of novels tend to pull toward the normative. For example, most characters in nineteenth-century novels are somewhat ordinary people who are put in abnormal circumstances, as opposed to the heroic characters who represent the ideal in earlier forms such as the epic. If disability appears in a novel, it is rarely centrally represented. It is unusual for a main character to be a person with disabilities, although minor characters, like Tiny Tim, can be deformed in ways that arouse pity. In the case of Esther Summerson, who is scarred by smallpox, her scars are made virtually to disappear through the agency of love. Dinah Craik’s Olive is one of the few nineteenth-centuy novels in which the main character has a disability (a slight spinal deformity), but even with her the emphasis on the deformity diminishes over the course of the novel so by then end it is no longer an issue. On the other hand, as sufficient research has shown, more often than not villains tend to be physically abnormal: scarred, deformed, or mutilated.8 I am not saying simply that novels embody the prejudices of society toward people with disabilities. That is clearly a truism. Rather, I am asserting that the very structures on which the novel rests tend to be normative, ideologically emphasizing the universal quality of the central character whose normativity encourages us to identify with him or her.9 Furthermore, the novel’s goal is to reproduce, on some level, the semiologically normative signs surrounding the reader, that paradoxically help the reader to read those signs in the world as well as the text. This normativity in narrative will by definition create the abnormal, the Other, the disabled, the native, the colonized subject, and so on. Even on the level of plot, one can see the implication of eugenic notions of normativity. The parentage of characters in novels plays a crucial role. Rather than being self-creating beings, characters in novels have deep biological debts to their forebears, even if the characters are orphans—or perhaps especially if they are orphans. The great Heli- odoric plots of romance, in which lower-class characters are found actually to be noble, take a new turn in the novel. While nobility may be less important, characters nevertheless inherit bourgeois respectability, moral rectitude, and eventually money and position through their genetic connection. In the novelistic world of nature versus nurture, nature almost always wins out. Thus Oliver Twist will naturally bear the banner of bourgeois morality and linguistic normativity, even though he grows up in the workhouse. Oliver will always be normal, even in abnormal circumstances.10 10 | LENNARD J. DAVIS

A further development in the novel can be seen in Zola’s works. Before Zola, for example in the work of Balzac, the author attempted to show how the inherently good character of a protagonist was affected by the material world. Thus we read of the journey of the soul, of everyman or everywoman, through a trying and corrupting world. But Zola’s theory of the novel depends on the idea of inherited traits and biological determinism. As Zola wrote in The Experimental Novel:

Determinism dominates everything. It is scientific investigation, it is experimental reasoning, which combats one by one the hypotheses of the idealists, and which replaces purely imaginary novels by novels of observation and experimentation. (1964, 18)

In this view, the author is a kind of scientist watching how humans, with their naturally inherited dispositions, interact with each other. As Zola wrote, his intention in the Rougon-Macquart series was to show how heredity would influence a family “making superhuman efforts but always failing because of its own nature and the influences upon it” (Zola 1993, viii). This series would be a study of the “singular effect of heredity” (ibid.). “These young girls so pure, these young men so loyal, represented to us in certain novels, do not belong to the earth. . . . We tell everything, we do not make a choice, neither do we idealize” (ibid., 127). My point is that a disabilities-studies consciousness can alter the way we see not just novels that have main characters who are disabled but any novel. In thinking through the issue of disability, I have come to see that almost any literary work will have some reference to the abnormal, to disability, and so on. I would explain this phenomenon as a result of the hegemony of normalcy. This normalcy must constantly be enforced in public venues (like the novel), must always be creating and bolstering its image by processing, comparing, constructing, deconstructing images of normalcy and the abnormal. In fact, once one begins to notice, there really is a rare novel that does not have some characters with disabilities—characters who are lame, tubercular, dying of AIDS, chronically ill, depressed, mentally ill, and so on. Let me take the example of some novels by Joseph Conrad. I pick Conrad not because he is especially representative, but just because I happen to be teaching a course on Conrad. Although he is not remembered in any sense as a writer on disability, Conrad is a good test case, as it turns out, because he wrote during a period when eugenics had permeated British society and when Freud had begun to write about normal and abnormal psychology. Conrad, too, was somewhat influenced by Zola, particularly in The Secret Agent. The first thing I noticed about Conrad’s work is that metaphors of disability abound. Each book has numerous instances of phrases like the following selections from Lord Jim:

a dance of lame, blind, mute thoughts—a whirl of awful cripples. (Conrad 1986, 114)

[he] comported himself in that clatter as though he had been stone-deaf. (ibid., 183) INTRODUCTION: NORMALITY, POWER, AND CULTURE | 11

there was nothing of the cripple about him. (ibid., 234)

Her broken figure hovered in crippled little jumps . . . (ibid., 263)

he was made blind and deaf and without pity . . . (ibid., 300)

a blind belief in the righteousness of his will against all mankind . . . (ibid., 317)

They were erring men whom suffering had made blind to right and wrong. (ibid., 333)

you dismal cripples, you . . . (ibid., 340)

unmoved like a deaf man . . . (ibid., 319)

These references are almost like tics, appearing at regular intervals. They tend to focus on deafness, blindness, dumbness, and lameness, and they tend to use these metaphors to represent limitations on normal morals, ethics, and of course language. While it is entirely possible to maintain that these figures of speech are hardly more than mere linguistic convention, I would argue that the very regularity of these occurrences speaks to a reflexive patrolling function in which the author continuously checks and notes. The use of phrenology, too, is linked to the patrolling of normalcy, through the construction of character. So, in Heart of Darkness, for example, when Marlow is about to leave for Africa a doctor measures the dimensions of his skull to enable him to discern if any quantitative changes subsequently occur as a result of the colonial encounter. So many of the characters in novels are formed from the ableist cultural repertoire of normalized head, face, and body features that characteristically signify personal qualities. Thus in The Secret Agent, the corpulent, lazy body of Verloc indicates his moral sleazi- ness, and Stevie’s large ears and head shape are explicitly seen by Ossipon as characteristic of degeneracy and criminality as described in the theories of the nineteenth-century eugenic phrenologist Cesare Lombroso. In a Zolaesque moment of insight, Ossipon sees Stevie’s degeneracy as linked to his sister Winnie:

he gazed scientifically at that woman, the sister of a degenerate, a degenerate herself—of a murdering type. He gazed at her and invoked Lombroso. . . . He gazed scientifically. He gazed at her cheeks, at her nose, at her eyes, at her ears . . . Bad! . . . Fatal! (Conrad 1968, 269)

This eugenic gaze that scrutinizes Winnie and Stevie is really only a recapitulation of the novelistic gaze that sees meaning in normative and non-normative features. In fact, every member of the Verloc family has something “wrong” with them, including Win- nie’s mother who has trouble walking on her edematous legs. The moral turpitude and 12 | LENNARD J. DAVIS

physical grimness of London is embodied in Verloc’s inner circle. Michaelis, too, is obese and “wheezed as if deadened and oppressed by the layer of fat on his chest” (ibid., 73). Karl Yundt is toothless, gouty, and walks with a cane. Ossipon is racially abnormal having “crinkly yellow hair . . . a flattened nose and prominent mouth cast in the rough mould of the Negro type . . . [and] almond-shaped eyes [that] leered languidly over high cheek- bones” (ibid., 75)—all features indicating African and Asian qualities, particularly the cunning, opiated glance. The latter links up the eugenic with the racialized and national- ized matrix of identity. I am not claiming that this reading of Conrad is brilliant or definitive. But I do want to show that even in texts that do not appear to be about disability, the issue of normalcy is fully deployed. One can find in almost any novel, I would argue, a kind of surveying of the terrain of the body, an attention to difference—physical, mental, and national. This activity of consolidating the hegemony of normalcy is one that needs more attention, in addition to the kinds of work that have been done in locating the thematics of disability in literature. What I have tried to show here is that the very term that permeates our contemporary life—the normal—is a configuration that arises in a particular historical moment. It is part of a notion of progress, of industrialization, and of ideological consolidation of the power of the bourgeoisie. The implications of the hegemony of normalcy are profound and extend into the very heart of cultural production. The novel form, that proliferator of ideology, is intricately connected with concepts of the norm. From the typicality of the central character, to the normalizing devices of plot to bring deviant characters back into the norms of society, to the normalizing coda of endings, the nineteenth- and twentieth-century novel promulgates and disburses notions of normalcy and by extension makes of physical differences ideological differences. Characters with disabilities are always marked with ideological meaning, as are moments of disease or accident that transform such characters. One of the tasks for a developing consciousness of disability issues is the attempt, then, to reverse the hegemony of the normal and to institute alternative ways of thinking about the abnormal. Many of the essays in the collection do just that. As disability studies progresses along with postmodernism and posthumanism, we are seeing that normality continues to hold sway insofar as the body, the medical, and the push to diagnose disabilities are concerned. But the writers in this reader are not simply trying to include disability under the rubric of normal but to question the idea of normality, and to expand the definition of disability into such concepts as neurodiversity, debility and capacity, chronic illness, invisible conditions, and the like. In other words while consolidating the idea of disability, these critics are at the same time disarticulating the elements of disability to ponder how part and whole fit together. It’s less a question of segregating the normal from the abnormal, the old eugenic game, as it is to describe, detail, theorize, and occupy the category of disability. Along these lines, intersectionality—the subject position of holding multiple identities—makes complex the general rubric of disability itself. If anything, this collection of essays serves to render complex the simple fact of impairment while rendering simple the ideological screen of normality.

NOTES 1. This thinking obviously is still alive and well. During the U.S. Presidential election of 1994, Newt Gingrich accused President Clinton of being “the enemy of normal Americans.” When asked at a later date to clarify INTRODUCTION: NORMALITY, POWER, AND CULTURE | 13

what he meant, he said his meaning was that “normal” meant “middle class” (New York Times, November 14, 1994, A17). 2. One wants to make sure that Aristotle’s idea of the mean is not confused with the norm. The Aristotlean mean is a kind of fictional construct. Aristotle advocates that in choosing between personal traits, one should tend to chose between the extremes. He does not however think of the population as falling generally into that mean. The mean, for Aristotle, is more of heuristic device to assist in moral and ethical choices. In the sense of being a middle term or a middle way, it carries more of a spacial sense than does the term “average” or “norm.” 3. This rather remarkable confluence between eugenics and statistics has been pointed out by Donald A. MacKenzie, but I do not believe his observations have had the impact they should. 4. See my Enforcing Disability Chapter 6 for more on the novel Frankenstein and its relation to notions of disability. 5. Many twentieth-century prejudices against the learning disabled come from this period. The founder of the intelligence test still in use, Alfred Binet, was a Galton acolyte. The American psychologist Henry H. Goddard used Binet’s tests in America and turned the numbers into categories—“idiots” being those whose mental age was one or two, “imbeciles” ranged in mental age from three to seven. Goddard invented the term “moron” (which he took from the Greek for “dull” or “stupid”) for those between eight and twelve. Pejorative terms like “moron” or “retarded” have by now found their way into common usage (Kevles, 78). And even the term “mongoloid idiot” to describe a person with Down’s syndrome was used as recently as 1970s not as a pejorative term but in medical texts as a diagnosis. [See Michael Bérubé’s fascinating article “Life As We Know It” for more on this phenomenon of labelling.] 6. If this argument sounds strangely familiar, it is being repeated and promulgated in the neo-conservative book The Bell Curve, which claims that poverty and intelligence are linked through inherited characteristics. 7. This assumption is based on my previous works—Factual Fictions: Origins of the English Novel and Resisting Novels: Fiction and Ideology —as well as the cumulative body of writing about the relationship between capitalism, material life, culture, and fiction. The work of Raymond Williams, Terry Eagleton, Nancy Armstrong, Mary Poovey, John Bender, Michael McKeon, and others points in similar directions. 8. The issue of people with disabilities in literature is a well-documented one and is one I want generally to avoid in this work. Excellent books abound on the subject, including Alan Gartner and Tom Joe, eds., Images of the Disabled, Disabling Images (New York: Praeger, 1987) and the work of Deborah Kent including “In Search of a Heroine: Images of Women with Disabilities in Fiction and Drama,” in Michelle Fine and Adrienne Asch, eds., Women with Disabilities: Essays in Psychology, Culture, and Politics (Philadelphia: Temple University Press, 1988). 9. And if the main character has a major disability, then we are encouraged to identify with that character’s ability to overcome their disability. 10. The genealogical family line is both hereditary and financial in the bourgeois novel. The role of the family is defined by Jürgen Habermas thus: “as a genealogical link it [the family] guaranteed a continuity of personnel that consisted materially in the accumulation of capital and was anchored in the absence of legal restrictions concerning the inheritance of property” (47). The fact that the biological connectedness and the financial connectedness are conflated in the novel only furthers the point that normality is an enforced condition that upholds the totality of the bourgeois system. 11. I deal with the Lacanian idea of the corps morcelé in Chapter 6 of Enforcing Normalcy. In that section I show the relation between the fragmented body and the response to disability. Here, let me just say that Stevie’s turning into a fragmented body makes sense given the fear “normal” observers have that if they allow a concept of disability to associate with their bodies, they will lose control of their normalcy and their bodies will fall apart. 12. See Chapter 4 of Enforcing Normalcy for more on the relation of freak shows to nationalism, colonialism, and disability. See also Rosemarie Garland Thompson’s Freakery: Cultural Spectacles of the Extraordinary Body (New York: NYU Press, 1996).

WORKS CITED Bell, Alexander Graham. 1969. Memoir upon the Formation of a Deaf Variety of the Human Race. Washington, DC: Alexander Graham Bell Association for the Deaf. Blacker, C. P. 1952. Eugenics: Galton and After. Cambridge, Mass.: Harvard University Press. 14 | LENNARD J. DAVIS

Conrad, Joseph. 1924. “An Outpost of Progress.” In Tales of Unrest. Garden City, NY: Doubleday, Page & Company. ——. 1990 [1968]. The Secret Agent. London: Penguin. ——. 1989 [1957]. Under Western Eyes. London: Penguin. ——. 1924. Youth. Garden City: Doubleday, Page & Company. ——. 1986. Lord Jim. London: Penguin. Defoe, Daniel. 1975. Robinson C rusoe. New York: Norton. Farrall, Lyndsay Andrew. 1985. The Origin and Growth of the English Eugenics Movement 1865–1925. New York: Garland. Flaubert, Gustave. 1965. Madam Bovary. Trans. Paul de Man. New York: Norton. Freud, Sigmund. 1977. Introductory Lectures on Psychoanalysis. Trans. James Strachey. New York: Norton. Kevles, Daniel J. 1985. In the Name of Eugenics: Genetics and the Uses of Human Heredity. New York: Alfred A. Knopf. MacKenzie, Donald. A. 1981. Statistics in Britain, 1865–1930. Edinburgh: Edinburgh University Press. Marx, Karl. 1970. Capital. Vol. 1. Trans. Samuel Moore and Edward Aveling. New York: International Publishers. Porter, Theodore M. 1986. The Rise of Statistical Thinking 1820–1900. Princeton: Princeton University Press. Stallybass, Peter and Allon White. 1987. The Politics of Transgression. Ithaca, NY: Cornell University Press. Stigler, Stephen M. 1986. The History of Statistics: The Measurement of Uncertainty before 1900. Cambridge, Mass.: Harvard University Press. Zola, Emile. 1964. The Experimental Novel and Other Essays. Trans. Belle M. Sherman. New York: Haskel House. ——. 1993. The Masterpiece. Trans. Thomas Walton. London: Oxford University Press.

ABBREVIATIONS DAGW M. Grmek, Diseases in the Ancient Greek World (Baltimore, 1989). FGrH F. Jacoby, Die Fragmente der griechischen Historiker (Leiden, 1923). GG F. Van Straten, “Gifts for the Gods,” Faith Hope and Worship (Leiden, 1981). LCL Loeb Classical Library. PCG R. Kassel and C. Austin, Poetae Comici Graeci (Berlin, 1983). PMG D. L. Page, Poetae Melici Graecae (Oxford, 1967). SEG Supplementurn Epigraphicum Graecum. WMH H. Lane, When the Mind Hears (New York, 1985). PART I

Historical Perspectives CHAPTER 2

Disability and the Justification of Inequality in American History Douglas C. Baynton

Since the social and political revolutions of challenged, and disrupted, disability was the eighteenth century, the trend in western called on to clarify and define who deserved, political thought has been to refuse to take and who was deservedly excluded from, for granted inequalities between persons citizenship. Opponents of political and or groups. Differential and unequal treat- social equality for women cited their sup- ment has continued, of course, but it has posed physical, intellectual, and psycho- been considered incumbent on modern logical flaws, deficits, and deviations from societies to produce a rational explanation the male norm. These flaws—irrational- for such treatment. In recent decades, his- ity, excessive emotionality, physical weak- torians and other scholars in the humani- ness—are in essence mental, emotional, ties have studied intensely and often chal- and physical disabilities, although they lenged the ostensibly rational explanations are rarely discussed or examined as such. for inequalities based on identity—in par- Arguments for racial inequality and immi- ticular, gender, race, and ethnicity. Dis- gration restrictions invoked supposed ability, however, one of the most prevalent tendencies to feeble-mindedness, men- justifications for inequality, has rarely been tal illness, deafness, blindness, and other the subject of historical inquiry. disabilities in particular races and ethnic Disability has functioned historically to groups. Furthermore, disability figured justify inequality for disabled people them- prominently not just in arguments for the selves, but it has also done so for women inequality of women and minorities but and minority groups. That is, not only has also in arguments against those inequali- it been considered justifiable to treat dis- ties. Such arguments took the form of vig- abled people unequally, but the concept of orous denials that the groups in question disability has been used to justify discrimi- actually had these disabilities; they were nation against other groups by attributing not disabled, the argument went, and disability to them. Disability was a signifi- therefore were not proper subjects for dis- cant factor in the three great citizenship crimination. Rarely have oppressed groups debates of the nineteenth and early twen- denied that disability is an adequate justi- tieth centuries: women’s suffrage, African fication for social and political inequality. American freedom and civil rights, and Thus, while disabled people can be consid- the restriction of immigration. When cat- ered one of the minority groups historically egories of citizenship were questioned, assigned inferior status and subjected to 18 | DOUGLAS C. BAYNTON

discrimination, disability has functioned by disability. Even more striking, however, for all such groups as a sign of and justifi- is that in addition to the rhetoric of gender, cation for inferiority. Burke’s argument rested just as fundamen- It is this use of disability as a marker of tally on a rhetorical contrast between the hierarchical relations that historians of natural constitution of the body politic and disability must demonstrate in order to the monstrous deformity that the revolu- bring disability into the mainstream of tion had brought forth. Burke repeatedly historical study. Over a decade ago, Joan referred to “public measures . . . deformed Scott made a similar argument about the into monsters,” “monstrous democratic difficulty of persuading historians to take assemblies,” “this monster of a constitu- gender seriously. Scott noted that despite tion,” “unnatural and monstrous activity,” a substantial number of works on women’s and the like (as well as evoking “blind prej- history, the topic remained marginal in the udice,” actions taken “blindly,” “blind fol- discipline as a whole. A typical response to lowers,” and “blind obedience” and allud- women’s history was “Women had a history ing to the madness, imbecility, and idiocy separate from men’s, therefore let femi- of the revolutionary leaders). This rhetoric nists do women’s history, which need not of monstrosity was by no means peculiar concern us,” or “My understanding of the to the conservative cause. Tom Paine, in his French Revolution is not changed by know- response to Burke, also found the monster ing that women participated in it.” Scott metaphor an apt and useful one but turned argued that research on the role of women it around: “Exterminate the monster aris- in history was necessary but not sufficient tocracy,” he wrote.2 to change the paradigms of the profession. The metaphor of the natural versus To change the way in which most histori- the monstrous was a fundamental way of ans went about their work, feminists had constructing social reality in Burke’s time. to demonstrate not just that women par- By the late nineteenth and early twenti- ticipated in the making of history but that eth centuries, however, the concept of the gender is “a constitutive element of social natural was to a great extent displaced or relationships” and “a primary way of signi- subsumed by the concept of normality.3 fying relationships of power.”1 Since then, normality has been deployed To demonstrate the ubiquity of gen- in all aspects of modern life as a means of der in social thought, Scott focused on measuring, categorizing, and managing political history, a field in which histori- populations (and resisting such manage- ans were especially apt to argue that gen- ment). Normality is a complex concept, der was unimportant, and where most with an etiology that includes the rise of historians today would imagine disability the social sciences, the science of statis- to be equally so. She chose as an example tics, and industrialization with its need for Edmund Burke’s attack on the French Rev- interchangeable parts and interchangeable olution, noting that it was “built around a workers. It has been used in a remarkable contrast between ugly, murderous sans- range of contexts and with a bewildering culottes hags (‘the furies of hell, in the variety of connotations. The natural and abused shape of the vilest of women’) and the normal both are ways of establishing the soft femininity of Marie-Antoinette.” the universal, unquestionable good and The contrast Scott highlights calls on not right. Both are also ways of establishing only gender but also notions of beauty, social hierarchies that justify the denial of disfigurement, and misshapen bodies that legitimacy and certain rights to individu- would be amenable to an analysis informed als or groups. Both are constituted in large DISABILITY AND THE JUSTIFICATION OF INEQUALITY IN AMERICAN HISTORY | 19 part by being set in opposition to culturally origins and toward greater perfection, nor- variable notions of disability—just as the mality was implicitly defined as that which natural was meaningful in relation to the advanced progress (or at least did not monstrous and the deformed, so are the impede it). Abnormality, conversely, was cultural meanings of the normal produced that which pulled humanity back toward in tandem with disability.4 its past, toward its animal origins. The concept of normality in its modern As an evolutionary concept, normality sense arose in the mid-nineteenth century was intimately connected to the western in the context of a pervasive belief in prog- notion of progress. By the mid-nineteenth ress. It became a culturally powerful idea century, nonwhite races were routinely with the advent of evolutionary theory. connected to people with disabilities, both The ideal of the natural had been a static of whom were depicted as evolutionary concept for what was seen as an essentially laggards or throwbacks. As a consequence, unchanging world, dominant at a time the concept of disability, intertwined with when “the book of nature” was represented the concept of race, was also caught up in as the guidebook of God. The natural was ideas of evolutionary progress. Physical good and right because it conformed to or mental abnormalities were commonly the intent or design of Nature or the Cre- depicted as instances of atavism, reversions ator of nature. Normality, in contrast, was to earlier stages of evolutionary develop- an empirical and dynamic concept for a ment. Down’s syndrome, for example, was changing and progressing world, the prem- called Mongolism by the doctor who first ise of which was that one could discern in identified it in 1866 because he believed human behavior the direction of human the syndrome to be the result of a biologi- evolution and progress and use that as a cal reversion by Caucasians to the Mongol guide. The ascendance of normality sig- racial type. Teachers of the deaf at the end naled a shift in the locus of faith from a of the century spoke of making deaf chil- God-centered to a human-centered world, dren more like “normal” people and less from a culture that looked within to a core like savages by forbidding them the use of and backward to lost Edenic origins toward sign language, and they opposed deaf mar- one that looked outward to behavior and riages with a rhetoric of evolutionary prog- forward to a perfected future. ress and decline. Recent work on late-nine- Just as the counterpart to the natural teenth-century freak shows has highlighted was the monstrous, so the opposite of the how disability and race intersected with an normal person was the defective. Although ideology of evolutionary hierarchy. James normality ostensibly denoted the average, W. Trent argued in a recent article that at the usual, and the ordinary, in actual usage the 1904 World’s Fair, displays of “defec- it functioned as an ideal and excluded only tives” alongside displays of “primitives” chose defined as below average. “Is the signaled similar and interconnected classi- child normal?” was never a question that fication schemes for both defective individ- expressed fear about whether a child had uals and defective races. Both were placed above-average intelligence, motor skills, in hierarchies constructed on the basis of or beauty. Abnormal signified the subnor- whether they were seen as “improvable” or mal.5 In the context of a pervasive belief not—capable of being educated, cured, or that the tendency of the human race was civilized. Whether it was individual atavism to improve itself constantly, that barring or a group’s lack of evolutionary develop- something out of the ordinary humanity ment, the common element in all was the moved ever upward away from its animal presence or attribution of disability.6 20 | DOUGLAS C. BAYNTON

Disability arguments were prominent in endowments,” while still others saw greater justifications of slavery in the early to mid- intelligence but “frailty,” “less stamina,” nineteenth century and of other forms of and “inherent physical weakness.”8 unequal relations between white and black A second line of disability argument was Americans after slavery’s demise. The most that African Americans, because of their common disability argument for slavery inherent physical and mental weaknesses, was simply that African Americans lacked were prone to become disabled under con- sufficient intelligence to participate or ditions of freedom and equality. A New York compete on an equal basis in society with medical journal reported that deafness was white Americans. This alleged deficit was three times more common and blindness sometimes attributed to physical causes, twice as common among free blacks in the as when an article on the “diseases and North compared to slaves in the South. physical peculiarities of the negro race” in John C. Calhoun, senator from South Caro- the New Orleans Medical and Surgical Jour- lina and one of the most influential spokes- nal helpfully explained, “It is this defective men for the slave states, thought it a power- hematosis, or atmospherization of the ful argument in defense of slavery that the blood, conjoined with a deficiency of cere- “number of deaf and dumb, blind, idiots, bral matter in the cranium, and an excess and insane, of the negroes in the States that of nervous matter distributed to the organs have changed the ancient relation between of sensation and assimilation, that is the the races” was seven times higher than in true cause of that debasement of mind, the slave states.9 which has rendered the people of Africa While much has been written about the unable to take care of themselves.” Dis- justification of slavery by religious lead- eases of blacks were commonly attributed ers in the South, more needs to be said to “inferior organisms and constitutional about similar justifications by medical weaknesses,” which were claimed to be doctors. Dr. Samuel Cartwright, in 1851, among “the most pronounced race charac- for example, described two types of men- teristics of the American negro.” While the tal illness to which African Americans were supposedly higher intelligence of “mulat- especially subject. The first, Drapetoma- tos” compared to “pure” blacks was offered nia, a condition that caused slaves to run as evidence for the superiority of whites, away—“as much a disease of the mind as those who argued against “miscegenation” any other species of mental alienation”— claimed to the contrary that the products was common among slaves whose masters of “race-mixing” were themselves less had “made themselves too familiar with intelligent and less healthy than members them, treating them as equals.” The need of either race in “pure” form.7 A medical to submit to a master was built into the doctor, John Van Evrie of New York, avowed very bodies of African Americans, in whom that the “disease and disorganization” in “we see ‘genu flexit’ written in the physical the “abnormal,” “blotched, deformed” structure of his knees, being more flexed offspring of this “monstrous” act “could or bent, than any other kind of man.” The no more exist beyond a given period than second mental disease peculiar to African any other physical degeneration, no more Americans, Dysaesthesia Aechiopis—a than tumors, cancers, or other abnormal unique ailment differing “from every other growths or physical disease can become species of mental disease, as it is accom- permanent.” Some claimed greater “cor- panied with physical signs or lesions of the poreal vigor” for “mixed offspring” but a body”—resulted in a desire to avoid work deterioration in “moral and intellectual and generally to cause mischief. It was DISABILITY AND THE JUSTIFICATION OF INEQUALITY IN AMERICAN HISTORY | 21 commonly known to overseers as “rascal- brought to the former slave “a beautiful ity.” Its cause, similar to that of Drapeto- harvest of mental and physical degenera- mania, was a lack of firm governance, and tion and he is now becoming a martyr to an it was therefore far more common among heredity thus established.”12 free blacks than among slaves—indeed, While these arguments were often con- nearly universal among them—although it tradictory, incoherent, or simply ludicrous, was a “common occurrence on badly-gov- disability was central to all of them. If free- erned plantations” as well.10 dom for African Americans was undesir- Dr. Van Evrie also contributed to this able and slavery good, then it was sufficient line of thought when he wrote in the 1860s to note that free blacks were more likely that education of African Americans came than slaves to be disabled. The decisive “at the expense of the body, shortening the argument for miscegenation being mor- existence” and resulted in bodies “dwarfed ally wrong or socially injurious was that it or destroyed” by the unnatural exertion. produced disability. The contention had to “An ‘educated negro,’ like a ‘free negro,’ is be countered, and no argument on other a social monstrosity, even more unnatural grounds could trump it. Samuel Forry, for and repulsive than the latter.” He argued example, writing in the New York Journal of further that, since they belonged to a race Medicine in 1844, noted that the supposedly inferior by nature, all blacks were nec- higher rates of insanity among free blacks essarily inferior to (nearly) all whites. It compared to slaves had been “seized upon occasionally happened that a particular by journals devoted to the peculiar institu- white person might not be superior to all tions of the Southern States, as a powerful black people because of a condition that argument.” Forry retorted, first, that the “deforms or blights individuals; they may census did not allow a reliable comparison be idiotic, insane, or otherwise incapable.” of deafness, blindness, idiocy, and insanity But these unnatural exceptions to the rule in free and enslaved blacks and, second, were “the result of human vices, crimes, that even were it the case that free blacks or ignorance, immediate or remote.” Only in the North suffered more disability than disability might lower a white person in slaves, slavery and freedom might not be the scale of life to the level of a being of a the determinants. Instead, perhaps “the marked race.11 whole constitution of the black is adapted By the turn of the century, medical to a tropical region,” and their mental and doctors were still arguing that African physical health was therefore bound to suf- Americans were disabled by freedom and fer in the northern climate.13 The argument therefore in need of greater oversight. J. F. that a people might be enslaved to protect Miller, writing in the North Carolina Medi- them from disability he left unchallenged. cal Journal, thought it important to inquire Race and disability intersected in the whether “the effect of freedom upon the concept of the normal, as both prescrip- mental and physical health of the negroes tion and description. American blacks, for of the South” had been “damaging or oth- example, were said to flourish in their “nor- erwise.” His conclusion was that there were mal condition” of slavery, while the “‘free’ “more congenital defects” and a dramatic or abnormal negro” inevitably fell into ill- increase in mental illness and tuberculosis, ness, disability, and eventually extinction. which supposedly had been rare among The hierarchy of races was itself depicted as enslaved African Americans. Freedom, a continuum of normality. Just as medical for which the African American’s weak textbook illustrations compared the normal mind and constitution were ill suited, had body with the abnormal, so social science 22 | DOUGLAS C. BAYNTON

textbooks illustrated the normal race and anomalous, a defect and a disfigurement, the abnormal ones. Arnold Guyot, in his something akin to an all-body birthmark 1873 textbook Physical Geography, under and often a sign of sin or degeneracy. Adver- the heading “The White Race the Normal, tisements for soap in the nineteenth cen- or Typical, Race,” compared the beauty, reg- tury often played on this idea of dark skin ularity of features, and “harmony in all the as defect with, for example, a pink-cheeked proportions of the figure” of the white race child asking an African American child, with those who have “gradually deviated” “Why doesn’t your mamma wash you with from the normal ideal. Similarly, Dr. John Fairy Soap?”15 Another advertisement told C. Nott, writing in the American Journal of a tale of children who were bathed daily, Medical Sciences in 1843, invited the reader “Because their mother did believe/That to “look first upon the Caucasian female white they could be made/So on them with with her rose and lily skin, silky hair, Venus a scrubbing brush/Unmerciful she laid.” form, and well chiseled features—and then The mother’s efforts were fruitless until upon the African wench with her black and she found the right brand of soap: “Sweet odorous skin, woolly head and animal fea- and clean her sons became/it’s true, as I’m tures—and compare their intellectual and a workman/And both are now completely moral qualities, and their whole anatomi- white, Washed by this soap of Kirkman.”16 cal structure.” He added for good measure Dreydoppel Soap told a similar story of an that the American Indian “has many pecu- African American boy (“A mite of queer liarities which are just as striking.” In nine- humanity/As dark as a cloudy night”) who teenth-century freak shows, where disabil- scrubbed himself with acids, fasted, took ity and race intersected to illustrate familiar sulfur baths, and “sampled all the medi- narratives of evolutionary progress, disabled cine that ever was made or brewed” in adults were displayed as less-evolved crea- the attempt to cure his unfortunate skin tures from far-off jungles. P. T. Barnum pro- color. “He built an air-tight sweat box with moted his American Museum exhibit “What the/Hope that he would bleach/The sweat Is It?” as the “missing link” between human poured down in rivers/but the Black stuck and animal, a “man-monkey.” At least two like a leech.” That is, until he discovered different men played the role: a white actor Dreydoppel soap: “One trial was all he with unusually short legs of uneven length needed/Realized was his fondest hope/His and a mentally retarded black man with face was white as white could be/There’s microcephaly who later became known by nothing like Dreydoppel Soap.”17 the stage name Zip. The presence of disabil- Daryl Michael Scott has described how ity in both cases, in addition to race in one both conservatives and liberals have long of them, was in effect the costume that sig- used an extensive repertory of “damage nified the role of “subhuman.”14 imagery” to describe African Americans. It is not new to point out that images of Conservatives “operated primarily from American blacks have commonly shown within a biological framework and argued them with exaggerated lips, amusingly long for the innate inferiority of people of Afri- or bowed legs, grotesquely big feet, bad can descent” in order to justify social and posture, missing teeth, crossed or bulg- political exclusion. Liberals maintained ing eyes, and otherwise deformed bodies. that social conditions were responsible for At least since 1792, when Benjamin Rush black inferiority and used damage imagery explained that the skin color of Africans to argue for inclusion and rehabilitation; was due to their suffering from congenital but regardless of their intentions, Scott leprosy, black skin itself has been treated as argues, liberal damage imagery “reinforced DISABILITY AND THE JUSTIFICATION OF INEQUALITY IN AMERICAN HISTORY | 23 the belief system that made whites feel lectuals in the late nineteenth century.”19 superior in the first place.” Both the “con- What all shared was an evolutionary infe- tempt and pity” of conservatives and liber- riority, the result of arrested development als—a phrase that equally well describes or atavism. historically prevalent attitudes toward Paralleling the arguments made in disabled people—framed Americans of defense of slavery, two types of disabil- African descent as defective. Scott cites the ity argument were used in opposition to example of Charles S. Johnson, chair of the women’s suffrage: that women had dis- social science department and later presi- abilities that made them incapable of using dent of Fisk University, who told students the franchise responsibly, and that because in a 1928 speech that “the sociologists clas- of their frailty women would become dis- sify Negroes with cripples, persons with abled if exposed to the rigors of political recognized physical handicaps.” Like John- participation. The American anti-suffrag- son, Scott is critical of the fact that “African ist Grace Goodwin, for example, pointed to Americans were often lumped with the the “great temperamental disabilities” with ‘defective,’ ‘delinquent,’ and dependent which women had to contend: “woman classes.” This is obviously a bad place to lacks endurance in things mental. . . . She be “lumped.” Scott does not ask, however, lacks nervous stability. The suffragists who why that might be the case.18 The attribu- dismay England are nerve-sick women.” tion of disease or disability to racial minor- The second line of argument, which was ities has a long history. Yet, while many not incompatible with the first and often have pointed out the injustice and perni- accompanied it, went beyond the claim ciousness of attributing these qualities to a that women’s flaws made them incapable of racial or ethnic group, little has been writ- exercising equal political and social rights ten about why these attributions are such with men to warn that if women were given powerful weapons for inequality, why they those rights, disability would surely follow. were so furiously denied and condemned This argument is most closely identified by their targets, and what this tells us about with Edward Clarke, author of Sex in Edu- our attitudes toward disability. cation; or, A Fair Chance for Girls. Clarke’s During the long-running debate over argument chiefly concerned education women’s suffrage in the nineteenth and for women, though it was often applied early twentieth centuries, one of the rhe- to suffrage as well. Clarke maintained that torical tactics of suffrage opponents was overuse of the brain among young women to point to the physical, intellectual, and was in large part responsible for the “num- psychological flaws of women, their frailty, berless pale, weak, neuralgic, dyspeptic, irrationality, and emotional excesses. By hysterical, menorraghic, dysmenorrhoeic the late nineteenth century, these claims girls and women” of America. The result were sometimes expressed in terms of of excessive education in this country was evolutionary progress; like racial and eth- “bloodless female faces, that suggest con- nic minorities, women were said to be less sumption, scrofula, anemia, and neural- evolved than white men, their disabilities gia.” An appropriate education designed a result of lesser evolutionary develop- for their frail constitutions would ensure “a ment. Cynthia Eagle Russett has noted that future secure from neuralgia, uterine dis- “women and savages, together with idiots, ease, hysteria, and other derangements of criminals, and pathological monstrosities the nervous system.”20 [those with congenital disabilities] were a Similarly, Dr. William Warren Potter, constant source of anxiety to male intel- addressing the Medical Society of New York 24 | DOUGLAS C. BAYNTON

in 1891, suggested that many a mother ment. Nancy Woloch has noted that a was made invalid by inappropriate educa- “major antisuffragist point was that women tion: “her reproductive organs are dwarfed, were physically, mentally, and emotionally deformed, weakened, and diseased, by incapable of duties associated with the artificial causes imposed upon her dur- vote. Lacking rationality and sound judging their development.”21 Dr. A. Lapthorn ment, they suffered from ‘logical infirmity Smith asserted in Popular Science Monthly of mind.’ . . . Unable to withstand the pres- that educated women were increasingly sure of political life, they would be prone to “sick and suffering before marriage and paroxysms of hysteria.” Aileen Kraditor, in are physically disabled from performing her intellectual history of the women’s suf- physiological functions in a normal man- frage movement, wrote that antisuffragists ner.” Antisuffragists likewise warned that “described woman’s physical constitution female participation in politics invariably as too delicate to withstand the turbulence led to “nervous prostration” and “hyste- of political life. Her alleged weakness, ner- ria,” while Dr. Almroth E. Wright noted vousness, and proneness to fainting would the “fact that there is mixed up with the certainly be out of place in polling booths woman’s movement much mental disor- and party conventions.” On the one hand, der.” A prominent late nineteenth-century this was of course an unfounded stereotype neurophysiologist, Charles L. Dana, esti- deserving of ridicule, as Kraditor’s ironic mated that enfranchising women would tone suggests. On the other hand, just as result in a 25 percent increase in insanity it was left unchallenged at the time, histo- among them and “throw into the electorate rians today leave unchallenged the notion a mass of voters of delicate nervous stabil- that weakness, nervousness, or proneness ity . . . which might do injury to itself with- to fainting might legitimately disqualify out promoting the community’s good.” one for suffrage.23 The answer for Clarke, Potter, and others Disability figured not just in arguments of like mind was special education suited for the inequality of women and minori- to women’s special needs. As with disabled ties but also in arguments against those people today, women’s social position was inequalities. Suffragists rarely challenged treated as a medical problem that necessi- the notion that disability justified politi- tated separate and special care. Those who cal inequality and instead disputed the wrote with acknowledged authority on the claim that women suffered from these “woman question” were doctors. As Clarke disabilities. Their arguments took three wrote, the answer to the “problem of wom- forms: one, women were not disabled and an’s sphere . . . must be obtained from phys- therefore deserved the vote; two, women iology, not from ethics or metaphysics.”22 were being erroneously and slanderously While historians have not overlooked classed with disabled people, with those the use of disability to deny women’s rights, who were legitimately denied suffrage; and they have given their attention entirely three, women were not naturally or inher- to gender inequality and not at all to the ently disabled but were made disabled by construction and maintenance of cultural inequality—suffrage would ameliorate or hierarchies based on disability. Lois Mag- cure these disabilities. ner has described how women were said to References to the intelligence and abili- bear the “onerous functions of the female,” ties of women, countering the imputations which incapacitated them for “active life” of female inferiority, pervaded suffrage and produced a “mental disability that ren- rhetoric. Although more common later dered women unfit” for political engage- in the century, this form of argument was DISABILITY AND THE JUSTIFICATION OF INEQUALITY IN AMERICAN HISTORY | 25 already in evidence in 1848 at the Seneca euphemisms used by the anti-suffragists, Falls Woman’s Rights Convention. Delegates whose attributions of mental and psycho- resolved that “the equality of human rights logical inferiority to women were couched results necessarily from the fact of the iden- in less direct language. Antisuffragists were tity of the race in capabilities and responsi- wont to counter that it was “a noble sort of bilities,” and further, that “being invested disfranchisement” that women enjoyed, by the Creator with the same capabilities “something wholly different from the dis- . . . it is demonstrably the right and duty franchisement of the pauper, the crimi- of woman” to participate in public politi- nal, the insane. . . . These are set aside as cal life. Rebecca M. Sandford avowed, “Our persons not human; women are absolved intellect is as capable as man’s to assume, as constituting a higher class. There is a and at once to hold, these rights . . . for if very real distinction between being placed we did not believe it, we would not contend among the beasts, and being placed among for them.” Frederick Douglass proclaimed the ‘ministering angels.’”26 The suffragist that “the true basis of rights was the capac- answer to these sentimental claims made ity of individuals.”24 The converse of their clear that the antisuffrage argument was premise that equality in capacity justified rooted in the attribution of disability. political equality, was a warrant too basic Suffragists did on occasion take issue to be considered explicitly: differences in with the argument that rights rested on capacity, if present, would be justification capacity. Lucretia Mott, speaking at Sen- for political inequality. eca Falls, conceded that “woman’s intel- A second powerful and recurrent rhe- lect may be feeble, because she had been torical device for suffragists was to charge so long crushed; but is that any reason why that women were wrongly categorized with she should be deprived of her equal rights? those legitimately excluded from political Does one man have fewer rights than life. A popular theme in both British and another because his intellect is inferior? If American suffrage posters was to depict not, why should woman?” But she imme- a thoughtful-looking woman, perhaps diately undercut the point by avowing, wearing the gown of a college graduate, “Let woman arise and demand her rights, surrounded by slope-browed, wild-eyed, and in a few years we shall see a different or “degenerate” men identified implic- mental development.” Charlotte Perkins itly or explicitly as “idiots” and “lunatics.” Gilman was the most prominent of those The caption might read, “Women and her who argued that women’s capacities had Political Peers,” or, “It’s time I got out of this been stunted over time by restricted activ- place. Where shall I find the key?” Echo- ity, which had come to represent a genetic ing this theme, suffrage supporter George inheritance that could be undone only by William Curtis rhetorically asked a New access to an unfettered social and political York constitutional convention in 1867 life. Matilda Gage similarly suggested that why women should be classed with “idiots, “obedience to outside authority to which lunatics, persons under guardianship and woman has everywhere been trained, has felons,” and at the national Woman Suf- not only dwarfed her capacity, but made frage Convention in 1869, Elizabeth Cady her a retarding force in civilization.”27 These Stanton protested that women were “thrust arguments were an implicit acknowledg- outside the pale of political consideration ment that capacity was indeed relevant to with minors, paupers, lunatics, traitors, the question of rights. They are also exam- [and] idiots.”25 ples of the third variant on the suffrage These challenges directly confronted the disability argument, that women were 26 | DOUGLAS C. BAYNTON

disabled by exclusion from political equal- and, in addition to those judged insane, ity. This argument answered the antisuf- “persons who have been insane within five frage accusation that women were inher- years previous [or] who have had two or ently and unchangeably disabled with the more attacks of insanity at any time pre- claim that, given equal rights, they would viously.” This was reduced to one “attack” attain equality in capacity. Like the antisuf- in the 1917 law; the classification of “con- frage position, it was a powerful argument stitutional psychopathic inferiority” was precisely because of the cultural power of also added, which inspection regulations disability to discredit. described as including “various unstable Ethnicity also has been defined by dis- individuals on the border line between ability. One of the fundamental impera- sanity and insanity . . . and persons with tives in the initial formation of Ameri- abnormal sex instincts.”29 This was the can immigration policy at the end of the regulation under which, until recently, nineteenth century was the exclusion of gays and lesbians were excluded. One of disabled people. Beyond the targeting of the significant factors in lifting this ban, disabled people, the concept of disability along with other forms of discrimination was instrumental in crafting the image of against gays and lesbians, was the decision the undesirable immigrant. The first major by the American Psychiatric Association in federal immigration law, the Act of 1882, 1973 to remove homosexuality from its list prohibited entry to any “lunatic, idiot, or of mental illnesses. That is, once gays and any person unable to take care of him- lesbians were declared not to be disabled, self or herself without becoming a public discrimination became less justifiable. charge.” Those placed in the categories Legislation in 1907 added “imbeciles” “lunatic” and “idiot” were automatically and “feeble-minded persons” to the list, excluded. The “public charge” provision in addition to “idiots,” and regulations for was intended to encompass people with inspectors directed them to exclude per- disabilities more generally and was left to sons with “any mental abnormality what- the examining officer’s discretion. The cri- ever . . . which justifies the statement that teria for excluding disabled people were the alien is mentally defective.” These steadily tightened as the eugenics move- changes encompassed a much larger num- ment and popular fears about the decline ber of people and again granted officials of the national stock gathered strength. The considerably more discretion to judge the Act of 1891 replaced the phrase “unable fitness of immigrants for American life. to take care of himself or herself without Fiorello H. LaGuardia, who worked his way becoming a public charge,” with “likely through law school as an interpreter at to become a public charge.” The 1907 law Ellis Island, later wrote that “over fifty per- then denied entry to anyone judged “men- cent of the deportations for alleged mentally or physically defective, such mental or tal disease were unjustified,” based as they physical defect being of a nature which may often were on “ignorance on the part of the affect the ability of such alien to earn a liv- immigrants or the doctors and the inability ing.” These changes considerably lowered of the doctors to understand the particular the threshold for exclusion and expanded immigrant’s norm, or standard.”30 the latitude of immigration officials to deny The detection of physical disabili- entry.28 ties was a major aspect of the immigra- The category of persons automatically tion inspector’s work. The Regulations for excluded was also steadily expanded. In the medical inspection of immigrants in 1903, people with epilepsy were added 1917 included a long list of diseases and DISABILITY AND THE JUSTIFICATION OF INEQUALITY IN AMERICAN HISTORY | 27 disabilities that could be cause for exclu- such persons to impose themselves upon sion, among them arthritis, asthma, bun- us.” As one restrictionist wrote, the need to ions, deafness, deformities, flat feet, heart exclude the disabled was “self evident.”33 disease, hernia, hysteria, poor eyesight, For the more controversial business of poor physical development, spinal cur- defining and excluding undesirable eth- vature, vascular disease of the heart, and nic groups, however, restrictionists found varicose veins. A visiting physician in 1893, the concept of disability to be a powerful when admission standards were still rela- tool. That is, while people with disabili- tively liberal, described the initial inspec- ties constituted a distinct category of per- tion: “If a man has a hand done up, or any sons unwelcome in the United States, the physical injury in any way . . ., or if a person charge that certain ethnic groups were has but one leg or one arm, or one eye, or mentally and physically deficient was there is any physical or mental defect, if instrumental in arguing for their exclusion. the person seems unsteady and in any way The belief that discriminating on the basis physically incapacitated to earn his liveli- of disability was justifiable in turn helped hood, he is passed to one side to be exam- justify the creation of immigration quotas ined later.”31 An immigration official later based on ethnic origin. The 1924 Immigra- recalled a young Italian couple who would tion Act instituted a national quota system have been deported (the man had a “game that severely limited the numbers of immi- leg” that required use of a crutch) had not a grants from southern and eastern Europe, wealthy philanthropist visiting Ellis Island but long before that, disabilities stood in taken an interest in the couple and inter- for nationality. Superintendents of institu- vened, guaranteeing that they would not tions, philanthropists, immigration reform- become a public charge.32 ers, and politicians had been warning for In short, the exclusion of disabled people decades before 1924 that immigrants were was central to the laws and the work of the disproportionately prone to be mentally immigration service. As the Commissioner defective—up to half the immigrants from General of Immigration reported in 1907, southern and eastern Europe were feeble- “The exclusion from this country of the minded, according to expert opinion.34 morally, mentally, and physically deficient Rhetoric about “the slow-witted Slav,” the is the principal object to be accomplished “neurotic condition of our Jewish immi- by the immigration laws.” Once the laws grants,” and, in general, the “degenerate and procedures limiting the entry of dis- and psychopathic types, which are so con- abled people were firmly established and spicuous and numerous among the immi- functioning well, attention turned to limit- grants,” was pervasive in the debate over ing the entry of undesirable ethnic groups. restriction.35 The laws forbidding entry to Discussion on this topic often began by the feebleminded were motivated in part pointing to the general public agreement by the desire to limit immigration from that the laws excluding disabled people inferior nations, and conversely, it was had been a positive, if insufficient, step. In assumed that the 1924 act would reduce 1896, for example, Francis Walker noted the number of feebleminded immigrants. in the Atlantic Monthly that the necessity The issues of ethnicity and disability were of “straining out” immigrants who were so intertwined in the immigration debate “deaf, dumb, blind, idiotic, insane, pauper, as to be inseparable. or criminal” was “now conceded by men of Arguments for immigration restriction all shades of opinion”; indeed there was a often emphasized the inferior appearance widespread “resentment at the attempt of of immigrants, and here also ethnicity and 28 | DOUGLAS C. BAYNTON

disability overlapped and intertwined. Dis- then in motion,” in order to detect “irregu- ability scholars have emphasized the uncer- larities in movement” and “abnormalities tain and shifting line between an impair- of any description.” If possible, inspectors ment of appearance and one of function. watched immigrants as they carried their Martin Pernick, for example, has described luggage up stairs to see if “the exertion the importance of aesthetics in eugenics would reveal deformities and defective literature—how fitness was equated with posture.”38 As one inspector wrote, “It is no beauty and disability with ugliness. Len- more difficult to detect poorly built, defec- nard Davis has maintained that disability tive or broken down human beings than to presents itself “through two main modali- recognize a cheap or defective automobile. ties—function and appearance.” Restric- . . . The wise man who really wants to find tionists often emphasized the impaired out all he can about an automobile or an appearance of immigrants. An Ellis Island immigrant, will want to see both in action, inspector claimed that “no one can stand at performing as well as at rest.”39 Ellis Island and see the physical and mental For most immigrants, a normal appear- wrecks who are stopped there . . . without ance meant a quick, uneventful passage becoming a firm believer in restriction.”36 through the immigration station. An abnor- A proponent of restriction avowed, “To the mal appearance, however, meant a chalked practised eye, the physiognomy of certain letter on the back: “L for lameness, K for her- groups unmistakably proclaims inferiority nia, G for goiter, X for mental illness,” and of type.” When he observed immigrants, he so on.40 Once chalked, a closer inspection saw that “in every face there was something was required. The inspection then would wrong. . . . There were so many sugar-loaf be general, not confined to the abnormal- heads, moon-faces, slit mouths, lantern- ity that set them apart, which meant that jaws, and goose-bill noses that one might visibly disabled people—as well as those imagine a malicious jinn had amused whose ethnic appearance was abnormal to himself by casting human beings in a set the inspectors—were more likely to be set of skew-molds discarded by the Creator.” apart for close examination and therefore Most new immigrants were physically were also more likely to have other prob- inadequate in some way: “South Europe- lems discovered and to be excluded. ans run to low stature. A gang of Italian Aesthetic and eugenic considerations navvies filing along the street present, by were at least as important as concerns their dwarfishness, a curious contrast to about the functional limitations of dis- other people. The Portuguese, the Greeks, abled immigrants. For example, on June 30, and the Syrians are, from our point of view, 1922, Israel Raskin was refused entry to the undersized. The Hebrew immigrants are United States as “physically defective and very poor in physique . . . the polar oppo- likely to become a public charge.” The diag- site of our pioneer breed.”37 nosis on the medical certificate was “lack The initial screening of immigrants was of sexual development which may affect mostly a matter of detecting visible abnor- his ability to earn a living.” The United mality. Inspectors, who prided themselves States Surgeon General explained that the on their ability to make a “snapshot diag- diagnosis warranted exclusion because nosis,” had only a few seconds to detect “these persons present bad economic risks the signs of disability or disease as immi- . . . due to the fact that their abnormality grants streamed past them in single file. soon becomes known to their associates Inspection regulations specified that “each who make them the butt of coarse jokes to individual should be seen first at rest and their own despair, and to the impairment DISABILITY AND THE JUSTIFICATION OF INEQUALITY IN AMERICAN HISTORY | 29 of the work in hand.” Since this was “recog- ticular ethnic groups. The Hebrew Shelter- nized pretty generally among employers, it ing and Immigrane Aid Society in New York is difficult for these unfortunates to get or expressed concern in 1909 that the “lack retain jobs, their facial and bodily appear- of physical development” diagnosis was ance, at least in adult life, furnishing a pat- “constantly increasing” and being applied ent advertisement of their condition.”41 to Jewish immigrants disproportionately. Medical exclusions on the basis of “poor An investigation by the Jewish Immigrants’ physique” and “lack of physical develop- Information Bureau in 1910 discovered ment” began to appear around the turn that an inspector in Galveston was using of the century. The immigration service the diagnosis to discriminate against Jew- defined it as covering individuals “who ish immigrants. Nationality and disability have frail frame, flat chest, and are gener- might be implicitly linked in anti-immi- ally deficient in muscular development,” gration rhetoric, as when William Green, or those who are “undersized—mark- president of the American Federation of edly of short stature—dwarf.”42 In part, Labor, argued that quotas were “necessary this diagnosis represented a judgment of to the preservation of our national charac- employability, and in part it was a eugenic teristics and to our physical and our men- judgment. Both concerns were expressed tal health.”45 They also were explicitly con- in a letter from the Bureau of Immigration, nected, as when a New York Supreme Court which explained that “a certificate of this justice worried that the new immigrants nature implies that the alien concerned is were “adding to that appalling number of afflicted with a body but illy adapted . . . to our inhabitants who handicap us by reason the work necessary to earn his bread.” The of their mental and physical disabilities.”46 diagnosis further indicated that the immi- Historians have scrutinized the attri- grant was “undersized, poorly developed bution of mental and physical inferiority [and] physically degenerate, and as such, based on race and ethnicity, but only to not only unlikely to become a desirable condemn the slander. With their attention citizen, but also very likely to transmit confined to ethnic stereotypes, they have his undesirable qualities to his offspring, largely ignored what the attribution of dis- should he unfortunately for the country in ability might also tell us about attitudes which he is domiciled, have any.”43 toward disabled people. Racial and eth- As one medical officer explained it, the nic prejudice is exposed while prejudice “immigrant of poor physique is not able to against people with disabilities is passed perform rough labor, and even if he were over as insignificant and understandable. able, employers of labor would not hire As a prominent advocate of restriction him.”44 The belief that an immigrant with wrote in 1930, “The necessity of the exclu- a disability was unfit to work was justifi- sion of the crippled, the blind, those who cation for exclusion; but the belief that an are likely to become public charges, and, of immigrant was likely to encounter discrim- course, those with a criminal record is self ination because of a disability was equally evident.”47 The necessity has been treated justification for exclusion. The disability as self-evident by historians as well, so that justified exclusion in these cases was much so that even the possibility of dis- largely or entirely a matter of an abnormal crimination against people with disabili- appearance that might invite employment ties in immigration law has gone unrec- discrimination. ognized. In historical accounts, disability The laws excluding disabled immigrants is present but rendered invisible or insig- could be used by inspectors to target par- nificant. While it is certain that immigra- 30 | DOUGLAS C. BAYNTON

tion restriction rests in good part on a fear considered cripples, even though they were of “strangers in the land,” in John Higham’s without an arm or leg, or perhaps seriously phrase, American immigration restriction crippled as a result of infantile paralysis. at the turn of the century was also clearly They had never considered themselves fueled by a fear of defectives in the land. handicapped in any way.”49 Still today, women and other groups who This common strategy for attaining face discrimination on the basis of identity equal rights, which seeks to distance one’s respond angrily to accusations that they own group from imputations of disability might be characterized by physical, men- and therefore tacitly accepts the idea that tal, or emotional disabilities. Rather than disability is a legitimate reason for inequal- challenging the basic assumptions behind ity, is perhaps one of the factors responsi- the hierarchy, they instead work to remove ble for making discrimination against peo- themselves from the negatively marked ple with disabilities so persistent and the categories—that is, to disassociate them- struggle for disability rights so difficult. As selves from those people who “really are” Harlan Hahn has noted, “Unlike other dis- disabled—knowing that such categoriza- advantaged groups, citizens with disabili- tion invites discrimination. For example, a ties have not yet fully succeeded in refuting recent proposal in Louisiana to permit preg- the presumption that their subordinate sta- nant women to use parking spaces reserved tus can be ascribed to an innate biological for people with mobility impairments was inferiority.”50 If Hahn is perhaps too opti- opposed by women’s organizations. A lobby- mistic about the extent to which women ist for the Women’s Health Foundation said, and minority groups have managed to do “We’ve spent a long time trying to dispel the away with such presumptions, neverthe- myth that pregnancy is a disability, for obvi- less it is true that such views are no longer ous reasons of discrimination.” She added, an accepted part of public discourse. Yet “I have no problem with it being a courtesy, the same views regarding disability are still but not when a legislative mandate provides espoused widely and openly. for pregnancy in the same way as for dis- Disability is everywhere in history, once abled persons.”48 To be associated with dis- you begin looking for it, but conspicuously abled people or with the accommodations absent in the histories we write. When his- accorded disabled people is stigmatizing. torians do take note of disability, they usu- Even disabled people have used this ally treat it merely as personal tragedy or strategy to try to deflect discrimination. an insult to be deplored and a label to be Rosemarie Garland Thomson notes that denied, rather than as a cultural construct “disabled people also often avoid and ste- to be questioned and explored. Those of us reotype one another in attempting to nor- who specialize in the history of disability, malize their own social identities.” Deaf like the early historians of other minority people throughout the twentieth century groups, have concentrated on writing his- have rejected the label of disability, know- tories of disabled people and the institu- ing its dangers; and the tendency of those tions and laws associated with disability. with less-stigmatized disabilities to dis- This is necessary and exciting work. It is tance themselves from those with more through this work that we are building the highly stigmatized disabilities is a common case that disability is culturally constructed phenomenon. In 1918, the associate direc- rather than natural and timeless—that distor of what was known as the “Cleveland abled people have a history, and a history Cripple Survey” reported that some of those worth studying. Disability, however, more surveyed “were amazed that they should be than an identity, is a fundamental element DISABILITY AND THE JUSTIFICATION OF INEQUALITY IN AMERICAN HISTORY | 31 in cultural signification and indispensable the World’s Fair: Constructing Disability in 1904,” for any historian seeking to make sense Remedial and Special Education 19 (July/August of the past. It may well be that all social 1998): 201–11. 7. Samuel A. Cartwright, “Report on the Diseases hierarchies have drawn on culturally con- and Physical Peculiarities of the Negro Race,” structed and socially sanctioned notions New Orleans Medical and Surgical Journal 7 of disability. If this is so, then there is much (May 1851): 693; George M Fredrickson, The work to do. It is time to bring disability Black Image in the White Mind (New York: Harper from the margins to the center of historical and Row, 1971), 250–51; J. C. Nott, “The Mulatto a Hybrid,” American Journal of Medical Sciences inquiry. (July 1843), quoted in Samuel Forry, “Vital Statis- tics Furnished by the Sixth Census of the United NOTES States,” New York Journal of Medicine and the Collateral Sciences 1 (September 1843): 151–53. 1. Joan Scott, “Gender: A Useful Category of His- 8. John H. Van Evrie, White Supremacy and Negro torical Analysis,” American Historical Review 91 Subordination, or Negroes a Subordinate Race (December 1986): 1053–75. (New York: Van Evrie, Horton, & Co., 1868), 2. Edmund Burke, Thomas Paine, Reflections on the 153–55; Forry, “Vital Statistics,” 159; Paul B. Bar- Revolution in France and The Rights of Man (Gar- ringer, The American Negro: His Past and Future den City, NY: Anchor Press/Doubleday, 1973); for (Raleigh: Edwards & Broughton, 1900), 10. rhetoric of monstrosity, see pp. 22, 49, 81, 159, 9. Cited in Forry, “Vital Statistics,” 162–63. John C. 208, 212, 224, 229–34, 244, 321; blindness: 53, 64, Calhoun, “Mr. Calhoun to Mr. Pakenham,” in 185, 224; imbecility and madness: 135, 206, 219, Richard K. Cralle, ed., The Works of John C. Cal- 233, 248, 261. houn (New York: D. Appleton, 1888), 5: 337. 3. Ian Hacking, The Taming of Chance (Cambridge 10. Cartwright, “Report,” 707–10. See also Thomas and New York: Cambridge University Press, S. Szasz, “The Sane Slave: A Historical Note on 1990), 160–66. See also Georges Canguilhem, the Use of Medical Diagnosis as Justificatory The Normal and the Pathological (New York: Rhetoric,” American Journal of Psychotherapy 25 Zone Books, 1989); Douglas C. Baynton, Forbid- (1971): 228–39. den Signs: American Culture and the Campaign 11. Van Evrie, White Supremacy, 121, 181, 221. Van against Sign Language (Chicago: University of Evrie notes in his preface that the book was Chicago Press, 1996), chaps. 5–6. completed “about the time of Mr. Lincoln’s 4. Francois Ewald, “Norms Discipline, and the election” and was therefore originally an argu- Law,” Representations 30 (Spring 1990): 146, ment in favor of the continuation of slavery 149–50, 154; Lennard Davis, Enforcing Nor- but presently constituted an argument for its malcy: Disability, Deafness, and the Body (Lon- restoration. don: Verso, 1995); Baynton, Forbidden Signs, 12. J. F. Miller, “The Effects of Emancipation upon chaps. 5 and 6. the Mental and Physical Health of the Negro of 5. Late nineteenth-century educators began using the South,” North Carolina Medical Journal 38 “normal child” as the counterpart to “deaf child” (Nov. 20, 1896): 285–94. instead of the “hearing” and “deaf” of previous 13. Samuel Forry, “On the Relative Proportion of generations. “Normal” appears to refer to an Centenarians, of Deaf and Dumb, of Blind, and average, since the “average” person is hearing. of Insane in the Races of European and African Since it does not exclude those with superior Origin,” New York Journal of Medicine and the hearing, however, it does not denote the average Collateral Sciences 2 (May 1844): 313. but those above a certain standard. 14. Van Evrie, White Supremacy 199, chap. 15 passim; 6. Daniel J. Kevies, In the Name of Eugenics: Genet- Arnold Guyot, Physical Geography (1873; reprint, ics and the Uses of Human Heredity (Berkeley: New York: American Book Co., 1885), 114–18; University of California Press, 1985), 160; Bayn- Nott, “Mulatto a Hybrid,” quoted in Forry, “Vital ton, Forbidden Signs, chap. 2; James W. Cook, Statistics,” 163–64; Cook, “Of Men, Missing Jr., “Of Men, Missing Links, and Nondescripts: Links, and Nondescripts,” 139–57; Robert Bog- The Strange Career of P. T. Barnum’s ‘What Is It?’ dan, Freak Show: Presenting Human Oddities for Exhibition,” in Rosemarie Garland Thomson, Amusement and Profit (Chicago: University of ed., Freakery: Cultural Spectacles of the Extraor- Chicago Press, 1988), 134–42. dinary Body (New York: New York University 15. Winthrop D. Jordan. White over Black: American Press, 1996); James W. Trent, Jr., “Defectives at Attitudes toward the Negro, 1550–1812 (Chapel 32 | DOUGLAS C. BAYNTON

Hill: University of North Carolina Press, 1968), frage Movement (New York: W. W. Norton & Co., 518–25; Rush explained not only African skin this 1981), 20. See also Anne Digby, “Woman’s Bio- way but the nose, lips, and hair as well. Smith- logical Straitjacket,” in Susan Mendas and Jane sonian Institution Archives, Collection 60—War- Randall, eds., Sexuality and Subordination: Inter- shaw Collection, “Soap,” Box 4 Folder: Fairbanks; disciplinary Studies of Gender in the Nineteenth dated 1893 or 1898 (illegible). Century (New York: Routledge, 1989), 192–220. 16. Smithsonian Institution Archives, Collection 24. Woman’s Rights Conventions: Seneca Falls and 60—Warshaw Collection, “Afro-Americana,” Box Rochester, 1848 (New York: Arno Press, Inc., 1969), 4, Folder 7, n.d. 4–6; originally published as Proceedings of the 17. Smithsonian Institution Archives, Collection Woman’s Rights Convention, Held at Seneca Falls 60—Warshaw Collection, “AfroAmericana,” Box and Rochester, N.Y., July and August, 1848 (New 4, Folder 4, n.d., ca. 1893. York: Robert J. Johnston, 1870), 4–6. 18. Daryl Michael Scott, Contempt and Pity: Social 25. Lisa Tickner, The Spectacle of Women: Imagery of Policy and the Image of the Damaged Black Soul, the Suffrage Campaign, 1907–14 (Chicago: Univer- 1880–1996 (Chapel Hill: University of North Car- sity of Chicago Press, 1988), illustration IV; Alice olina Press, 1997) xi–xvii; 12, 208 n. 52. Sheppard, Cartooning for Suffrage (Albuquerque: 19. Cynthia Eagle Russett, Sexual Science: The Victo- University of New Mexico Press, 1994), 30; Eliza- rian Construction of Womanhood (Cambridge, beth Cady Stanton, Susan B. Anthony, and Matilda Mass.: Harvard University Press, 1989), 63. See Joslyn Gage, eds., History of Woman Suffrage also Lois N. Magner, “Darwinism and the Woman (1881; reprint, New York: Arno Press, 1969), 2: 288, Question: The Evolving Views of Charlotte Per- quoted in Yvonne Pitts, “‘Under This Disability of kins Gilman,” in Joanne Karpinski, Critical Essays Nature’: Women and Constructions of Disabil- on Charlotte Perkins Gilman (New York: G. K. ity in the National Suffrage Debates, 1870–1920” Hall, 1992), 119–20. (paper presented to the Berkshire Conference on 20. Grace Duffield Goodwin, Anti-Suffrage: Ten the History of Women, June 1999); Elizabeth Cady Good Reasons (New York: Duffield and Co., 1913), Stanton, “Address to the National Woman Suffrage 91–92 (in Smithsonian Institution Archives, Col- Convention, Washington, D.C., January 19, 1869,” lection 60—Warshaw Collection, “Women,” Box in Mari Jo Buhle and Paul Buhle, eds., The Concise 3). Edward Clarke, Sex in Education; or, A Fair History of Woman Suffrage (Urbana: University of Chance for Girls (1873; reprint, New York: Arno Illinois Press, 1978), 256. Press, 1972), 18, 22, 62. 26. O. B. Frothingham, “The Real Case of the ‘Remon- 21. William Warren Potter, “How Should Girls Be strants’ against Woman Suffrage,” The Arena 2 Educated? A Public Health Problem for Mothers, (July 1890): 177. Educators, and Physicians,” Transactions of the 27. Woman’s Rights Conventions, 11; on Charlotte Medical Society of the State of New York (1891): Perkins Gilman, see Kraditor, Ideas of the Woman 48, quoted in Martha H. Verbrugge, Able Bodied Suffrage Movement, 97–101; “Preceding Causes, Womanhood: Personal Health and Social Change written by Matilda Joslyn Gage, in 1881,” in Buhle in Nineteenth-Century Boston (Oxford and New and Buhle, eds., Concise History, 53. York: Oxford University Press, 1988), 121. 28. United States Statutes at Large (Washington, 22. A. Lapthorn Smith, “Higher Education of Women D.C.: Government Printing Office, 1883), 22:214. and Race Suicide,” Popular Science Monthly United States Statutes at Large (Washington, (March 1905), reprinted in Louise Michele D.C.: Government Printing Office, 1891), 26:1084; Newman, ed., Men’s Ideas/Women’s Realities: United States Statutes at Large (Washington, Popular Science, 1870–1915 (New York: Per- D.C.: Government Printing Office, 1907), 34: 899. gamon Press, 1985), 149; Almroth E. Wright Emphases added. quoted in Mara Mayor, “Fears and Fantasies of 29. United States Statutes at Large (Washington, the Anti-Suffragists,” Connecticut Review 7 (April D.C.: Government Printing Office, 1903), 32: 1974): 67; Charles L. Dana quoted in Jane Jerome 1213; United States Public Health Service, Regu- Camhi, Women against Women: American lations Governing the Medical Inspection of Aliens Anti-Suffragism, 1880–1920 (New York: Carlson (Washington, D.C.: Government Printing Office, Publishing Co., 1994), 18; Clarke, Sex in Educa- 1917), 28–29. tion, 12. 30. Statutes (1907), 34: 899; United States Public 23. Magner, “Darwinism,” 119–20; Nancy Woloch, Health Service, Regulations, 30–31, Fiorello H. Women and the American Experience, vol. 1: To LaGuardia, The Making of an Insurgent: An Auto- 1920 (New York: McGraw-Hill, Inc., 1994), 339: biography, 1882–1919 (1948; reprint, New York: Aileen S. Kraditor, The Ideas of the Woman Suf- Capricorn, 1961), 65. DISABILITY AND THE JUSTIFICATION OF INEQUALITY IN AMERICAN HISTORY | 33

31. United States Public Health Service, Regulations, York: Basic Books, 1994), 54–57. 16–19; U. O. B. Wingate, “Quaranteen Immigra- 39. Victor Safford, Immigration Problems: Personal tion at the Port of New York,” Milwaukee Medical Experiences of an Official (New York: Dodd, Journal 1 (1893): 181, quoted in Elizabeth Yew, Mead, 1925), 244–46. “Medical Inspection of Immigrants at Ellis Island, 40. Kraut, Silent Travelers, 55. 1891–1924,” Bulletin of the New York Academy of 41. Letter from W. W. Husband, Commissioner Gen- Medicine 56 (June 1980): 494. eral, Bureau of Immigration, to H. S. Cumming, 32. Philip Cowen, Memories of an American Jew (1932; Surgeon General, United States Public Health reprint, New York: Arno Press, 1975) 148–49. Service, September 27, 1922; and reply from 33. U.S. Bureau of Immigration, Annual Report of Cumming to Husband, September 29, 1922; the Commissioner of Immigration (Washington, National Archives, RG 90, Entry 10, File 219. D.C.: Government Printing Office, 1907), 62; 42. Letter from George Stoner, Chief Medical Officer, Francis A. Walker, “Restriction of Immigration,” Public Health and Marine Hospital Service, to Atlantic Monthly 77 (June 1896): 822; Ellsworth Surgeon General of the Public Health and Marine Eliot, Jr., M.D., “Immigration,” in Madison Grant Hospital, Nov. 29, 1912, National Archives, RG 90, and Charles Steward Davison, eds., The Alien in Entry 10, File 219. Our Midst, or Selling our Birthright for a Mess of 43. Letter from F. P. Sargent, Commissioner-General Industrial Pottage (New York: Galton Publishing of the Bureau of Immigration, to the Commis- Co., 1930), 101. sioner of Immigration on Ellis Island, April 17, 34. See James W. Trent Jr., Inventing the Feeble Mind: 1905, National Archives, RG 90, Entry 10, File 219. A History of Mental Retardation in the United 44. Allan McLaughlin, “The Problem of Immigra- States (Berkeley: University of California Press, tion, “Popular Science Monthly 66 (April 1905): 1994), 166–69. 532 (emphasis added). 35. Thomas Wray Grayson, “The Effect of the 45. Letter from Leon Sanders, President of the Modern Immigrant on Our Industrial Centers,” Hebrew Sheltering and Immigrant Aid Soci- in Medical Problems of Immigration (Easton, ety, to Surgeon General of the Public Health Penn.: American Academy of Medicine, 1913), and Marine Hospital, Nov. 14, 1909, National 103, 107–9. Archives, RG 90, Entry 10, File 219. Kraut, Silent 36. Martin Pernick, The Black Stork: Eugenics and the Travelers, 65. William Green, “Immigration Death of “Defective” Babies in American Medicine Should Be Regulated,” in Grant and Davison, and Motion Pictures since 1915 (Oxford and New Alien in Our Midst, 2. York: Oxford University Press, 1996), 60–71; Davis, 46. Norman S. Dike, “Aliens and Crime,” in Grant Enforcing Normalcy, 11–12. See also Harlan Hahn, and Davison, Alien in Our Midst, 81. “Antidiscrimination Laws and Social Research 47. Ellsworth Eliot, Jr., M.D., “Immigration,” in Grant on Disability: The Minority Group Perspective,” and Davison, Alien in Our Midst, 101. Behavioral Sciences and the Law 14 (1996): 54; 48. Heather Salerno, “Mother’s Little Dividend: Park- Alfred C. Reed, “Going through Ellis Island,” Pop- ing,” Washington Post (September 16, 1997): Al. ular Science Monthly 82 (January 1913): 8–9. 49. Rosemarie Garland Thomson, Extraordinary 37. Edward Alsworth Ross, The Old World and the Bodies: Figuring Physical Disability in American New: The Significance of Past and Present Immi- Culture and Literature (New York: Columbia Uni- gration to the American People (New York: Cen- versity Press, 1997), 15. Amy Hamburger, “The tury Co., 1914), 285–90. Cripple and His Place in the Community,” Annals 38. Elizabeth Yew, “Medical Inspection of Immi- of the American Academy of Political and Social grants at Ellis Island, 1891–1924,” Bulletin of the Science 77 (1918): 39. New York Academy of Medicine 56 (June 1980): 50. Harlan Hahn, “Antidiscrimination Laws and 497–98; United States Public Health Service, Reg- Social Research on Disability: The Minority ulations, 16–19; Alan M. Kraut, Silent Travelers: Group Perspective,” Behavioral Sciences and the Germs, Genes, and the “Immigrant Menace” (New Law 14 (1996): 43. CHAPTER 3

“Heaven’s Special Child”: The Making of Poster Children Paul Longmore

Tiny Tim was a little “crippled” boy whose Telethons in effect reenacted a ver- sweetness and courage and pathetic plight sion of A Christmas Carol. The hosts and melted the heart of miserly Ebenezer audiences were huge Cratchit clans, with Scrooge. Scrooge’s charity toward Tim disabled children—and adults—playing secured his own redemption. Dickens’s Tiny Tim. Jerry Lewis on the MDA pag- A Christmas Carol was a Yuletide staple. eant, Dennis James in the UCP spectacle, Between 1901 and 2009, the entertainment Pat Boone on the Easter Seals rite, and the industry produced fifty-six live-action and other hosts, male and female, conflated the fifteen animated movie and television ver- roles of the Christmas Ghosts and Bob and sions. Many were available on video and Mrs. Cratchit. They were moral preceptors were rerun on TV each December.1 Book to potential donors, instructing them in retailers sold illustrated volumes as a holi- their duty to look after Tiny Tim’s siblings. day gift.2 And each December it seemed that At the same time, the hosts and the givers every theater in the U.S. staged the story as were the Cratchits gathered around the a play.3 Americans saw a lot of Tim. sweet pathetic children. Viewers at risk of But Tiny Tim was more than a char- becoming Scrooges peered through their acter in Dickens’s tale. He was a ubiqui- TV screens and learned that they could join tous cultural figure. The annual return the family by opening their hearts to the of A Christmas Carol did not exhaust his afflicted Tims. By looking after the “most appearances or significance. He arrived weak,” they could buy a place at the tel- not just seasonally but almost year-round. ethon hearth. Or rather, not Tim himself, but the Tiny Telethon Tiny Tims were not just Jer- Tim image was made into a constant and ry’s kids. They belonged to anyone who powerful cultural symbol, especially on phoned in a pledge to any of the telethons. telethons. Its main purveyors were the dis- Some Easter Seals posters declared “He’s ability charities. Within both the charity yours too.” Easter Seals local hosts touted tradition and the operation of the medical “Adopt-a-Child.” As with charities for Third model, that persona helped to shape the World children, sponsors supported a par- identities of millions of people with dis- ticular youngster, who would write them a abilities. Disability rights advocates chal- personal thank-you.4 On some Easter Seals lenged the ideology behind that imposed telecasts, Pat Boone spoke for those chil- identity. dren in song: “HEAVEN’S SPECIAL CHILD”: THE MAKING OF POSTER CHILDREN | 35

I am your child. British marketplace. It also anticipated Wherever you go, twentieth-century fundraising that linked You take me too. charity with commerce and patriotism.8 Whatever I’ll know, In 1930s America, the National Society I’ll learn from you. for Crippled Children and Adults and the Whatever I do, polio crusade invented child-based meth- You’ll teach me to do. I am your child . . . . ods that became standard in disability- You are my hope. related soliciting. As the Society (founded You are my chance. in 1919) launched its 1934 drive, finance And I am your child.5 chair Paul King asked Cleveland Plain Dealer cartoonist J. H. Donahey to design “Believe me,” declared UCP’s Dennis a stamp supporters could purchase for a James, “we’re all taking care of heaven’s penny and place on envelopes and letters. special child.”6 That first Easter Seal pictured a boy wear- Through much of Western history, disa- ing leg braces and leaning on crutches, his bled and sick children were central to the head bent sadly. Behind him was a white practice of charity. In early modern Britain, cross and—reminiscent of Hogarth’s coat- children’s hospitals drew more support of-arms—the words “Help Crippled Chil- than those treating adults with venereal dren.” The design expressed clients’ alleged disease. Though the latter were desperately plea “simply for the right to live a normal needed, philanthropists feared they would life.” The huge public response eventu- be seen as supporting vice and debauchery. ally prompted the organization to rename Beneficence to children instead associated itself the National Easter Seal Society. In them with innocent suffering. In any era, 1952, it made the lily part of its logo. The donation typically went to institutions that flower explicitly represented spring, while promised the greatest public approbation. implicitly referring to the season’s religious That was one reason children were always holiday and the charity’s “quasi-religious popular as objects of charity. Older people tenor.” The Society also held annual con- were much less likely to receive such relief tests in each state to select children as the and remained desperately in need until public faces of its affiliates’ fundraising.9 the establishment of state pensions in the Meanwhile, the polio campaign crafted twentieth century.7 its own child-centered strategy. As early The eighteenth-century English art- as 1932, the Warm Springs Foundation ist William Hogarth may have pioneered enlisted illustrator Howard Chandler images of children as a charity fundraising Christy—famous for his World War I Uncle tool. A governor of London’s first foundling Sam “I-Want-You” recruiting poster—to hospital, established in 1737, he designed design a poster featuring a disabled child. both “a distinctive uniform” for the infant He also drew program covers for the Presi- inmates and “an affecting coat-of-arms” dent’s Birthday Balls. Unlike later images, for the institution. The latter displayed “a these drawings did not make the children’s new-born child flanked by the figures of disabilities visible.10 But as time went on, Nature and Britannia, with the plaintive the drive began to stress those physical dif- motto ‘Help!’” He and other artists exhib- ferences. In 1934, exhorting his audience ited their paintings at the hospital, invit- to support the Birthday Balls, nicknamed ing wealthy patrons to buy them. This “Paralysis Dances,” syndicated column- advanced Hogarth’s aim to make British ist and radio personality Walter Winchell art competitive with Continental art in the invoked the image of a paralyzed child. “If 36 | PAUL LONGMORE

you buy a ticket to dance,” he said, “then had only local poster children, but its some little child who can’t even walk may national telecasts were filled with images be able to dance some day.” Polio publi- of youngsters.16 Even the Arthritis Telethon cists blazoned the slogan “Dance so that used children to elicit alms. Of the thirty- a child may walk.” They filled the nation’s seven million Americans with connective- newspapers with studies in physical con- tissue diseases, 200,000 were kids or teens trast, photos of nondisabled adult dancers with juvenile rheumatoid arthritis. Still, alongside pictures of children crippled by the telethon showcased a disproportionate polio.11 number of children.17 In 1937, strategists at the new National At a 1986 workshop on the how-to’s Foundation for Infantile Paralysis “shifted of telethon success, Easter Seals officials the main appeal” from paying tribute to told local chapter executives: “Children FDR as a victor over polio to “unashamed raise more money than adults.” Young- exploitation of the pathetic appeals of sters were effective fundraising tools, they crippled children.” NFIP’s March of explained, because the public sympathized Dimes hammered at the radical difference with images of “the most weak.” They also between crippled children and normal kids. reported that girls pulled in larger amounts Its first drive in 1938 featured nondisabled than boys.18 Of the forty-eight national children wearing buttons that proclaimed, poster children chosen between 1947 and “I’m glad I’m well.”12 In 1946, it begat its first 1994, two out of three were girls. For MDA, poster child.13 And its ominous film “The the gender pattern seemed the reverse, Crippler” blended sentimentality and pity with boys—in particular, boys with Duch- with terror, fear, and hope. “A figure lean- enne Muscular Dystrophy—attracting ing on a crutch—sinister in its invisibility— more money. stalks the land like death itself. . . . ‘And I’m Easter Seals’ strategists also said that especially fond of children,’ the voice-over White kids drew more donations than chil- intones with fiendish glee. . . .”14 dren of color, though more nonwhite chil- The strategies contrived in the 1930s dren would appear by the later decades of persisted over the next seven decades. Dis- the twentieth century. The ethnic ratios on ability charities drew on the cult of sen- all telethons reflected that strategic judg- timentalism’s traditional tropes as they ment, even though disability prevalence focused public attention on the icon of the rates were higher in minority communi- innocent helpless child.15 The agencies also ties.19 Among those forty-eight Easter Seals used adults to illustrate their services, but poster children, just one—a girl—was Afri- the grown-ups got nowhere near the pub- can-American, while another girl was born licity beamed at the kids. Poster children in India. The selections reflected historic were, by design, the most visible symbols patterns of discrimination in health care. of fundraising. At the back of their stages, During the 1930s and 1940s, African-Ameri- the UCP, MDA, and Easter Seals telethons can community leaders criticized the Warm displayed photos of children. Easter Seals’ Springs Foundation and the National Foun- 1994 opening scrolled images from past dation for Infantile Paralysis for neglect- programs; nine out of ten showed chil- ing black polio patients and then treating dren. Later, there was a montage of forty- them in segregated facilities. Following eight years of poster children but no retro- World War II, in response to the civil rights spective of adult representatives. Besides movement and Cold War race politics, the “national” children, Easter Seals and MDA NFIP slowly began to fund integrated train- exhibited state and local poster kids. UCP ing programs and medical rehabilitation “HEAVEN’S SPECIAL CHILD”: THE MAKING OF POSTER CHILDREN | 37 facilities. Concurrently, beginning in be congenial and presentable. They must 1947 a few African-American children be attractive, telegenic. “The national child were selected as poster children for local, doesn’t have to be gorgeous,” said Easter regional, and national campaigns.20 Begin- Seals’ Perkins, “as long as they look OK.” ning in the 1990s, perhaps because of the Poster kids must not look too different. growth of the middle class in minority com- According to the MDA telethon’s producer, munities as well as the impact of civil rights Jerry Lewis “prefer[red] his poster child to movements, more disabled people of color, be ambulatory. He says he doesn’t want adults as well as children, were featured to bend over a wheelchair to raise a buck.” on telethons. For example, those African But in fact, Lewis was often shown bending American and Indian girls were Easter Seal over his “kids” seated on wheelchairs. It National Child Representatives in the early was a tricky balance: they had to appear 1990s, and in 1996 and 1997, MDA chose a helpless but they mustn’t be too disabled.23 Latino lad and an African-American young- These considerations were crucial ster as National Ambassadors.21 because poster children did far more than Given poster children’s important func- appear on the telethons. The charities dis- tion, their selection became an art. Fash- played Tiny Tim’s siblings year-round. A ions changed in the charity business, noted blizzard of poster-kid pictures blanketed the Los Angeles Times in 1986, but choos- the nation. Their images looked out from ing child spokespersons remained highly drugstore and supermarket displays tied to competitive. It had “earmarks of a beauty Easter Seals and MDA promotions. Their pageant: stage mothers trying to boost photos were fixed on MDA and UCP “banks” their youngsters to fame and fortune, chil- beside restaurant and grocery-store cash dren trying too hard to impress, and local registers. Newspapers and magazines fea- Easter Seals officials going to great lengths tured stories about them. They went to to promote their nominees.” One chapter charity fundraisers: “bowl-a-thons,” golf “arranged for [national communications tournaments, and dinners honoring local director Sandi Gordon] Perkins to be flown business leaders. They posed with sports in on a sponsor’s corporate airplane, gave heroes and Hollywood celebrities. Over her a party featuring California wine—and the song “You’ve Got to Have Friends,” followed up with an angry letter when the the Easter Seals Telethon screened a photo chapter’s candidate was not selected.” montage of national poster children with Local leaders promoted their favorites as movie and TV stars.24 embodying sentimental stereotypes. Of Poster kids were “seen and listened to one finalist, a functionary wrote: “His clear, by millions of Americans,” noted the Los sweet, high-pitched voice . . . together with Angeles Times. Just halfway through his his angelic face, breaks hearts.” Another “reign,” the 1986 National Easter Seals declared that a girl had “a special magnet- Child had flown tens of thousands of miles, ism that will draw you near and steal your everywhere from Washington, DC to Las heart.”22 Vegas to Puerto Rico. He had addressed Each charity chose youngsters who conventions of everyone from realtors to embodied its particular message. MDA and truck drivers. And his image had appeared Arthritis kids were heart-tuggingly depend- “on everything from Easter Seals’ seals to ent; Easter Seals and UCP children were Crayola crayons posters to Safeway delivery plucky overcomers. But all poster children trucks.” His image had been reproduced had this much in common: picked for “roughly 70 million times.” And he still had “practical marketing reasons,” they must six months to go as a poster child.25 38 | PAUL LONGMORE

Especially important, these dependent century America, the Tiny Tim persona was children were introduced to the execu- central to framing the cultural, social, and tives whose corporations were the chari- political meaning of disability. The charities’ most prominent supporters. A review ties depicted the representative disabled of hundreds of hours of telethons found a person as a vulnerable child, one of “the few segments featuring executives visiting most weak.” therapy centers that served adults and just one that showed them meeting an adult NOTES with a disability in a business setting. Tel- 1. The names of many of the actors who played ethons did not present executives or their Scrooge are included with each entry. Live- employees encountering disabled adults action motion pictures and television programs: in situations that portrayed them as col- A Christmas Carol (1901); A Christmas Carol leagues or even potential co-workers. But (Essanay, 1908); A Christmas Carol (Edison, they met lots of children. 1910), Mark McDermott; A Christmas Carol (1912); A Christmas Carol (dir. Leedham Bantock, Poster children also had their pictures Zenith Film Company, 1913), Seymour Hicks; A taken with elected officials—state gover- Christmas Carol (dir. Harold M. Shaw, Fenning nors and legislators, members of Congress, London Film Company, 1914), Charles Rock; even the President of the United States.26 The Right to Be Happy aka A Christmas Carol From Harry S. Truman to William Jeffer- (dir. Rupert Julian, Universal, 1916); Scrooge (dir. George Wynn, 1922), H. V. Esmond; Tense son Clinton, presidents annually met the Moments with Great Authors: “#7 Scrooge” (dir. national poster children of several dis- H. B. Parkinson, W. Courtney Rowden, 1922), ability charities. A photo of MDA’s 1993 H. V. Esmond; Scrooge (dir. Edwin Greenwood, national child with Clinton ran in 3,900 1923), Russell Thorndike; Scrooge (dir. Hugh newspapers.27 In 1995, First Lady Hillary Croise, 1928), Bransby Williams; Scrooge (dir. Henry Edwards, Julius Hagen-Twickenham, Rodham Clinton appeared on the UCP Tel- 1935), Seymour Hicks; A Christmas Carol (dir. ethon with a four year-old girl, a UCP cli- Edwin L. Marin, MGM, 1938), Reginald Owen; ent, to urge viewers to support that charity. A Christmas Carol (dir. George Lowther, 1943), In 1992, Easter Seals aired a medley of pho- William Podmore, this version was 60 minutes tos of its national children meeting every and, at the time, was the longest U.S. TV program yet broadcast; A Christmas Carol (dir. James President from George H. W. Bush all the Caddigan, 1947), John Carradine; The Philco way back to Truman while viewers heard Television Playhouse: “A Christmas Carol” (dir. the song “Stand By Me.”28 Fred Coe, 1948), Dennis King; The Christmas “The poster child is our major ambas- Carol (dir. Arthur Pierson, 1949), was a U.S. sador to the public,” explained a March TV film narrated by Vincent Price with Taylor 29 Holmes as Scrooge; A Christmas Carol (British of Dimes spokeswoman. That icon influ- TV, 1950), Bransby Williams; Fireside Theatre: “A enced business executives’ attitudes about Christmas Carol” (dir. Gordon Duff, 1951), Ralph the millions of adults they might have seen Richardson; Scrooge, aka A Christmas Carol as customers, employees, or colleagues, (dir. Brian Desmond Hurst, Showcorporation/ instead of recipients of their charity. It George Minter/Renown, 1951), Alistair Sim; Kraft Television Theatre: “A Christmas Carol” (1952), instructed lawmakers as they formulated Malcolm Keen; Shower of Stars: “A Christmas policies that affected disabled citizens. It Carol” (dir. Ralph Levy, 1954), Fredric March; defined who Americans with disabilities The Alcoa Hour: “The Stingiest Man in Town” really were and what they really needed. (dir. Daniel Petrie, 1955), Basil Rathbone; Story Reinforcing the medical model, char- of the Christmas Carol (dir. David Barnheizer, 1955), Norman Gottschalk; General Electric ity images portrayed them as dependent Theater: “The Trail to Christmas” (dir. James objects of beneficence whose most impor- Stewart, 1957), a cowboy tells a boy the Dickens tant needs were medical. In late twentieth- tale with John McIntire as Scrooge; Tales from “HEAVEN’S SPECIAL CHILD”: THE MAKING OF POSTER CHILDREN | 39

Dickens: A Dickens Christmas: “A Christmas 1999), Patrick Stewart; A Christmas Carol (dir. Carol” (dir. Neil McGuire, 1958), TV series Catherine Morshead, 2000), British TV movie, hosted by Fredric March with Basil Rathbone Ross Kemp as Eddie Scrooge; A Diva’s Christmas as Scrooge; Mr. Scrooge (dir. Bob Jarvis, 1964), Carol (dir. Richard Shankman, 2000), a TV Cyril Ritchard; Carry on Christmas (dir. Ronnie movie made for VH1 with Vanessa L. Williams Baxter, 1969), comedy with Sid James; Scrooge as pop singing star Ebony Scrooge; Scrooge and (dir. Ronald Neame, Cinema Center, 1970), Marley (dir. Fred Holmes, 2001), an evangelical musical version with Albert Finney; A Christmas Christian version with Dean Jones; A Carol Carol (dir. Richard Williams, 1971), British TV Christmas (dir. Matthew Imas, Hallmark, 2003), movie with Alistair Sim; A Christmas Carol (dir. Tori Spelling as Carol Cartman, a selfish TV talk Moira Armstrong, BBC, 1976), Michael Hordern; show host; A Christmas Carol: The Musical (dir. Scrooge (dir. John Blanchard, Canadian TV Arthur Alan Seidelman, 2004), Kelsey Grammer; movie, 1978); An American Christmas Carol A Carol of Christmas (dir. Roland Black, 2005); (Scherick-Chase-Slan/Scrooge Productions/ Chasing Christmas (dir. Ron Oliver, 2005), a Smith-Hemion, 1979), Henry Winkler as a New time-traveling version with Tom Arnold as a England “Scrooge” during the Great Depression, Scrooge-like single dad; The Carol Project (dir. who is redeemed by helping the family of a boy Tim Folkmann, 2006), musical; The Nutcracker: (Chris Crabb) who needs rehabilitation from A Christmas Story (2007), a ballet combining polio; A Christmas Carol at Ford’s Theatre (1979); the E.T.A. Hoffman story with the Dickens Skinflint: A Country Christmas Carol (1979), a tale. Animated productions: Mister Magoo’s country music version with Hoyt Axton as Cyrus Christmas Carol (dir. Abe Levitow, UPA, 1962); Flint; A Christmas Carol (dir. Laird Williamson, Bah, Humduck! A Looney Tunes Christmas 1981), William Paterson, a US TV movie; The (dir. Charles Visser, Warner, 2006), Daffy Duck; Guthrie Theatre Presents a Christmas Carol A Christmas Carol (dir. Zoran Janjic, Australia, (The Entertainment Channel, 1982), film of Air Programs International, 1969), screened on stage production, narrated by John Gielgud; The US TV 1970; The Stingiest Man in Town (dirs. Gospel According to Scrooge (dir. Mark S. Vegh, Jules Bass, Arthur Rankin Jr., Rankin-Bass, 1978), 1983); A Christmas Carol (dir. Clive Donner, CBS, Walter Matthau as the voice of Scrooge and 1984), George C. Scott; A Christmas Carol (1994), Robert Morse as the voice of Young Scrooge; A U.S. ballet; Ebbie (dir. George Kazcender, Victor Christmas Carol (Australia, 1982); A Christmas Television Productions/Maverick Crescent Carol (Burbank Productions, 1982), narrated by Entertainment Limited, 1994), Susan Lucci as a Michael Redgrave; Mickey’s Christmas Carol (dir. hard-driving department store owner Elizabeth Burny Mattinson, Disney, 1983), Alan Young as the “Ebbie” Scrooge, whose widowed assistant voice of Scrooge McDuck; The Muppet Christmas Roberta Cratchit has a son named Timmy Carol (dir. Brian Henson, 1992), Michael Caine who needs medical treatment; Ebbie decides as the voice of Scrooge; A Christmas Carol (dirs. to provide adequate health insurance for all Toshiyuki Hiruma, Takashi Masunaga, Jetlag, her employees; John Grin’s Christmas (1986), 1994); A Flintstones Christmas Carol (dir. Joanna features an African-American Scrooge, Robert Romersa, 1994); A Christmas Carol (dir. Stan Guillaume, and no Tiny Tim, but does feature a Phillips, DIC Entertainment, 1997), narrated generous and insightful blind woman; Scrooged by Tim Curry; Christmas Carol: The Movie (dir. (dir. Richard Donner, 1988), Bill Murray as a Jimmy T. Murakami, 2001), Simon Callow as heartless executive producing a telecast of A the voice of Scrooge; A Sesame Street Christmas Christmas Carol with Buddy Hackett as Scrooge; Carol (dirs. Ken Diego, Victor DiNapoli, Emily Bah! Humbug!: The Story of Charles Dickens’ “A Squires, Jon Stone, 2006); Barbie in A Christmas Christmas Carol” (dir. Derek Bailey, PBS, 1994), Carol (Australia, 2008); A Christmas Carol (dir. a reading by actors James Earl Jones and Martin Robert Zemeckis, Disney, 2009), Jim Carrey as Sheen; Ebenezer (dir. Ken Jubenvill, 1997), a the voice of Scrooge. Internet Movie Database, Wild West version with Jack Palance as a ruthless http://www.imdb.com (accessed 20–22 cattle baron; Ms Scrooge (Wilshire Court/ November 2009); Martin F. Norden, The Cinema Power Pictures, 1997), Cicely Tyson as Ebenita of Isolation, A History of Physical Disability in Scrooge who, like “Ebbie,” decides to pay for the Movies (New Brunswick: Rutgers University medical treatment for Tim (who this time has a Press, 1994), 33; Patricia King Harrison and Alan slow-growing congenital tumor in his leg) and Gevinson, ed., American Film Institute Catalog health insurance for her employees; A Christmas 1931–1940 (Berkeley: University of California Carol (dir. David Hugh Jones, Flying Freehold, Press, 1993), 347. 40 | PAUL LONGMORE

2. In June 1999, Books in Print listed 66 different 2005), 110–11; Easter Seals Telethon, 1991; editions of the story, including adaptations James E. Williams, Jr., “Easter Seals transforms based on Dickens’s basic plot. the telethon,” Fund Raising Management 26, 3. In the late 1930s, the WPA Federal Theater no. 7 (September 1995): 28–32; Charlotte Snow, Project in Los Angeles and other places made “Rehab Rival: Easter Seals is a Healthcare Force a theatrical version part of every Christmas to be Reckoned With,” Modern Healthcare 27, no. Season program. William F. McDonald, Federal 17 (28 April 1997), 18–19, http://www.lexisnexis. Relief Administration and the Arts (Columbus: com (accessed 1 June 2007). Ohio State University Press, 1969), 554. That 10. Scott M. Cutlip, The Unseen Power: Public customary programming continued decades Relations. A History (Hillsdale, NJ: Lawrence later. A sampling of the myriad stage productions Erlbaum Associates, 1994), 558–60, 561; Riley, from 1998 alone included not only major theaters Disability and the Media, 111–12. Christy’s such as Radio City Music Hall in New York City, illustrations for the 1936, 1937, and 1938 Birthday the San Diego Repertory Theater, and the Geary Balls program covers are reproduced online at Theater in San Francisco, but also the Totempole http://www.disabilitymuseum.org (accessed 7 Playhouse in Chambersberg, Pennsylvania; the July 2007). Bardavon Opera House in Poughkeepsie, New 11. Scott M. Cutlip, Fund Raising in the United York; Triangle Church in Chapel Hill, North States, Its Role in America’s Philanthropy (New Carolina; Hale Center Theater in Orem, Utah; the Brunswick: Rutgers University Press, 1965), 361, Hippodrome State Theater in Gainesville, Florida; 365–71. the Alley Theater in Houston; and Scrooge: The 12. Ibid., 376, 383–7, quotes from 384 and 387; Ballet! at the Hawaii Theater Center in Honolulu. Richard Carter, The Gentle Legions (Garden In 1999, comedian and composer Steve Allen City, NY: Doubleday, 1961), 112; David L. Sills, was reportedly writing songs for a stage musical The Volunteers: Means and Ends in a National adaptation. Reed Johnson, “Steve Allen Writes Organization (1957; repr., New York: Arno Press, Songs for ‘Christmas Carol’ Musical,” San 1980), 126–7, 169–70. Francisco Chronicle, 24 November 1999. In 2007, 13. David Zinman, “Many Former Poster Kids Lead playwright Christopher Durang satirized the Normal Lives Today,” Los Angeles Times, 16 Dickens’s tale. Robert Hurwitt, “‘Christmas Carol’ December 1984; David M. Oshinsky, Polio: An Meets ‘Wonderful Life’ in ‘Wild Binge,’” San American Story (New York: Oxford University Francisco Chronicle, 4 December 2007, http:// Press, 2005), 83. www.sfgate.com (accessed 4 December 2007). 14. Tony Gould, A Summer Plague: Polio and Its 4. “Adopt-a-Child” donors received a statuette of Survivors (New Haven: Yale University Press, a disabled child leaning on crutches behind a 1995), xi; Oshinsky, Polio: An American Story, 68, small dog. Easter Seals Telethon, 1990. 81–3. In 1974, MDA presented a video monologue 5. Ibid. entitled “I Hate People, Especially Children,” in 6. UCP Telethon, 1993. which an actor personified muscular dystrophy 7. William B. Cohen, “Epilogue: The European and, like “The Crippler,” “ominously hovers over Comparison,” in Charity, Philanthropy, and the figure of a healthy child.” The vignette was Civility in American History, ed., Lawrence J. written by Budd Schulberg and directed by Jerry Friedman and Mark D. McGarvie (New York: Lewis. Lawrence Joseph Londino, “A Descriptive Cambridge University Press, 2003), 393. Analysis of ‘The Jerry Lewis Labor Day Telethon 8. Linda Colley, Britons: Forging the Nation for Muscular Dystrophy’” (PhD diss.: University 1707–1837 (New Haven: Yale University Press, of Michigan, 1975), 127–8. 1992), 59. The London Foundling Hospital cared 15. See Chapters 7–8. Cutlip, Fund Raising in the for children with many kinds of disabilities, United States, 51; Riley, Disability and the medically and vocationally rehabilitating some Media, 111–12; Zinman, “Many Former Poster and providing lifelong maintenance for others. Kids Lead Normal Lives Today”; Ellen L. Barton, Alysa Levene, Childcare-Health and Mortality “Textual Practices of Erasure: Representations of at the London Foundling Hospital 1741–1800: Disability and the Founding of the United Way,” “Left to the Mercy of the World” (Manchester: in Embodied Rhetorics: Disability in Language Manchester University Press, 2007), 165–8. and Culture, ed. James C. Wilson and Cynthia 9. The organization officially adopted the name Lewiecki-Wilson (Carbondale: Southern Illinois National Easter Seal Society in 1979. Charles A. University Press, 2001), 178–9, 184, 187, 193. Riley, II, Disability and the Media: Prescriptions 16. See for instance Shawn Hubler, “After Initial for Change (University Press of New England, Anguish, Family of Cerebral Palsy Poster Child “HEAVEN’S SPECIAL CHILD”: THE MAKING OF POSTER CHILDREN | 41

is Picture of Happiness,” Los Angeles Times, 21 1991 poster child was a 10-year-old Latino boy. January 1990, South Bay edition. “Mutual admiration,” Chicago Sun-Times, 8 17. The 1988 Arthritis Telethon paraded photos of January 1991. kids with arthritis while a singer urged: “Share 22. Scott Kraft, “Poster Child Quest: Cute Isn’t your love with all the children of the world.” Enough,” Los Angeles Times, 7 April 1986. See See also Herbert J. Vida, “Dana Point Boy Works also Laura Kavesh, “It Takes a Tough Kid to Be a Hard as Arthritis Foundation Poster Child,” Los Poster Child,” Chicago Tribune, 29 March 1985, c Angeles Times, 8 June 1986, Orange County edition. On the March of Dimes selecting poster edition, http://www.proquest.com (accessed 7 children for both medical and cosmetic reasons July 2007). see Zinman, “Many Former Poster Kids Lead 18. Disability Rag 7, no. 2 (March/April 1986): 22; Normal Lives Today.” Dennis Hall and Susan G. Hall, American icons: 23. Kraft, “Poster Child Quest”; David Zinman, An Encyclopedia of the People, Places, and “Critics Say Drives Foster Stereotyping of Things That Have Shaped Our Culture, vol. 1 Disabled,” Los Angeles Times, 16 December (Westport, CT: Greenwood Publishing Group, 1984; Kavesh, “It Takes a Tough Kid to Be a 2006), 574. Poster Child”; Fred Rothenberg, “Waking up 19. For a summary of disability prevalence rates Telethon’s Wee Hours,” Toronto Globe and in the 1990s U.S. population among African- Mail, 3 September 1982, early edition. In a TV Americans, Asian-Americans/Pacific Islanders, commercial publicizing “Aisles of Smiles,” he Hispanic Americans, and Native Americans as appeared with his “friend,” that year’s national compared to European Americans see Rhoda poster child. The boy sat on a wheelchair, not Olkin, What Psychotherapists Should Know a power chair he could have operated on his about Disability (New York: Guilford Press, own, but a manual chair pushed by his paternal 1999), 19–20. benefactor Lewis. The spot created an image 20. Naomi Rogers, “Race and the Politics of Polio: of helplessness and dependency. Likewise, the Warm Springs, Tuskegee, and the March of 1993 MDA extravaganza opened with a musical Dimes,” American Journal of Public Health 97, number and then showed Lewis approaching no. 5 (May 2007), 784–95; Oshinsky, Polio: An and then bending to embrace the national poster American Story, 65–7. child who was sitting in a wheelchair. 21. MDA Telethon, 1996; “Benjamin Gives Hope to 24. Easter Seals Telethon, 1993; Kavesh, “It Takes a Others-Again,” Parade (31 August 1997). In 1986, Tough Kid to Be a Poster Child.” the MDA poster child for the District of Columbia 25. Kraft, “Poster Child Quest,” emphasis added. See was an African-American lad. Anne Simpson, also Kavesh, “It Takes a Tough Kid to Be a Poster “People: MDA Poster Child,” Washington Post, Child.” 8 May 1986. Service organizations in the black 26. Kavesh, “It Takes a Tough Kid to Be a Poster community supplied volunteers for the disability Child.” charities that may have, over the years, won them 27. Reported on MDA Telethon, 1993. greater attention from those agencies. “First Year 28. Easter Seals Telethon, 1991 and 1992. of Service Noted by AKA Chapter,” Los Angeles 29. Zinman, “Many Former Poster Kids Lead Normal Sentinel, 23 August 1979. The Chicago UCPA’s Lives Today.” CHAPTER 4

Disabling Attitudes: U.S. Disability Law and the ADA Amendments Act Elizabeth F. Emens1

This is an uncertain time for disability law between societal attitudes and the law’s in the United States. To understand why demands led to the narrowing of the stat- this is so, we need to start with a bit of his- ute in the courts. Although the original tory. In 1990, Congress passed the Ameri- ADA had impressive bipartisan support, it cans with Disabilities Act (ADA), which seems likely that the politicians who voted prohibits discrimination (including the for it came together for disparate reasons. failure to accommodate) in employment, Combine a few who understand disability public accommodations, and government as a civil rights issue, with those who see services. For nearly two decades after that, it through the lens of pity, with those eco- the courts made rulings that consistently nomically minded folks who see it as a way narrowed the scope of the ADA’s mandate. to get people off of welfare and onto the tax They did this, most obviously, by narrowly rolls, and you get the ADA.2 interpreting the term “disability,” thereby When the ADA eventually reached the limiting who could bring a claim under the courts, it encountered prevailing societal Act. Responding to this increasing restric- attitudes towards disability. Judges inter- tion of the ADA, in 2008 Congress passed preted it more narrowly than the advocates the ADA Amendments Act (ADAAA). This expected. Because the law was out ahead new act attempts to restore a broader of common sense, the courts did what they vision of the original ADA by, in particu- often do in such moments: they narrowed lar, expanding the statutory definition of the law to better fit their common sense.3 disability (§ 12101). Courts so far have had The question now is whether the revised limited occasions to interpret the revised ADA will encounter that same fate in the language. The question now looms as to courts. More than three years have passed whether that broader vision will survive since the new Act went into effect, but the courts. courts have interpreted the revision as Public attitudes toward disability played not applying retroactively to events that a role in the fate of the ADA over the nearly occurred before 2009,4 so there is currently twenty years between its passage and not much case law. My prediction is that the new amendments act. Often laws are unless attitudes change, courts will find passed to keep up with changing societal new ways to narrow the statute to com- attitudes. Other times, such as in this case, port with judges’, and society’s, “common the law is out ahead of attitudes. The gap sense.” DISABLING ATTITUDES: U.S. DISABILITY LAW AND THE ADA AMENDMENTS ACT | 43

So what is that common sense about nate on the basis of psychiatric disability. A disability? It is commonly assumed that friend of the employer might well respond, disability is unfortunate, even tragic, and “Are you crazy?” at the same time very costly for employ- The prevailing “common sense” is ers and for society. Under this view, dis- often ignorant about disability. Consider ability should be avoided at most costs and the “spread effect,” whereby outsid- accommodated only at a very limited cost. ers raise their voices at blind people or There is little sense that disability can have assume a wheelchair signals cognitive dis- benefits (to the person with the disability ability. And consider people’s reluctance or those around her), or that accommoda- to believe in unseen hidden physical dis- tions benefit more than the individual who abilities, in light of Elaine Scarry’s insights requests them. Disability is, in this view, about our frequent inability to apprehend, something we should just keep hoping will or even believe, another’s pain (Scarry eventually go away if science and medicine 1985, 4).7 get good enough to cure or eliminate it.5 In A caveat is in order, as this is a fairly the meantime, this common sense might gloomy story about what is clearly an excit- say, “we” (the nondisabled people, or ing legal development. The ADAAA inter- sometimes just “people”) should be good venes in the developing doctrine on dis- enough, moral enough, to do some things ability discrimination in important ways, to help disabled people, but not too much, and the passage of this ambitious legisla- lest we drag down society or the economy. tion is all the more impressive in a period And that is just the beginning. The pre- characterized more by retrenchment than vious paragraph is probably a fair charac- expansion of civil rights law. My hope is that terization of attitudes to the more popular the ADAAA will expand the scope of who is and relatively more visible forms of dis- protected under the law and who obtains ability such as paraplegia. My use of the accommodation, through the many legal word “popular” here is only slightly sar- and extralegal actors who implement the castic; it is no coincidence that a person law on a daily basis. If the ADAAA success- in a wheelchair is the symbol for disabled fully brings more people with disabilities parking, restrooms, and the like. This is so into the workplace, then attitudes toward because the more popular disabilities are disability should be improved through the ones (like paraplegia) that apparently increased contact with a wide range of affect only a discrete part of a person, leav- people with disabilities and with reasoning open the possibility of competence in able accommodations.8 other parts. Such a disabled person might While laws affect society through many still be “worth something,” from this trou- channels, however, courts play an important bling perspective. role in shaping the parameters of the law’s By contrast, mental or psychiatric dis- implementation. My concern is that the per- abilities are presumed to affect the whole sistence of negative and ignorant attitudes person. Many people—disabled and non- to disability will lead courts either to con- disabled alike—seem utterly unaware that tinue to narrow the scope of the statute, in discrimination against people with psy- defiance of the clear mandate of the ADAAA, chiatric disabilities is (presumptively) ille- or, more likely, to find new ways to limit gal.6 Imagine a lawyer who says he recently enforcement. I hope to contribute to our hired a new secretary with an impressive understanding of those negative attitudes by resume, even though she seemed “crazy,” identifying a number of ways that they inter- because the law says he cannot discrimi- sect with these recent changes to the law. 44 | ELIZABETH F. EMENS

From an international perspective, this amendments, the definition of “disability” is also an auspicious moment to focus was as follows: on attitudes to disability, in the wake of President Obama’s signing of the UN (A) a physical or mental impairment that Convention on the Rights of Persons with substantially limits one or more of the Disabilities (CRPD). The CRPD contains major life activities of such individual; an “Awareness-raising” article explicitly (B) a record of such an impairment; or requiring states’ parties to promote more (C) being regarded as having such an im- positive attitudes toward disability (ibid., pairment (ibid. §12102(2)). art. 8). Whether and how states implement this directive will depend in part on their This language was lifted from a previous appreciation of the crucial role attitudes law—the Rehabilitation Act of 1973—which play in the creation and implementation of had not been interpreted restrictively up disability law. At this critical juncture, this until 1990. The ADA’s proponents there- essay examines U.S. disability law to help fore had little reason to think these defini- enrich our understanding of attitudes to tional prongs would later be interpreted as disability in the U.S. context and, I hope, narrowly as they were. beyond. When courts began hearing ADA cases, however, they interpreted this definition of disability strictly in (at least) five ways. First, INTRODUCING THE ADAAA in Toyota v. Williams (2002), the Supreme It is the intent of Congress that the primary Court expressly required the plaintiff to object of attention in cases brought under the meet a “demanding standard” of “disabil- ADA should be whether entities covered under ity.” Second, consistent with this, courts the ADA have complied with their obligations interpreted “substantially limiting” restric- . . . [rather than] whether an individual’s tively: plaintiffs had to show that they were impairment is a disability under the ADA. really really limited in a major life activity —ADA Amendments Act of 2008 to count as disabled. This approach led to notorious losses for plaintiffs, such as the The ADA Amendments Act (ADAAA) plaintiff whose cancer was posthumously expressly aims to “carry out the ADA’s declared not limiting enough (Long 2008, objectives . . . by reinstating a broad scope 218). Third, the Supreme Court held in of protection” (ADAAA § 12101(b)(1)). In Sutton v. United Air Lines, Inc. (1999) important ways, the statute has made a that since “substantially limited” is in the bold attempt to fulfill this aim; in other present tense, plaintiffs who have miti- ways, however, the ADAAA compromises gated their disabilities must be considered the boldest structural aspect of the statute, in their mitigated state. This excludes any- fundamentally altering its idea of disabil- one who has successfully mitigated her ity and of discrimination. First, let’s revisit disability, such as someone whose con- the relevant aspects of the ADA, how the tact lenses correct her vision (as with the courts narrowed its protection, and how plaintiffs in Sutton) or whose psychiatric the ADAAA intends to intervene.9 medication or prosthesis are fully effective. The ADA protects against discrimi- Fourth, courts applied a restrictive view of nation on the basis of “disability,” so in what counted as a “major life activity.” For order to bring a claim, the plaintiff must example, activities were typically deemed first qualify as having a “disability.” (ADA not “major” enough if they were not “of § 12112(a)). Under the ADA, before the central importance to most people’s daily DISABLING ATTITUDES: U.S. DISABILITY LAW AND THE ADA AMENDMENTS ACT | 45 lives” (Toyota). Fifth, courts interpreted ing “an actual or expected duration of 6 the “regarded-as” prong of the definition months or less”) (ibid. § 12102(3)(B)). restrictively, in a variety of ways. Most Though these changes are not compre- notably, they required plaintiffs to prove hensive, they are ambitious. But courts may not only the impairment the employer nonetheless find new ways to undermine regarded them as having, but also precisely the scope of the statute’s protections, per- which major life activity the employer haps by again interpreting “substantially regarded them as substantially limited in. limits” somewhat narrowly, in the absence For instance, to show she was regarded of a statutory definition for the term. How- as disabled, a plaintiff with mild arthritis ever, this approach would directly con- would have to persuade a court not only travene the ADAAA’s express rejection of that her employer thought she had arthri- a “demanding standard” for interpreting tis, but also that her employer thought her “substantially limits.” Alternatively, courts arthritis substantially limited her in some could raise the bar for proving that one has particular major life activity, such as walk- an “impairment,” potentially leading to a ing. Picture plaintiffs attempting to show highly medicalized inquiry. But these fur- that their employers were—lying awake ther attempts to classify who is in and who at night?—imagining exactly how their is out would fly in the face of the statute’s employees’ impairments limited them and explicit mandate to determine whether in what activities. An absurd demand. discrimination has occurred. The ADAAA addresses most of these As the statutory findings indicate, “it problems with the courts’ treatment of the is the intent of Congress that the primary definition of disability. The findings of the object of attention in cases brought under new law explicitly reject both the “demand- the ADA should be whether entities covered ing” standard and the highly restrictive under the ADA have complied with their interpretations of the “substantially lim- obligations . . . .[T]he question of whether ited” language (ADAAA § 12102(4)(E)). The an individual’s impairment is a disability statute expressly indicates that plaintiffs under the ADA should not demand exten- are to be considered without regard to sive analysis.” The ADAAA should therefore the ameliorating effects of any mitigating put pressure on courts to examine other measures (other than ordinary eye glasses parts of the statute beyond the definition or contact lenses) (ibid.). The ADAAA gives of disability: who is “otherwise qualified” “major life activity” a clearer and broader to do various jobs, what is “reasonable” scope, by providing an illustrative list, and accommodation, and what is an “undue by introducing “the operation of a major hardship” that exempts an employer from bodily function” (also with an illustrative providing a requested accommodation. In list) as another form of major life activity the course of addressing these questions, (ibid. § 12102(2)(A)). Perhaps most strik- those courts inclined to keep the scope of ingly, for the regarded-as prong, the stat- the statute limited may well interpret these ute completely removes the need to show provisions restrictively. any substantial limitation in a major life activity. Instead, the plaintiff need only show that she has been “subjected to an CARVING UP THE DEFINITION OF action prohibited under this Act because of DISABILITY: ABANDONING A RADI- an actual or perceived physical or mental CAL SOCIAL MODEL impairment” (that is not both minor and [A] physical or mental impairment that sub- transitory, defined in the statute as hav- stantially limits major life activities only as a 46 | ELIZABETH F. EMENS

result of the attitudes of others toward such While the ADAAA carves up the ADA’s impairment. old definition in ways that broaden the —EEOC, Regulations interpreting scope of the statute’s protection—a much- 10 “regarded as” disability needed development—unfortunately it also creates two distinct types of disability, each with different legal protections The ADAAA’s move towards a more expan- and remedies. The ADAAA largely leaves sive definition of “disability” seems to reflect the definition of disability as it was, but a social model—the idea that disability then it adds a qualifying phrase to the inheres in the interaction between impair- third prong, so that it reads as follows: “(C) ment and the surrounding social world, being regarded as having such an impair- rather than being an individual medical ment (as described in paragraph (3))” (ibid. problem.11 The more expansive definition § 12102(1)(C)). The paragraph referenced should shift the emphasis from just how lim- goes on to explain, as I noted above, that ited the individual with a disability is (a med- the regarded-as prong now requires less ical model), to what happened (discrimina- than before: a plaintiff counts as regarded- tion?) or what should happen (accommoda- as having a disability if she was subjected tion?) in interaction with the disability. to an action prohibited under this statute In a crucial way, however, the ADAAA “because of an actual or perceived physi- moves away from the social model. One cal or mental impairment whether or not of the ADA’s boldest features was its equal the impairment limits or is perceived to treatment of actual disability and regarded- limit a major life activity.” So far, so good: as disability. The ADAAA, by contrast, sep- plaintiffs no longer have to jump through arates actual and regarded-as into two dif- hoops to prove they are regarded-as having ferent groups, which are expressly entitled a disability. to different remedies. The problem in the ADAAA comes with Recall the ADA’s definition of disabil- the later introduction of an exception to ity quoted above. All three of the prongs the contexts in which plaintiffs are entitled counted equally as having a “disability.” In to accommodations: principle, those who fell under the statute by virtue of actually having an impairment (h) REASONABLE ACCOMMODATIONS AND MODIFICATIONS.—A covered entity that substantially limited them in a major . . . need not provide a reasonable accom- life activity, and those who fell under it modation or a reasonable modification to by virtue of being regarded as such, had policies, practices, or procedures to an indi- the same claim to protection, including vidual who meets the definition of disability accommodation, under the ADA. (As I shall in section 3(1) solely under subparagraph (C) discuss in a moment, courts worked hard of such section. to say otherwise, but nothing in the statute supported their position.) In other words, plaintiffs who are only Placing actually disabled and regarded- regarded-as disabled have no right to as disabled under a single rubric affirms accommodation. the social model of disability in a fairly Why should an employer accommo- radical way. It says explicitly that others’ date someone who is only regarded-as perceptions of an impairment can be just disabled? Some people may find this as meaningful and real as an otherwise- idea absurd—as did some courts. How- limiting impairment, and consequently ever, if one accepts a social model of dis- just as deserving of accommodation.12 ability, then an employer’s regarding the DISABLING ATTITUDES: U.S. DISABILITY LAW AND THE ADA AMENDMENTS ACT | 47 employee as “substantially limited” in a lessen this problem, although it will not major life activity could warrant accom- eliminate it. modation. For example, someone might Third, sometimes other people’s atti- have a limiting impairment but not count tudes make a condition disabling. Facial as substantially limited enough to qualify scarring or a missing front tooth might for ADA protection. In such a case, the fact provoke adverse reactions from others. that the employer regards the person as Although neither condition creates any substantially limited enough would reason- actual functional limitations, others’ reac- ably entitle the person to whatever accom- tions could make working or interacting modations might help him do his job bet- with some others difficult. An accommo- ter. Such cases should, however, become dation in this case could involve less inter- less frequent under the ADAAA, because it action with customers, or a non-commis- broadens protection for the “actually disa- sion-based sales job instead of one based bled” prong. on sales commission. Of course, care Or, one can imagine a plaintiff who is should be taken to avoid segregating or both actually disabled, and also regarded- stigmatizing the affected individual. as disabled, and who would prefer to make But all of these scenarios are irrelevant a claim under the regarded-as prong. As under the ADAAA, because regarded-as various scholars have pointed out, the ADA plaintiffs no longer have any statutory puts plaintiffs in a bind: they must prove right to accommodation. They are in their both that they are substantially limited own category, distinct from the real disa- enough to count as disabled and that they bled, and with a limited set of rights and are nonetheless capable enough to be “oth- remedies. Indeed, the interpretive regula- erwise qualified” to perform the essential tions recently issued by the EEOC explic- functions of the job, with or without rea- itly distinguish between “actual disability” sonable accommodation. and “regarded-as disability,” although they To count as actually disabled under the accompany these terms with a disclaimer ADA, plaintiffs had to prove to the court just that these terms are for “ease of reference how limited they really are. Some plaintiffs only.”14 The statute itself does not employ would surely find this requirement unap- these terms, and both types still fall equally pealing: what does it mean to perform under the definition of “disability.” But the one’s limitations in court? We might think difference in remedies suggests to me a dif- here, by analogy, of the critic Stephen ference in the underlying categories. Even Greenblatt’s story about refusing a fellow if there are few practical consequences, at airplane passenger’s request to mouth the a structural level, distinguishing between words “I want to die”; Greenblatt felt it was the two categories is a jarring step back too dangerous to form those words, even from the more radical social model. as a brief favor to a stranger, because he was so keenly aware of the ways our performances become us.13 It is easy to see DISTINGUISHING how a plaintiff might prefer to prove that ACCOMMODATION FROM someone else thought he was substantially ANTIDISCRIMINATION limited, yet refused to accommodate his [T]he normal definition of discrimination— (perceived) limitation, instead of going to differential treatment of similarly situated great lengths to prove just how limited he groups. really is. Hopefully, the expanded protec- —Justice Kennedy, Olmstead v. tion of the actual-disability prong will also Zimring (1999) 48 | ELIZABETH F. EMENS

The ADA defines “discriminate” to “include crucial cases, Olmstead v. Zimring (1999) . . . not making reasonable accommoda- and Bd. of Trustees of the Univ. of Ala- tions to the known physical or mental bama v. Garrett (2000), handed down one limitations of an otherwise qualified year apart. The epigraph above from Olm- individual with a disability” (ADAAA, § stead—“the normal definition of discrimi- 12112(b)). A failure to accommodate is dis- nation [is] differential treatment of simi- crimination under the ADA. And yet, this larly situated groups”—captures his basic remains a contested issue. view of discrimination. By this definition, Is the ADA doing something really dif- it does not include the failure to accommo- ferent from the rest (or the heart) of anti- date, something he makes clear in these discrimination law, or is it doing some- decisions, as he contrasts that with some of thing fundamentally similar? Much schol- the newfangled concepts in this arena. In arly energy has been spent debating this Garrett, Kennedy grapples with the chang- question (Jolls, 2001; Stein, 2004; Wax, ing times. Here is what he tells us about 2003; Karlan & Rutherglen, 1996). In my evolving concepts of “prejudice”: view, a final resolution to this debate is unlikely, because ultimately it seems that Prejudice, we are beginning to understand, both sides have some merit. On the one rises not from malice or hostile animus hand, core U.S. antidiscrimination stat- alone. It may result as well from insensitivity caused by simple want of careful, rational utes covering classifications like race and reflection or from some instinctive mecha- sex—such as Title VII of the Civil Rights nism to guard against people who appear to Act of 1964—involve costs to the employer be different in some respects from ourselves. and changes to policies and practices that Quite apart from any historical documenta- operate like accommodation. For instance, tion, knowledge of our own human instincts prohibiting discrimination in hiring may teaches that persons who find it difficult to hurt the employer’s bottom line, if custom- perform routine functions by reason of some ers prefer their pizza delivery people to be mental or physical impairment might at first white or their flight attendants to be men. seem unsettling to us, unless we are guided Putting in women’s restrooms in a for- by the better angels of our nature. There can merly all-male workplace may cost money. be little doubt, then, that persons with mental or physical impairments are confronted Similar to the ADA, then, Title VII requires with prejudice which can stem from indiffer- employers to absorb costs and make struc- ence or insecurity as well as from malicious tural changes. On the other hand, the ADA ill will. obliges employers to respond to individual (ibid., 375) requests by employees to change their practices, requiring a different kind of interac- In short, traditional prejudice arises from tion between employer and employee. malice or hostile animus, as opposed to With its two different meanings of “dis- other more natural emotions and behav- criminate”—one for actually disabled plain- iors—“instinctive mechanisms”—that may tiffs and another for regarded-as disabled lead us to behave in ways that “the better plaintiffs—the ADAAA has further compli- angels of our nature” would discourage. cated the relationship between discrimina- “Our” nature, Kennedy tells us, is to be tion and the failure to accommodate. “unsettled” by people with disabilities. Justice Kennedy makes clear his view But law can help: “One of the undoubted that the ADA is doing something different achievements of statutes designed to assist than previous antidiscrimination legisla- those with impairments is that citizens tion, in his concurring opinions in two have an incentive, flowing from a legal DISABLING ATTITUDES: U.S. DISABILITY LAW AND THE ADA AMENDMENTS ACT | 49 duty, to develop a better understanding, by our “better angels” and contrary to our a more decent perspective, for accepting “human instincts.” With disability, we are persons with impairments or disabilities not talking about the kind of bad actions into the larger society” (ibid.). The ADA is for which we (should) reserve the word a good thing, Kennedy says, because it will “discrimination.” get us “citizens” to accept those “persons And now that hierarchy of types of prej- with impairments or disabilities” into our udice is reproduced within disability law, society. with the ADAAA’s statutory distinction This is apparently a reason to praise the between the actually-disabled people who ADA—as “a milestone on the path to a more have one definition of discrimination— decent, tolerant, progressive society”—but which includes the failure to accommo- it is not sufficient to make the law enforce- date—and the regarded-as disabled people able (ibid.). The forms of prejudice that who have another definition of discrimina- involve “the failure to act or the omission tion—which does not include the failure to remedy” just are not enough to enforce to accommodate. In this way, the ADAAA the law against the states: has conceded something to the accommodation-is-different camp. Although the It is a question of quite a different order, statute still formally includes actually disa- however, to say that the States in their official bled and regarded-as disabled within the capacities, the States as governmental enti- definition of disability, the legal entitle- ties, must be held in violation of the Consti- ments for each group are now substantially tution on the assumption that they embody different. the misconceived or malicious perceptions Some scholars offer a more optimistic of some of their citizens. It is a most serious charge to say a State has engaged in a pat- account of the ADAAA’s reconstruction of the tern or practice designed to deny its citizens regarded-as prong. For instance, one might the equal protection of the laws, particularly read the regarded-as prong as “signal[ing] where the accusation is based not on hos- long-awaited parity between the ADA and tility but instead on the failure to act or the other civil rights laws . . . [b]y defining ‘disa- omission to remedy . . . (ibid.) bility’ to include just about everyone on the continuum of impairments” (Barry 2010, Thus, Kennedy concludes, “[t]he failure of 278). Indeed, the regulations present the a State to revise policies now seen as incor- regarded-as prong as the first port of call for rect under a new understanding of proper plaintiffs who do not challenge a failure to policy does not always constitute the pur- accommodate.15 This new statutory struc- poseful and intentional action required to ture plainly incentivizes plaintiffs and their make out a violation of the Equal Protec- lawyers to bring suit under the regarded-as tion Clause” (ibid.). prong whenever possible. But will it also In this opinion, Kennedy makes clear his make lawyers less likely to take cases involv- view that our learning process about “prej- ing the more difficult, and now severable, udice” is as much a hierarchy of types of accommodation claims? prejudice as it is a progression over time to Presumably at least some plaintiffs’ law- greater understanding. With disability, we yers will attempt to cast what would have are not really talking about discrimination. previously been accommodation claims No, he seems to be saying, discrimination as antidiscrimination claims. This raises is the stuff of racism. With disability, we are an interesting conceptual and practical talking about the need for charity, perhaps, question: What will happen when courts or some other (Christian?) virtue typified confront claims of discrimination that lie 50 | ELIZABETH F. EMENS

on the border of “accommodation”? For enough” according to the ADA. The EEOC instance, is the failure to allow someone calls this the “group whose ‘coverage has with mild depression to arrive and leave been clarified’ under the ADAAA.”18 This early one day a week to attend therapy category could also be called bidisability a failure to accommodate or simple dis- (or “bi-ability,” as Ruth Colker would have crimination? What if the employer some- it (1996)). It lies in between disabled and times allows others to leave early for their nondisabled, and overlaps with both. children’s sporting events? This is a clas- There is no one right way to handle ques- sic selective-sympathy problem. Or con- tions of line drawing and differential treat- sider the problem of structural changes to ment across the spectrum of disability. the workplace: Is the failure to construct Sometimes it seems sensible to draw finely accessible restrooms for the first disabled honed distinctions between gradations of employees—or, in the example mentioned disability for legal purposes, while in other earlier, women’s rooms for the first female contexts it may be best to provide common employees—simple discrimination or does treatment for various degrees of disability. it fall in the special category of failure to Many of those who were bidisabled accommodate? These are just a few exam- under the ADA will presumably be absorbed ples of the kinds of dilemmas that straddle within the ADAAA’s broader disability defi- the line between antidiscrimination and nition. Bidisability does not (yet) appear to accommodation. I admit I am not optimis- have any sort of cultural identity—unlike tic that many courts will give a broad read- bisexual or biracial identity—but it is worth ing to discrimination that is statutorily dis- considering what functions this category tinguished from “mere” failure to accom- nonetheless might have served. I think that modate.16 On the contrary, this bifurcation under the ADA before the recent amend- of types of discrimination seems to dove- ments, the not-disabled-enough group tail with Justice Kennedy’s troubling view may have been providing a kind of buffer that while disability inspires some less- zone between nondisabled and disabled. than-ideal attitudes and actions from “us,” This buffer zone was comforting to some these new forms of discrimination against because it seemed to draw a line in the sand disabled people are not severe enough to between people who are disabled and peo- require legal action. ple who are not. Disability is a threatening category because, unlike a subordinated race or sex, anyone can fall into the category MOVING THE LINE: TURNING of disabled at any time. As various scholars BIDISABILITY INTO DISABILITY have written, the permeability of a subordinated group does not necessarily lead to Could we ask, about a concept . . . not so much empathy from outsiders; on the contrary, ‘What does it really mean?’ or ‘Who owns it and are they good or bad?’, but ‘What does the possibility of falling into a subordinated it do?’—what does it make happen?—what group can lead outsiders to fear group . . . does it make easier or harder for people of members and to distance themselves from various kinds to accomplish and think? the category (Yoshino, 2000; Emens, 2004). —Eve Kosofsky Sedgwick17 This is the idea behind, for example, homophobia: fear of the other in oneself makes one phobic of the other. Writing about dis- In principle, under the ADAAA, the cat- ability, Harlan Hahn has famously called egory of disability has expanded to include this the “existential anxiety” inspired by those who were previously “not disabled disabled others (Hahn 1988, 27–29). DISABLING ATTITUDES: U.S. DISABILITY LAW AND THE ADA AMENDMENTS ACT | 51

In-between categories can some- ened anxiety to a better appreciation of times provoke this kind of anxiety to an disability law as a social insurance policy even greater degree, because it is harder for everyone. to distance oneself from categories that share traits with both ends of a particular identity spectrum. Kenji Yoshino has, for CODIFYING ASYMMETRY instance, argued in this vein that bisexu- There is a tradition [of saying] . . . in the ality threatens both gays and straights, acknowledgements sections of academic because both groups are more comfort- books . . . that others, while they might have able thinking their positions are fixed and contributed to the successful aspects of the opposite (Yoshino 2000). The existence of project, are not to be held accountable for a bisexuality makes it much harder for peo- book’s “main defects[.]” From where I sit . . . ple to prove that they are simply straight this strikes me as a tradition worth inverting. or gay, because the fact of desire in one If there is anything disabled, queer, or crip direction does not disprove desire in the about this book, it has come from my collaborative work with those named above, and other direction (ibid.). many others. I take responsibility, however, Under this logic, one might think that for the moments when crip energies and ideas the old ADA’s highlighting of what I am are contained or diluted in what follows, and calling the bidisabled would increase exis- I know that others will continue to push the tential anxiety about disability. But rather work of this book, and the movements that than label them as “bidisabled,” the ADA made it possible, beyond those moments of classified them as “not disabled.” Anyone containment. who was not “severely restricted” by her —Robert McRuer (2006, p. xv) or his impairment was therefore “not disabled,” and the case dismissed. It happened so frequently under the ADA that I some- Title VII of the Civil Rights Act of 1964, is times thought, half seriously, that courts largely a “symmetrical” statute, in that it hoped their performative powers matched protects everyone on the basis of some those of the evangelical preacher’s “You axis of identity (such as race or sex). By can walk!”—curing the sick by declaring contrast, the ADA is an “asymmetrical” them healed. The net result was to create statute—it protects one group along a a large buffer zone of legally-designated particular axis and not others. The ADAAA “nondisabled” people who occupy the further entrenches this asymmetry, by space between the small group of “actu- explicitly prohibiting so-called reverse ally” disabled people, and “us.” discrimination claims: “(g) CLAIMS OF The ADAAA tries to eliminate, or at least NO DISABILITY.—Nothing in this Act shrink and shift, that buffer zone. It aims to shall provide the basis for a claim by an bring us closer to a world in which “[t]here individual without a disability that the is no ‘us’ and ‘them’” (Feldblum 2008, individual was subject to discrimination 228). If the ADAAA succeeds in folding because of the individual’s lack of disabil- many of the bidisabled into the legal cat- ity” (ADAAA § 12201(g)). egory of disability, then we might also see Why is this possible for the ADA, when heightened existential anxiety and associ- it is not for Title VII? An asymmetrical ated empathy failures. The question will be approach is based on an antisubordina- how to turn the attitudinal consequences tion model: it targets interventions to the of an expanded definition of “disability” in groups that have historically been subject a more favorable direction—from height- to systematic subordination. By contrast, 52 | ELIZABETH F. EMENS

an antidifferentiation approach looks 2002). So long as no one is rushing to claim skeptically upon any use of the protected “nondisabled” as a primary identity, deny- classification, even if that aim is to rectify ing claims on the basis of this identity does that history of discrimination. For example, not appear to violate any aspect of some- a university admissions policy based on an one’s being. antisubordination model might include Second, disability is still so widely affirmative action measures for groups regarded as an inferior status that giving who historically lacked access to educa- something to this group that no one else tional opportunities based on race or sex. gets can go largely unchallenged. A non- One based on antidifferentiation would, disabled person who tried to claim the by contrast, be more likely to bill itself as benefits of a statute designed for people “colorblind” or “sexblind.” Many scholars with disabilities would likely face some (and more than one Supreme Court jus- stigma or opprobrium. True, some people tice) have argued that an antisubordina- complain that parents seek diagnoses to tion model for antidiscrimination efforts get goodies for their children in the educa- would be more sensible for race and sex. tional context (Kelman & Lester 1997), but So how do we have an explicit antisubordi- even if this is true for parents, persistent nation model for disability and not for race stigma probably hinders similar efforts by and sex? adults on their own behalf. Most obviously, there is no constitu- Third, and relatedly, disability is so tional impediment to an asymmetrical deeply associated with inferiority that the statute in the disability context. For bet- specter of an insurrection—in which the ter and worse, disability does not have the subordinate group takes over and starts constitutional problem presented by race running the farm—is beyond most peo- and sex, both of which are subject to rig- ple’s wildest imaginings.19 orous constitutional scrutiny (so-called The easy prohibition on reverse dis- heightened scrutiny), which the Court has crimination claims in the ADAAA high- applied (nearly) symmetrically to more lights other manifestations of these reso- and less powerful groups in the context lutely negative attitudes to disability. For of, most notably, race. But why would this instance, corporate and academic “diver- explicit anti-reverse-discrimination provi- sity” initiatives regularly seek applicants sion in the ADAAA not raise hackles or even on the basis of race or sex; rarely do they get any publicity? Why is no one worried include “disability” as a sought-after about, for example, the non-deaf person category. Some recent work makes the denied a job at a Deaf institution? so-called business case for hiring disabled I think the answer lies in the highly neg- workers and advertising to people with dis- ative social status of disability, in at least abilities (Riley II 2006), and some schol- three ways. First, nondisabled is not yet an ars have described potential third-party identity category. What is the opposite of benefits to the workplace and to society of “disabled”? Justice Kennedy calls it “us,” accommodations requested by individual or “citizens.” Men and whites, although disabled people (Stein 2003; Emens 2008). they have historically been the norm, or But however obvious they may be to dis- the comparator against which others were ability “insiders,” the broader benefits of marked as “different,” today can claim a disability and accommodation are still typ- sex and a race, respectively. By contrast, ically overlooked, including by courts. I doubt many nondisabled people think People who run diversity initiatives of themselves as “nondisabled” (Bérubé are (anecdotally) uncomfortable and DISABLING ATTITUDES: U.S. DISABILITY LAW AND THE ADA AMENDMENTS ACT | 53 awkward when asked why they have omit- tial sites were organized around people’s ted disability. There is sometimes a gen- interests in different topics, such as the eral reluctance to focus affirmative action environment or music. The African-Amer- efforts on anything other than race—a ican House was somewhat controversial, concern that bringing in other groups but it was framed around a focus on Afri- waters down the attention that needs to be can-American history, which opened it up bestowed on race. But even where diversity to people who were not themselves Afri- initiatives go further than race, they usually can-American, although most residents skip disability. were. The student posited the possibility Lennard Davis has recently argued that of a “Disability House,” and immediately the era of the normal is over, and diversity concluded that such a house would be is the new normal, except for disability. As even more controversial than the Afri- a culture, he says, we celebrate diversity, can-American House, though she was not until it comes to impairment. There, we entirely sure why. still cling to a medical model; we equate I think the reaction the student antici- difference with inferiority. (Davis 2011). I pated to a Disability House—and the am skeptical that our cultural affinity for absence of Disability Houses on college normality is ending—few people, I imag- campuses—reflects the same attitudes that ine, would consider it a compliment to be lead to the neglect of disability in diversity called “weird.” But I agree with Davis that initiatives, and to the ADAAA’s easy inclu- a thin conception of diversity circulates in sion of a ban on reverse discrimination the contemporary United States as part suits. Disability is rarely understood as a of an affirmative vision of identity and positive state or identity with social or cul- humanity, and I agree that that affirmative tural benefits to its bearers or those around vision largely excludes disability. them. This negative perception ignores the A diversity rationale for integration idea of crip culture and the recent explo- affirms difference. In contrast to our stand- sion of disability-related arts. The era of ard antisubordination story of integration, widespread institutionalization of people which focuses on the harms to certain groups with physical as well as mental disabilities of historical exclusion and denigration, a is far too recent to conceive of a house for diversity story focuses on the future gains to people with disabilities as anything other society of the rich cultural contributions of than the product of exclusion or even those with varied identities. Although a lively warehousing.21 (And as another student debate surrounds the diversity rationale, rightly pointed out, “disability houses” my aim here is not to argue for (or against) inadvertently materialize all the time, on a diversity agenda. Instead, I’d like to exam- campuses and elsewhere, when only one ine what disability’s relative absence from building or part of an institution is accessi- that agenda means for contemporary U.S. ble.) But a Disability House sounds disturb- conceptions of disability. ing not only for its historical associations. At a talk I gave recently, a student Rather, the Disability House is inconceiv- raised an example that helps to illustrate able because mainstream culture is ill- disability’s position in relation to diversity equipped to see disability (as opposed to thinking.20 The student had apparently African-American history) as an issue that not thought much about disability in the people with disabilities—much less people past, but our discussion that day made without disabilities—could affirmatively her think about the cultural houses at her seek out and celebrate. undergraduate college. These residen- U.S. law on integration in the context 54 | ELIZABETH F. EMENS

of “special education” and of community- CONCLUSION based living for people with mental every built thing has its unmeant purpose . . . disabilities reflects and reinforces this Every built thing with its unmeant negative conception of disability. Statutes meaning unmet purpose and cases in these areas explicitly meas- every unbuilt thing ure success by the extent to which people —Adrienne Rich, “Powers of Recuperation” with disabilities are interacting with people without disabilities: the more contact, the better.22 There are some important his- When I heard Adrienne Rich read these torical reasons for this focus, but the legal lines in October of 2007, I was finishing an language makes the troubling assumption article on the unintended benefits of work- that interacting with nondisabled people place accommodations under the ADA. is an unqualified good. Imagine a simi- “Unmeant purpose” resonated deeply with lar discussion about racial integration, in my sense of benefits developed for one use which one environment was repeatedly and exapted to another (Emens 2008). The and explicitly deemed superior because built world was my frequent focus in that of how much contact it offered with white article, in fact and metaphor. people. (Of course, past racial integra- These lines now reach further. The tion efforts and decisions have effectively “unmet purpose” of the ADA has been my implied exactly that.) subject here; indeed, it is the subject of the Once one considers the possibility that ADAAA. Metaphors of the built environ- people, disabled or nondisabled, could be ment circulate always in discussions of the drawn to disability—for community, cul- ADA, both challenging and constraining ture, or concepts—the biases at the heart our thinking about disability. And in this of the integration discussion are thrown Essay the broader benefits at issue extend into sharp relief. These discussions, in beyond the workplace and beyond accom- the disability context, are not framed even modations. Our inquiry now reaches superficially in reciprocal terms. There is towards the benefits of disability per se, no consideration of what nondisabled and for diversity efforts or antidiscrimination disabled offer each other, as equals. Rather, concepts, through the possibility of shift- benefits are almost always seen as traveling ing attitudes. What lies ahead, in law and one way—from nondisabled to disabled. theory, is only every unbuilt thing. In this light, why would voluntary efforts to diversify an institution incorporate dis- NOTES ability? Why would an institution choose to seek out people who would bring costs and 1. The essay included here is a condensed version no benefits? And how could a university of an earlier article. See Elizabeth F. Emens, have a Disability House that students— Disabling Attitudes, 60 Amer. J. of Comparative L. 205 (2012). As part of the condensing, I have disabled and even nondisabled—would omitted the acknowledgements and much of choose to join? They wouldn’t. Accord- the citation material; interested readers might ing to this narrative, no one would seek consult the earlier article. For excellent editorial to affiliate with this group, so eliminating assistance with the preparation of this version the possibility of lawsuits brought by non- of the article, I thank Laura Mergenthal and Anna Louie Sussman. For useful conversations disabled people alleging discrimination for and comments on earlier drafts, I thank Rachel not being disabled raises no hackles, and Adams, Samuel Bagenstos, Kevin Barry, Noa passes into law unnoticed. Ben-Asher, Daniela Caruso, Chai Feldblum, DISABLING ATTITUDES: U.S. DISABILITY LAW AND THE ADA AMENDMENTS ACT | 55

Katherine Franke, Michael Kavey, Sarah the Politics of (Disability) Civil Rights, 89 Va. L. Lawsky, Laura Mergenthal, Michael Rembis, Rev. 825, 843–44 & n.55 (2003). Charles Sabel, Michael Stein, Kimberly Walters, 9. For more comprehensive treatments, see, for and participants in the Evolutions in Anti- example, Kevin Barry, Toward Universalism: Discrimination Law in Europe and North What the ADA Amendments Act Can and Can’t America at Harvard Law School, the Columbia Do for Disability Rights, 31 Berkeley J. Emp. & Law Women’s Association Workshop, and my Lab. L. 203 (2010); Alex B. Long, Introducing the Disability Law class in the Spring of 2011. New and Improved Americans with Disabilities 2. For more sustained treatment of the ADA’s Act: Assessing the ADA Amendments Act of 2008, passage, see, for example, Joseph Shapiro, 103 Nw. U. L. Rev. Colloquy 217 (2008). No Pity 118–19 (1993); Samuel R. Bagenstos, 10. 29 CFR § 1630.2(l)(2). The Americans with Disabilities Act as Welfare 11. For useful critical perspectives on the social Reform, 44 Wm. & Mary L. Rev. 921 (2003); model, see, for example, Tom Shakespeare, Samuel Bagenstos, Law & the Contradictions of Disability Rights and Wrongs 29, 29–53 (2006); the Disability Rights Movement (2009). Vlad Perju, Impairment, Discrimination, and the 3. The language in the original statute arguably Legal Construction of Disability in the European opened itself up to that narrowing, which the Union and the United States, 44 Cornell Int’l L.J. drafters of the ADA did not recognize because 279 (2011). the same definition in an earlier statute had not 12. Protecting perceived-as discrimination is not been interpreted narrowly—or received much unique, however; the UK’s Equality Act of 2010 is scrutiny—from courts. See Feldblum 2000 at an example of a jurisdiction that offers protection 91–92, 113. to those perceived to have a protected trait. 4. See, e.g., Lytes v. DC Water and Sewer Authority, 13. The other passenger was going to visit an ailing 572 F.3d 936 (D.C. Cir. 2009). Cf. Jenkins v. relative, and so wanted to make sure that he knew National Bd. of Med. Examiners, 2009 WL 331638 what it would look like for a person to mouth (6th Cir. Feb. 11, 2009) (applying the ADAAA to those words. See Stephen Greenblatt, Epilogue, a case filed before the ADAAA went into effect Renaissance Self-Fashioning 255–56 (1983) (“I felt because the relief sought was injunctive). superstitiously that if I mimed the man’s terrible 5. Cf. Mary Johnson, Make Them Go Away: Clint sentence, it would have the force, as it were, of a Eastwood, Christopher Reeve & the Case Against legal sentence . . . . I was aware, in a manner more Disability Rights (2003). forceful than anything my academic research had 6. I say presumptively because there are defenses, brought home to me, of the extent to which my such as someone’s inability to perform the identity and the words I utter coincide, the extent essential functions of her job, or her posing a to which I want to form my own sentences or to direct threat to others in the workplace—the choose for myself those moments in which I will same defenses available for other disabilities. recite someone else’s.”). 7. For a critique of some ways of reading Scarry, see 14. See 76 Fed. Reg. 16980 (Mar. 25, 2011). Tobin Siebers, Disability, Pain, and the Politics of 15. 76 Fed. Reg. 16978. Minority Identity (unpublished manuscript, on 16. One approach courts may take to reading file with author, October 2011) (“Pain does not “discriminate” narrowly is to insist that plaintiffs spring from and differentiate the individual. It identify “comparators” in order to prove that that does not belong to one person alone. It is a social the employer “discriminated” (in the statute’s invention, external to people, that marks them as newly narrower meaning of that term) rather individual. The dominant social representation than failed to accommodate. For the definitive of pain in the West is the individual alone in pain treatment of the comparator methodology, and . . . . What would it mean to conceive of pain a discussion of its problems, see Suzanne B. not as an individual or personal emotion—as a Goldberg, Discrimination by Comparison, 120 feeling owned by one person—but as a socially Yale L.J. 728 (2011). mediated identity, as a product of social forces 17. See Clare Hemmings, Bisexual Theoretical operating external to individuals?”). Perspectives: Emergent and Contingent 8. There is an extensive literature on the so-called Relationships, in Bi Academic Intervention, The contact hypothesis, the idea that working side by Bisexual Imaginary: Representation, Identity side in cooperative ventures can reduce animus & Desire 1, 16 (1997) (quoting Eve Kosofsky and stereotyping. For a discussion in the disability Sedgwick, ‘Bi’, Queer Studies list, QSTUDY-L@ context, see, for example, Samuel R. Bagenstos, UBVM.cc.buffalo.edu, Aug. 17, 1994: 15:49:34– “Rational Discrimination,” Accommodation, and 0400) (emphases removed). 56 | ELIZABETH F. EMENS

18. 76 Fed. Reg. 16987 n.3. Convention on the Rights of Persons with Disabilities, 19. A counter example would be Rosemarie Garland- G.A. Res. 61/106, art. 8 (2007). Thomson’s reading of Kazuo Ishiguro’s Never Let Davis, Lennard. “The End of Normal: Multiculturalism, Me Go, and particularly the film adaptation, as Disability & Diversity.” The Ethics of Disability dramatizing an anxiety about a world upside down Studies Speaker Series, put on by the Columbia in which people with disabilities use nondisabled University Department of English & Comparative people for their own grotesque purposes. Literature, the Center for the Critical Analysis of Rosemarie Garland-Thomson, “Habitable Social Difference, the Graduate School of Arts & Worlds: Eugenic Spaces and Democratic Spaces,” Sciences, and the Center for American Studies The Ethics of Disability Studies Lecture Series, (Apr. 1, 2011). Columbia University (Feb 25, 2011). Emens, Elizabeth F. “Integrating Accommodation.” 20. Discussion with the Columbia Law Women’s University of Pennsylvania Law Review 156 (2008): Association of Elizabeth F. Emens, Intimate 839–922. Discrimination: The State’s Role in the Accidents of Emens, Elizabeth F. “Monogamy’s Law: Compulsory Love, 122 Harv. L. Rev. 1307 (2009), (Mar. 23, 2011). Monogamy and Polyamorous Existence.” New 21. One might say that the problem with Disability York University Review of Law and Social Change House is that disabilities are so diverse; they are 29 (2004): 277. indeed diverse, but a Blind House seems just as Feldblum, Chai R., Kevin Barry, and Emily A. Benfer. likely to raise these concerns. “The ADA Amendments Act of 2008.” Texas 22. See, e.g., Individuals with Disabilities Education Journal on Civil Liberties and Civil Rights 13 Act (IDEA), 84 Stat. 175, as amended, 20 U.S.C. (2008): 187–240. § 1412(a)(5) (requiring that participating states Feldblum, Chai R., “Definition of Disability establish “procedures to assure that[,] . . . [t]o Under Federal Anti-Discrimination Law: What the maximum extent appropriate, children with Happened? Why? And What Can We Do About It?” disabilities . . . are educated with children who Berkeley Journal of Employment and Labor Law 21 are not disabled”); Disability Advocates, Inc. v. (2000): 91–165. Paterson, 653 F.Supp.2d 184, 208 (E.D.N.Y. 2009) Goffman, Erving. Stigma. New York: Simon & Schuster, (saying repeatedly, in a judgment that adult 1963. homes run by the state of New York violate the Hahn, Harlan. “The Politics of Physical Differences: integration mandate of Title II of the ADA and Disability and Discrimination,” Journal of Social Olmstead, that these “Adult Homes limit the Issues 44(1) (1988): 39–47. development of relationships with people who Jolls, Christine. “Antidiscrimination and Accom- do not have disabilities”). modation.” Harvard Law Review 115 (2001): 642. Karlan, Pamela S. and George Rutherglen. WORKS CITED “Disabilities, Discrimination, and Reasonable Accommodation.” Duke Law Journal 46 (1996): 1. Anderson, Jill. “Just Semantics: The Lost Readings Kelman, Mark and Gillian Lester. Jumping the Queue. of the Americans with Disabilities Act.” Yale Law Cambridge: Harvard University Press, 1997. Journal 117 (2008): 992. Long, Alex B., “Introducing the New and Improved Americans with Disabilities Act of 1990, Pub. L. No. Americans with Disabilities Act: Assessing the 101–336, 104 Stat. 327 (1990). ADA Amendments Act of 2008,” Northwestern Americans with Disabilities Amendments Act of 2008, University Law Review Colloquy 103 (2008): Pub. L. No. 110–325, 122 Stat. 3553 (2008) (codified 217. at 42 U.S.C. § 12101 et seq.). McRuer, Robert. Crip Theory: Cultural Signs of Barry, Kevin. “Toward Universalism: What the ADA Queerness and Disability. New York: New York Amendments Act Can and Can’t Do for Disability University Press, 2006. Rights.” Berkeley Journal of Employment and Olmstead v. Zimring, 527 U.S. 581, 614 (1999) Labor Law 31 (2010): 278. (Kennedy, J., concurring). Bérubé, Michael. “Afterword: If I Should Live So Long,” Adrienne Rich, Powers of Recuperation, 8 A Public in Disability Studies: Enabling the Humanities, Space (2007), available at http://www.apublicspace. edited by Sharon L. Snyder et al., 337. New York: org/poetry/powers_of_recuperation.html. Modern Language Association of America, 2002. Riley, Charles A. Disability and Business: Best Practices Bd. of Trustees of the Univ. of Alabama v. Garrett, 531 and Strategies for Inclusion. Hanover: University U.S. 356, 375 (2000) (Kennedy, J., concurring). Press of New England, 2006. Colker, Ruth. Hybrid. New York: New York University Scarry, Elaine. The Body in Pain. Oxford: Oxford Press, 1996. University Press, 1985. DISABLING ATTITUDES: U.S. DISABILITY LAW AND THE ADA AMENDMENTS ACT | 57

Stein, Michael Ashley. “The Law and Economics of U.S. National Archives and Records Administration. Disability Accommodations.” Duke Law Journal Code of Federal Regulations. Title 29. Regulations 53 (2003): 79. Relating to Labor, 2011. Stein, Michael Ashley. “Same Struggle, Difference Wax, Amy L. “Disability, Reciprocity, and ‘Real Difference: ADA Accommodations as Anti- Efficiency’: A Unified Approach.” William and discrimination.” University of Pennsylvania Law Mary Law Review 44 (2003): 1421. Review 153 (2004): 579. Yoshino, Kenji. “The Epistemic Contract of Sutton v. United Air Lines, Inc., 527 U.S. 471 (1999). Bisexual Erasure.” Stanford Law Review 52 (2000): Toyota Motor Mfg., Ky. v. Williams, 534 U.S. 184 (2002). 353. PART II

The Politics of Disability CHAPTER 5

Disabling Postcolonialism: Global Disability Cultures and Democratic Criticism Clare Barker and Stuart Murray

As scholars working in both Disability is not especially perceptive in its articula- Studies and Postcolonial Studies, we are tion of global dynamics and there is much mindful of a number of concerns that arise work to be done, in both disciplines, to when we seek to bring together these two raise awareness and refine research meth- fields. The first is our desire to explore the ods. While, in the broadest terms, postco- intersections of our interests, and not to lonial criticism tends to treat disability as have to hold them at a distance from one prosthetic metaphor, Disability Studies another because of the arbitrary lines that problematically transports theories and divide disciplinary areas. Secondly, we methodologies developed within the west- are conscious of the fact that, put simply, ern academy to other global locations, pay- there has been little sustained analysis of ing only nominal attention to local forma- the representation of disability in postco- tions and understandings of disability. It is lonial literatures and cultures, nor of the these limitations that we want to address methodological or theoretical bases that here: our central aim is to foster productive the approaches might share.1 From an ini- exchanges and cross-fertilizations between tial standpoint, then, there are some basic the two research fields, addressing silences and foundational reasons to want to estab- that have existed for too long. lish a dialogue between the two fields. The It is clear to us that there are signifi- placement of disability as the active verb cant questions at stake when considering in our title, “Disabling Postcolonialism,” the multiple forces that come together reflects our feeling that Disability Studies when we talk of disabling postcolonial- has the potential to make a more urgent ism. The temptation to conceive of and intervention into contemporary Postco- express colonial processes and their con- lonial Studies than vice versa. As we will sequences—postcolonial resistance, anti- go on to delineate, Disability Studies has colonial nationalism, the development of already begun to look toward the impor- independent states—using metaphors of tant work of globalizing its outlook and disability is all too obvious. The idea that methodologies, whereas disability is still both disability and postcolonialism are, at almost completely absent from postcolo- heart, connected to questions of power is, nial theory and criticism, marking a sig- of course, not misplaced. But it is an error nificant exclusion in the field. Even so, as to subscribe to a reading of such notions a whole, contemporary Disability Studies that thinks predominantly of the power 62 | CLARE BARKER AND STUART MURRAY

relations involved here in terms of easy seeks to further freedom through asserting models of health, illness, absence, loss, and questioning knowledge in the proc- pathology, charity or victimhood, to name ess of establishing research methods. We just the most recognizable of such catego- remain convinced that the best end prod- ries. These assumptions and tropes fre- uct of such work can make a material dif- quently haunt the discussion of disability ference to people’s lives, and this convic- in postcolonial contexts, but we want to tion is the base for our thinking throughout argue that, in fact, the details within rep- what follows. resentations and narratives of postcolonial disability can also be understood to EDWARD SAID AND PARTICIPATORY reorient, in a fundamental fashion, our CITIZENSHIP understanding of such disability. We contend that it is in disability’s material loca- In terms of potential models that might tions, in all their cultural diversity, that we aid us in establishing the terms of a pro- find potential new forms through which to ductive association between postcolonial express disability experiences. and disability scholarship, we want to ini- In this article we outline, through a criti- tiate the discussion of such a link through cal investigation of the relevant arguments a consideration of the writings of Edward in each subject area, what we see as the Said. With its focus on the power differen- most significant theoretical contributions tial between communities in postcolonial to the disabling of postcolonialism to date. contexts, Said’s foundational work offers In addition, we seek to push the integra- itself as an instructive guide for all man- tion of the two fields further by articulat- ner of academic fields involved in similar ing exactly how we think Critical Disability endeavours. Within Disability Studies, both Studies needs to adapt its assumptions and Tom Shakespeare and Rod Michalko have methodologies to include and respond to used Said’s writings (on identity and exile postcolonial locations of disability. Here, respectively) to think through particular we identify a number of key terms and aspects of disability representations and approaches—situated analysis, cultural experiences, and his early and mid-career difference, environments of disability, work more generally displays the kinds and representational practices—which we of critique of power and representational believe have the capacity to undo the over- systems that illuminate similar processes rigid models and vocabularies through within disability scholarship. When, in a which Disability Studies can sometimes 1985 interview entitled “In the Shadow of function. In turn, we feel that an apprecia- the West,” Said noted that the “violence” of tion of disability, elaborated through these the “act of representing (and hence reduc- processes, gives greater detail to the under- ing) others, almost always involves violence standing of the ways in which postcolonial of some sort to the subject of the represen- cultural representations work. At the heart tation,” or when he asked “what can we do of our enquiry, as the second half of our title outside of this system [of representation] implies, is our sense that the integration of that enables us to treat it as a productive, these twin viewpoints can be aligned with rather than a natural process?” (2005: 40, what Edward Said describes as democratic 44), his observations chime with the semi- criticism. Our own interpretation of this nal work of those, such as David Mitch- term refers to a critical method that is sensi- ell, Sharon Snyder, Rosemarie Garland- tive to the particularities of disability as it is Thomson, and Lennard Davis, who have, experienced in postcolonial societies, and since the mid-1990s, sought to unpack the DISABLING POSTCOLONIALISM | 63 ways in which stories and images of people In my understanding of its relevance today, with disabilities have nearly always been humanism is not a way of consolidating and reductive. affirming what “we” have always known The classic Saidian process of critique, and felt, but rather a means of question- then, is easily aligned, at an appropri- ing, upsetting, and reformulating so much of what is presented to us as commodified, ate level of abstraction, with the kinds of packaged, uncontroversial, and uncritically work disability scholarship has come to codified certainties. practise. In addition, we feel that his late (28) work on humanism, especially in his 2004 text Humanism and Democratic Criticism Despite the problematic associations (his last completed book, written as Said between humanism and disability, then, himself experienced a significant and it is impossible not to see the potential disabling illness), contains perspectives of what Said says here for a progressive highly relevant to a discussion of disabil- method of critique. The processes of “ques- ity. As a postcolonial scholar choosing to tioning, upsetting, and reformulating” and stress the values of humanism, a mode of the attention given to “misreadings of and thinking deeply embedded within a Euro- misinterpretations of the collective past pean tradition, Said sought to outline a and present” mirror the variety of disability working critique that appears counter- movements and their attempts to demand intuitive but has, in fact, radical applica- a sense of “participatory citizenship” when tions in terms of global relations. Equally, validating disabled experiences. In addi- we would claim that his articulation of an tion, the example of the radical postco- idea of the “human,” a topic on which it lonial scholar championing what many is wise to be cautious given the history of would represent as a conservative set of humanism with regard to disability, offers ideas asserts what we recognize as the a provocative but potentially progressive against-the-grain logic of much of the best approach to the workings of disability disability writing. in culture. In particular, Said’s stress on So it is both the detail and the shape what he calls “participatory citizenship” of Said’s thinking that offer a productive provides an inclusive framework within guide for thinking through the connections which questions pertinent to both post- between postcolonial and disability schol- colonial and disabled identities can be arship. Bill Ashcroft and Pal Ahluwalia, explored. discussing Said’s late style, note that his For Said, giving detail on this, there is writing on humanism constitutes a desire “almost single-handedly to re-orient the no contradiction at all between the practice understanding of the term away from its of humanism and the practice of participa- deeply Eurocentric and elitist grounding tory citizenship. Humanism is not about to a worldly and multi-faceted considera- withdrawal and exclusion. Quite the reverse; its purpose is to make things more available tion of human activity” (2000: 145), and we to critical scrutiny as the product of human respond to this both as postcolonial schol- labor, human energies for emancipation ars recognizing the challenge to Eurocen- and enlightenment, and, just as importantly, tric thinking, and as disability scholars human misreadings of and misinterpreta- alive to the notion of “multi-faceted human tions of the collective past and present. activity.” Above all, we find in the possibili- (2004: 22) ties of a “participatory citizenship” ideas of democracy, agency and method; Said’s He goes on: thinking parallels the debates around 64 | CLARE BARKER AND STUART MURRAY

activist rights discourses and the issues of size local aspects of social application. In theorizing disability that are so apparent in Europe and the U.K. especially, such work contemporary writing in Disability Studies. has stressed the processes of law and gov- If the Viconian humanism that underpins ernance, with a resulting focus on such Said’s own conception of the term can, in issues as community-based social services. his words, tell us that “we can really know In the U.S., where a discourse- and human- only what we make or, to put it differently, ities-based model has played a greater part we can know things according to the way in the development of Disability Studies, it they were made” (2004: 11), then maybe has nevertheless been the case that Ameri- his own example of intellectual scrutiny can examples have predominated. In both and expression can also help us to think instances, there has been an understanding about what makes “us,” in terms of a com- that such models may well have application plex, inclusive humanity. in non-Euro-American contexts (claims for But, useful as they are, guiding frames the social model, for example, assert that still need specifics, and for all that the force it can adapt to the local variants of other of Said’s thinking might inspire ideas about cultures), but there has been a singular the connections between disability and the lack of specificity as to the detail of such postcolonial, it is clear that his valorization applications, especially as they might take of humanism will not work across the huge into account the nature of cultures shaped variety of global contexts in which disabil- by colonization and its consequences. It is ity is a social and cultural experience. These this question of applicability that concerns problems highlight once again the limits us here. In aiming to develop strategies for of grand theorizing that have bedevilled postcolonial disability analysis, we aspire Postcolonial Studies since the 1980s and toward future scholarship in which the doubtless will shadow the attempted devel- nuanced methods we find in much Euro- opment of Disability Studies as the subject American-focused disability criticism are seeks to expand beyond its traditional Euro- replicated in work on global disability. American base. Mark Sherry has warned of the dangers of abusing the “rhetorical con- QUESTIONING THE GLOBAL nections” that exist between disability and postcolonialism. “Neither disability nor Disability scholarship that has considered postcolonialism,” Sherry writes, “should the value of a revisionist global dimension be understood as simply a metaphor for has often asserted the potential of such the other experience; nor should they be work in terms of enquiries and questions. rhetorically employed as a symbol of the “What do we talk about when we talk about oppression involved in a completely dif- global bodies?” asks Robert McRuer in the ferent experience” (2007: 21). Following on Epilogue to Crip Theory: Cultural Signs from this, those practitioners of disability of Queerness and Disability (2006). His scholarship who have sought to place dis- answer, in part, is to recognize that such ability within a global or postcolonial con- talk involves movement beyond Euro- text, or have used the languages of iden- American subjects and methods, that the tity politics in a manner common to much process of globalizing disability might mark postcolonial writing, have often struggled a move toward the “extension or comple- with their accounts of the differing kinds of tion” of the project that seeks the widest “experiences” that Sherry highlights here. possible integration of disabled lives and The majority of disability scholarship experiences into majority cultures (201). has emerged from traditions that empha- At the same time, however, McRuer notes DISABLING POSTCOLONIALISM | 65 that this kind of thinking creates an idea of The conclusion to Cultural Locations of global bodies that “also comes with its dan- Disability moves towards thinking through gers,” observing that “[w]hen a field covers the issues of the location of Disability Stud- a larger terrain and purports to be about ies as a subject (its final mini-chapters are everything . . . there is always the danger on the institutionalization of Disability that trumping, transcending, and even Studies and the development of research colonizing will displace the more urgent practices, 194–203) and, while we find such work—especially urgent in these times—of a focus useful, it does not embrace the full coalition” (201–202), a point equally true potential that the term “cultural locations” of Postcolonial Studies of course. Overall, might suggest. McRuer’s ruminations on what the global Indeed, there is a real sense that the nature of Disability Studies might be open practice of globalizing disability, the imple- up a number of highly suggestive avenues— mentation of the suggestion as it were, a further complication of cosmopolitanism actually works to foreground the limits of and global neoliberal institutions, an idea current formations of the cultural model. of “disposable domesticity” (203)—that In reality, we find that asking the question invite future work. His intervention in Crip of how disability is figured in the global, Theory, though, is still best seen in terms of postcolonial history of the modern points such an invitation, an acknowledgement to the closed parameters of what we think that more needs to be done. we know, rather than opening the door to The same could be said of the cultural further scholarship; again, it is still all to be model of disability more generally, par- done, with the precise locations of cultures ticularly as it is expressed in the formative of disability still to be found. work of Sharon Snyder and David Mitch- Other practitioners of disability scholar- ell. In their Cultural Locations of Disability ship have entered the debate surrounding (2006), the very idea of “location” is one culture and representation in ways, and with obvious appeal to a postcolonial schol- with methodologies supplied by cognate arship aiming to highlight specific located disciplines, that should make their use in examples of disability in cultural contexts, any account of postcolonial disability rela- whether that is within colonial processes of tively transparent. This is especially the classification or post-independence rene- case with Ato Quayson, a noted postcolo- gotiations of citizenship. When Snyder nial scholar (on both the specific literatures and Mitchell claim that “[t]he definition of of West Africa and postcolonial culture and disability must incorporate both the outer criticism more widely)2 before his research and inner reaches of culture and experi- turned toward disability representation in ence as a combination of profoundly social Aesthetic Nervousness: Disability and the and biological forces,” we see—in the Crisis of Representation (2007). With its space given here to “culture and experi- focus on work by Wole Soyinka and J. M. ence”—the promise of a productive model Coetzee, among others, Aesthetic Nervous- allowing for the cultural difference of post- ness presents what might seem like a clear colonial disability to find its expression entry into a discussion of specific postcolo- (7). Yet, for all of the attractiveness of the nial disability narratives. To an extent, this shape of the thinking here, the work that is the case: Quayson notes, for example, might go on in any global cultural location that Soyinka’s “writing focuses . . . on a set of disability remains something gestured of ritual dispositions drawn from a tradi- towards, and “cultural locations” appears tional Yoruba and African cultural sensibil- more as a phrase than an actual paradigm. ity” and that “each of his plays may be read 66 | CLARE BARKER AND STUART MURRAY

as partial allegories of the Nigerian and no thought to the processes of globalization African postcolonial condition” (29). Yet or transnationalism and the production of our reading of Quayson’s study overall is minority identity politics that occur as a that it does not seek to make links between consequence of either past empires or the disability and postcoloniality at the level of global hegemonic power of current neo- cultural production. As is in fact obvious liberal formations, especially those of the from his title, Quayson’s focus is on ques- U.S. When he notes that “[d]isability stud- tions of aesthetics and form, and subse- ies has much to offer future discussions of quently on issues of ethics, and not on the minority identity and its politics” (95), the determining question of how postcolonial statement comes in the final paragraph of cultures per se represent disability. For all his chapter on the topic, and it is apparent that it does, Aesthetic Nervousness does not that, as with Mitchell and Snyder, Siebers’ offer us a model of how we might conceive work—though obviously sympathetic to the particular interplay of postcolonial cul- non-American accounts of disability—has tural history and the depiction of disabil- no real sense of what such instances might ity, whether individually experienced or entail. Most contemporary disability schol- socially constructed. arship is, it appears, all in favour of a situ- Despite his postcolonial credentials, ated theory and method that can articulate then, Quayson does not focus on the ques- the nature of global postcolonial disability, tions of cultural and personal identity and and is very much aware of the need for such representation that appear for many as work to complicate current models of how the central axes of any initial account of disability is experienced and represented, postcolonial disability. At the other end but it has no real idea of what these proc- of the spectrum is Tobin Siebers, whose esses might actually look like. commitment to identity politics is iterated We feel it is time to move beyond the throughout his disability work. “Identity gesturing toward a future in which non- politics,” he writes in the introduction to Euro-American disability stories, of all Disability Theory (2008), “remains in my kinds, might be understood. We believe view the most practical course of action by that detailed and situated analysis is the which to address social injustices against way to correct the conditional frame of minority peoples and to apply the new such gestures, and furthermore, to return ideas, narratives, and experiences discov- to McRuer’s question, that such a critical ered by them to the future of progressive, approach will enable us to think through democratic society” (15). This is language what is involved in a concentration on that has clear connections to the activist “global bodies.” In so doing, we would like roots of much disability scholarship; it is this article to build on what we see as the also a statement with a clear relevance to one recent intervention in disability schol- postcolonial contexts in which “injustices” arship that does engage with the specifics are countered in the name of “progressive” of globalized disability, namely Michael and “democratic” social and cultural for- Davidson’s notion of “the work of disabil- mations. For Siebers, the category of the ity in an age of globalization” (168) in Con- “minority”—whether “minority peoples,” certo for the Left Hand: Disability and the “minority identity” or “minority studies”— Defamiliar Body (2008). Like other schol- is essential to the optimism about what he ars, Davidson asks the pertinent ques- terms, in Disability Theory, the “future of tions—“[w]hat might a critical disability identity politics” (70–95). Yet, in his discus- studies perspective bring to the globaliza- sions of minorities, Siebers gives virtually tion debate?”—but he also offers a working DISABLING POSTCOLONIALISM | 67 through of some potential answers. Noting nization” of Disability Studies in the vein that disability “unsettles a global panacea advocated by Linda Tuhiwai Smith in her for health and human welfare,” he asserts important book Decolonizing Method- that it also “defamiliarizes the seemingly ologies: Research and Indigenous Peoples inexorable pattern of capital movement, (1999).3 information exchange, and market inte- Arif Dirlik’s controversial 2002 critique gration by which globalization is known” of postcolonial criticism up to that date (171, 169). Following this, Davidson’s demonstrated how, “focused on past lega- concentration on poverty and the distri- cies,” the field was in his opinion “largely bution of wealth, and his assertion of the oblivious to its own conditions of exist- need “to reevaluate some of the keywords ence and its relationship to contemporary of disability studies . . . from a comparative configurations of power.” Postcolonialism, cultural perspective” (172), gives detail (in he went on, “ignores the ways in which its his accounts of “development” themes in interpretation of the past may serve to pro- recent film, or narratives of international mote or, at the least, play into the hands of organ sales and transplants, for example) a globalized capitalism” (440). It is impor- to the shape of disability theorizing in glo- tant to recognize that the social model of bal contexts. disability is similarly laden with priorities, value judgements and historical perspectives that are by no means neutral or trans- SITUATING DISABILITY CULTURES parent; Disability Studies’ own “past lega- Our own analysis aims to supplement Dav- cies”—its “interpretation of the past” within idson’s globalized perspectives with spe- a political framework of western minority cific references to postcolonial contexts, rights activism—can equally be accused of theory and critical practices. To an extent a lack of self-reflexivity regarding its often this continues the work begun by Pushpa relatively privileged “conditions of exist- Naidu Parekh and the contributors to her ence” within systems of “globalized capi- special issue of Wagadu on “Intersect- talism.” The kind of transnational “disabil- ing Gender and Disability Perspectives in ity-and-development” projects (Nepveux Rethinking Postcolonial Identities” (2007), and Smith Beitiks 2010) that act in the but we see our scholarship as bringing an name of progressive disability politics to added focus on critical methodology and change attitudes and conditions in the the specifics of literary and cultural analy- global South without the necessary aware- ses informed by both Postcolonial Studies ness of local ideologies and infrastructures and Disability Studies. The main interven- to resist their own neocolonizing effects, tion we intend to make is formulated as a are an offshoot of this embedded political call to move away from the “modelling” stance on disability—a version of Gayatri established as the dominant mode of dis- Spivak’s well-known paradigm of “white ability theorizing at present toward more men saving brown women from brown nuanced understandings of disability in men” (1999: 287). relation to cultural difference and situated Instead of imposing a hegemonic model experience. We believe that for Disability of disability, then, and assuming that dis- Studies to move forward, it is imperative to ability will function in comparable ways interrogate the universal approach to dis- across disparate cultural texts and con- ability naturalized within the social model texts, contemporary materialist postcolo- of disability in particular, and in doing so nial criticism gives us the tools to take par- to enact what might be termed a “decolo- ticular, situated experiences as the starting 68 | CLARE BARKER AND STUART MURRAY

point for disability analysis, enabling acts of health and disability demonstrates that of criticism emerging from and informed by drawing generalized conclusions about the (rather than applied to) “cultural located- ways in which postcolonial cultures experi- ness” in the first instance. In endorsing this ence disability cannot account for either the method we echo the anthropologists Ben- ontological or the material conditions which edicte Ingstad and Susan Reynolds Whyte are formative in constructing disabled lives. who, in Disability in Local and Global As an agent of biopolitical control, nor- Worlds (2007), seek to orientate disability malcy in particular might not function in research “in the direction of greater differ- the same ways in different cultural contexts. entiation and specificity” (5) instead of the Whereas in the global North, disability the- pursuit of overarching disability models. orizing works from the assumption that “We are interested in people’s own expe- disability is a minority subject position, and riences of what is disabling in their world may focus on what Fiona Kumari Campbell rather than in some universal definition” calls “debates about the purview of citizen- (11), they write—a sentiment that reso- ship” for disabled people “in advanced nates with the increasing emphasis on lived capitalist liberal nation-states,” the case is experience in the humanities-based schol- very different in some postcolonial nation- arship of Siebers and Snyder and Mitchell. states where there are instead “disputes A vital step toward such analysis is regarding the best way to discern the field the recognition that key Disability Stud- of not-disability (i.e. the healthy compara- ies concepts, including minority identity, tor)” (2009: 34). In contexts of chronic pov- normalcy, and the relationship between erty or indigenous dispossession, ill health impairment and disability, are contin- and disability may be widespread enough gent on cultural difference and may be to shift the thresholds of health and dis- challenged by situated critical reading ability, and in communities experiencing practices. In a variety of postcolonial mass disablement (due to war, disaster, or contexts, culturally specific beliefs about industrial accident) people with disabili- embodiment, ontology, communal iden- ties often constitute a numerical majority. tity and belonging continue to shape dis- “Normal” lived experience in postcolonial ability experiences. For example, many and developing contexts might be disabled indigenous communities do not identify experience, drastically altering the cat- with individualist models of impairment; egorical and exclusionary implications of in some American Indian cultures, for “normalcy” and “non-normativity.” instance, “[t]he determination of ‘nor- The acclaimed Bengali writer and activ- malcy’ in health or wellness is dependent ist Mahasweta Devi dramatizes these points on whether or not the individual is in bal- in a powerful short story, “Shishu” [“Chil- ance with all her relations” (Lovern 2008), dren”] (1993), which details an encounter including a balance with the natural world. between an idealistic relief officer, Singh, For Ma¯ori in Aotearoa/New Zealand, the and an adivasi (tribal) community suffer- individuality of impairment is similarly ing from the compound crises of poverty, downplayed; “health is viewed as an inter- political repression, drought and famine. related phenomenon rather than an intra- The narrative climaxes with Singh’s reali- personal one,” meaning that “Ma¯ori are zation that although “[h]e didn’t have the more likely to link good or bad health with stature of a healthy Russian, Canadian, or interpersonal and inter-generational con- American” and he “did not eat food that cerns” (Durie 1998: 71, 2). The presence supplied enough calories for a human of indigenous or local “cultural models” body,” when placed in context of the DISABLING POSTCOLONIALISM | 69 adivasis’ government-sanctioned disable- We would caution especially against the ment, his own body—“the ill-nourished blanket rejection and/or critique of medi- and ridiculous body of an ordinary Indian” cal discourse and medicalized terminol- (our emphasis)—represents “the worst ogy, which may be strategically important possible crime in the history of civiliza- when campaigning for resources and rais- tion.” By comparison, his “normalcy” (250) ing awareness of (neo)colonial abuses. appears as obscene privilege. As Singh’s What individuals in such circumstances “shadow” (250) is cast suggestively over experience as loss should not be rendered the disabled and infantilized bodies of an invalid response by arguments that fail the adivasis, the narrative displays how, to recognize the wider contexts and mate- in a deeply stratified postcolonial society rial environments in which disablement where power is exercised differentially, the occurs. “normate” (Garland-Thomson 1997: 8) is Any engagement with the environments shadowy, unstable and ultimately elusive. in which disability is created, especially Who sets the standards of embodied nor- by war or disaster, and the subsequent malcy here? The middle-class relief officer involvement of medical practice and dis- who rations food parcels? The govern- course, invokes the category of trauma. The ment, whose land repossessions, taxes and relationship between disability and trauma wars have disenfranchised and starved its is one that is often cited explicitly in post- resistant indigenous citizens? Or the World colonial literary and cultural narratives but Health Organization, directly invoked by has not yet undergone any sustained criti- Singh (250), whose recommendations for cal analysis. In fact, James Berger describes calorie consumption render disabled a a “discursive abyss” (2004: 563) between large proportion of India’s population? By disability scholarship and that on trauma, complicating normalcy to the point of dif- going so far as to say that “disability stud- fusion, “Shishu” represents an instructive ies exhibits a significant degree of denial parable for disability analysis informed by with regard to trauma and loss” (572). This postcolonial perspectives. While acknowl- is perhaps understandable, given the com- edging global codes of health and normalcy mitment of Disability Studies to changing as a spectral presence in the adivasis’ lives, perceptions of disability as tragedy or mis- Devi relativizes such universalizing stand- fortune, but the confluence of disability ards, foregrounding the local inflections and trauma in many postcolonial contexts that disable specific bodies in a historicized raises a number of vital questions that Dis- context of struggle. ability Studies should posit and attempt to answer. Do we conceptualize trauma as a disability? Or, given that the ways in which ENVIRONMENT, TRAUMA, individuals acquire disabilities are often DISABLEMENT compounded by sociopolitical and cultural Given that the history of colonialism (and factors, can disability be considered just its post/neocolonial aftermath) is indeed one component of the wider category of a history of mass disablement, and that “trauma”? How do our assumptions about the acquisition of disability may be tied this relationship affect the ways in which into wider patterns of dispossession—the disability is treated, administered, repre- loss of family, home, land, community, sented, and discussed? There are no simple employment—there is a pressing need, as answers to these questions but we would we see it, to resist the too-easy censure of argue that the content of postcolonial nar- narratives that construct disability as loss. ratives suggests that disability criticism 70 | CLARE BARKER AND STUART MURRAY

should address this absence in pursuit of a descriptor for a particular mode of disabil- more robust and inclusive theorization of ity theorizing, postcolonial disability expe- how “loss” may be constituted within dis- riences may similarly trouble “environ- ability experiences. ment” as it is applied, in the social model, as This notion of compound trauma raises a generic disabling force. The assumption the question of whether the term disabil- that, as Siebers puts it, “[t]here is a one-to- ity is adequate in encapsulating the com- one correspondence between the dimen- plex manifestations of disabled difference sions of the built environment and its pre- in specific traumatic settings. Anthony ferred social body—the body invited inside Carrigan’s work (2010) draws attention to as opposed to those bodies not issued an the particular forms of stigmatization and invitation” (2008: 85), becomes irrelevant exclusion suffered by hibakusha (“explo- in the context of Haiti. Events there remind sion-affected people”) in post-Hiroshima/ us of the sometimes problematic over- Nagasaki Japan. Caught between a general emphasis within Disability Studies on the fear of radiation sickness and responses constructedness of environments accord- generated from the cultural memory of the ing to able-bodied norms. Indeed, it could bombings, the experiences of hibakusha be that the competing claims for territory are continually conditioned by their impli- and resources, alternative conceptions cation within the ongoing resonance of a of space and place, or the regularity of collective trauma. As they negotiate minor- destruction in some postcolonial contexts, ity subject positions, hibakusha potentially require that we rethink what is meant by undergo all the forms of oppression, dis- disabling environments. Furthermore, the crimination, coalition and activism that belief that such environments can be trans- we recognize as aspects of disability poli- formed through minority activism, the tics, and yet disability as we know it does removal of barriers, and universal design, not wholly account for the range of often is symptomatic of a deterministic notion of fraught interactions between impaired environmental accessibility which does not individuals and a society coming to terms account for environments in which exclu- with a violent and traumatic history. Once sion and inaccessibility are by no means more, the specific cultural and historical unique to people with disabilities. meanings of disability experience in post- With this destabilization of human– colonial environments challenge the foun- environment relations in mind, engage- dational assumptions, and the suitability ments with postcolonial environmental of the analytical tools, we would apply to writing can help develop an understanding global disability. of disabling postcolonial environments. As this example makes clear, the pro- Rob Nixon points out how “[n]on-Western duction of disability in postcolonial loca- environmental movements are typically tions involves complicated relationships alert to the interdependence of human between cultural and environmental fac- survival and environmental change” (2005: tors. McRuer’s (2010) timely commentary 243), and postcolonial ecocriticism has on the 2010 Haitian earthquake highlights recently begun to direct much-needed how the disabilities caused by a seemingly attention toward the ways in which “envi- “natural” disaster are necessarily entan- ronment” functions as “an integrated net- gled with economic relations and cultural work of human and non-human agents discourses that form the legacy of coloni- acting historically” (Mukherjee 2010: 5) alism in the state. Just as we believe that rather than simply existing as a stable, culture cannot be used as a universal transformable, backdrop to human action DISABLING POSTCOLONIALISM | 71 in the postcolony. In fact, many of the cen- have doomed them to an early death any- tral issues within postcolonial ecocriti- way” (2010: 155).4 Here, in a process Said cism—the “corporatizing of biodiversity,” would recognize only too well, the chain of “indigenous land rights, community dis- events by which high-risk environments, placement, . . . toxicity, . . . urban or poor poverty, and disability mutually produce rural experience,” “biodegradation, . . . and reinforce one another exemplifies the and ‘engineered environments’,” “nuclear relationships of power that systematically testing and nuclear pollution” (Nixon devalue human lives. As a consequence, 2005: 243–45) to name just a few—have Sinha’s novel, like Bhopal itself, invites a direct and obvious links to health and dis- consideration of disability within the wider ability issues, whether as causal factors of discourses of human rights where they disablement or as contexts that exacerbate intersect with sudden and violent environ- the oppression of people with disabilities. mental change. Despite postcolonial ecocriticism’s interest in the contingency and fragility of CONCLUSION: REPRESENTATION, human–environmental interactions, how- PARTICIPATION AND DEMOCRACY ever, it has so far failed to factor the presence of different human bodies, abilities Sinha’s deliberately provocative construc- and needs into its “network of human and tion of his protagonist using animalistic non-human agents” in any notable way. analogies points to another challenge gen- Indra Sinha’s Booker Prize-shortlisted erated by postcolonial disability writing: novel Animal’s People (2007) showcases the need to diversify the terms of our formal how a combination of disability and analysis. The exposure, problematization, ecocritical perspectives can illuminate the dismantling and deconstruction of oppres- complex interrelations inherent to disa- sive representational practices—and met- bling postcolonial environments. A fiction- aphor in particular—remains an incredibly alization of the Bhopal industrial disaster powerful tool within humanities-based of 1984, when toxic gas killed thousands disability research, but in thinking about of people as well as generating chronic ill- metaphor, we agree with Amy Vidali’s sug- nesses, disabilities, and reproductive dis- gestions that criticism should “[refrain] orders in the years that followed, Animal’s from policing metaphor” and instead People broaches the relationship between “[invite] creative and historic reinterpre- environment, disability and the human tations” (2010: 34) of figurative language. in its protagonist’s opening statement: “I This process surely has to include the vary- used to be human once” (1). In the novel, ing cultural inflections that attach mean- “Animal,” who has a twisted spine and ing and resonance to impairment. moves on all fours, politicizes his socially While disability is frequently used, inscribed dehumanization and is perceived problematically, as a metaphor for the as “especially abled” (23) due to his unique “damaged” or abject postcolonial body perspectives and skilled negotiation of his politic, there are many semantic permuta- environment. Yet rather than focusing on tions to disability representation. Disabil- the presence of disability, Pablo Mukher- ity metaphors may be meaningful not just jee’s analysis of the novel stresses the as “crutch[es]” (Mitchell and Snyder 2000: related concern that to Union Carbide— 49) in the telling of some “other” tale of the multinational corporation implicated postcolonial experience, but as part of in Bhopal—the Indian “victims of gas were foundational cultural and historical dis- expendable because their poverty would ability narratives; the depiction of scars 72 | CLARE BARKER AND STUART MURRAY

in narrative accounts of slavery is just one of benefit. And they also remind us that, in conspicuous example of this. The situated the widest possible sense, “participation” reading practices we are proposing aim to allows for the formation of a full and inclu- highlight how particular disability experi- sive idea of citizenship, one radical and ences can shape cultural histories and are yet everyday in its appreciation of the real written into artistic and representational value of disabled lives. practices. Centrally, this involves consideration of what analogies might signify to the NOTES (disabled/postcolonial) community they represent and how they function within a 1. For the most developed discussion of these particular literary form and cultural logic, intersections, see Barker 2011. 2. See, for example, Quayson 1997 and 2000. rather than the wholesale dismissal of met- 3. For Smith, “research” is directly associated with aphor as damaging, ableist or stigmatiz- “the worst excesses of colonialism” (1). Her notion ing. Ralph Savarese’s (2010) identification of “decolonizing” research involves prioritizing of “postcolonial neurology” is provocative the worldviews of research subjects and evidence of how creative cross-fertiliza- ensuring that the products of research—whether material, financial, social or epistemological— tions between disability and postcolonial are communicated to, and used to benefit, the metaphors can service the most radical communities they represent. disability agendas. The idea of the “post- 4. In contrast, Michael Davidson’s reading of colonial brain,” with its challenge to the Bhopal puts disability at the heart of the disaster assumptions that come with the terms when he wryly uses Union Carbide’s motto, “Today, something we do will touch your life,” postcolonialism or neurology, is, we feel, as the epigraph to his chapter on disability and exactly the kind of productive criticism that globalization (2008: 168). can come when postcolonial and disability thinking are allowed to meet with an openness toward their possible interactions. WORKS CITED It is this sense of the radical and possi- Ashcroft, Bill and Pal Ahluwalia. Edward Said. London ble that draws us to Edward Said and ideas and New York: Routledge, 2000. of democracy and “participatory citizen- Barker, Clare. Postcolonial Fiction and Disability: Exceptional Children, Metaphor and Materiality. ship.” For Said, near the end of his own Basingstoke: Palgrave Macmillan, 2011. life and still pursuing the need for a radi- Berger, James. “Trauma Without Disability, Disability cal engagement with culture, participation Without Trauma: A Disciplinary Divide.” Journal meant both the production of criticism and of Advanced Composition 24.3 (2004): 563–82. the possibility of democratic agency. “Cri- Campbell, Fiona Kumari. Contours of Ableism: The Production of Disability and Abledness. Basing- tique,” he wrote, “is always restlessly self- stoke: Palgrave Macmillan, 2009. clarifying in search of freedom, enlight- Carrigan, Anthony. “Postcolonial Disaster, Pacific enment and more agency, and certainly Nuclearization, and Disabling Environments.” not their opposites.” Working within such Journal of Literary & Cultural Disability Studies 4.3 terms, he observed, “means situating cri- (2010): 255–72. Davidson, Michael. Concerto for the Left Hand: Dis- tique . . . as a form of democratic freedom ability and the Defamiliar Body. Ann Arbor: U of and as a continuous practice of question- Michigan P, 2008. ing and accumulating knowledge” (2004: Devi, Mahasweta. “Shishu”. Trans. Pinaki Bhattacharya. 73, 74). Such statements, we feel, help us Women Writing in India: 600 B.C. to the Present. Vol. to understand that the knowledge we seek 2: The Twentieth Century. Ed. Susie Tharu and K. Lal- ita. New York: The Feminist Press, 1993. 236–51. to bring to bear on thinking about post- Dirlik, Arif. “Rethinking Colonialism: Globalization, colonial disability requires the scrutiny of Postcolonialism, and the Nation.” Interventions such “continuous questioning” if it is to be 4.3 (2002): 428–48. DISABLING POSTCOLONIALISM | 73

Durie, Mason. Whaiora: Ma¯ori Health Development. Ben Okri. Oxford/Bloomington: James Currey/ 1994. 2nd edn. Auckland: Oxford UP, 1998. Indiana UP, 1997. Garland-Thomson, Rosemarie. Extraordinary ——. Postcolonialism: Theory, Practice or Process? Bodies: Figuring Physical Disability in American Cambridge: Polity, 2000. Culture and Literature. New York: Columbia UP, ——. Aesthetic Nervousness: Disability and the Crisis 1997. of Representation. New York: Columbia UP, 2007. Lovern, Lavonna. “Native American Worldview Said, Edward. Humanism and Democratic Criticism. and the Discourse on Disability.” Essays in Phi- London: Palgrave Macmillan, 2004. losophy 9.1 (2008): . Culture: Interviews with Edward Said. Ed. Gauri McRuer, Robert. Crip Theory: Cultural Signs of Queer- Viswanathan. London: Bloomsbury, 2005. 39–52. ness and Disability. New York and London: New Savarese, Ralph. “Toward a Postcolonial Neurology: York UP, 2006. Autism, Tito Mukhopadhyay, and a New Geo- ——. “Reflections on Disability in Haiti.” Journal of poetics of the Body.” Journal of Literary & Cultural Literary & Cultural Disability Studies 4.3 (2010): Disability Studies 4.3 (2010): 273–89. 327–32. Shakespeare, Tom. “Disability, Identity, Difference.” Michalko, Rod. The Two-In-One: Walking with Exploring the Divide: Illness and Disability. Ed. Smokie, Walking with Blindness. Philadelphia: Colin Barnes and Geof Mercer. Leeds: Disability Temple UP, 1999. Press, 1996. 94–113. Mitchell, David T. and Sharon L. Snyder. Narrative Sherry, Mark. “(Post)colonizing Disability.” Wagadu 4 Prosthesis: Disability and the Dependencies of Dis- (2007): 21–36. course. Ann Arbor: U of Michigan P, 2000. Siebers, Tobin. Disability Theory. Ann Arbor: U of Mukherjee, Upamanyu Pablo. Postcolonial Environ- Michigan P, 2008. ments: Nature, Culture and the Contemporary Sinha, Indra. Animal’s People. London: Simon & Indian Novel in English. Basingstoke: Palgrave Schuster, 2007. Macmillan, 2010. Smith, Linda Tuhiwai. Decolonizing Methodologies: Nepveux, Denise and Emily Smith Beitiks. “Pro- Research and Indigenous Peoples. London and ducing African Disability Through African Film: New York: Zed Books, 1999. Emmanuel’s Gift and Moja Moja.” Journal of Snyder, Sharon L. and David T. Mitchell. Cultural Literary & Cultural Disability Studies 4.3 (2010): Locations of Disability. Chicago and London: U of 237–54. Chicago P, 2006. Nixon, Rob. “Environmentalism and Postcolonial- Spivak, Gayatri Chakravorty. A Critique of Postcolonial ism.” Postcolonial Studies and Beyond. Ed. Ania Reason: Toward a History of the Vanishing Present. Loomba, Suvir Kaul, Matti Bunzl, Antoinette Bur- Cambridge, MA: Harvard UP, 1999. ton, and Jed Esty. Durham and London: Duke UP, Vidali, Amy. “Seeing What We Know: Disability and 2005. 233–51. Theories of Metaphor.” Journal of Literary & Cul- Parekh, Pushpa Naidu (ed.). “Intersecting Gender and tural Disability Studies 4.1 (2010): 33–54. Disability Perspectives in Rethinking Postcolonial Whyte, Susan Reynolds and Benedicte Ingstad. Identities.”Wagadu 4 (2007). “Introduction: Disability Connections.” Disability Quayson, Ato. Strategic Transformations in Nigerian in Local and Global Worlds. Ed. Benedicte Ingstad Writing: Orality and History in the Works of Rev and Susan Reynolds Whyte. Berkeley, CA: U of Samuel Johnson, Amos Tutuola, Wole Soyinka and California P, 2007. 1–29. CHAPTER 6

Abortion and Disability: Who Should and Should Not Inhabit the World? Ruth Hubbard

Political agitation and education during the of the color of their skin, we would coun- past few decades have made most people ter that it is irresponsible to use scientific aware of what constitutes discrimination means to reinforce racial prejudices. Yet against blacks and other racial and ethnic we see nothing wrong, and indeed hail as minorities and against women. And legal progress, tests that enable us to try to avoid and social measures have been enacted having children who have disabilities or to begin to counter such discrimination. are said to have a tendency to acquire a Where people with disabilities are con- specific disease or disability later in life. cerned, our level of awareness is low, and The scientists and physicians who de- the measures that exist are enforced hap- velop and implement these tests believe hazardly. Yet people with disabilities and they are reducing human suffering. This disability-rights advocates have stressed justification seems more appropriate for again and again that it is often far easier speed limits, seat-belt laws, and laws to to cope with the physical aspects of a dis- further occupational safety and health than ability than with the discrimination and for tests to avoid the existence of certain oppression they encounter because of it kinds of people. When it comes to women (Asch, 1988; Asch and Fine, 1988). People or to racial or ethnic groups, we insist that shun persons who have disabilities and iso- it is discriminatory to judge individuals on late them so they will not have to see them. the basis of their group affiliation. But we They fear them as though the disability lump people with disabilities as though all were contagious. And it is, in the sense that disabilities were the same and always dev- it forces us to face our own vulnerability. astating and as though all people who have Most of us would be horrified if a sci- one were alike. entist offered to develop a test to diagnose Health and physical prowess are poor skin color prenatally so as to enable racially criteria of human worth. Many of us know mixed people (which means essentially ev- people with a disease or disability whom eryone who is considered black and many we value highly and so-called healthy peo- of those considered white in the Americas) ple whom we could readily do without. It is to have light-skinned children. And if the fortunate for human variety and variability scientist explained that because it is diffi- that most of us are not called on to make cult to grow up black in America, he or she such judgments, much less to implement wanted to spare people suffering because them. ABORTION AND DISABILITY: WHO SHOULD AND SHOULD NOT INHABIT THE WORLD? | 75

It is not new for people to view disability German eugenics, the attempt to imas a form of pollution, evidence of sin. Dis- prove the German race, or Volk, by rid- ability has been considered divine punish- ding it of inferior and foreign elements, ment or, alternatively, the result of witches’ was based on arguments and policies de- spells. In our scientific and medical era we veloped largely in Great Britain and the look to heredity for explanations unless United States during the latter part of the there is an obvious external cause, such as nineteenth and the beginning of the twen- an accident or infectious disease. Nowa- tieth centuries. (In what follows I shall not days, even if an infection can explain the translate the german word Volk because disability, scientists have begun to suggest it has no English equivalent. The closest that our genes might have made us unusu- is “people,” singular, used as a collective ally susceptible to it. noun, as in “the German people is patri- In a sense, hereditary disabilities are con- otic.” But “people,” singular, does not contagious because they can be passed from vey the collectivity of Volk because to us one generation to the next. For this reason, “people” means individuals. Therefore, we well before there was a science of genetics, would ordinarily phrase my example, “the scientists proposed eugenic measures to German people are patriotic.”) stem the perpetuation of “defects.” The term eugenics is derived from the Greek word for “well born.” It was coined in 1883 by Francis Galton, cousin of Charles THE RISE OF EUGENICS IN BRITAIN Darwin, as “a brief word to express the sci- AND THE UNITED STATES ence of improving the stock, which is by no Eugenics met its apotheosis under the Na- means confined to questions of judicious zis, which is why many Germans oppose mating, but which, especially in the case of genetic testing and gene therapy and their man [sic], takes cognizance of all the influ- use is being hotly debated in the parlia- ences that tend in however remote a degree ment. Germans tend to understand better to give the more suitable races or strains of than people in other countries what can blood a better chance of prevailing speed- happen when the concern that people with ily over the less suitable than they other- disabilities will become social and econom- wise would have had” (pp. 24–25). Galton ic burdens or that they will lead to a deterio- later helped found the English Eugenics ration of the race begins to dictate so-called Education Society and eventually became preventive health policies. They are aware its honorary president. that scientists and physicians were the ones British eugenics counted among its sup- who developed the Nazi policies of “selec- porters many distinguished biologists and tion and eradication” (Auslese und Ausmer- social scientists. Even as late as 1941, while ze) and who oversaw their execution. What the Nazis were implementing their eugenic happened under the Nazis has been largely extermination program, the distinguished misrepresented and misinterpreted in this biologist Julian Huxley (1941)—brother country, as well as among Nazi apologists in of Aldous—opened a semipopular article Germany. To make what happened clearer, I entitled “The Vital Importance of Eugen- shall briefly review the scientific underpin- ics” with the words: “Eugenics is running nings of the Nazi extermination program, the usual course of many new ideas. It has which are obscured when these practices ceased to be regarded as a fad, is now re- are treated as though they were incom- ceiving serious study, and in the near fu- prehensible aberrations without historical ture, will be regarded as an urgent practical roots or meaning—a holocaust. problem.” In the article, he argues that it 76 | RUTH HUBBARD

is crucial for society “to ensure that men- S. Italians will have multiplied to 100,000.” tal defectives [sic] shall not have children” To cope with this dire eventuality, eugenics and defines as mentally defective “some- programs had two prongs: “positive eugen- one with such a feeble mind that he can- ics”—encouraging the “fit” (read “well-to- not support himself or look after himself do”) to have lots of children—and “negative unaided.” (Notice the mix of eugenics and eugenics”—preventing the “unfit” (defined economics.) He says that he refuses to enter to include people suffering from so-called into the argument over whether such “ra- insanity, epilepsy, alcoholism, pauperism, cial degeneration” should be forestalled by criminality, sexual perversion, drug abuse, “prohibition of marriage” or “segregation and especially feeble-mindedness) from in institutions” combined with “steriliza- having any. tion for those who are at large.” He states Many distinguished American geneti- as fact that most “mental defects” are he- cists supported eugenics, but none was reditary and suggests that it would there- more active in promoting it than Charles fore be better if one could “discover how to Davenport, who, after holding faculty ap- diagnose the carriers of the defect” who are pointments at Harvard and the University “apparently normal.” “If these could but be of Chicago, in 1904 became director of the detected, and then discouraged or prevent- “station for the experimental study of evo- ed from reproducing, mental defects could lution,” which he persuaded the Carnegie very speedily be reduced to negligible pro- Institution of Washington to set up in Cold portions among our population” (my em- Spring Harbor on Long Island. His goal was phasis). It is shocking that at a time when to collect large amounts of data on human the Nazi program of eugenic sterilization inheritance and store them in a central of- and euthanasia was in full force across fice. In 1910, he managed to persuade the the Channel, Huxley expressed regret that heiress to the Harriman railroad fortune it was “at the moment very difficult to en- to fund the Eugenics Record Office at Cold visage methods for putting even a limited Spring Harbor, for which he got addition- constructive program [of eugenics] into ef- al money from John D. Rockefeller, Jr. He fect” and complained that “that is due as appointed Harry W. Laughlin, a Princeton much to difficulties in our present socio- Ph.D., as superintendent and recruited economic organization as to our ignorance a staff of young graduates from Radcliffe, of human heredity, and most of all to the Vassar, Cornell, Harvard, and other elite absence of a eugenic sense in the public at institutions as fieldworkers to accumulate large.” interview data about a large number of so- The American eugenics movement built called mental and social defectives. The on Galton and attained its greatest influ- office and its staff became major resources ence between 1905 and 1935. An underly- for promoting the two legislative programs ing concern of the eugenicists is expressed that formed the backbone of U.S. eugen- in a statement by Lewis Terman (1924), one ics: involuntary-sterilization laws and the of the chief engineers of I.Q. testing: “The Immigration Restriction Act of 1924. fecundity of the family stocks from which The first sterilization law was enacted in our most gifted children come appears to Indiana in 1907, and by 1931 some thirty be definitely on the wane. . . . It has been states had compulsory-sterilization laws figured that if the present differential birth on their books. Aimed in general at the rate continues 1,000 Harvard graduates insane and “feeble-minded” (broadly in- will, at the end of 200 years, have but 56 de- terpreted to include many recent immi- scendants, while in the same period, 1,000 grants and other people who did badly on ABORTION AND DISABILITY: WHO SHOULD AND SHOULD NOT INHABIT THE WORLD? | 77

I.Q. tests because they were functionally with disabilities would enfeeble the “race” illiterate or barely spoke English), these because they would survive to pass their laws often extended to so-called sexual disabilities on to their children; (2) that not perverts, drug fiends, drunkards, epilep- just mental and physical diseases and so- tics, and “other diseased and degenerate called defects, but also poverty, criminality, persons” (Ludmerer, 1972). Although most alcoholism, prostitution, and other social of these laws were not enforced, by Janu- problems were based in biology and inher- ary 1935 some twenty thousand people in ited; and (3) that genetically inferior people the United States had been forcibly steril- were reproducing faster than superior peo- ized, nearly half of them in California. In- ple and would eventually displace them. deed, the California law was not repealed Although these beliefs were not based in until 1980 and eugenic-sterilization laws fact, they fueled racist thinking and social are still on the books in about twenty programs in Britain and the United States states. as well as in Germany. The eugenic intent of the Immigration German racial hygiene was founded in Restriction Act of 1924 was equally explicit. 1895, some dozen years after Galton’s eu- It was designed to decrease the proportion genics, by a physician, Alfred Plötz, and was of poor immigrants from southern and based on much the same analysis of social eastern Europe so as to give predominance problems as the British and American eu- to Americans of British and north European genics movements were. In 1924, Plötz descent. This goal was accomplished by re- started the Archive of Race- and Socio-biol- stricting the number of immigrants allowed ogy (Archiv für Rassen- und Gesellschaftsbi- into the United States from any one country ologie) and the next year helped found the in each calendar year to at most 2 percent Society for Racial Hygiene (Gesellschaft für of U.S. residents who had been born in that Rassenhygiene). German racial hygiene country as listed in the Census of 1890 (so, initially did not concern itself with pre- thirty-four years earlier). The date 1890 was venting the admixture of “inferior” races, chosen because it established as a baseline such as Jews or gypsies, in contrast to the the ethnic composition of the U.S. popula- British and American movements where tion prior to the major immigrations from miscegenation with blacks, Asians, Native eastern and southern Europe, which began Americans, and immigrants of almost any in the 1890s. Laughlin of the Eugenics Re- sort was one of the major concerns. The cord Office was one of the most important recommended means for preventing racial lobbyists and witnesses at the Congres- degeneration in Germany, as elsewhere, sional hearings that preceded passage of was sterilization. Around 1930 even some the Immigration Restriction Act and was German socialists and communists sup- appointed “expert eugenical agent” of the ported the eugenic sterilization of inmates House Committee on Immigration and of psychiatric institutions, although the Naturalization (Kevles, 1985). main impetus came from the Nazis. The active melding of anti-Semitism and racial hygiene in Germany began during World RACIAL HYGIENE IN GERMANY War I and accelerated during the 1920s, What was called eugenics in the United partly in response to economic pressures States and Britain came to be known as and a scarcity of available positions, which racial hygiene in Germany. It was the re- resulted in severe competition for jobs and sponse to several related and widely held incomes among scientists and physicians, beliefs: (1) that humane care for people many of whom were Jews. 78 | RUTH HUBBARD

Racial hygiene was established as an Law” published by Laughlin (the superin- academic discipline in 1923, when Fritz tendent of Davenport’s Eugenics Record Lenz, a physician and geneticist, was ap- Office at Cold Spring Harbor), was being pointed to the newly created Chair of Ra- considered in 1932 by the Weimar govern- cial Hygiene at the University of Munich, a ment. On July 14, 1933, barely six months position he kept until 1933, when he moved after Hitler took over, the Nazi govern- to the Chair of Racial Hygiene at the Uni- ment passed its eugenic-sterilization law. versity of Berlin. Lenz, Eugen Fischer, and This law established genetic health courts Erwin Baer coauthored the most important (Erbgesundheitsgerichte), presided over by textbook on genetics and racial hygiene in a lawyer and two physicians, one of whom German. Published in 1921, it was hailed in was to be an expert on “hereditary patholo- a review in the American Journal of Heredity gy” (Erbpathologie), whose rulings could be in 1928 as “the standard textbook of human appealed to similarly constituted supreme genetics” in the world (quoted in Proctor, genetic health courts. However, during the 1988, p. 58). In 1931, it was translated into entire Nazi period only about 3 percent English, and the translation was favorably of lower-court decisions were reversed. reviewed in Britain and the United States The genetic health courts could order the despite its blatant racism, or perhaps be- sterilization of people on grounds that cause of it. By 1933, eugenics and racial they had a “genetically determined” dis- hygiene were being taught in most medical ease, such as “inborn feeblemindedness, schools in Germany. schizophrenia, manic-depressive insanity, Therefore the academic infrastructure hereditary epilepsy, Huntington’s disease, was in place when the Nazis came to power hereditary blindness, hereditary deafness, and began to build a society that gave bi- severe physical malformations, and severe ologists, anthropologists, and physicians alcoholism” (Müller-Hill, 1984, p. 32; my the opportunity to put their racist and eu- translation). The law was probably written genic theories into practice. Looking back by Dr. Ernst Rüdin, professor of psychiatry on this period, Eugen Fischer, who directed and director of the Kaiser Wilhelm Institute the Kaiser Wilhelm Institute for Anthropol- for Genealogy and Demography of the Ger- ogy, Human Genetics, and Eugenics in Ber- man Research Institute for Psychiatry in lin from 1927 to 1942, wrote in a newspaper Munich. The official commentary and in- article in 1943: “It is special and rare good terpretation of the law was published un- luck when research of an intrinsically theo- der his name and those of an official of the retical nature falls into a time when the gen- Ministry of the Interior, also a medical doc- eral world view appreciates and welcomes tor, and of a representative of the Health it and, what is more, when its practical re- Ministry in the Department of the Interior sults are immediately accepted as the basis who was a doctor of laws. All practicing for governmental procedures” (quoted in physicians were sent copies of the law and Müller-Hill, 1984, p. 64; my translation). It commentaries describing the acceptable is not true, as has sometimes been claimed, procedures for sterilization and castration. that German scientists were perverted by The intent of the law was eugenic, not Nazi racism. Robert Proctor (1988) points punitive. Physicians were expected to re- out that “it was largely medical scientists port patients and their close relatives to who invented racial hygiene in the first the nearest local health court and were place” (p. 38; original emphasis). fined if they failed to report someone with A eugenic-sterilization law, drafted a so-called hereditary disease. Although along the lines of a “Model Sterilization some physicians raised the objection that ABORTION AND DISABILITY: WHO SHOULD AND SHOULD NOT INHABIT THE WORLD? | 79 this requirement invaded the doctor- hundred racially mixed children were ster- patient relationship, the health authorities ilized; the children had been fathered by argued that this obligation to notify then black French colonial troops brought to was no different from requirements that Europe from Africa after World War I to oc- physicians report the incidence of specific cupy the Rhineland (the so-called Rhein- infectious diseases or births and deaths. landbastarde). The eugenic measures were to be regarded The first racist eugenic measures were as health measures pure and simple. And passed in 1935. They were the Nürnberg this is the crucial point: the people who antimiscegenation, or blood-protection designed these policies and the later poli- laws, which forbade intermarriage or sex- cies of euthanasia and mass extermination ual relations between Jews and non-Jews as well as those who oversaw their execu- and forbade Jews from employing non-Jews tion looked on them as sanitary measures, in their homes. The Nürnberg laws also required in this case to cure not individual included a “Law for the Protection of the patients but the collective—the Volk—of Genetic Health of the German People,” threats to its health (Lifton, 1987; Proctor, which required premarital medical ex- 1988). aminations to detect “racial damage” and As early as 1934, Professor Otmar von required people who were judged “dam- Verschuer, then dean of the University of aged” to marry only others like themselves, Frankfurt and director of its Institute for provided they first submitted to steriliza- Genetics and Racial Hygiene and later the tion. The Nürnberg laws were considered successor of Fischer as director of the Kai- health laws, and physicians were enlisted ser Wilhelm Institute for Anthropology, to enforce them. So-called positive eugen- Human Genetics, and Eugenics in Berlin, ics was practiced by encouraging “geneti- urged that patients should not be looked cally healthy” German women to have as on, and treated, as individuals. Rather the many children as possible. They were per- patient is but “one part of a much larger suaded to do so by means of propaganda, whole or unity: of his family, his race, his economic incentives, breeding camps, Volk” (quoted in Proctor, 1988, p. 105). Min- and strict enforcement of the law forbid- ister of the Interior Wilhelm Frisch estimat- ding abortion except for eugenic reasons ed that at least half a million Germans had (Koonz, 1987). genetic diseases, but some experts thought The next stage in the campaign of “se- that the true figure was more like one in lection and eradication” was opened at the five, which would be equivalent to thirteen Nazi party congress in 1935, where plans million. In any event, by 1939 some three were made for the “destruction of lives not to four hundred thousand people had been worth living.” The phrase was borrowed sterilized, with a mortality of about 0.5 per- from the title of a book published much cent (Proctor, 1988, pp. 108–109). After that earlier, in 1920, by Alfred Hoche, professor there were few individual sterilizations. of psychiatry and director of the Psychiat- Later, large numbers of people were steril- ric Clinic at Freiburg, and Rudolf Binding, ized in the concentration camps, but that professor of jurisprudence at the Univer- was done without benefit of health courts, sity of Leipzig. In their book, entitled The as part of the program of human experi- Release for Destruction of Lives Not Worth mentation. Living (Die Freigabe zur Vernichtung leb- The eugenic-sterilization law of 1933 ensunwerten Lebens), these professors ar- did not provide for sterilization on racial gued for killing “worthless” people, whom grounds. Nonetheless, in 1937 about five they defined as those who are “mentally 80 | RUTH HUBBARD

completely dead” and those who constitute Although the euthanasia program was “a foreign body in human society” (quoted planned in the mid-1930s, it was not imple- in Chorover, 1979, p. 97). At the time the mented until 1939, when wartime disloca- program was initiated, the arguments fo- tion and secrecy made it relatively easy to cused on the money wasted in keeping in- institute such extreme measures. Two weeks stitutionalized (hence “worthless”) people before the invasion of Poland an advisory alive, for in the early stages the rationale of committee commissioned by Hitler issued the euthanasia campaign was economic as a secret report recommending that children much as eugenic. Therefore the extermina- born with Down syndrome, microcephaly, tion campaign was directed primarily at and various deformities be registered with inmates of state psychiatric hospitals and the Ministry of the Interior. Euthanasia, like children living in state institutions for the sterilization, was to proceed with the trap- mentally and physically disabled. Jews were pings of selection. Therefore physicians specifically excluded because they were not were asked to fill out questionnaires about considered worthy of euthanasia. (Here, all children in their care up to age three too, the Nazis were not alone. In 1942, as the who had any of these kinds of disabilities. last inmates of German mental hospitals The completed questionnaires were sent to were being finished off, Dr. Foster Kennedy, three-man committees of medical experts an American psychiatrist writing in the of- charged with marking each form “plus” or ficial publication of the American Psychiat- “minus.” Although none of these “experts” ric Association, advocated killing mentally ever saw the children, those whose forms retarded children of five and older (Proc- were marked “plus” were transferred to tor, 1988). The arguments were phrased one of a number of institutions where they in humane terms like these: “Parents who were killed. Some of the oldest and most have seen the difficult life of a crippled or respected hospitals in Germany served as feebleminded child must be convinced such extermination centers. By 1941 the that though they have the moral obligation program was expanded to include older to care for the unfortunate creatures, the children with disabilities and by 1943, to wider public should not be obliged . . . to include healthy Jewish children. Also in assume the enormous costs that long-term 1939, evaluation forms were sent to psy- institutionalization might entail” (quoted in chiatric institutions for adults for selection Proctor, 1988, p. 183). This argument calls to and so-called euthanasia. mind the statement by Bentley Glass (1971) By September 1941 over seventy thou- about parents not having “a right to bur- sand inmates had been killed at some of den society with a malformed or a mentally the most distinguished psychiatric hospi- incompetent child.” tals in Germany, which had been equipped In Germany, the propaganda was sub- for this purpose with gas chambers, dis- tle and widespread. For example, Proctor guised as showers, and with crematoria (1988, p. 184) cites practice problems in a (Lifton, 1986; Proctor, 1988). (When the high school mathematics text published mass extermination of Jews and other for the school year 1935–36, in which stu- “undesirables” began shortly thereafter, dents were asked to calculate the costs to these gas chambers were shipped east and the Reich of maintaining mentally ill peo- installed at Auschwitz and other extermi- ple in various kinds of institutions for dif- nation camps.) Most patients were gassed ferent lengths of time and to compare the or killed by injection with legal drugs, but costs of constructing insane asylums and a few physicians were reluctant to inter- housing units. How is that for relevance? vene so actively and let children die of slow ABORTION AND DISABILITY: WHO SHOULD AND SHOULD NOT INHABIT THE WORLD? | 81 starvation and the infectious diseases to that show selections being made as the cat- which they became susceptible, referring tle cars emptied the victims into the con- to this as death from “natural” causes. Rel- centration camps: to work or to die? That atives were notified that their family mem- is where Joseph Mengele, an M.D./Ph.D., ber had died suddenly of one of a number selected the twins and other unfortunates of infectious diseases and that the body to use as subjects for his scientific experi- had been cremated for reasons of public ments at Auschwitz, performed in collabo- health. Nevertheless, rumors began to cir- ration with Professor von Verschuer, at that culate, and by 1941 hospital killings virtu- time director of the Kaiser Wilhelm Institute ally ceased because of protests, especially for Anthropology, Human Genetics, and from the Church. Eugenics in Berlin. And von Verschuer was There is a direct link between this cam- not the only distinguished scientist who paign of “selection and eradication” and gratefully accepted the human tissues and the subsequent genocide of Jews, gypsies, body fluids provided by Mengele. After the communists, homosexuals, and other “un- war it became fashionable to characterize desirables.” Early on these people were de- the experiments as “bad science,” but as scribed as “diseased” and their presence, as Beno Müller-Hill (1984) emphasizes, noth- an infection or a cancer in the body of the ing about them would be considered “bad” Volk. Proctor (1988, p. 194) calls this ratio- were they done with mice. What was “bad” nalization “the medicalization of antisemi- was not their scientific content but the fact tism.” The point is that the Nazi leaders that they were being done with “disenfran- shouted anti-Semitic and racist propagan- chised human beings” (p. 97). da from their platforms, but when it came to devising the measures for ridding the PRENATAL TESTING: WHO SHOULD Thousand Year Reich of Jews, gypsies, and INHABIT THE WORLD? the other undesirables, the task was shoul- dered by the scientists and physicians who I want to come back to the present, but I had earlier devised the sterilization and needed to go over this history in order to euthanasia programs for the mentally or put my misgivings and those of some of the physically disabled. Therefore, nothing Germans who are opposing genetic testing came easier than a medical metaphor: into the proper perspective. I can phrase Jews as cancer, Jews as disease. And so the the problem best by rephrasing a ques- Nazi extermination program was viewed tion Hannah Arendt asks in the epilogue of by its perpetrators as a gigantic program her commentary on the trial of Adolf Eich- in sanitation and public health. It started mann. Who has the “right to determine with quarantining the offending organ- who should and who should not inhabit isms in ghettoes and concentration camps the world?” (1977). That’s what it comes and ended with the extermination of those down to. who did not succumb to the “natural” con- So let me be clear: I am not suggesting sequences of the quarantine, such as the that prenatal diagnosis followed by abor- various epidemics and hunger. tion is similar to euthanasia. Fetuses are Yet a measure of selection was practiced not people. And a woman must have the throughout the eradication process: It was right to terminate her pregnancy, whatever still Auslese as well as Ausmerze. At every her reasons. I am also not drawing an anal- step choices were made of who could still ogy between what the Nazis did and what be used and who had become “worthless.” we and others in many of the industrial- We have read the books and seen the films ized countries are doing now. Because the 82 | RUTH HUBBARD

circumstances are different, different ples of how the principle of selection and things are being done and for different eradication now works in practice. reasons. But a similar eugenic ideology Think of people who have Hunting- underlies what happened then and the ton’s disease; as you may remember they techniques now being developed. So it is were on the list of people to be sterilized important that we understand how what in Germany. Huntington’s disease is a de- happened then came about—and not in generative disease of the nervous system some faraway culture that is altogether dif- and is unusual among hereditary diseases ferent from ours but in the heart of Europe, in that it is inherited as what geneticists in a country that has produced artists, writ- call a dominant trait. In other words, even ers, composers, philo sophers, jurists, sci- people in whom only one of the pair of entists, and physicians the equal of any in genes that is involved with regulating the the Western world. Given that record, we relevant metabolic processes is affected cannot afford to be complacent. manifest the disease. Most other gene-me- Scientists and physicians in this and diated diseases, such as Tay-Sachs disease other countries are once more engaged or sickle-cell anemia, are so-called reces- in developing the means to decide what sives: Only people in whom both members lives are worth living and who should and of the relevant pair of genes are affected should not inhabit the world. Except that manifest the disease. In the case of reces- now they provide only the tools, while sive diseases, people with only one affected pregnant women themselves have to gene are called carriers: They do not have make the decisions, euphemistically called the disease and usually do not even know choices. No one is forced to do anything. that they carry a gene for it. To inherit a A pregnant woman must merely “choose” recessive disease such as sickle-cell ane- whether to terminate a wanted pregnancy mia, a child must get an affected gene from because she has been informed that her fu- each of its parents; to inherit a dominant ture child will have a disability (although, disease, such as Huntington’s disease, it is as I have said before, usually no one can enough is she or he gets an affected gene tell her how severe the disability will be). from either parent. If she “chooses” not to take the tests or The symptoms of Huntington’s disease not to terminate a pregnancy despite a usually do not appear until people are in positive result, she accepts responsibility their thirties, forties, or fifties—in other for whatever the disability will mean to that words, after most people who want to have child and to her and the rest of her family. children have already had one or more. In that case, her child, her family, and the Woody Guthrie had Huntington’s disease, rest of society can reproach her for having but he did not become ill until after he so-to-speak “caused” that human being’s had lived a varied and productive life, pro- physical pain as well as the social pain he duced a large legacy of songs, and fathered or she experiences because our society his children. At present, there is no cure does not look kindly on people with dis- for Huntington’s disease, although scien- abilities. tists have been working to find one. How- There is something terribly wrong with ever, a test has been developed that makes this situation, and although it differs in it possible to establish with fair reliability many ways from what went wrong in whether a person or fetus carries the gene Germany, at base are similar principles of for Huntington’s disease, provided a suf- selection and eradication. Lest this analogy ficient number of people in that family is seem too abstract, let me give a few exam- willing to be tested. ABORTION AND DISABILITY: WHO SHOULD AND SHOULD NOT INHABIT THE WORLD? | 83

The existence of this test puts people defects (NTDs), a group of developmental with a family history of Huntington’s disorders which, in fact, are not inherited. disease in an outrageous position: Al- They include anencephaly (failure to de- though they themselves are healthy and velop a brain) and spina bifida (failure of do not know whether they will get the dis- the spinal column, and sometimes also ease, they must decide whether to be test- the overlying tissues, to close properly) ed, whether to persuade as many of their Babies with anencephaly die before birth relatives as possible to do the same, and or shortly thereafter. The severity of the whether to test their future child prenatally health problems of children who have spina so they can terminate the pregnancy if the bifida depends on where along the spinal test reveals that the fetus has the gene for column the defect is located and can vary Huntington’s disease. If it does and they de- from life-threatening to relatively mild. The cide on abortion, they are as much as say- incidence of NTDs varies geographically ing that a life lived in the knowledge that and tends to be higher in industrialized one will eventually die of Huntington’s dis- than in nonindustrialized areas. Women ease is not worth living. What does that say who carry a fetus with a neural-tube defect about their own life and the lives of their have a grater than usual concentration of family members who now know that they a specific substance, called alpha-feto- have the gene for Huntington’s disease? protein, in their blood. A blood test has If the fetus has the gene and they do not been developed to detect NTDs prenatally, abort, they are knowingly wishing a cruel, and California now requires that all preg- degenerative disease on their future child. nant women in the state be offered this test. And if they refuse the test, they can be ac- The women are first counseled about NTDs cused of sticking their heads in the sand. and about the test and then have to sign a This is an obscene “choice” for anyone to consent or refusal form. If they refuse, that have to make! is the end of it. If they consent, they can Some other inherited diseases also do later refuse to abort the fetus even if the test not become evident until later in life, such is positive. This procedure sounds relative- as retinitis pigmentosa, a degenerative eye ly unproblematical, although the require- disease. People with this disease are born ment to sign a refusal form is coercive. (You with normal vision, but their eyesight dete- cannot walk away; you must say no.) The riorates, although usually not until midlife, trouble is that although the test detects vir- and they may eventually lose their sight. tually all fetuses who have NTDs, it yields a (People with this disease presumably also large number of false positive results that were slated for sterilization by the Nazis be- suggest that the fetus has a NTD although cause it is a form of “hereditary blindness.”) it does not. There are different patterns of inheritance Let us look at some numbers. In Califor- of retinitis pigmentosa, and prenatal di- nia there are about two hundred thousand agnosis is becoming available for one of births a year and the incidence of NTDs these patterns and being sought for others. is about one per thousand. So, about 200 What are prospective parents to do when pregnant women a year carry fetuses with confronted with the “choice” of aborting NTDs and 199,800 do not. However, about a pregnancy because their future child 5 percent of women test positive on a first may become blind at some time during its test. In other words, if all pregnant women life? agreed to be tested, 10,000 women would Another, rather different, problem aris- have a positive test, 9,800 of which would es with regard to the so-called neural-tube be false positives. Those 10,000 women 84 | RUTH HUBBARD

would then have to undergo the stress of about “lives not worth living.” No one can worrying as well as further tests in order to make that kind of decision about someone determine who among them is in fact car- else. No one these days openly suggests rying a fetus with a NTD. And no test will that certain kinds of people be killed; they tell the 200 women whose fetus, in fact, has just should not be born. Yet that involves a a NTD how severe their child’s health prob- process of selection and a decision about lem will be. All this testing with uncertain what kinds of people should and should results must be offered at this time, when not inhabit the world. health dollars in California, as elsewhere, German women, who know the history have been cut to the bone, and increasing of Nazi eugenics and how genetic coun- numbers of pregnant women are coming seling centers functioned during the Nazi to term with little or no prenatal services period, have organized against the new geof any sort. netic and reproductive technologies (Duelli The reason I have spelled this problem Klein, Corea, and Hubbard, 1985). They are out in such detail is to make it clear that in suspicious of prenatal testing and counsel- many of these situations parents have only ing centers because some of the scientists the most tenuous basis for making their and physicians working in them are the decisions. Because of the fear of raising a same people who designed and imple- child with a serious disability, many wom- mented the eugenics program during the en “choose” to abort a wanted pregnancy Nazi period. Others are former co-workers if they are told that there is any likelihood or students of these Nazi professors. whatever that their future child may have a Our history is different, but not differ- health problem. At times like that we seem ent enough. Eugenic thinking is part of our to forget that we live in a society in which heritage and so are eugenic sterilizations. every day people of all ages are disabled Here they were not carried over to mass ex- by accidents—at work, on the street, or at terminations because we live in a democ- home—many of which could be prevented racy with constitutional safeguards. But, as if the necessary money were spent, the I mentioned before, even in recent times necessary precautions taken. What is more, black, Hispanic, and Native-American because of the deteriorating economic women have been sterilized against their conditions of poor people and especially wills (Rodriguez-Trias, 1982). We do not ex- women, increasing numbers of babies are alt the body of the people, as a collective, born with disabilities that could easily be over that of individuals, but we come dan- prevented and are prevented in most oth- gerously close to doing so when we ques- er industrialized nations. I question our tion the “right” of parents to bear a child excessive preoccupation with inherited who has a disability or when we draw unfa- diseases while callousness and economic vorable comparisons between the costs of mismanagement disable and kill increas- care for children with disabilities and the ing numbers of children and adults. costs of prenatal diagnosis and abortion. To say again, I am not arguing against We come mighty close when we once again a woman’s right to abortion. Women must let scientists and physicians make judg- have that right because it involves a deci- ments about who should and who should sion about our bodies and about the way not inhabit the world and applaud them we will spend the rest of our lives. But for when they develop the technologies that let scientists to argue that they are developing us implement such judgments. Is it in our these tests out of concern for the “quality of interest to have to decide not just whether life” of future children is like the arguments we want to bear a child but what kind of ABORTION AND DISABILITY: WHO SHOULD AND SHOULD NOT INHABIT THE WORLD? | 85 children to bear? If we try to do that we be- inhabit the world. People with disabilities, come entirely dependent on the decisions like the rest of us, need opportunities to act scientists and physicians make about what in the world, and sometimes that means technologies to develop and what disabili- that they need special provisions and con- ties to “target.” Those decisions are usually sideration. made on grounds of professional interest, So once more, yes, a woman must have technical feasibility, and economic and eu- the right to terminate a pregnancy, what- genic considerations, not out of a regard ever her reasons, but she must also feel em- for the needs of women and children. powered not to terminate it, confident that the society will do what it can to enable here and her child to live fulfilling lives. To PROBLEMS WITH SELECTIVE the extent that prenatal interventions im- ABORTION plement social prejudices against people I want to be explicit about how I think a with disabilities they do not expand our re- woman’s right to abortion fits into this productive rights. They constrict them. analysis and about some of the connec- Focusing the discussion on individualis- tions I see between what the Nazis did and tic questions, such as every woman’s right what is happening now. I repeat: A woman to bear healthy children (which in some must have the right to abort a fetus, what- people’s minds quickly translates into ever her reasons, precisely because it is a her duty not to “burden society” with un- decision about her body and about how healthy ones) or the responsibility of scien- she will live her life. But decisions about tists and physicians to develop techniques what kind of baby to bear inevitably are be- to make that possible, obscures crucial deviled by overt and unspoken judgments questions such as: How many women have about which lives are “worth living.” economic access to these kinds of choices? Nazi eugenic practices were fairly co- How many have the educational and cul- ercive. The state decided who should not tural background to evaluate the informa- inhabit the world, and lawyers, physicians, tion they can get from physicians critically and scientists provided the justifications enough to make an informed choice? It also and means to implement these decisions. obscures questions about a humane soci- In today’s liberal democracies the situa- ety’s responsibilities to satisfy the require- tion is different. Eugenic principles are ments of people with special needs and to part of our largely unexamined and un- offer them the opportunity to participate spoken preconceptions about who should as full-fledged members in the culture. and who should not inhabit the world, and Our present situation connects with the scientists and physicians provide the ways Nazi past in that once again scientists and to put them into practice. Women are ex- physicians are making the decisions about pected to implement the society’s eugenic what lives to “target” as not worth living by prejudices by “choosing” to have the ap- deciding which tests to develop. Yet if peo- propriate tests and “electing” not to initi- ple are to have real choices, the decisions ate or to terminate pregnancies if it looks that determine the context within which as though the outcome will offend. And to we must choose must not be made in our a considerable extent not initiating or ter- absence—by professionals, research re- minating these pregnancies may indeed view panels, or funding organizations. And be what women want to do. But one reason the situation is not improved by inserting we want to is that society promises much a new group of professionals—bioethi- grief to parents of children it deems unfit to cists—between the technical professionals 86 | RUTH HUBBARD

and the public. This public—the women Duelli Klein, Renate, Gena Corea, and Ruth Hubbard. and men who must live in the world that 1985. “German Women say No to Gene and Repro- the scientific/medical/industrial complex ductive Technology: Reflections on a Conference in Bonn, West Germany, April 19–21, 1985.” Femi- constructs—must be able to take part in nist Forum: Women’s Studies International Forum the process by which such decisions are 9(3): I–IV. made. Until mechanisms exist that give Galton, Francis. 1883. Inquiries into Human Faculty. people a decisive voice in setting the rel- London: Macmillan. evant scientific and technical agendas and Glass, Bentley. 1971. “Science: Endless Horizons or Golden Age?” Science 171: 23–29. until scientists and physicians are made Kevles, Daniel J. 1985. In the Name of Eugenics: accountable to the people whose lives they Genetics and the Uses of Human Heredity. New change, technical innovations do not con- York: Knopf. stitute new choices. They merely replace Koonz, Claudia. 1987. Mothers in the Fatherland: previous social constraints with new ones. Women, the Family and Nazi Politics. New York: St. Martin’s Press. Lifton, Robert J. 1986. The Nazi Doctors. New York: Ba- WORKS CITED sic Books. Ludmerer, Kenneth M. 1972. Genetics and American Arendt, Hannah. 1977. Eichmann in Jerusalem: A Society. Baltimore: Johns Hopkins University Press. Report on the Banality of Evil. New York: Penguin. Müller-Hill, Benno. 1984. Tödliche Wissenshaft. Rein- Asch, Adrienne. 1988. “Reproductive Technology and bek, West Germany: Rowohlt. (Translation 1988. Disability.” In Sherrill Cohen and Nadine Taub, Murderous Science. Oxford: Oxford University eds., Reproductive Laws for the 1990s. Clifton, Press.) N.J.: Humana Press. Proctor, Robert N. 1988. Racial Hygiene: Medicine and Asch, Adrienne, and Michelle Fine. 1988. “Introduc- the Nazis. Cambridge, Mass.: Harvard University tion: Beyond Pedestals.” In Michelle Fine and Press. Adrienne Asch, eds., Women with Disabilities. Rodriguez-Trias, Helen. 1982. In Labor: Women and Philadelphia: Temple University Press. Power in the Birthplace. New York: Norton. Chrorover, Stephan L. 1979. From Genesis to Genocide. Terman, Lewis M. 1924. “The Conservation of Talent.” Cambridge, Mass.: MIT Press. School and Society 19(483): 359–364. CHAPTER 7

Disability Rights and Selective Abortion Marsha Saxton

Disability rights activists are now articulat- respirators, and computer and commu- ing a critical view of the widespread prac- nication technologies have increased the tice of prenatal diagnosis with the intent mobility and access to education and em- to abort if the pregnancy might result in a ployment for people previously ostracized child with a disability. Underlying this cri- because of their disabilities. tique are historical factors behind a grow- Effective community organizing by ing activism in the United States, Germany, blind, deaf, and mobility-impaired citizen Great Britain, and many other countries, groups and disabled student groups flour- an activism that confronts the social stig- ished in the late 1960s and resulted in new matization of people with disabilities. legislation. In 1973 the Rehabilitation Act For disabled persons, women’s con- Amendments (Section 504) prohibited dis- sciousness-raising groups in the 1960s and crimination in federally funded programs. 1970s offered a model for connecting with The Americans with Disabilities Act of 1990 others in an “invisible” oppressed social (ADA) provides substantial civil rights pro- group and confirming the experience of tection and has helped bring about a pro- pervasive social oppression. (“That hap- found change in the collective self-image of pened to you, too?”) Participants in such an estimated 45 million Americans. Today, groups began to challenge a basic tenet of many disabled people view themselves as disability oppression: that disability causes part of a distinct minority and reject the the low socioeconomic status of disabled pervasive stereotypes of disabled people as persons. Collective consciousness-raising defective, burdensome, and unattractive. has made it clear that stigma is the cause. It is ironic that just when disabled citi- Effective medical and rehabilitation re- zens have achieved so much, the new resources since the 1950s have also contrib- productive and genetic technologies are uted to activism. Antibiotics and improved promising to eliminate births of disabled surgical techniques have helped to alle- children—children with Down’s syndrome, viate previously fatal conditions. Conse- spina bifida, muscular dystrophy, sickle quently, disabled people are living longer cell anemia, and hundreds of other condi- and healthier lives, and the population of tions. The American public has apparently people with severely disabling conditions accepted these screening technologies has increased. Motorized wheelchairs, based on the “commonsense” assump- lift-equipped wheelchair vans, mobile tions that prenatal screening and selective 88 | MARSHA SAXTON

abortion can potentially reduce the inci- “I’m nervous. Am I going to say something dence of disease and disability and thus offensive?” “I feel pretty awkward. Some improve the quality of life. A deeper look of these women’s bodies are so different!” into the medical system’s views of disability One woman, herself disabled, said that and the broader social factors contribut- she’d had a nightmare image of a disabled ing to disability discrimination challenges woman’s very different body. One woman these assumptions. confessed: “I feel terrible for some of these unfortunate disabled women, but I know I’m not supposed to feel pity. That’s awful REPRODUCTIVE RIGHTS IN A of me, right?” DISABILITY CONTEXT This awkwardness reveals how isolated There is a key difference between the goals the broader society and even progressive of the reproductive rights movement and feminists are from people with disabili- the disability rights movement regarding ties. The dangerous void of information reproductive freedom: the reproductive about disability is the context in which the rights movement emphasizes the right public’s attitudes about prenatal diagnosis to have an abortion; the disability rights and selective abortion are formed. In the movement, the right not to have to have an United States this information void has abortion. Disability rights advocates be- yielded a number of unexamined assump- lieve that disabled women have the right to tions, including the belief that the quality bear children and be mothers, and that all and enjoyment of life for disabled people women have the right to resist pressure to is necessarily inferior, that raising a child abort when the fetus is identified as poten- with a disability is a wholly undesirable ex- tially having a disability. perience, that selective abortion will save Women with disabilities raised these is- mothers from the burdens of raising dis- sues at a conference on new reproductive abled children, and that ultimately we as technologies (NRTs) in Vancouver in 1994.1 a society have the means and the right to For many of the conference participants, decide who is better off not being born. we were an unsettling group: women in What the women with disabilities were wheelchairs; blind women with guide dogs; trying to do at the Vancouver conference, deaf women who required a sign-language and what I wish to do in this essay, is ex- interpreter; women with scarring from plain how selective abortion or eugenic burns or facial anomalies; women with abortion, as some disability activists have missing limbs, crutches, or canes. I noticed called it, not only oppresses people with there what we often experience from peo- disabilities but also hurts all women. ple who first encounter us: averted eyes or stolen glances, pinched smiles, awkward EUGENICS AND THE BIRTH or overeager helpfulness—in other words, CONTROL MOVEMENT discomfort accompanied by the struggle to pretend there was none. The eugenic interest that stimulates reli- It was clear to me that this situation was ance on prenatal screening and selective constraining communication, and I decid- abortion today has had a central place in ed to do something about it. I approached reproductive politics for more than half several of the nondisabled women, asking a century. In the nineteenth century, eu- them how they felt about meeting such a genicists believed that most traits, includ- diverse group of disabled women. Many of ing such human “failings” as pauperism, the women were honest when invited to be: alcoholism, and thievery, as well as such DISABILITY RIGHTS AND SELECTIVE ABORTION | 89 desired traits as intelligence, musical abil- willing to claim, “The right wing wants to ity, and “good character,” were her editary. force us to have defective babies.”5 Clearly, They sought to perfect the human race there is work to be done. through controlled procreation, encouraging those from “healthy stock” to mate DISABILITY-POSITIVE IDENTITY and discouraging reproduction of those VERSUS SELECTIVE ABORTION eugenicists defined as socially “unfit,” that is, with undesirable traits. Through a se- It is clear that some medical profession- ries of laws and court decisions American als and public health officials are promot- eugenicists mandated a program of social ing prenatal diagnosis and abortion with engineering. The most famous of these was the intention of eliminating categories of the 1927 U.S. Supreme Court ruling in Buck disabled people, people with Down’s syn- v. Bell.2 drome and my own disability, spina bifida, Leaders in the early birth control move- for example. For this reason and others, ment in the United States, including Mar- many disability activists and feminists re- garet Sanger, generally embraced a eugenic gard selective abortion as “the new eugen- view, encouraging white Anglo-Saxon wom- ics.” These people resist the use of prenatal en to reproduce while discouraging repro- diagnosis and selective abortion. duction among nonwhite, immigrant, and The resistance to selective abortion in the disabled people. Proponents of eugenics disability activist community is ultimately portrayed disabled women in particular as related to how we define ourselves. As fem- unfit for procreation and as incompetent inists have transformed women’s sense of mothers. In the 1920s Margaret Sanger’s self, the disability community has reframed group, the American Birth Control League, the experience of having a disability. In part, allied itself with the director of the Ameri- through developing a sense of community, can Eugenics Society, Guy Irving Burch. The we’ve come to realize that the stereotyped resulting coalition supported the forced notions of the “tragedy” and “suffering” of sterilization of people with epilepsy, as well “the disabled” result from the isolation of as those diagnosed as mentally retarded disabled people in society. Disabled people and mentally ill. By 1937, in the midst of with no connections to others with dis- the Great Depression, twenty-eight states abilities in their communities are, indeed, had adopted eugenics sterilization laws afflicted with the social role assignment of aimed primarily at women for whom “pro- a tragic, burdensome existence. It is true, creation was deemed inadvisable.” These most disabled people I know have told me laws sanctioned the sterilizations of over with certainty, that the disability, the pain, 200,000 women between the 1930s and the the need for compensatory devices and as- 1970s.3 sistance can produce considerable incon- While today’s feminists are not respon- venience. But the inconvenience becomes sible for the eugenic biases of their fore- minimal once the disabled person makes mothers, some of these prejudices have the transition to a typical everyday life. It persisted or gone unchallenged in the re- is discriminatory attitudes and thought- productive rights movement today.4 Con- less behaviors, and the ensuing ostracism sequently, many women with disabilities and lack of accommodation, that make life feel alienated from this movement. On the difficult. That oppression is what’s most other hand, some pro-choice feminists disabling about disability. have felt so deeply alienated from the dis- Many disabled people have a growing ability community that they have been but still precarious sense of pride in an 90 | MARSHA SAXTON

identity as “people with disabilities.” With that disabled babies, once born, are too decades of hard work, disability activists great a burden, and that the doctors who have fought institutionalization and chal- failed to eliminate the “damaged” fetuses lenged discrimination in employment, should be financially punished. education, transportation, and housing. But many parents of disabled children We have fought for rehabilitation and In- have spoken up to validate the joys and sat- dependent Living programs, and we have isfactions of raising a disabled child. The proved that disabled people can partici- many books and articles by these parents pate in and contribute to society. confirm the view that discriminatory atti- As a political movement, the disability tudes make raising a disabled child much rights community has conducted protests more difficult than the actual logistics of and effective civil disobedience to publi- care.7 Having developed a disability-cen- cize our demand for full citizenship. Many tered perspective on these cases, disabled of our tactics were inspired by the women’s adults have joined with many parents of movement and the black civil rights move- disabled children in challenging the no- ment in the 1960s. In the United States tion that raising a child with a disability is we fought for and won one of the most necessarily undesirable. far-reaching pieces of civil rights legisla- The attitudes that disabled people are tion ever, the Americans with Disabilities frightening or inhuman result from lack Act. This piece of legislation is the envy of of meaningful interaction with disabled the international community of disability people. Segregation in this case, as in all activists, most of whom live in countries cases, allows stereotypes to abound. But where disabled people are viewed with pity beyond advocating contact with disabled and charity, and accorded low social and people, disability rights proponents claim legal status. Disability activists have fought that it is crucial to challenge limiting defi- for mentor programs led by adults with dis- nitions of “acceptably human.” Many par- abilities. We see disabled children as “the ents of children with Down’s syndrome youth” of the movement, the ones who of- say that their children bring them joy. But fer hope that life will continue to improve among people with little exposure to dis- for people with disabilities for generations abled people, it is common to think that to come. this is a romanticization or rationaliza- In part because of our hopes for disabled tion of someone stuck with the burden of a children, the “Baby Doe” cases of the 1980s damaged child. caught the attention of the growing disabil- Many who resist selective abortion in- ity rights movement. These cases revealed sist that there is something deeply valuable that “selective nontreatment” of disabled and profoundly human (though difficult to infants (leaving disabled infants to starve articulate in the sound bites of contem- because the parents or doctors choose not porary thought) in meeting and loving a to intervene with even routine treatments child or adult with a severe disability. Thus, such as antibiotics) was not a thing of the contributions of human beings cannot be past. In this same period, we also took note judged by how we fit into the mold of nor- of the growing number of “wrongful birth” malcy, productivity, or cost-benefit. People suits—medical malpractice suits brought who are different from us (whether in color, against physicians, purportedly on behalf ability, age, or ethnic origin) have much to of disabled children, by parents who feel share about what it means to be human. that the child’s condition should have been We must not deny ourselves the opportu- identified prenatally.6 These lawsuits claim nity for connection to basic humanness by DISABILITY RIGHTS AND SELECTIVE ABORTION | 91 dismissing the existence of people labeled there is a likelihood of each partner con- “severely disabled.” tributing one dominant dwarfism gene to the fetus. This results in a condition called “double dominance” for the offspring, MIXED FEELINGS: DISABLED which, in this “extra dose of the gene” PEOPLE RESPOND TO SELECTIVE form, is invariably accompanied by severe ABORTION medical complications and early death. So The disability activist community has be- prospective parents who are carriers of the gun to challenge selective abortion. But dwarfism gene, or are themselves dwarfs, among disabled people as a whole, there who would readily welcome a dwarf child, is no agreement about these issues. After might still elect to use the screening test all, the “disability community” is as diverse to avoid the birth of a fetus identified with as any other broad constituency, like “the “double dominance.” working class” or “women.” Aspects of this Deafness provides an entirely different issue can be perplexing to people with dis- example. There is as yet no prenatal test abilities because of the nature of the preju- for deafness, but if, goes the ethical conun- dice we experience. For example, the culture drum, a hearing couple could eliminate the typically invalidates our bodies, denying fetus that would become a deaf child, why our sexuality and our potential as parents. shouldn’t deaf people, proud of their own These cultural impulses are complexly in- distinct sign-language culture, elect for a tertwined with the issue of prenatal test- deaf child and abort a fetus (that would being. Since the early 1990s, disability rights come a hearing person) on a similar basis? activists have been exploring and debating Those who challenge selective or eugen- our views on selective abortion in the dis- ic abortion claim that people with disabili- ability community’s literature.8 In addition, ties are the ones who have the information just like the general population’s attitudes about what having a disability is like. The about abortion, views held by people with medical system, unable to cure or fix us, disabilities about selective abortion relate exaggerates the suffering and burden of to personal experience (in this case, per- disability. The media, especially the mov- sonal history with disability) and to class, ies, distort our lives by using disability as ethnic, and religious backgrounds. a metaphor for evil, impotence, eternal People with different kinds of disabili- dependence, or tragedy—or coversely as a ties may have complex feelings about pre- metaphor for courage, inspiration, or saint- natal screening tests. While some disabled hood. Disabled people alone can speak to people regard the tests as a kind of geno- the women facing these tests. Only we can cide, others choose to use screening tests speak about our real lives, our ordinary during their own pregnancies to avoid the lives, and the lives of disabled children. birth of a disabled child. But disabled people may also use the tests differently from “DID YOU GET YOUR AMNIO YET?”: women who share the larger culture’s anti- THE PRESSURE TO TEST AND ABORT disability bias. Many people with dwarfism, for exam- How do women decide about tests, and how ple, are incensed by the idea that a woman do attitudes about disability affect wom- or couple would choose to abort simply en’s choices? The reproductive technology because the fetus would become a dwarf. market has, since the mid-1970s, gradu- When someone who carries the dwarfism ally changed the experience of pregnancy. trait mates with another with the same trait, Some prenatal care facilities now present 92 | MARSHA SAXTON

patients with their ultrasound photo in a libertarian view (“Let people do whatever pink or blue frame. Women are increas- they want!”). Together, these strains fre- ingly pressured to use prenatal testing un- quently push prospective parents to suc- der a cultural imperative claiming that this cumb to the medical control of birth, while is the “responsible thing to do.” Strangers passively colluding with pervasive disabil- in the supermarket, even characters in TV ity discrimination. sit-coms, readily ask a woman with a preg- Among the most common justifications nant belly, “Did you get your amnio yet?” of selective abortion is that it “ends suf- While the ostensible justification is “reas- fering.” Women as cultural nurturers and surance that the baby is fine,” the under- medical providers as official guardians of lying communication is clear: screening well-being are both vulnerable to this mes- out disabled fetuses is the right thing, “the sage. Health care providers are trying, de- healthy thing,” to do. As feminist biologist spite the profit-based health care system, Ruth Hubbard put it, “Women are expected to improve life for people they serve. But to implement the society’s eugenic preju- the medical system takes a very narrow dices by ‘choosing’ to have the appropri- view of disease and “the alleviation of suf- ate tests and ‘electing’ not to initiate or to fering.” What is too often missed in medical terminate pregnancies if it looks as though training and treatment are the social factors the outcome will offend.”9 that contribute to suffering. Physicians, by Often prospective parents have never the very nature of their work, often have considered the issue of disability until it a distorted picture of the lives of disabled is raised in relation to prenatal testing. people. They encounter disabled persons What comes to the minds of parents at the having health problems, complicated by mention of the term birth defects? Usually the stresses of a marginalized life, perhaps prospective parents summon up the most exacerbated by poverty and race or gender stereotyped visions of disabled people de- discrimination, but because of their train- rived from telethons and checkout-coun- ing, the doctors tend to project the individ- ter charity displays. This is not to say that ual’s overall struggle onto the disability as all women who elect selective abortion do the “cause” of distress. Most doctors have so based on simple, mindless stereotypes. I few opportunities to see ordinary disabled have met women who have aborted on the individuals living in their communities basis of test results. Their stories and their among friends and family. difficult decisions were very moving. They Conditions receiving priority attention made the decisions they felt were the only for prenatal screening include Down’s syn- ones possible for them, given information drome, spina bifida, cystic fibrosis, and frag- they had been provided by doctors, coun- ile X, all of which are associated with mildly selors, and society. to moderately disabling clinical outcomes. Indeed, some doctors and counselors Individuals with these conditions can live do make a good-faith effort to explore with good lives. There are severe cases, but the prospective parents the point at which se- medical system tends to underestimate lective abortion may seem clearly “justi- the functional abilities and overestimate fiable,” with respect to the severity of the the “burden” and suffering of people with condition or the emotional or financial these conditions. Moreover, among the pri- costs involved. These efforts are fraught ority conditions for prenatal screening are with enormous social and ethical difficulty. diseases that occur very infrequently. Tay- Often, however, unacknowledged stereo- Sachs disease, for example, a debilitating, types prevail, as does a commitment to a fatal disease that affects primarily Jews of DISABILITY RIGHTS AND SELECTIVE ABORTION | 93 eastern European descent, is often cited as abortion trying to save the “endangered a condition that justifies prenatal screen- species” of disabled fetuses? When this ing. But as a rare disease, it’s a poor basis metaphor first surfaced, I was shocked for a treatment mandate. to think of disabled people as the target Those who advocate selective abortion of intentional elimination, shocked to to alleviate the suffering of children may realize that I identified with the fetus as often raise that cornerstone of contem- one of my “species” that I must try to porary political rhetoric, cost-benefit. Of protect. course, cost-benefit analysis is not wom- When we refer to the fetus as a disabled an-centered, yet women can be directly (rather than defective) fetus, we personify pressured or subtly intimidated by both the fetus via a term of pride in the disability arguments. It may be difficult for some to community. The fetus is named as a mem- resist the argument that it is their duty to ber of our community. The connection dis- “save scarce health care dollars,” by elimi- abled people feel with the “disabled fetus” nating the expense of disabled children. may seem to be in conflict with the pro- But those who resist these arguments be- choice stance that the fetus is only a part lieve the value of a child’s life cannot be of the woman’s body, with no independent measured in dollars. It is notable that fami- human status.11 lies with disabled children who are familiar Many of us with disabilities might have with the actual impact of the disabilities been prenatally screened and aborted if tend not to seek the tests for subsequent tests had been available to our mothers. children.10 The bottom line is that the cost- I’ve actually heard people say, “Too bad that benefit argument disintegrates when the baby with [x disease] didn’t ‘get caught’ in outlay of funds required to provide services prenatal screening.” (This is the sentiment for disabled persons is measured against of “wrongful birth” suits.) It is important the enormous resources expended to test to make the distinction between a preg- for a few rare genetic disorders. In addition, nant woman who chooses to terminate the it is important to recognize that promo- pregnancy because she doesn’t want to be tion and funding of prenatal tests distract pregnant as opposed to a pregnant wom- attention and resources from addressing an who wanted to be pregnant but rejects possible environmental causes of disabil- a particular fetus, a particular potential ity and disease. child. Fetuses that are wanted are called “babies.” Prenatal screening results can turn a “wanted baby” into an “unwanted DISABLED PEOPLE AND THE FETUS fetus.” I mentioned to a friend, an experienced dis- It is difficult to contemplate one’s own ability activist, that I planned to call a con- hypothetical nonexistence. But I know ference for disabled people and genetics several disabled teenagers, born in an era professionals to discuss these controver- when they could have been “screened out,” sial issues. She said, “I think the conference for whom this is not at all an abstraction. is important, but I have to tell you, I have In biology class their teachers, believing trouble being in the same room with pro- themselves to be liberal, raised abortion fessionals who are trying to eliminate my issues. These teachers, however, were less people.” I was struck by her identification than sensitive to the disabled students with fetuses as “our people.” when they talked about “eliminating the Are those in the disability rights move- burden of the disabled” through techno- ment who question or resist selective logical innovation. 94 | MARSHA SAXTON

In the context of screening tests, those discussing the fetus: we must clarify the of us with screenable conditions represent connection between control of “defective living adult fetuses that didn’t get aborted. fetuses” and the control of women as ves- We are the constituency of the potentially sels or producers of quality-controllable aborted. Our resistance to the systematic products. This continuum between con- abortion of “our young” is a challenge to trol of women’s bodies and control of the the “nonhumanness,” the nonstatus of products of women’s bodies must be exam- the fetus. This issue of the humanness of ined and discussed if we are going to make the fetus is a tricky one for those of us who headway in challenging the ways that new identify both as pro-choice feminists and reproductive technologies can increasing- as disability rights activists. Our dual per- ly take control of reproduction away from spective offers important insights for those women and place it within the commercial who are debating the ethics of the new re- medical system. productive technologies. A consideration of selective abortion as a control mechanism must include a view of the procedure as a wedge into the “quality DISENTANGLING PATRIARCHAL control” of all humans. If a condition (like CONTROL AND EUGENICS FROM Down’s syndrome) is unacceptable, how REPRODUCTIVE FREEDOM long will it be before experts use selective The issue of selective abortion is not just abortion to manipulate—eliminate or en- about the rights or considerations of dis- hance—other (presumed genetic) socially abled people. Women’s rights and the rights charged characteristics: sexual orientation, of all human beings are implicated here. race, attractiveness, height, intelligence? When disability rights activists chal- Pre-implantation diagnosis, now used with lenge the practice of selective abortion, as in vitro fertilization, offers the prospect of we did in Vancouver, many feminists re- “admission standards” for all fetuses. act with alarm. They feel “uncomfortable” Some of the pro-screening arguments with language that accords human status masquerade today as “feminist” when they to the fetus. One woman said: “You can’t are not. Selective abortion is promoted in talk about the fetus as an entity being sup- many doctors’ offices as a “reproductive ported by advocates. It’s too ‘right to life.’” option” and “personal choice.” But as an- Disabled women activists do not want to thropologist Rayna Rapp notes, “Private be associated with the violent anti-choice choices always have public consequenc- movement. In the disability community es.”13 When a woman’s individual decision we make a clear distinction between our is the result of social pressure, it can have views and those of anti-abortion groups. repercussions for all others in the society. There may have been efforts to court dis- How is it possible to defend selective abled people to support anti-abortion abortion on the basis of “a woman’s right ideology, but anti-abortion groups have to choose” when this “choice” is so con- never taken up the issues of expanding re- strained by oppressive values and attitudes? sources for disabled people or parents of Consider the use of selective abortion for disabled children, never lobbied for dis- sex selection. The feminist community ability legislation. They have shown no generally regards the abortion of fetuses interest in disabled people after they are on the basis of gender—widely practiced born.12 in some countries to eliminate female fe- But a crucial issue compels some of us tuses—as furthering the devaluation of to risk making people uncomfortable by women. Yet women have been pressed to DISABILITY RIGHTS AND SELECTIVE ABORTION | 95

“choose” to perpetuate their own devalu- Some proponents argue that prenatal ation.14 For those with “disability-positive” tests are feminist tools because they save attitudes, the analogy with sex selection is women from the excessive burdens associ- obvious. Oppressive assumptions, not in- ated with raising disabled children.15 This herent characteristics, have devalued who is like calling the washer-dryer a feminist this fetus will grow into. tool; technological innovation may “save Fetal anomaly has sometimes been used time,” even allow women to work outside as a justification for legal abortion. This jus- the home, but it has not changed who does tification reinforces the idea that women the housework. Women still do the vast are horribly oppressed by disabled children. majority of child care, and child care is not When disability is sanctioned as a justifica- valued as real work. Rather, raising children tion for legal abortion, then abortion for sex is regarded as women’s “duty” and is not selection may be more easily sanctioned as valued as “worth” paying mothers for (or well. If “choice” is made to mean choosing worth paying teachers or day-care work- the “perfect child,” or the child of the “right ers well). Selective abortion will not chal- gender,” then pregnancy is turned into a lenge the sexism of the family structure in process and children are turned into prod- which women provide most of the care for ucts that are perfectible through technolo- children, for elderly parents, and for those gy. Those of us who believe that pregnancy disabled in accidents or from nongenetic and children must not be commodified diseases. We are being sold an illusion that believe that real “choice” must include the the “burden” and problems of motherhood birth of a child with a disability. are being alleviated by medical science. But To blame a woman’s oppression on the using selective abortion to eliminate the characteristics of the fetus is to obscure and “burden” of disabled children is like taking distract us from the core of the “choice” po- aspirin for an ulcer. It provides temporary sition: women’s control over our own bodies relief that both masks and exacerbates the and reproductive capacities. It also obscures underlying problems. the different access to “choice” of different The job of helping disabled people groups of women. At conferences I’ve been must not be confused with the traditional asked, “Would I want to force a poor black devaluing of women in the caregiver role. woman to bear a disabled child?” That ques- Indeed, women can be overwhelmed and tion reinforces what feminists of color have oppressed by their work of caring for dis- been saying, that the framework of “choice” abled family members. But this is not trivializes the issues for nonprivileged caused by the disabilities per se. It is caused women. It reveals distortions in the public’s by lack of community services and inac- perception of users of prenatal screening; cessibility, and greatly exacerbated by the in fact, it is the middle and upper class who sexism that isolates and overworks women most often can purchase these “reproduc- caregivers. Almost any kind of work with tive choices.” It’s not poor women, or fami- people, if sufficiently shared and validated, lies with problematic genetic traits, who are can be meaningful, important, joyful, and creating the market for tests. Women with productive. aspirations for the “perfect baby” are estab- I believe that at this point in history the lishing new “standards of care.” Responding decision to abort a fetus with a disability to the lure of consumerism, they are helping even because it “just seems too difficult” create a lucrative market that exploits the must be respected. A woman who makes culture’s fear of disability and makes huge this decision is best suited to assess her profits for the biotech industry. own resources. But it is important for her to 96 | MARSHA SAXTON

realize this “choice” is actually made under lem with this perspective is evident when duress. Our society profoundly limits the one considers that there is no meaningful “choice” to love and care for a baby with distinction between “disabled people” and a disability. This failure of society should “women.” Fifty percent of adults with dis- not be projected onto the disabled fetus abilities are women, and up to 20 percent or child. No child is “defective.” A child’s of the female population have disabilities. disability doesn’t ruin a woman’s dream of The many prospective mothers who have motherhood. Our society’s inability to ap- disabilities or who are carriers of genetic preciate and support people is what threat- traits for disabling conditions may have ens our dreams. particular interests either in challenging In our struggle to lead our individual or in utilizing reproductive technologies, lives, we all fall short of adhering to our and these women have key perspectives to own highest values. We forget to recycle. We contribute. ride in cars that pollute the planet. We buy Why should hearing the perspectives of sneakers from “developing countries” that disabled people “make women feel guilty”? exploit workers and perpetuate the distor- The unhappy truth is that so many deci- tions in world economic power. Every day sions that women make about procreation we have to make judgment calls as we as- are fraught with guilt and anxiety because sess our ability to live well and right, and it sexism makes women feel guilty about is always difficult, especially in relation to their decisions. One might ask whether raising our own children—perhaps in this white people feel guilty when people of col- era more so than ever—to include a vision or challenge them about racism. And if so, of social change in our personal decisions. doesn’t that ultimately benefit everyone? Women sometimes conclude, “I’m not Do I think a woman who has utilized saintly or brave enough to raise a disabled selective abortion intended to oppress me child.” This objectifies and distorts the ex- or wishes I were not born? Of course not. perience of mothers of disabled children. No more than any woman who has had They’re not saints; they’re ordinary woman abortion means to eliminate the hu- en, as are the women who care for spouses man race. Surely one must never condemn or their own parents who become disabled. a woman for making the best choice she It doesn’t take a “special woman” to mother can with the information and resources a disabled child. It takes a caring parent to available to her in the crisis of decision. In raise any child. If her child became dis- resisting prenatal testing, we do not aim abled, any mother would do the best job to blame any individual woman or com- she could caring for that child. It is every- promise her individual control over her day life that trains people to do the right own life or body. We do mean to offer in- thing, sometimes to be leaders. formation to empower her and to raise her awareness of the stakes involved for her as a woman and member of the community DISABLED WOMEN HAVE A of all women. LEGITIMATE VOICE IN THE ABORTION DEBATE! A PROPOSAL FOR THE Unfortunately, I’ve heard some ethicists REPRODUCTIVE RIGHTS and pro-choice advocates say that dis- MOVEMENT abled people should not be allowed a voice in the selective abortion debate because The feminist community is making some “they make women feel guilty.” The prob- headway in demanding that women’s DISABILITY RIGHTS AND SELECTIVE ABORTION | 97 perspectives be included in formulating related laws in other countries). If we are policies and practices for new reproduc- going to promote far-reaching radical tive technologies, but the disability-cen- feminist programs for justice and equal- tered aspects of prenatal diagnosis remain ity, we must surely comply with minimal marginalized. Because the technologies standards set by the U.S. Congress. have emerged in a society with entrenched • We must support family initiatives— attitudes about disability and illness, the such as parental leave for mothers and tests have become embedded in medical fathers, flex- and part-time work, child “standards of care.” They have also become care resources, programs for low-income an integral part of the biotech industry, a families, and comprehensive health care new “bright hope” of capitalist health care programs—that help all parents and and the national economy. The challenge is thus make parenting children with dis- great, the odds discouraging. abilities more feasible. Our tasks are to gain clarity about pre- • We must convince legislatures, the natal diagnosis, challenge eugenic uses of courts, and our communities that fetal reproductive technologies, and support anomaly must never be used again as the rights of all women to maintain control a justification or a defense for safe and over reproduction. Here are some sugges- legal abortion. This is a disservice to the tions for action: disability community and an insupport- able argument for abortion rights. • We must actively pursue close con- • We must make the case that “wrongful nections between reproductive rights life” suits should be eliminated. “Wrong- groups and disabled women’s groups ful birth” suits (that seek damages for with the long-range goal of uniting our the cost of caring for a disabled child) communities, as we intend to do with all should be carefully controlled only to other marginalized groups. protect against medical malpractice, not • We must make the issue of selective to punish medical practitioners for not abortion a high priority in our move- complying with eugenic policy. ments’ agendas, pushing women’s • We must break the taboo in the feminist groups and disability and parent groups movement against discussing the fetus. to take a stand in the debate on selective Getting “uncomfortable” will move us abortion, instead of evading the issue. toward clarity, deepening the discussion • We must recognize disability as a feminist about women’s control of our bodies issue. All females (including teenagers and reproduction. and girls) will benefit from information • In response to the imperative from med- and discussion about disability before ical providers to utilize reproductive they consider pregnancy, so they can technologies, we can create programs avoid poorly informed decisions. to train “NRT peer counselors” to help • Inclusion of people with disabilities must women to learn more about new re- be part of the planning and outreach of productive technologies, become truly reproductive rights organizations. Inclu- informed consumers, and avoid being sion involves not only use of appropriate pressured to undergo unwanted tests. language and terminology for disability People with disabilities must be included issues but also involvement of disabled as NRT peer counselors. people as resources. Women’s organiza- • We can help ourselves and each other tions must learn about and comply with gain clarity regarding the decision to the Americans with Disabilities Act (or abort a fetus with a disability. To begin 98 | MARSHA SAXTON

with, we can encourage women to ex- give us for our occasional impatience. To amine their motivations for having chil- disabled people: forgive potential allies dren, ideally before becoming pregnant. for their ignorance and awkwardness. At We can ask ourselves and each other: meetings we disabled people hope to be What needs are we trying to satisfy in be- heard, but we also perceive the “discom- coming a mother? How will the charac- fort” that nondisabled people reveal, based teristics of the potential child figure into on lack of real information about who we these motivations? What opportunities are. There is no way around this awkward might there be for welcoming a child phase. Better to reveal ignorance than to who does not meet our ideals of moth- pretend and thereby preclude getting to erhood? What are the benefits of taking know each other as people. Ask questions; on the expectations and prejudices of make mistakes! family and friends? Have we met and in- I sometimes remember that not only teracted meaningfully with children and have I taken on this cutting-edge work for adults with disabilities? Do we have suf- future generations, but I’m doing this for ficient knowledge about disability, and myself now. The message at the heart of sufficient awareness of our own feelings widespread selective abortion on the basis about disabled people, for our choices of prenatal diagnosis is the greatest insult: to be based on real information, not some of us are “too flawed” in our very stereotypes? DNA to exist; we are unworthy of being born. This message is painful to confront. Taking these steps and responding to these It seems tempting to take on easier battles, questions will be a start toward increasing or even just to give in. But fighting for this our clarity about selective abortion. issue, our right and worthiness to be born, is the fundamental challenge to disability oppression; it underpins our most basic CARING ABOUT OURSELVES AND claim to justice and equality—we are in- EACH OTHER deed worthy of being born, worth the help Here are some things I have learned while and expense, and we know it! The great working to educate others on this issue. opportunity with this issue is to think and I try to be patient with potential allies, to act and take leadership in the place where take time to explain my feelings. I try to feminism, disability rights, and human lib- take nothing for granted, try not to get de- eration meet. fensive when people show their confusion or disagreement. I must remember that NOTES these issues are hard to understand; they run contrary to common and pervasive as- 1. New reproductive technologies is the term often sumptions about people and life. I have to used to describe procreative medical technologies, including such prenatal diagnostic tests remember that it took me a long time to as ultrasound, alpha fetal protein (AFP) blood begin to understand disability stereotyping screening, amniocentesis, chorionic villi screen- myself. At the same time, I have very high ing (CVS, a sampling of a segment of the amni- expectations for people. I believe it is pos- otic sac), and the whole host of other screening sible to be pushy but patient and loving at tests for fetal anomalies. NRTs also include in vitro fertilization and related fertility-enhancing the same time. technologies. The conference, “New Reproduc- To feminist organizations attempting tive Technologies: The Contradictions of Choice; to include disabled women in discussions the Common Ground between Disability Rights of abortion and other feminist issues: for- and Feminist Analysis,” held in Vancouver, No- DISABILITY RIGHTS AND SELECTIVE ABORTION | 99

vember 1994, was sponsored by the DisAbled and about Women with Disabilities (New York: Women’s Network (DAWN), and the National Ac- Feminist Press, 1987). tion Council on the Status of Women (NAC). 6. Adrienne Asch, “Reproductive Technology and 2. David J. Kevles, In the Name of Eugenics (New Disability,” in Reproductive Laws for the 1990s: A York: Knopf, 1985). Briefing Handbook, ed. Nadine Taub and Sherrill 3. Not long after eugenics became a respectable Cohen (New Brunswick, N.J.: Rutgers University science in the United States, Nazi leaders mod- Press, 1989). eled state policies on their brutal reading of U.S. 7. Helen Featherstone, A Difference in the Fam- laws and practices. After their rise to power in ily: Life with a Disabled Child (New York: Basic 1933 the Nazis began their “therapeutic elimina- Books, 1980). tion” of people with mental disabilities, and they 8. To my knowledge, Anne Finger was the first dis- killed 120,000 people with disabilities during the ability activist to raise this issue in the U.S. wom- Holocaust. See Robert J. Lifton, The Nazi Doctors: en’s literature. In her book Past Due: Disability, Medical Killing and the Psychology of Genocide Pregnancy, and Birth (Seattle: Seal Press, 1990), (New York: Basic Books, 1986). which includes references to her earlier writings, 4. Marlene Fried, ed., From Abortion to Reproduc- Finger describes a small conference where femi- tive Freedom: Transforming a Movement (Boston: nists and disability activists discussed this topic. South End Press, 1990), 159. German and British disability activists and femi- 5. Michelle Fine and Adrienne Asch, “The Question nists pioneered this issue. of Disability: No Easy Answers for the Women’s 9. Ruth Hubbard, The Politics of Women’s Biology Movement,” Reproductive Rights Newsletter 4, (New Brunswick, N.J.: Rutgers University Press, no. 3 (Fall 1982). See also Rita Arditti, Renate 1990), 197. Duelli Klein, and Shelley Minden, Test-Tube 10. Dorothy Wertz, “Attitudes toward Abortion Women: What Future for Motherhood? (Lon- among Parents of Children with Cystic Fibro- don: Routledge and Kegan Paul, 1984); Adri- sis,” American Journal of Public Health 81, no. 8 enne Asch, “The Human Genome and Disability (1991). Rights,” Disability Rag and Resource, February 11. This view must be reevaluated in the era of in 1994, 12–13; Adrienne Asch and Michelle Fine, vitro fertilization (IVF), where the embryo or “Shared Dreams: A Left Perspective on Disability a genetically prescreened embryo (following Rights and Reproductive Rights,” in From Abor- “pre-implantation diagnosis”) can be fertilized tion to Reproductive Freedom, ed. Fried; Lisa outside the woman’s body and frozen or can be Blumberg, “The Politics of Prenatal Testing and implanted in another woman. Such a fetus has Selective Abortion,” in Women with Disabilities: come to have legal status apart from the mother’s Reproduction and Motherhood, special issue of body: for example, in divorce cases where the Sexuality and Disability Journal 12, no. 2 (Sum- fate of these fetuses is decided by the courts. mer 1994); Michelle Fine and Adrienne Asch, 12. Many “pro-life” groups support abortion for “de- Women with Disabilities: Essays in Psychology, fective fetuses.” Most state laws, even conserva- Culture, and Politics (Philadelphia: Temple Uni- tive ones, allow later-stage abortions when the versity Press, 1988); Laura Hershey, “Choosing fetus is “defective.” Disability,” Ms., July/August 1994; Ruth Hubbard 13. Rayna Rapp, “Accounting for Amniocentesis,” and Elijah Wald, Exploding the Gene Myth: How in Knowledge, Power, and Practice: The Anthro- Genetic Information Is Produced and Manipu- pology of Medicine in Everyday Life, ed. Shirley lated by Scientists, Physicians, Employers, Insur- Lindenbaum and Margaret Lock (Berkeley: Uni- ance Companies, Educators and Law Enforcers versity of California Press, 1993). (Boston: Beacon Press, 1993); Marsha Saxton, 14. Suneri Thobani, “From Reproduction to Mal[e] “The Politics of Genetics,” Women’s Review of Production: Women and Sex Selection Technol- Books 9, no. 10–11 (July 1994); Marsha Saxton, ogy,” in Misconceptions: The Social Construction “Prenatal Screening and Discriminatory Atti- of Choice and the New Reproductive Technolo- tudes about Disability, in Embryos, Ethics and gies, vol. I, ed. Gwynne Basen, Margaret Eichler, Women’s Rights: Exploring the New Reproduc- and Abby Lippman (Quebec: Voyager Publishing, tive Technologies, ed. Elaine Hoffman Baruch, 1994). Amadeo F. D’Adamo, and Joni Seager (New York: 15. Dorothy C. Wertz and John C. Fletcher, “A Cri- Haworth Press, 1988); Marsha Saxton and Flor- tique of Some Feminist Challenges to Prenatal ence Howe, eds., With Wings: An Anthology by Diagnosis,” Journal of Women’s Health 2 (1993). CHAPTER 8

Disability, Democracy, and the New Genetics Michael Bérubé

In this essay I will try to suggest ways of to individual liberties (positive and nega- thinking about biotechnology, bioethics, tive), ideas of distributive justice, legiti- and disability that are compatible with mate scientific objectives, moral injunc- democratic values. I will start with the tions to prevent suffering, and beliefs uncontroversial proposition that we have about human dignity and nascent human entered an era in which our capacity for life. However, deliberative democrats must manipulating genetic material will deter- nevertheless agree to insist at the outset mine what it means to be human—and that democracy is the primary value to be in which our deliberations about what it upheld in the deliberations—that although means to be human will guide our capacity participants in the debate may rely on and for manipulating genetic material. In saying express strongly held religious beliefs, reli- this, I am presuming not only that political gious beliefs in and of themselves cannot deliberations can determine the scope and and must not determine the course or the direction of scientific research—that much scope of the debate. seems obvious—but also that democratic This might sound uncontroversial, but values should prevail with regard both to in practice and in theory, it has important the procedures and the substance of such consequences that many of my fellow citi- deliberations. Affirming at the outset one’s zens (and many of my fellow humans) will commitment to deliberative democracy not be willing to accept. In the course of this in such matters does not foreordain their essay, for example, I will rehearse my posi- outcome: it remains to be determined, tion on prenatal screening for fetuses with for instance, whether it is consonant with disabilities, a position I set forth in chap- democracy to prohibit or permit prospec- ter two of Life As We Know It, and I want tive parents to engage in genetic selection to acknowledge immediately that there are for Huntington’s disease or for myopia, many people of sound mind and good will or to prohibit or permit potential genetic who disagree with that position. Some of therapies for Alzheimer’s or multiple scle- them, as I have learned over the past few rosis. Deliberative democrats can plausi- years, dispute not only my calculations bly come to different conclusions on these of the relative social goods and harms of questions, based on opposing yet reasona- prenatal testing, but also, and more strin- ble assessments of how to understand and gently, my primary assumption that pub- adjudicate competing claims with regard lic access to and public uses of prenatal DISABILITY, DEMOCRACY, AND THE NEW GENETICS | 101 testing should be thought of in terms conso- the “not-too-distant future,” of widespread nant with democratic values. As one of my in vitro fertilization and pre-implantation interlocutors once put it, in the course of a screening, in which school placements, discussion at Syracuse University’s Center job interviews, and indeed life prospects for Human Policy, it may be that democ- consist of blood tests and urine samples. racy is not the highest value in such affairs. Children conceived the “old-fashioned” To people who start from the premise way—for example, by means of sex in the that there are divine laws the meanings of back seat of a car, as is the case for our which are not subject to human delibera- protagonist and narrator, Vincent Free- tion, and which therefore must be imposed man—are called “in-valids,” “de-gener- on humanity by the representatives of the ates,” “faith births,” or “God children”; deity, nothing I say in this essay will have they are increasingly rare, and they make sufficient persuasive force. And this is but up the lower echelons of society, assigned one example of a pervasive philosophical to various forms of menial labor. Vincent, problem that some have called, for better or played by Ethan Hawke, is excluded from worse, “postmodern”: when the claims of school as a child because the school cannot two systems of belief—democracy and the- afford the insurance costs he entails, and ocracy, perhaps—are opposed, there may consigned to a life of janitorial work even not be any way to reconcile them under the though he dreams of space flight, hoping heading of a third, more universal term. We against hope to work someday at the giant may instead be faced with a fundamental aerospace corporation, Gattaca. Through- incommensurability between discourses out his childhood, he had been fascinated of justification, such that we may not even with space and space travel; we see him, have the language in which to agree to disas a scrawny, bespectacled teen, reading a agree. Understanding this problem, then, book titled Careers in Space—and we wit- and admitting that I will have no common ness his father, venting his frustration and ground with some participants in debates anger by telling his son, “For God’s sake, over genomics even as I appeal to the Vincent, don’t you understand. The only practice of deliberative democracy, I will way you’ll see the inside of a space ship is begin my discussion of biotechnology and if you’re cleaning it.” The moment Vincent disability by talking about a Hollywood is born, his initial genetic analysis, drawn movie. But not just any Hollywood movie: from a blood sample and read instantane- the film in question, Gattaca, might well be ously by an attending nurse, reveals the the new locus classicus for discussions of following: he will have a 60 percent proba- genetic screening and enhancement, and bility of a neurological condition, a 42 per- one of its plots offers a vivid illustration of cent probability of manic depression, an what Michael Sandel would argue some 89 percent probability of attention deficit years later in The Case Against Perfection: disorder, a 99 percent probability of heart namely, that a designer baby might spend disease, and a life expectancy of 30.2 years. its life laboring under the burdens imposed No, this is not a plausible representation by his or her design, and that our sense of of what genes can tell us. But my argu- human freedom (for such children, and ment does not depend on this scene; what for their designing parents) would thereby matters for my purposes is that Vincent’s be paradoxically diminished rather than devastated parents, Marie and Antonio, enhanced by our increasing mastery over decide to have a second child in vitro; “like the genome. most other parents of their day, they were Gattaca depicts a dystopian world, set in determined that their next child would be 102 | MICHAEL BÉRUBÉ

brought into the world in what has become drug test can just as easily become an ille- the natural way.” The genetic technician/ gal peek at your future in the company.” counselor informs Marie and Antonio that And we see a human-resources manager four eggs have been fertilized—two boys, wordlessly challenging Vincent to pro- two girls—and that they have been fully vide a urine sample. The manager, like the screened for “critical predispositions to any genetic counselor, is black. of the major inheritable diseases.” Marie I find this aspect of the movie’s premise and Antonio indicate that they would like fascinating for two reasons—not only to have another boy, a brother for Vincent because the film so clearly (if counterintui- to play with. The geneticist nods. “You have tively and counterfactually) disarticulates specified,” he goes on, racism from genoism, but also because it establishes Gattaca as a film about civil hazel eyes, dark hair, fair skin. I’ve taken rights and employment discrimination. the liberty of eradicating any potentially Disability in science fiction is not often dis- prejudicial conditions—premature bald- cussed in such mundane terms, but perhaps ness, myopia, alcoholism and addictive it should be. Readers of Philip K. Dick will susceptibility, propensity for violence and remember that one of the things that got obesity— lost in translation between the 1969 novel MARIE: We didn’t want—I mean, diseases, Do Androids Dream of Electric Sheep?and yes, but— the 1982 film Blade Runner is the category ANTONIO: Right, we were just wondering if it’s of human “specials,” people neurologically good to leave just a few things to chance. GENETICIST: You want to give your child the damaged by the nuclear fallout of World best possible start. Believe me, we have War Terminus and derisively referred to enough imperfection built in already. Your as “chickenheads” or, in severe cases, child doesn’t need any additional burdens. “antheads.”1 The Voigt-Kampff empathy And keep in mind, this child is still you— test, central to both the novel and the film, simply the best of you. You could conceive is a device bounty hunters (“blade run- naturally a thousand times and never get ners”) employ to distinguish humans from such a result. androids trying to pass as human; it was originally devised, as Dick’s novel explains, The geneticist smiles indulgently when he to identify “specials” so that they could be refers to the parents’ preference for “fair sterilized and consigned to the lower ech- skin,” because, as it happens, he himself is elons of society. Blade Runner drops Dick’s black (he is played by Blair Underwood). treatment of the relation between disabil- By this we are led to understand that in ity and employment by taking the novel’s this brave new world, genetic discrimina- despised and lonely “chickenhead,” J. R. tion is common but racial discrimination Isidore, a driver for an artificial animal is a thing of the past. The point is rein- repair shop, and rewriting him as J. F. Sebas- forced a few minutes later, when Vincent tian, a lonely high-ranking engineer for the recounts his experience as a young man Tyrell Corporation (though the film does seeking employment: “Of course,” he tells give Sebastian another disability, “Methu- us, “it’s illegal to discriminate—genoism, saleh syndrome,” a premature-aging disor- it’s called—but no one takes the law seri- der that effectively links him to the Nexus- ously. If you refuse to disclose, they can 6 androids who have lifespans of only four always take a sample from a door han- years). Gattaca, by contrast, builds its plot dle, or a handshake, even the saliva on around the relation between employ- your application form. If in doubt, a legal ment and disability; its central drama DISABILITY, DEMOCRACY, AND THE NEW GENETICS | 103 focuses entirely on whether Vincent will be a ‘really disabled’ person, someone who fits discovered and thrown out of work and into our social stereotype of what a crip is. In the jail. That drama of detection and evasion, in end, despite its possibilities, Gattaca doesn’t turn, transforms the relation between race really challenge the terms of the debate. It and disability into one of mutual implica- tells us that with hard work and ‘spirit’ we can overcome, but it still leaves intact a divi- tion: once it becomes inescapably clear that sion between ‘us’ and ‘them,’ those whose he will be unable to pursue a career in space bodies succeed and those whose bodies fail. exploration because of his genetic makeup, (Finger) Vincent decides to become a “borrowed ladder,” using the bodily fluids and efflu- Likewise, Kathleen Ellis argues that via of Jerome Morrow in order to obtain “moves such as Gattaca contribute to the the clearance necessary for employment at discrimination” against people with dis- Gattaca. Jerome (played by Jude Law) is a abilities insofar as Jerome is presented as former world-class athlete who was struck a weak, contemptible character, wallowing by a car (we learn later that he tried to kill in vodka and self-pity (Ellis). What these himself after failing to win an Olympic gold critiques overlook, however, is that Jerome medal); paraplegic and visually marked by is not bitter and suicidal because he is disa- the most common sign for physical dis- bled; he tried to commit suicide before he ability, his wheelchair, he literally sells his was disabled, solely because he had to settle genetic identity to Vincent as he descends for a silver medal, and he is bitter because into bitterness and alcoholism, finally his attempt failed: “Jerome Morrow,” he committing suicide in the film’s final tells Vincent, “was never meant to be one sequence. In other words, Gattaca is not only step down on the podium.” Jerome’s story a science-fictional exploration of employ- is not that of Million Dollar Baby, in which ment discrimination; it is also a member of an athlete decides that a physically disa- one of the oldest genres in African Ameri- bled life is not worth living; it is an illustra- can fiction, the passing narrative. tion of Sandel’s argument against genetic Scholars in disability studies have enhancement—or, as Vincent’s voiceover tended to see Jerome’s character as a puts it, a warning about “the burden of regrettable and gratuitous reinforcement perfection.” of stereotypes of disability. Anne Finger’s That said, it is notable that there are no 1998 review has largely set the terms of the accommodations for Jerome in this society: debate: arguing that the film is ultimately it is otherwise impressively high-tech, fea- “scared of the radicalness of its critique,” turing twelve-fingered pianists and space Finger suggests that Jerome’s suicide is travel to the moons of Saturn, but it does meant to reassure the contemporary able- not appear to have a single elevator, ramp, bodied audience who largely identify with or kneeling bus. Perhaps Jerome has reason Vincent and hope that they, too, would to be bitter. He does not own a power chair have the determination to fight genetic (apparently such things no longer exist), and determinism and succeed. “In its futuristic his apartment has no elevator—just a spi- world,” Finger notes, ral staircase, an echo of the double helix, by which Jerome has to drag himself upstairs virtually everyone watching the film would at a critical moment in the narrative. Nota- be classified as a ‘de-generate,’ an ‘in-valid.’ bly, there are no wheelchair users at Gatt- Rather than leave the audience members in aca Corporation, even though physical dis- the uncomfortable position of thinking of ability is clearly no impediment to becom- themselves as disabled, the film had to create ing a first-rate computer programmer 104 | MICHAEL BÉRUBÉ

or aeronautical engineer. One is left to the table (though one does not know if there infer that disability discrimination in this are abortion providers who cater to pro- society is severe indeed, though the film spective parents who conceive accidentally leaves this point implicit, just as it does not in the back seats of cars). But the film does call attention to its representation of race. raise the question of what happens to the Of course, it’s possible to say that the film embryos Marie and Antonio do not select, is simply bizarrely optimistic that a society and more importantly, it raises the ques- so obsessed with genetics will be a society tion of what conditions we should screen without racism; it certainly appears to be a for, and what we should do if and when we society composed entirely of able-bodied detect them. The larger question at stake, heterosexuals, so it is not clear why one of course, is the question of who should form of pervasive bigotry has been over- inhabit the world, and on what terms. My come while other forms seem to rule the own position on what is now called the world. But let me turn from the implicit ethics of “selective abortion” with regard aspects of the film to the film’s explicit to fetuses with disabilities is substantially presentation of what counts as uncontro- identical to that of the 1999 Hastings Center versial genetic screening in this society: Report on the Disability Rights Critique of the elimination of all major inheritable Prenatal Genetic Testing (Parens and Asch diseases, as well as “potentially prejudicial 2000), which defended reproductive rights conditions” such as premature baldness, and prospective parents’ access to prenatal myopia, alcoholism and addictive suscep- screening while critiquing the idea that the tibility, propensity for violence, and obes- detection of genetic anomaly is a self-evi- ity. When Victor’s mother demurs, saying dent justification for terminating a preg- “we didn’t want—I mean, diseases, yes,” nancy.2 Though I do not consider disability surely the phrase she’s thinking of and sufficient grounds for abortion, I believe not uttering is something like “a designer that the fetus does not have a moral status baby.” Which is, of course, precisely what equivalent to that of a child unless and until she gets—still you, just the best of you. And it is viable outside the womb, and I support the reason she goes along with it is that the right of prospective parents to termi- her child doesn’t need any additional bur- nate pregnancies even for reasons that I dens—especially barriers to meaningful would regard as trivial or wrongheaded. education and employment. Rayna Rapp’s Testing Women, Test- The Gattaca scenario presents a chal- ing the Fetus is replete with accounts of lenge especially to liberals who (like me) such parents, including the one who told have thus far combined political support Rapp that “having a ’tard, that’s a bum- for reproductive rights, a defense of tech- mer for life” (91) or the one who insisted nologies of prenatal screening, a critique that if the baby “can’t grow up to have a of cost-benefit analyses of human worth, shot at becoming the president, we don’t a stringent skepticism about the workings want him” (92)—in regard to a fetus with of the United States’ deeply inegalitarian Klinefelter’s syndrome, on the basis of insurance and health care system, and, whose diagnosis the parents terminated last but not least, a defense of a aggressive the pregnancy. I remain unpersuaded that social welfare state that provides need- there are transcendent moral virtues to be based benefits to children and adults with advanced by compelling such parents to disabilities. Granted, abortion is not an bear children with disabilities, even though issue in Gattaca, precisely because IVF and the disabilities in question are relatively genetic screening seem to have taken it off benign; indeed, I shudder to think how DISABILITY, DEMOCRACY, AND THE NEW GENETICS | 105 such parents will treat their disabled chil- ability. The second is the need to support dren if they compelled to bear them against adequate, nonstigmatizing, integrative their will. Nor do I see why it is virtuous to services for all the children, including disa- compel parents to bear children with far bled children, that women bear” (7–8). The more severe conditions that involve pro- difficulty of balancing these needs is exem- found physical and emotional suffering plified by the excruciating tensions in Ruth for all concerned, such as Lesch-Nyhan Hubbard’s essay, “Abortion and Disabil- syndrome or Tay-Sachs disease; I submit ity: Who Should and Should Not Inhabit that in a democratic society it is better to the World?”, which insists—four times, for allow prospective parents to make such good measure (three times emphatically in decisions for themselves. For that reason I the course of its seven final paragraphs)— have insisted (and continue to insist) that that “a woman must have the right to abort it is more consistent with the principles of a fetus, whatever her reasons” while argu- democracy for people like me to persuade ing that some of those reasons are (a) con- prospective parents and genetics coun- tinuous with the logic of Nazi eugenics selors not to think of amniocentesis as part and (b) influenced by forces that appear of a search-and-destroy mission, and to to undermine Hubbard’s faith that a wom- persuade them that many people with dis- an’s reasons can be her own. “Women abilities, even those disabilities detectable are expected to implement the society’s in utero (like Down syndrome), are capa- eugenic prejudices by ‘choosing’ to have ble of living lives that not only bring joy the appropriate tests and ‘electing’ not to and wonder to those around them but are initiate or to terminate pregnancies if it fulfilling and fascinating to the people liv- looks as though the outcome will offend,” ing them as well. But I will not argue that Hubbard writes, pointedly questioning the some forms of childbirth should be made choices she does not endorse by employ- mandatory, nor will I demand that pro- ing scare quotes to suggest that they are spective parents be barred from obtaining not “choices” at all. “And to a considerable genetic information about the fetus if they extent not initiating or terminating these so desire such information. pregnancies may indeed be what women As Rapp writes, “at the intersection of want to do. But one reason we want to is the disability rights movement and the that society promises much grief to par- feminist movement for reproductive rights ents of children it deems unfit to inhabit lies a thorny problem: How is it possible to the world” (78). What’s striking about Hub- contest the eugenic and stigmatizing defi- bard’s argument is not only that it discounts nition of disabilities which seems to under- the decisions of prospective parents whose lie prenatal diagnosis, while still upholding justifications for abortion she (and I) might the rights of individual women to deter- find trivial or wrongheaded, suggesting mine what kind of medical care, and what that such decisions are imposed by “soci- sorts of pregnancy decisions, are in their ety” and on a continuum with Nazism, but own best interests?” (51) Rapp eventually also, and more remarkably, that it man- crafts two moral imperatives—as well as ages to criticize women who choose not to the meta-imperative to see these two as become pregnant in the first place—who complementary rather than contradic- do not “initiate” pregnancies—in an essay tory: “The first is the need to champion ostensibly devoted (as its title indicates) to the reproductive rights of women to carry abortion and disability. But surely a demo- or refuse to carry to term a pregnancy that cratic society can find some way of honor- would result in a baby with a serious dis- ing and respecting the decisions of women 106 | MICHAEL BÉRUBÉ

who do not want to pass a genetic disabil- ket, on a European model,” where “which ity on to their children. And one does not choices, if any, should be excluded would (by which, of course, I mean I do not) want be part of democratic debate” (77), sees no to see disability rights advocates elide the problem with eliminating many “poten- difference between abortion and contra- tially prejudicial conditions”: “Eliminating ception, so that they wind up taking the a genetic disposition to shyness or laziness position Hubbard suggests here—that the might help someone flourish, as might decision not to initiate a pregnancy, for making them more cheerful or boosting reasons related to disability, is as censur- their ability to sing or to learn languages” able as the decision to terminate one. (75–76). In Glover’s ideal regulated-market For the moment, our society seems democracy, apparently, a social consensus to have achieved a shaky but substantial has been achieved that it is acceptable to consensus that it is morally acceptable to tinker with character traits like shyness or screen fetuses for profoundly debilitat- cheerfulness, just as it goes without saying conditions such as Tay-Sachs disease, ing in the world of Gattaca that we should which involves severe and ceaseless suf- screen for premature baldness—despite fering over a nasty, brutish, and short life the fact that the genetic counselor himself span, but morally unacceptable to termi- is bald (and, in my humble opinion, rather nate a pregnancy solely with regard to gen- attractively so). My students have over- der.3 Everything else—Down syndrome, whelmingly found Glover’s position repug- Huntington’s disease, multiple sclerosis, nant, arguing that such traits as laziness and leukemia—falls at various points in the shyness do not rise to the level of diseases capacious area between, and thus far the one would want to delete from the random people of the United States have appar- reconfigurations of our genetic possibili- ently decided to leave decisions concerning ties. (Some argue, however, along Sandel’s such conditions up to the people who will lines, that it is acceptable to intervene phar- be most affected by them. But the Gattaca maceutically to bring someone to a base- scenario compels us to ask which “poten- line of health, as when one is prescribed tially prejudicial conditions” we would medication for severe and debilitating shy- allow prospective parents to eliminate if ness, anxiety, or depression.) Interestingly, the technology were available. That is to however, many of my students report that say, even in the not-too-distant-future, we they would welcome a genetic test that might feel a profound moral repugnance at would screen for “propensity to violence,” the idea of terminating a pregnancy simply considering this a trait well worth deleting on the basis of the finding that the fetus whenever possible. Upon noting that in has a genetic propensity for obesity, myo- class after class, my female students were pia, or premature baldness. But if we could nearly unanimous on this point, I began select against these features at fertilization, to reflect on the question of gendered vio- would we do so, and what moral grounds lence (which, I realized, had been implicit would we offer for refusing to do so and in the discussions all along), and to suggest preventing others, by law, from doing so? to students that this is one of the questions In recent years I have taught Gattaca posed to us by Margaret Atwood’s Oryx and alongside Sandel’s The Case Against Perfec- Crake: though Crake’s attempt to redesign tion and Jonathan Glover’s Choosing Chil- the human species from scratch is mon- dren: Genes, Disability, and Design, noting strous—he is, after all, Victor Frankenstein that Glover, in the course of an argument for as sophisticated genetic engineer—there genetic enhancement in “a regulated mar- is surely something to be said for a world DISABILITY, DEMOCRACY, AND THE NEW GENETICS | 107 in which there is “no more prostitution, no social welfare state to stigmatized popula- sexual abuse of children, no haggling over tions while working also to de-stigmatize the price, no pimps, no sex slaves. No more previously stigmatized identities (as had rape” (165). been done, evidently, with regard to people My own answer to the question of how we of African descent in the world of Gattaca). might determine how and why to screen for The debate would produce a boundary genetic traits, tentative though it be, runs as of the unacceptable, just as we now have follows. In a world that possesses the kind agreement on the desirability of forbidding of genetic knowledge we envision in Gat- human cloning to produce children and a taca, bioethicists, philosophers, Presiden- looser agreement on the permissability but tial commissions, and humanists like me undesirability of selective abortion for gen- would have made the argument that while der. And in democratic fashion, the debate it is acceptable to screen for major inher- would seek to honor liberal freedoms and itable diseases, screening out the “poten- ideas of individual autonomy in deci- tially prejudicial conditions” enumerated sion-making while insisting nonetheless, above—even the propensity for violence— as both Mill and Rawls would tell us, that would be highly controversial and far from democracy does not have to honor all the routine. Our society would have had, and preferences and desires of every person would still be engaged in, a wide-ranging participant therein. debate about what kinds of disabilities do It pains me deeply to admit it, but in such involve profound suffering or significantly a society, the vast majority of people with diminished life chances for those who have Down syndrome would be those among them, and (by contrast) what varieties of the “faith births,” those conceived without human embodiment may be undesirable the benefits of IVF and genetic screening. or inconvenient but, on the whole, do not There would still be a good number of Deaf constitute conditions so prejudicial as to people in this society, despite screening jeopardize significantly the life chances of and despite the widespread availability those who have them. Such a debate would of cochlear implants, partly because our acknowledge, moreover, that many dis- social debate would have concluded that abilities are not detectable genetically, and Deafness is far less damaging to one’s life that no amount and no degree of prenatal prospects and one’s ability to participate screening or in vitro engineering will pro- fully in the social and political life of the duce a world free of people with cerebral polity than is Down syndrome, and partly palsy, autism, or pneumonia, not to men- because some of our fellow humans (Deaf tion people who are hit by cars.4 Some of the and hearing) would have determined that debate’s participants would have learned Deaf culture is valuable, distinctive, and not to think of disability as synonymous worth preserving in its own right, and that with disease, and would continually try to it has no linguistic or cultural counterpart persuade other participants that not all dis- among people with Down syndrome. I abilities have disease etiologies and not all say this not because I desire to see a world disabilities need to be considered in terms absent of people with Down syndrome; of cure or elimination (though in many I cannot even imagine what it would be cases, amelioration might be perfectly like to desire such a thing. But I can imag- acceptable).5 And finally, such a debate ine that if we had the power to screen for would focus not only on potentially preju- major disabilities, inheritable diseases, and dicial conditions but on actually existing potentially prejudicial conditions, many prejudices, extending the protection of the (but by no means all) of my fellow humans 108 | MICHAEL BÉRUBÉ

would see the elimination of Down syn- embryo, for that is what “all along” must drome as a social good; fewer would see mean) and deserves all the protections the eradication of Deafness as a good; and associated with ideas of inviolable human fewer still would see the eradication of dignity, and those who disagree are simply myopia or baldness in those terms. Such blowing out the moral lights among us.7 would be, on my best guess, the results of When that hard-line position on nas- a democratic deliberation about disability cent human life becomes part of a broader and genomics.6 democratic deliberation, it produces dis- Yet one of the factors that makes this distinctive distortions that can skew debate cussion so difficult is the fact that, as I men- decisively. Take for instance the delibera- tioned at the beginning of this essay, some tion conducted by President George W. of us do not agree that societies should Bush’s Council on Bioethics, published decide such matters by democratic delib- under the title Human Cloning and Human eration. The debate over genetic screen- Dignity: An Ethical Inquiry. That Council ing, other words, necessarily includes the unanimously endorsed a ban on “repro- voices of those who do not believe that it ductive cloning,” which the Council called should be taking place, or who believe that “cloning-to-produce-children,” and, by a it should take place but that it should not complicated ten-to-seven margin, a four- be morally binding or dispositive when year moratorium on “therapeutic cloning,” it comes into conflict with moral abso- which the Council called “cloning-for-bio- lutes. Those moral absolutes concern medical-research.” As Council chairman the destruction of “nascent human life,” Leon Kass argued in The Public Interest, whether by means of abortion, by means the Council construed the debate over of the discarding of embryos not selected cloning-for-biomedical-research as a clash for implantation (three out of four of Marie between competing moral imperatives: and Antonio’s options), or by means of the use of embryos for stem-cell research. For On the one hand, we acknowledge that the example, in a discussion of Life As We Know research offers the prospect, though specu- It for the Christian book review Books and lative at the moment, of gaining valuable Culture, Jean Bethke Elshtain responded to knowledge and treatments for many dis- my defense of abortion rights and prenatal eases. On the other hand, this practice would require the exploitation and destruction of testing by accusing me of “subtly but inex- nascent human life created solely for the orably blowing out the moral lights among purpose of research. us, as Lincoln said of Douglas’s defense (40) of popular sovereignty in the matter of slavery” (18). I find this remark at once This seems to me a reasonable statement exceptionally offensive and insufficiently of the conflict, even though the second morally serious, partly because it rests sentence is almost a word-for-word rep- on Elshtain’s remarkably unelaborated etition of Charles Krauthammer’s partisan claim that “the fetus, of course, is human account of the debate in his personal state- all along—what else can it be?” For Elsh- ment in the report’s Appendix. Yet within tain, apparently, there can be no debate only a few sentences, Kass reframes it in a about the morality of prenatal screening way that can only be called tendentious: and selective abortion, because there can be no debate about the moral status of the Each side recognized that we must face up to fetus: there is one correct position, that the the moral burden of either approving or dis- fetus is fully human (even as a zygote and approving this research, namely, on the one DISABILITY, DEMOCRACY, AND THE NEW GENETICS | 109

hand, that some who might be healed more and where there remains great uncertainty. rapidly might not be; and on the other hand, A national discourse on this subject has not that we will become a society that creates yet taken place in full, and a moratorium, and uses some human lives in the service of by making it impossible for either side to others. cling to the status-quo, would force both (40) to make their full case before the public. By banning all cloning for a time, it allows us to Note what has happened between these seek moral consensus on whether or not we two passages: both hands have changed should cross a major moral boundary (cre- substantially. On the one hand, at first we ating nascent cloned human life solely for had speculative research that offers the research) and prevents our crossing it with- prospect of treating many diseases; but out deliberate decision. It would afford time now, blocking that research means only for scientific evidence, now sorely lacking, to that “some who might be healed more rap- be gathered—from animal models and other avenues of human research—that might give idly might not be,” and not that “some who us a better sense of whether cloning-for-bio- might be healed will never be.” On the other medical-research would work as promised, hand, at first we were faced with the admit- and whether other morally nonproblematic tedly dicey prospect of “the exploitation approaches might be available. and destruction of nascent human life”; (xxxvi) but now if we permit cloning-for-biomedical-research “we will become a society that In one respect the statement is question- creates and uses some human lives in the begging, insofar as it presumes the very service of others,” and there is no longer point that needs to be argued—namely, anything “nascent” about the embryo. that cloning for biomedical research The reason the President’s Council did involves crossing a major moral bound- not advocate an outright ban on cloning- ary. This claim is precisely what many for-biomedical-research is that it could not proponents of stem-cell research wish to get a majority of its members, even among contest. But the ancillary claim that bio- those who oppose abortion as a matter of medical research itself might benefit from principle, to agree that such cloning con- this moratorium is simply disingenuous, stituted an exploitation and destruction of as Council member Elizabeth Blackburn human life in the sense that five-day-old pointed out in her personal statement in embryos bear the same moral weight as the Appendix to the report: “It may sound do five-month-old fetuses or five-year-old tempting,” Blackburn wrote, “to impose children or fifty-five-year-old adults. Social a moratorium to get more information, conservative James Q. Wilson, for instance, since, despite very promising results, it is held to a position that would permit “bio- true, at this early stage of the research, that medical research on cloned embryos pro- we still know only a little. But that informa- vided the blastocyst is no more than four- tion can only be gained by performing the teen days old and would not allow implan- same research that the moratorium pro- tation in a uterus, human or animal” (297). poses to halt” (246). Nor is it clear—and The Council settled therefore for a mora- this is the distorting effect I mentioned torium that, as the report’s executive sum- above—that the appeal to “further demo- mary puts it, cratic deliberation” is not a stalling tactic: provides time for further democratic deliber- since the nation remains divided between ation about cloning-for-biomedical research, people who believe that stem-cell research a subject about which the nation is divided is legitimate and people who believe it is 110 | MICHAEL BÉRUBÉ

immoral, there is no “moral consensus” to Genetic Maps and Human Imaginations, or be had, and therefore no need for a waiting one might say (as I will proceed to) that the period during which such a consensus can old eugenics saw the human population as be allowed to form. an aggregate of various ethnic and racial Perhaps, then, the Council’s appeal to traits some of which were not beneficial to democratic deliberation might be under- the enlightened propagation of the species, stood cynically as a temporizing move that whereas the new eugenics sees individuals will allow pro-life proponents to marshal as aggregates of biochemical traits some of their arguments and their social forces. which are not beneficial to the families or Should that happen, and should we find populations in which they occur. I believe ourselves living in a society whose demo- that this molecular view of the human is cratic deliberations wind up by banning inadequate and incomplete, partly because stem-cell research, then we will have genetics is an inexact science, a science of become a society in which the value placed probabilities in which we cannot be sure on the moral status of the human embryo how a biochemical predisposition may trumps all other considerations, including express itself, and partly because we have the moral injunction to alleviate plausibly limited but conscious, self-reflexive control remediable suffering. It is altogether possi- over how we express some of the traits with ble to achieve such a society by democratic which we are born. (This too is one of the means, and I want to argue strenuously lessons of Gattaca, unfortunately summed against it, for it would install essentially up by the movie’s tag line, “there is no gene theocratic views about human life at the for the human spirit”: much depends on center of moral debate. what one does with the genetic hand one Having made clear my antipathy to the- is dealt.) It is one thing, in other words, to ocratic conceptions of human life, I should promote genetic research on the grounds immediately make it clear that I am by no that it will eradicate Tay-Sachs or Hunting- means sanguine or unworried about the ton’s or Alzheimer’s; I would regard each life prospects for people with disabilities of these as a universal, species-wide good in a society in which it is widely assumed comparable to the universal species-wide that identifiable disabilities should either good of eradicating smallpox or tubercu- be cured or prevented. For the Gattaca losis or HIV. But it would be foolish and scenario is just another vision of the world destructive, I think, to think of individuals of eugenics, and the world of eugenics is as agglomerations of traits like “propen- already too much with us. On this count, sity to become impatient,” “sense of how contemporary professions of good faith to arrange a room” or “ability to memorize among geneticists are no guarantee that geographical maps”—or shyness, or lazi- they’ve learned the lessons of history. As ness, or plumb-cussedness—and to try Dorothy Roberts argues in Killing the Black to order an individual’s genetic makeup Body, the discourse of eugenics is not really accordingly.8 “history” at all, and certainly not ancient And yet this is what the libertarian posi- history. And yet the new eugenics is not tion on genetic engineering would invite precisely the same as the old. Our era differs us to do. For bioethicists such as Julian from the era of the Kansas State Fair in crit- Savulescu and Nicholas Agar, the Gattaca ically important ways: one might call these scenario represents not a dystopia but a “public” and “private” eugenics, or one utopia, in which prospective parents have might call them macro and micro eugen- the opportunity and the obligation to avail ics, as Barbara Katz Rothman has done in themselves of the technology that will allow DISABILITY, DEMOCRACY, AND THE NEW GENETICS | 111 them to design the “best” possible child— however, was that its conservative and lib- still you, just the best of you. For advo- ertarian advocates championed it as a law cates of what Sandel calls forms of “liberal that would free people with disabilities eugenics,” the evil of eugenics as practiced from dependence on the state. For them, in the first decades of the twentieth cen- the purpose of this public law was to return tury was not that it was eugenics, but that individuals with disabilities to the realm the policies of involuntary sterilization and of the private. The second paradox is this: institutionalization represented forms of for people involved with disability, even coercion visited on individuals by the state. for those of us who support reproductive “Private” eugenics, from this standpoint, is rights, there is no realm of the private. Dis- not an evil at all; it consists simply of indi- ability is always and everywhere a public viduals, in various familial arrangements, issue, a matter for public policy, even or making rational decisions about what is especially for political thinkers who oth- best for them and their children. In demo- erwise have no conception of the pub- cratic deliberation over genetics and disa- lic good. I want to suggest, then, that one bility, therefore, I will want to argue against way to think about disability, democracy, both the theocratic and the libertarian posi- and genetics is to imagine that the public tions, the former because I believe it has is not public enough and the private is not an inadequate account of the social basis private enough. Those of us who support of moral debate and the latter because I reproductive rights and a woman’s right believe it has an inadequate account of to prenatal testing and stem-cell research the social good. Additionally (and, I think, and the egalitarian provisions of the wel- tellingly), in some circumstances the lib- fare state need to make the argument that ertarian position can rely on beliefs about intimate decisions about childbearing and eugenics that are not merely untroubled care for people with disabilities should by history but also hostile to disability. It be protected from state coercion yet sup- is as if individual choices about genetic ported by the state’s apparatus of social enhancement are just fine, but decisions welfare; at the same time we need to make to screen for disability, rather than against, the argument that the state’s apparatus of require state regulation. Or, perhaps, it is social welfare should seek to enhance the as if some libertarians tend to imagine that independence of people with disabilities everyone who is allowed to design a child from the state, but in order to do so must will share a moral consensus that disability recognize the very real dependencies asso- is to be avoided or eliminated—that it is, as ciated with some disabilities, and must Jonathan Glover writes, to be “contrasted expand and enhance the roles of state- with human flourishing” (88), if not indeed funded dependency workers. These are inimical to human flourishing. matters to be determined by democratic I draw from these debates two political deliberation, a deliberation that must paradoxes. The first is this: many of the include the voices of people with disabili- people who supported the passage of the ties, their advocates, their family members, Americans with Disabilities Act of 1990 surrogates, and guardians. On one side of were, like White House counsel C. Boyden this deliberation, people like me will engage Gray, diehard antistatist conservatives, with moral absolutists for whom one value, deeply opposed to gender-equity initia- one religious interpretation of human life, tives and race-based affirmative action and will always supersede all others; on the civil rights laws generally. The reason that other side, we will engage with moral abso- the ADA enjoyed such bipartisan support, lutists for whom one value, the value of 112 | MICHAEL BÉRUBÉ

individual freedom from state regulation, for Tay-Sachs, I submit that we have achieved will supersede all others—except when some consensus on the acceptability of doing some individual decisions about disability so. 4. This was my argument in “We Still Don’t Know impose social costs on other individuals. What ‘Normal’ Really Is,” and here I fondly This dual engagement, I submit, is central hope that the argument has won broad popular to the challenge of thinking democratically agreement—not an unreasonable hope, I submit, about disability in the age of genomics. insofar as the proposition that many disabilities are undetectable has the virtue of being true. 5. For two regrettable examples of how disability is elided with and collapsed into disease, see NOTES Glover’s analogy between disability and cancer (35) and Dan Hurley’s repeated references 1. Critics seem not to have noticed that disability is to Down syndrome as a “disease” in his New pervasive in the work of Philip K. Dick. Martian York Times Magazine essay, “A Drug for Down Time-Slip features a largely nonverbal character Syndrome.” My critique of Glover on this count with autism (understood in 1964, both by can be found in “Humans, Disabilities, and the Dick and the DSM-III, as a form of “childhood Humanities?” schizophrenia”) who subtly controls the plot 6. At present, as Amy Julia Becker points out, “only and warps the narrative; he, like many of Dick’s 2 percent of all women seek a definitive diagnosis “precogs,” can see the future only because they of Down syndrome or other chromosomal are anomalies akin to mutants. And in Total abnormalities through amniocentesis or Recall, the film version of “We Can Remember It chorionic villa sampling during pregnancy. for You Wholesale,” the mutants on Mars are the But of the women who receive that definitive result of genetic anomalies induced by exposure diagnosis, the vast majority (90 percent) choose to radiation; they are the turbinium miners who to terminate their pregnancies.” The fear, which were not given adequate protection from cosmic I believe to be well-founded (and which I share), rays by their employers. If Gattaca is a film about is that more prospective parents will screen for disability-related discrimination, Total Recall Down syndrome if they can do so in the first is a film about employment-related disability. trimester of pregnancy and without the risk of The “mutants” may have exotically anomalous miscarriage associated with amniocentesis. See, bodies and minds (and at least one of them e.g., Pollack (both essays). possesses psychic powers), but they are basically 7. I call Elshtain’s remark “offensive” not simply Martian versions of coal miners with black lung because I disagree with it, but because I believe it disease. falls short of the standard of intellectual honesty 2. Apparently the feeling is mutual, insofar as the one should expect in serious debate. First, Hastings Center report cites Life As We Know It Elshtain ignores passages in which I explicitly approvingly at crucial moments in its argument. say things like “a fetal diagnosis of Down 3. This is not to say that a child with Tay-Sachs syndrome should not be understood, either by falls under the infamous Nazi category of “life medical personnel or by parents, as a finding unworthy of life.” I do not believe that any to which abortion is the most logical response” human being has the capacity or the right to (79). Second, Elshtain argues that I caricature the so designate another human being. (For a pro-life position: compelling account of what it is like to care for a young child with Tay-Sachs, see Emily Rapp, Bèrubè’s [sic] cardboard cutout pro-life “Notes From a Dragon Mom.”) It is simply to politician denies rights to living persons. One acknowledge that the Chevra Dor Yesurim wonders who does this. Who are these people? Program (“Organization for the Generations”) He calls the implications of holding that humans was, as Rapp notes, “originally developed by an have a right to life “only until they’re born” Orthodox rabbi living in Brooklyn who had lost staggering, and this would be true if anybody three children to Tay-Sachs disease” (157). Rapp held to that view. But I can’t think of a single writes, “modern biomedical genetic technology pro-lifer who does, certainly not to judge from here undergirds and enhances a traditional the literature I received from a number of pro- patriarchal practice” (157)—namely, arranged life groups. marriage. Insofar as no American conservative (18) (or liberal) spokesperson has denounced any Orthodox Jewish organization for screening I submit that Elshtain is too intelligent to intend DISABILITY, DEMOCRACY, AND THE NEW GENETICS | 113

this as a serious argument. Surely she is aware own family. The first pertains to me, the second of pro-life politicians who support the death to my partner Janet, and the third to both our penalty. Take the example of the Texas pro-life children—the one with Down syndrome and the politician who not only executed dozens of living one without. persons in his home state but publicly mocked one such person’s pleas for clemency. Is he the only pro-life politician who believes that the WORKS CITED state can take the life of a person? And whatever became of him, anyway? Atwood, Margaret. Oryx and Crake. New York: An- Last, and far more seriously, Elshtain chor, 2003. illegitimately interpolates her own words into Becker, Amy Julia. “Has Down Syndrome Hurt Us?” a passage she cites, severely misconstruing the New York Times blog, “Motherlode: Adventures in passage in the process: Parenting.” Published under the byline of Lisa Bel- kin. 3 Oct. 2011. http://parenting.blogs.nytimes. If you had told me in August 1991—or, for that com/2011/10/03/has-down-syndrome-hurt-us/ matter, after an amniocentesis in April 1991— Bérubé, Michael. Life As We Know It: A Father, a that I’d have to feed my infant by dipping a Family, and an Exceptional Child. New York: Pan- small plastic tube in K-Y jelly and slipping it into theon, 1996. his nose and down his pharynx into his teeny ——. “We Still Don’t Know What ‘Normal’ Is.” The tummy, I’d have told you that I wasn’t capable Globe and Mail 3 Mar. 2007: F8. of caring for such a child. [In other words, had ——. “Humans, Disabilities, and the Humanities.” they had amniocentesis, they would likely have On the Human: A Project of the National Humani- opted for abortion.] But by mid-October, I felt as ties Center. 17 Jan. 2011. http://onthehuman. if I had grown new limbs and new areas of the org/2011/01/humans-disabilities-humanities/. brain to direct them. Ellis, Kathleen. “Reinforcing the Stigma: The Rep- (89; Elshtain’s addition in brackets) resentation of Disability in Gattaca.” Australian Screen Education 32 (2003): 111-14. There are three things wrong with this Elshtain, Jean Bethke. “Idiots, Imbeciles, Cretins.” interpolation. First, most children with Down Books and Culture: A Christian Review 4.1 (Janu- syndrome do not require such care as this; ary/February 1998): 18. therefore, amniocentesis would not have “told” Finger, Anne. “Invalids, De-generates, High-Tech us that we would need to feed Jamie with a gavage Zombies and Old-Fashioned Hollywood Crip- tube. Second, the bracketed sentence allows ples.” Electric Edge: Web Edition of The Ragged Elshtain to ignore my discussion of prenatal- Edge, Jan/Feb 1998. http://www. ragged-edge- care counseling and the provision of prospective mag.com/jan98/movie01.htm. parents with information about disabilities Gattaca. Dir. Andrew Niccol. Perf. Ethan Hawke, Uma on pages 67-88 of my book. The reason that’s Thurman, Jude Law. Columbia/Tristar, 1997. important, in turn, is that my discussion of Glover, Jonathan. Choosing Children: Genes, Disabil- prenatal testing is targeted in part at genetics ity, and Design. Oxford: Oxford U P, 2006. counselors, whom I am trying to persuade not Hubbard, Ruth. “Abortion and Disability: Who Should to think of the detection of trisomy-21 as a and Should Not Inhabit the World?” Disability search-and-destroy operation. Third, I am also Studies Reader (this volume). 4th ed. Routledge, trying here to persuade prospective parents 2013. not to decide in advance that they cannot care Hurley, Dan. “A Father’s Search for a Drug for Down for a child with disabilities. Before Jamie was Syndrome.” New York Times Magazine 31 Jul. 2011. born, I did not know how to feed an infant with http://www.nytimes.com/2011/07/31/magazine/ a gavage tube, and I would have been terrified a-fathers-search-for-a-drug-for-down-syndrome. at the thought; after he was born, I learned how html?_r=1. to do it, just as I learned to care for my first child Kass, Leon. “The Public’s Stake.” Introduction to without knowing how beforehand. Elshtain’s “in “Biotechnology: A House Divided.” Symposium other words” gets this important point exactly with Diana Schaub, Charles Murray, William A. wrong. Galston, and J. Bottum. The Public Interest 150 8. I choose the traits “propensity to become (Winter 2003): 38-62. impatient,” “sense of how to arrange a room, Parens, Erik, and Adrienne Asch, eds. Prenatal Testing and “ability to memorize geographical maps” and Disability Rights. Hastings Center Studies in because these traits happen to describe my Ethics. Washington, DC: Georgetown U P, 2000. 114 | MICHAEL BÉRUBÉ

Pollack, Andrew. “A Less Risky Down Syndrome Test is Rapp, Emily. “Notes from a Dragon Mom.” New York Developed.” New York Times 17 Oct. 2011. http:// Times 16 Oct. 2011: SR12. http://www. nytimes. www.nytimes.com/2011/10/18/business/seque- com/2011/10/16/opinion/sunday/notes-from-a- nom-test-for-down-syndrome-raises-hopes-and- dragon-mom.html questions.html?pagewanted=all Rapp, Rayna. Testing Women, Testing the Fetus: The ——. “The Quandary Posed by a New Down Syn- Social Impact of Amniocentesis in America. New drome Test.” New York Times blog, “Prescriptions: York: Routledge, 1999. The Business of Health Care.” 18 Oct. 2011. http:// Roberts, Dorothy. Killing the Black Body: Race, Re- prescriptions.blogs. nytimes.com/2011/10/18/the- production, and the Meaning of Liberty. New York: quandary-posed-by-a-new-down-syndrome- Pantheon, 1997. test/ Rothman, Barbara Katz. Genetic Maps and Human The President’s Council on Bioethics. Human Cloning Imaginations: The Limits of Science in Understand- and Human Dignity: An Ethical Inquiry. Washing- ing Who We Are. New York: W. W. Norton, 1998. ton, DC: The White House, 2002. http://bioethics. Sandel, Michael. The Case Against Perfection: Ethics georgetown.edu/pcbe/reports/cloningreport/ in the Age of Genetic Engineering. Cambridge: Har- pcbe_cloning_report.pdf vard U P, 2007. CHAPTER 9

A Mad Fight: Psychiatry and Disability Activism Bradley Lewis

In the late summer of 2003, six people gath- dominates mental health treatment in the ered at a small building in Pasadena, Califor- West. nia and starved themselves for twenty-two In demanding this evidence, the strikers days. The small group of hunger strikers were taking a risk. Using a hunger strike to were later joined by over a dozen “solidar- challenge psychiatry and its scientific find- ity strikers” around the world. Their strike ings (which are now almost ubiquitously was about “human rights in mental health” accepted throughout the medical world and, in particular, it sought to protest the and wider culture), the protestors faced “international domination” of biological the possibility of being labeled “mad”— approaches to psychiatry and the ever-in- after all, isn’t psychiatry a science? Shouldn’t creasing and widespread use of prescrip- scientific questions be decided in laboration drugs to treat “mental and emotional tories and in peer-reviewed articles filled crises” (Mindfreedom, July 28, 2003). with graphs and statistical analysis? What The hunger strike caught the attention sense does it make to hold a hunger strike of the LA Times, The Washington Post and, to challenge contemporary scientific be- most important for those involved, the at- liefs? tention of the American Psychiatric Associ- The hunger strikers took the risk be- ation (APA). One of the central aims of the cause, indeed, they are mad. They are all strike was to challenge the main institu- members of a psychiatry disability activist tions in psychiatry—namely the American group known among their friends and al- Psychiatric Association, the National Alli- lies as “Mad Pride.” This activist group is an ance of the Mentally Ill (NAMI) and the U.S. international coalition devoted to resisting Surgeon General—and to rouse them into and critiquing clinician-centered psychi- providing “evidence that clearly establishes atric systems, finding alternative and peer- the validity of ‘schizophrenia,’ ‘depression’ run approaches to mental health recovery, or other ‘major mental illnesses’ as biologi- and helping those who wish to do so mini- cally-based brain diseases” (Mindfreedom, mize their involvement with current psy- July 28, 2003). The fasters demanded evi- chiatric institutions. They affectionately dence that mental and emotional distress call themselves “Mad Pride” because they results from “chemical imbalances” in the believe mainstream psychiatry over exag- brain; a view that underpins the biopsychi- gerates psychic pathology and over en- atric medical model and which currently forces psychic conformity in the guise of 116 | BRADLEY LEWIS

diagnostic labeling and treatment—which It leads to a ubiquitous medicalization that all too often comes in the form of forced or legitimizes the medical infrastructure for manipulated hospitalizations, restraints, acquiring knowledge about the disabled seclusions, and medications. Like the cel- individual. The logic of this medical infra- ebratory and reappropriative uses of the structure rests on notions of normality and terms “Crip,” “Queer,” and “Black Pride,” the dichotomy between normal and path- the term “Mad Pride” overturns traditional ological. The able-bodied and the disabled, distinctions and hierarchies. It signifies a the valued and the devalued, become co- reversal of standard pathological conn- constituted cultural divisions which struc- otations of “madness.” Rather than pathol- ture medical and cultural preoccupations ogizing mental difference, Mad Pride (Davis 1995). One side of the binary defines signifies a stance of respect, appreciation, the other and both operate together as “op- and affirmation. posing twin figures that legitimate a system In this chapter, I discuss the relation of of social, economic, and political empow- Mad Pride to disability studies, review the erment justified by physiological differ- history the movement, and work through ences” (Garland-Thomson 1997, 8). its contemporary struggles with psychia- Together, these stereotyped disability try. Throughout the discussion, I highlight representations direct the health care in- the importance of Mad Pride’s efforts to dustry toward a near exclusive focus on go beyond “politics-as-usual.” Mad Pride, individual biomedical cures. Rather than like other forms of “biocultural” activ- adjust social environments to meet differ- isms (such as Women’s Health Movement ing bodily needs, medical interventions and AIDS Coalition to Unleash Power), is seek to cure the individual “abnormal” located at the interface of bioscience and body. Disability activists resist these indi- politics. As such, Mad Pride continuously vidualizing and medicalizing approaches struggles with epistemological issues along by reframing disability as a social restric- with more typical political issues. In short, tion and oppression rather than simply a the people in Mad Pride struggle over both medical problem. Emphasizing a social truth and values. model rather than a medical model they This commingling of politics, power, call attention to the fact that much of the and truth is familiar ground for disabil- suffering of different bodies comes from ity studies. Similar to Mad Pride, disability social exclusion, isolation, and lack of op- studies unpacks and undermines stereo- portunity, along with the often pernicious typed representations of disability in sci- side effects of a medical industry bent on ence and popular culture to understand aggressive intervention to achieve “nor- and intervene in how “representation mal” bodies.1 attaches meanings to bodies” (Garland- The task of undermining stereotyped Thomson 1997, 5). Michael Oliver gives a representations of individualism, medi- good sense of these stereotyped disability calization, and normality are also central representations by dividing them into key to the Mad Pride movement. Individual- themes of “individualism,” “medicaliza- istic approaches to mental difference and tion,” and “normality” (Oliver 1990, 56, distress blame and punish the victim for 58). Individualism refers to the perspective structural problems that are often better that disability is a “personal tragedy.” This understood as located in families, com- frame undergirds a “hegemony of disabil- munities, and society. Medicalization, or ity” which views disability as “pathological psychiatrization, legitimizes the medi- and problem-oriented” (Oliver 1996, 129). cal community’s expert authority over the A MAD FIGHT | 117 domain of mental difference. And the bina- used to justify such a broad range of sub- ry between normal and abnormal shores ordination practices. But, more than most, up this psychiatrization by providing tre- Mad Pride and disability activism face a mendous social and psychological pressure combined political and epistemological to stay on the side of normality, or sanity. struggle. The very heart of these activisms Disability studies scholars refer to social begins with expressly biomedical assign- stigma and oppression against the physi- ments of impairment. This comes not in cally different as “ableism”; those in Mad the form of a general pronouncement of Pride refer to social stigma and oppression inferiority, but in a direct and specific di- against mental difference as “mentalism” agnosis and treatment process. Because of or “sanism” (Chamberlin 1977, 219; Perlin this, Mad Pride and disability activist ef- 2000, 21). forts to reduce individualization, medical- Despite these similarities, disability ac- ization, and ableism require a dual struggle tivists and Mad Pride members have had that goes beyond politics-as-usual. The difficulty forming a sustained coalition. challenge of this dual epistemological and Part of this difficulty involves the simple political struggle requires all the allies you fact that two groups are composed of differ- can get. When disability activist and Mad ent subcultures—with different histories, Pride work together, they can form a formi- different cultural artifacts, and different dable coalition. networks of association. But, beyond this, there are other, deeper reasons. Some dis- THE BIRTH OF MAD PRIDE ability advocates continue to harbor sanist MOVEMENT style associations toward mental difference and do not wish to be associated or Mad Pride activists have had extensive ex- “tarnished” by Mad Pride. Likewise, many perience going beyond politics-as-usual. in Mad Pride (like many in the Deaf com- Their lesson of dual engagement goes back munity) express discomfort with the “dis- to the nineteenth century efforts of Mrs. ability” label. They do not see their mental Elizabeth Ware Packard, an early precursor difference as a disability, but rather as a to today’s Mad Pride movement. In 1886, valued capacity. In addition, many in Mad Packard, a former mental hospital pa- Pride feel that disability struggles are sepa- tient and founder of the Anti-Insane Asy- rate from their concerns because physical lum Society, began publishing a series of disability does not involve the same level of books and pamphlets critical of psychiatry. state coercion. People with physical differ- Packard’s writings challenged the subor- ences are often inappropriately confined dination of women to their husbands and (through limited choices and multiple ma- the remarkable complicity of the political nipulations), but Mad Pride activists must and psychiatric establishment to this sub- deal with an additional layer of state spon- ordination (Packard 1868, 1874). As Gerald sored coercion in the forms of involuntary Grob explains, “When Packard refused to commitment and forced medication laws.2 play the role of obedient [minister’s] wife Like many in both movements, however, and expressed religious ideas bordering I believe it is wise to foreground the simi- on mysticism, her husband had her com- larities between disability activism and mitted in 1860 to the Illinois State Hospi- Mad Pride. Clearly, all of the new social tal for the Insane” (Grob 1994, 84). Packard movements, in one way or another, have to remained incarcerated for three years and struggle with both truth and values—large- only won her freedom by going to court ly because biomedical science has been to challenge her confinement. The trial 118 | BRADLEY LEWIS

received national publicity and eventually into the experiences of many. After gradu- led to Packard being declared sane by the ating from Wharton, Frank moved to San court and released from the asylum. She Francisco to sell commercial real estate. spent the next twenty years campaigning He was in his own words “an extraordi- for personal liberty laws that would protect narily conventional person” (Farber 1993, individuals from wrongful commitment 191). Gradually, during his late twenties, and retention in the asylums. he started discovering a new world within Even in this early precursor to today’s himself and began going through an “obvi- movement, the issues of epistemologi- ous clash between . . . my emerging self and cal struggle and political struggle are in- that of my old self” (191). He later thought separably intertwined. Packard challenged of this as a “spiritual transformation.” But, pathologizing diagnostic practices that at the time, he responded by doing serious would treat people as insane “simply for reading and reflection on his emerging in- the expression of opinions, no matter how sights. He ended up rethinking everything absurd these opinions may appear for oth- in his life: “what was happening to me was ers” (quoted in Geller and Harris 1994, 66). that I was busy being born” (191). And she challenged the political abuses that A key text for Frank during his trans- occurred once the insanity diagnosis had formation was Mohandas Gandhi’s auto- been made. Lunatic asylums, she argued, biography. Frank took seriously Gandhi’s too often left people at the complete mer- message that one’s inner life and outer cy of hospital despotism where they were life should interact and complement each treated worse than convicts or criminals. other. Reading Gandhi opened his eyes Packard’s dual stress on both the “facts” of to the violence of political injustice and insanity and the inhumane treatment of to the power of non-violent resistance. those considered to be insane reverberate It also raised his awareness that animals into today’s resistance to psychiatry. had feelings and could suffer. The more The more proximate antecedents to Frank thought about Gandhi’s writings on today’s Mad Pride movement began in the meat-eating, the more he concluded it was 1970’s. Mad Pride activists, during these inescapably cruel to both animals and to years, gained momentum from the black humans: “We can’t avoid harming ourselves civil rights movement, the women’s move- when we harm other beings, whether hu- ment, and from the early stages of lesbi- man or animal. Meat-eating was an excel- an and gay movement and the disability lent example of how this principle played movement. Like Elizabeth Packard almost out in real life . . . Because it was inherently a century before, the key experience that cruel to animals and morally wrong, it af- motivated Mad Pride activists was their fected the wrong doers by causing them negative treatment within the psychiatric to become sick and cutting short their system. Early founders of the movement lives” (206). This combination of insights shared common experiences of being made it difficult for Frank to continue his treated with disrespect, disregard, and previous lifestyle and his work selling com- discrimination at the hands of psychiatry. mercial real estate; he soon lost his job, Many also suffered from unjustified con- grew a beard, became vegetarian, and finement, verbal and physical abuse, and devoted himself to full time spiritual exclusion from treatment planning. exploration. The testimony of Leonard Roy Frank, co- Frank was exhilarated by the process, but founder of the Network Against Psychiatric his parents were deeply concerned. Seeing Assault (1972), provides a helpful glimpse Frank’s transition through the stereotyped A MAD FIGHT | 119 frames of individualization, psychiatriza- ment. But, throughout it all, he never gave tion, and sanism, they thought he was hav- up on his beliefs, and he never saw another ing a “breakdown.” They tried to persuade psychiatrist for treatment. He went on to him to see a psychiatrist, but Frank resist- become a major figure in early Mad Pride ed. They responded by arranging an invol- activism. untary commitment. The hospital records During the early 1970s, people like show that Frank’s psychiatrists document Frank began to recognize they were not symptoms of “not working, withdrawal, alone and started organizing local con- growing a beard, becoming a vegetarian, sciousness-raising groups. In the United bizarre behavior, negativism, strong be- States this includes such organization as liefs, piercing eyes, and religious preoccu- the Insane Liberation Front in Portland pations” (193). The psychiatrists diagnosed Oregon (1970), the Mental Patient’s Libera- him as “paranoid schizophrenia,” and tion Project in New York City (1971), and they started a sustained course of court au- the Mental Patients’ Liberation Front in thorized insulin-electroshock treatments Boston (1971). These groups built support that lasted nine months and included programs, advocated for hospitalized pa- fifty insulin comas and thirty-five electro- tients, lobbied for changes in the laws, and shocks. educated the public through guest lectures When the psychiatrists were not giving and newsletters. In addition, they began the him shock treatments, their “therapeutic” process of developing alternative, creative, interactions with Frank revolved around his and artistic ways of dealing with emotion- behavior: particularly his refusal to shave al suffering and psychological difference or eat meat. There was never any discus- outside the medical models of psychiatry. sion of his emerging beliefs or his spiritu- The publication of Mad Pride activist Judi ality. Instead, Frank’s psychiatrists focused Chamberlin’s book On Our Own (1977) on changing overt signs of “abnormality.” in the mainstream press was a milestone They even went so far as to shave his beard in the development of peer run alterna- while he was unconscious from an insulin tives (Van Tosh and del Vecchio 2000, 9). treatment. Frank eventually came to realize Chamberlin used the book to expose her that his hospital resistance was futile, and, own abuse at the hands of psychiatry and with the ever increasing numbers of shock to give a detailed account of burgeoning treatments, he also came to fear he was in consumer run alternatives. The eloquence, a “life or death” situation: “These so-called optimism, and timing of the book was a [shock] treatments literally wiped out all critical catalyst for many in the movement. my memory for the [previous] two-year As ex-patient Mary O’Hagan puts it: “When period . . . I realized that my high-school my mood swings died away I was angry and college were all but gone; education- and amazed at how the mental health sys- ally, I was at about the eighth-grade level” tem could be so ineffective. There had to (196). be a better way. I searched the library not Rather than risk more “treatments,” quite knowing what I was looking for. And Frank surrendered. He played the psychia- there it was, a book called On Our Own by trists’ game and did what they wanted: “I Judi Chamberlin. It was all about ex-pa- shaved voluntarily, ate some non vegetar- tients who set up their own alternatives to ian foods like clam chowder and eggs, was the mental health system and it set me on somewhat sociable, and smiled ‘appropri- my journey in to the psychiatric survivor ately’ at my jailers” (196). After his release, movement” (quoted in Chamberlin, 1977, it took six years to recover from his treat- back cover). 120 | BRADLEY LEWIS

The newly formed local Mad Pride that can only pathologize it. For many anti- groups also organized an annual Confer- psychiatry writers, mental suffering can ence on Human Rights and Psychiatric be the beginning of a healing process Oppression to help connect local mem- and should not be suppressed through bers with the wider movement. At these aggressive behavioral or biological inter- meetings, activists from across the coun- ventions. try gathered to socialize, strategize, and The most epistemologically radical of the share experiences. They gained solidarity anti-psychiatry writers, Thomas Szasz, had and increasing momentum from the expe- the most influence on U.S. activists. Szasz, a rience of being with like minded activists. dissident psychiatrist, was shunned within Between meetings local groups commu- his own field, but his prolific writings (over nicated through a newspaper forum. The twenty-five books) and forceful prose gave San Francisco local newsletter, Madness him tremendous influence outside psy- Network News, evolved into a newspa- chiatry (Leifer 1997). Throughout his work, per format which covered ex-patient ac- Szasz’s argument was always two-fold: tivities across North America and around (1) mental illness is a myth and (2) there the world. This publication became the should be complete separation between major voice of the movement, with each psychiatry and the state. As Szasz put it in issue containing a rich selection of per- a summary statement, “Involuntary men- sonal memoirs, creative writing, cartoons, tal hospitalization is imprisonment under humor, art, political commentary, and the guise of treatment; it is a covert form of factual reporting—all from the ex-patient social control that subverts the rule of law. point of view (Hirsch 1974; Chamberlin No one ought to be deprived of liberty ex- 1990, 327). cept for a criminal offense, after a trial by This early period of the Mad Pride jury guided by legal rules of evidence. No movement was also the most radical in its one ought to be detained against their will epistemological critique. Early leaders of in a building called ‘hospital,’ or any other the movement drew philosophical sup- medical institution, on the basis of expert port from high-profile critical writers that, opinion” (Szasz 1998). as a group, came to be known as “anti- Consistent with others in the Mad Pride psychiatry.” Writers such as Erving Goffman movement, Szasz combined his epistemol- (1961), R. D. Laing (1967), Thomas Scheff ogy and his politics. Szasz’s insistence on (1966), and Thomas Szasz (1961) may have the autonomy of mental health clients rest- differed widely in their philosophies, but ed directly on his epistemology, which he collectively their main tenets were clear. based on a strong positivist philosophy of Mental illness is not an objective medical science that emphasized a sharp demarca- reality but rather either a negative label or a tion between observation and conjecture. strategy for coping in a mad world. As Laing For Szasz, physical illness was real because put it, “the apparent irrationality of the single it was based on actual observation, but ‘psychotic’ individual” may often be under- mental illness was at best a metaphor. A stood “within the context of the family.” And, broken leg is real because you can see the x- in turn, the irrationality of the family can be ray, but a “broken brain” is a myth because understood if it is placed “within the context there is no x-ray that will show it. For Szasz, of yet larger organizations and institutions” to see mental illness as “real” rather than as (Laing 1968, 15). Put in context in this way, a metaphor was to make a serious category madness has a legitimacy of its own which mistake. “Mental illness” is not objectively is erased by medical-model approaches observable; it is a myth. A MAD FIGHT | 121

MAD PRIDE TODAY to share the results of their scholarship and program development. During the last thirty years of their strug- These political successes have gradually gle, Mad Pride has increasingly infiltrated necessitated a change in Mad Pride’s epis- the mental health system rather than sim- temological critique. Szasz’s strong episte- ply criticizing it from outside. Despite the mological critique of psychiatry was useful fact that institutional psychiatry continues in the early days of the movement, but it to ignore and denigrate their efforts, im- became less so as Mad Pride shifted into portant government agencies involved in its more contemporary formations. The mental health policy have begun to pay early anti-psychiatry literature set up an attention. Mad Pride activists have been either/or relation between consumers and particularly successful in increasing con- providers. People had to either be with psy- sumer participation in treatment plan- chiatry or against it. Szasz’s rigid positivist ning and facility governance. In addition, epistemology left little room for contradic- they have gained increasing respect for the tion and coalition politics. As sociologist work developing peer run treatment alter- and Mad Pride activist Linda Morrison natives. points out, with increasing infiltration of The most important agency to pay atten- the mental health system, many mem- tion to Mad Pride perspectives has been the bers no longer took a hard-line approach national Center for Mental Health Services to psychiatry. These members identified (CMHS). This little known public agency is themselves more as “consumers” than “charged with leading the national system “survivors” or “ex-patients.” Consumers, that delivers mental health services” (Cen- by definition, were critical of aspects of ter for Mental Health Services 2002). Fol- psychiatry but were willing to legitimize lowing on the success of Chamberlin’s On and participate in other aspects (Morrison Our Own, the agency worked with a local 2005). Mad Pride needed to embrace these California peer group to publish Reaching contradictions and adopt coalition politics Across: Mental Health Clients Helping Each to avoid losing these members. Other, a “how to” manual for peer run ser- Contemporary Mad Pride members vices (Zinnman, Harp, and Budd 1987). For have made just this kind of epistemological too long, CMHS explains, “decisions about shift. Though activists still reference Szasz mental health policies and services were favorably, they now draw more on his po- made without any input from people who litical values (of autonomy and separation have mental illnesses or their families. As a of psychiatry and state) than on his epis- result, some policies and programs failed to temology. Mad Pride members mark this meet the needs of the people they were in- shifting epistemology by referring to them- tended to serve” (Center for Mental Health selves as “consumer/survivor/ex-patient” Services 2004) CMHS worked to change groups. This hyphenated designation, usu- this by sponsoring peer-run research, train- ally shortened to “c/s/x” or “consumer/sur- ing, and technical assistance centers, and vivors,” highlights that today’s Mad Pride producing federally mandated documents is a coalition of critical activists—some of encouraging states to include consumer- whom have a more radical epistemological operated alternatives to traditional treat- critique than others (Morrison 2005). ment programs. Since 1985, CMHS has also This shift has set the stage for additional sponsored an annual, national level, Alter- coalitional possibilities between Mad Pride natives Conference that brings together and critical psychiatrists. Increasingly, crit- consumers and ex-patients to network and ical psychiatrists are moving beyond the 122 | BRADLEY LEWIS

narrow approaches of their training and Chamberlin before him, Oaks’ motivation drawing from interdisciplinary theory in for mental health activism comes from his science studies, disability studies, and the experiences of psychiatric abuse: includ- humanities. Like Mad Pride, they are de- ing forced hospitalization and forced treat- veloping alternative perspectives on psy- ment. Like so many others, he has taken chiatry that emphasizes the importance of those experiences and turned them into social models and of democratic research political action. and treatment. In Britain, an influential Critical Psychiatry Network (www.critpsyn- RECENT STRUGGLES WITH et.freeuk.com/critpsynet.htm) has recent- PSYCHIATRY ly formed, bringing together a coalition of critical providers and consumer/survivors Despite the successes Mad Pride has had (Double 2002).3 within the mental health system, their Contemporary Mad Pride’s political suc- epistemological and political struggle with cess at getting a seat at the table of men- psychiatry continues. These struggles are tal health policy has also necessitated a often complicated, and they require im- change in the more radical infrastructure pressive political savvy. In this section, of the movement. The Conference on Hu- I work through some examples of these man Rights and Psychiatric Oppression no struggles to give a sense of the political ter- longer meets and has now been replaced rain and the critical importance of today’s by the Alternatives Conference sponsored consumer/survivor activism. The 2003 by CMHS. The different name of the con- hunger strike is a good example of Mad ference is consistent with a shift in empha- Pride’s contemporary epistemological bat- sis from psychiatric oppression to peer-run tles. To understand the context of the strike, support and service involvement. The it is important to note that during the same change is subtle as both oppression and time Mad Pride has complicated its epis- support remain paramount for Mad Pride, temology, psychiatry has gone in the exact but the change does mark a shift of the em- opposite direction. The last thirty years phasis within the movement. have seen a “scientific revolution” in psy- In addition, the newspaper Madness chiatry that primarily values quantitative, Network News is no longer being pub- positivistic protocols for research (Lewis, lished. Today’s Mad Pride connects its 2006). The emphasis on “objective” data members largely through the activities of has created a preference for neuroscience the Support Coalitions International (SCI) and genetics at the expense of an array of which brings together one hundred intercultural and humanistic styles of inquiry. national local groups. Under the leader- This new scientific psychiatry, working in ship of David Oaks, SCI has become “the tandem with pharmaceutical funding, has epicenter of the Mad Movement” (“Win- gone on to create today’s dominant clini- dows into madness,” 2002). It runs a Web cal model of psychiatry, “biopsychiatry”— site (www.mindfreedom.com), an e-mail whose emphasis is almost exclusively list, a magazine (Mindfreedom Journal), biomedical style diagnoses and pharma- and an online “Mad Market” (where in- cological treatments. terested parties can find “a little library of The blockbuster medication, Pro- dangerous books”). Much of the success zac, gives a window into biopsychiatry’s of the center comes from Oaks’ capacity to dominance. Between 1987 and 2002 (the build a coalition of consumers, survivors, year Prozac came off patent), over 27 mil- and ex-patients. Like Packard, Frank, and lion new prescriptions for the drug were A MAD FIGHT | 123 written. Combined with the multiple “me mitters as other stimulants (Breggin 1994; too” drugs it inspired—the class of anti- Glenmullen 2000). depressants known as “selective serotonin When we take these controversies sur- inhibitors” (SSRI)—that total reached rounding the Prozac-type drugs into ac- 67.5 million in the United States alone count, it seems highly questionable that (Aldred 2004). That means almost one in the SSRIs were the best choice for 67.5 mil- every four people in the United States were lion people. For most of these people, alter- started on a Prozac-type drug between natives like psychotherapy, peer-support, 1987 and 2002. These same one in four and personal and political activism would people were dealing with sufficient emo- have likely been better options than taking tional issues that someone thought they drugs that are expensive, are possibly no needed help. better than placebo, have multiple side ef- For some of these people, the SSRIs may fects, and may be little more than a dressed have been the best choice. But was it the up version of speed. But, because of the best choice for 67.5 million people? Psy- hype of biopsychiatry, these controversies chiatry’s professional literature, its patient are not well known and alternatives are not hand-outs, and the popular press all tell us given a chance. The SSRIs are seen as quick “yes.” They tout “scientific progress in the and easy solutions backed by advances in treatment of depression” as the main rea- psychiatric science and individual medi- son for the SSRIs extensive use (Gardner cal recommendations. For most people 2003; Lewis 2006; Metzl 2003). But, if we thrown in that situation, they are seen as scratch the surface, we find that the SSRIs the only viable option. are highly controversial, and researchers Mad Pride’s hunger strike was direct- have not been able to agree on even sim- ed squarely at this so-called “biological ple questions like: Do the drugs work? Or, revolution” in psychiatry. The fasters, or- are they safe? The Handbook of Psychiat- ganized by David Oaks and Support Co- ric Drug Therapy, typical of most clinical alition International, demanded evidence reviews, claims with great authority that that emotional and mental distress can the SSRIs are highly effective and that they be deemed “biologically-based” brain dis- have a mild side effect profile (Arana and eases, and also evidence that psychophar- Rosenbaum 2000, 57, 76). But critical ana- maceutical treatments can correct those lysts conclude just the opposite: that the “chemical imbalances” attributed to a psy- SSRIs are not much better than sugar pills chiatric diagnoses (MindFreedom, July 28, and that they have major side effects—in- 2003). cluding sexual dysfunction, suicidality, and The strikers were not trying to show that even violence (Breggin 1994, 65; Fisher and the biopsychiatric model of mental illness Fisher 1996; Glenmullen 2000; Healy 2004; is myth, and they were not touting another Kirsch and Sapirstein 1998). Going further, model of mental distress as better or more scientific opinion is also at odds regard- accurate. The protestors stated from the ing the question of explanation. Some outset that they were aware that psycho- argue that the SSRIs have effects because pharmaceuticals work for some people, they treat biological disease. But others and that they were not judging individu- argue these drugs are simply stimulants als who choose to employ biopsychiat- like cocaine and amphetamines. These ric approaches in an effort to seek relief. researchers conclude that SSRIs are mood For Oaks and his fellow protestors, there brighteners and psychic energizers be- are “many ways to help people experienc- cause they work on the same neurotrans- ing severe mental and emotional crises . . . 124 | BRADLEY LEWIS

We respect the right of people to choose to accept without question the “truths” of the option of prescribed psychiatric drugs. biopsychiatry.4 Many of us have made this personal choice. Despite this small success, Mad Pride’s . . . However, choice in the mental health epistemological struggle continues to be field is severely limited. One approach a tough one. They are battling against a dominates, and that is a belief in chemical veritable superpower whose main ally is imbalances, genetic determinism and psy- the hugely profitable and very influential chiatric drugs as the treatment of choice. pharmaceutical industry. As David Davis Far too often this limited choice has been reports in his LA Times article on the hun- exceedingly harmful to both the body and ger strike, Mad Pride is up against both an the spirit” (MindFreedom, July 28, 2003). In American Psychiatric Association, whose demanding evidence, the strikers hoped to conventions bustle with “brightly colored” show that the “chemical imbalance” theory booths of the drug companies, and a boom- of mental distress is not watertight, and ing pharmaceutical industry whose “sales to therefore challenge the overinvestment of psychotherapeutics reached $21 billion in this “biopsychiatric approach” by the in 2002, almost double the $11 billion in mental health institutions. sales in 1998” (Davis 2003).5 In the early days of the strike, the APA Because of the influence and clout of brushed off the strikers demands for evi- biopsychiatry, Mad Pride knows all too well dence and told them to consult introduc- that skirmishes over epistemology are only tory textbooks on psychiatry. The strikers part of the struggle. While it is vital to strike responded by persisting in their demands at the heart of mainstream psychiatry’s and by sending a letter to the APA written “knowledge” and “truths,” it is just as vital to by a panel of fourteen critical scholars. The realize that the epistemology game is hard letter showed that within the very textbooks to win. Science studies scholar Bruno La- that the APA had recommended there were tour explains that dissenters of science can numerous statements that invalidated the only go so far by using scientific literature notion that mental illnesses have specific against itself. For alternative perspectives biological bases (MindFreedom, August to successfully join in the process of science 22, 2003). Using psychiatry’s own knowl- (and truth) in the making, they must build edge against itself, the hunger strikers their own “counter-laboratories,” which prompted the APA to respond more fully, of course requires tremendous resources and a follow up communiqué from APA fi- (Latour 1987, 79). Mad Pride clearly does nally conceded that “brain science has not not have the resources to compete labo- advanced to the point where scientists or ratory for laboratory with the institutions clinicians can point to readily discernible of psychiatry and their pharmaceutical pathological lesions or genetic abnormali- supporters. Thus, while Mad Pride contin- ties that in and of themselves serve as a re- ues to play the game of epistemology, and liable or predictive biomarkers of a given continues to have some successes desta- mental disorder” (APA 2003). This reluctant bilizing psychiatry’s biomedical model, admission from the APA marked an impor- it also struggles with psychiatry on the tant epistemological victory for Mad Pride. more typically political and economic In an interview, Oaks said: “They acknowl- terrain. edged that they didn’t have the biological This was particularly evident in 2002 evidence [of mental illness], so that’s on when President George W. Bush’s adminis- the record” (Davis 2003). The hunger strike tration initiated what David Oaks dubbed vividly demonstrated how problematic it is “the Bush triple play,” which prompted A MAD FIGHT | 125

Mad Pride to mobilize swiftly and energet- the most severe illnesses to political cor- ically to fight on the political front (Oaks rectness and to the expediency of placating 2002–2003). The triple play included: the vocal and annoying consumer/survivor lobby” (76). And she even goes so far as to 1. The planned appointment of a contro- describe the Alternatives Conference as the versial conservative psychiatrist, Dr. “guinea pig rebellion” (50). Sally Satel, to the important National For Mad Pride, Satel’s appointment and Advisory Council for Mental Health. her public vilification of consumer-run 2. The announcement of budget cuts to organizations signaled an overall Bush ad- key government sponsored consumer/ ministration strategy to aggressively push survivor technical support centers. a controversial biopsychiatry paradigm, to 3. The creation of a New Freedom Com- abandon consumer run self-help and peer mission to study U.S. mental health support programs, and to increase forced services. psychiatric medication. These concerns were reinforced by the All aspects of this triple play posed direct second part of the Bush triple play. Soon threats to Mad Pride and to the consumer/ after the leak about Dr. Satel, the Bush survivor movement, and they threatened administration announced budget cuts the freedoms and rights of those suffering for CMHS sponsored consumer/survivor mental and emotional crises. technical assistance centers. Although the The first part of the triple play began cuts totaled only $2 million out of the total with a White House leak, with word coming CMHS budget, they were targeted directly out that Dr. Sally Satel was being selected at consumer/survivors. Three out of five of by the Bush administration for a position these centers were consumer run, which on the advisory council for the CMHS (the represented a clear about face for CMHS. very organization which has been most re- Joseph Rogers, director of one of the pro- ceptive to consumer/survivor initiatives). grams to be cut, the National Mental Health Dr. Satel—a fellow at the American En- Consumer Self-Help Clearinghouse, com- terprise Institute (a conservative political mented that “We had no warning. The cuts think tank)—is the author of the controver- just came out of the blue, and we’ve had no sial book P. C., M.D.: How Political Correct- explanation since that makes any sense” ness is Corrupting Medicine. She is not only (Mulligan 2002). a vociferous advocate of the biopsychiat- The third part of the Bush triple play was ric model of mental illness, she is also an the creation of a New Freedom Commission outspoken critic of the consumer survivor on mental health. Bush hailed the com- movement, and an insistent lobbyist for mission as a major step toward improving involuntary commitment and treatment mental health services, and he charged it laws. In P.C., M.D., under a chapter titled with the ambitious goals of reviewing the “Inmates Take Over the Asylum,” Satel quality of mental health services, identify- names the leaders of the Mad Pride move- ing innovative programs, and formulating ment and attacks their hard fought efforts federal, state, and local level policy options. to increase peer run services and reduce The administration stipulated that the involuntary treatments. She denigrates commission be composed of fifteen mem- mental health administrators who have bers and that these members be selected taken Mad Pride seriously: “Tragically, they from a range of stakeholder groups: includ- [mental health administrators] seem to be ing providers, payers, administrators, con- willing to sacrifice the needs of those with sumers, and family members (Bush 2002). 126 | BRADLEY LEWIS

Although all of this sounded laudable berlin, who has been a long-time advocate enough, but true to Mad Pride concerns, of disability and Mad Pride coalitions, ex- when the New Freedom Commission’s fif- plained the rationale for involving the larger teen members were made public, only one disability movement, “When a wolf wants person self-identified as having personally to target a whole flock, it looks for the most experienced the mental health system or as vulnerable lamb. The Bush administration involved in the consumer/survivor move- is targeting psychiatric survivors today, but ment. The New Freedom Commission’s the whole disability movement is the target choice of members appeared not to be tomorrow” (Oaks 2002–2003). about true stakeholder inclusion, but only The meeting turned out to be a major in- a crude form of tokenism. spiration for consumer/survivors. The first For many consumer/survivors, the Bush speaker that night was Justin Dart, who triple play was not only an outrage, it was many call the “Martin Luther King” of the a serious danger. These three deft moves disability movement. Dart, struggling with threatened to undo all the gains consum- the last stages of terminal illness (he died er/survivors had made over the past thirty just eight days later), gave a rousing speech years. Oaks put it this way: “Mental health which set the tone for the meeting. Dart consumers and psychiatric survivors have proposed that, experienced fierce repression. But to have a well-funded think tank unite with a Presi- . . . we in the disability communities must dential administration to openly attack our unite with all who love justice to lead a revolution of empowerment. A revolution, to cre- movement in such a way is unprecedented. ate a culture that will empower every single As the enormity of the attacks set in, sev- individual including all people with psychi- eral activists said they were numb with dis- atric disabilities, to live his or her God given belief” (Oaks 2002–2003). potential for self determination, productivity Mad Pride activists could have reason- and quality of life. ably given up at this juncture. Instead, they Empowerment means choices—individu- held a strategy meeting with colleagues al choices about where we live, how we live, from the international movement, and where we work, choices about health care. they decided to directly oppose each part We have a right to complete quality health of the Bush triple play. Opposition to Dr. care of our own choosing. Satel’s appointment and the cuts to CHMS NO FORCED TREATMENT EVER. We choose our own doctors and medication. programs took the form of a blitz of emails We choose the places of care. No denial of to consumer/survivor list-servs, active lob- treatment ever. bying of mental health administrators, and NO FORCED TREATMENT EVER. a barrage of critical faxes to Secretary Tom- (Oaks 2002) my Thompson of the U.S. Dept. of Health & Human Services. And, rather than being The combined presence of Dart and several dismayed by the non-democratic message other disability representatives created the of the New Freedom Commission’s selec- strategic capacity to get the word out and tion process, consumer/survivors took rally support and resistance far beyond full advantage of the Commission’s plan the usual consumer/survivor community. to hold public hearings on psychiatric ser- It also further advanced a cross-disability vices. Four days before the first scheduled activist connection between the disability hearing, consumer/survivors gathered for movement and consumer/survivors. an emergency meeting with a network of On the day of the New Freedom Com- physical disability activists. Judi Cham- mission’s first public meeting, consumer/ A MAD FIGHT | 127 survivor activists and their disability The New Freedom Commission results activist comrades made their presence were also contradictory. On the one hand, known. Not only did they hand out their the commission was quite responsive to own press release and talk individually Mad Pride concerns. It agreed with Mad to members of the Bush Commission, Pride that the mental health system is fun- they also made public announcements. damentally broken, that it needs extensive Judi Chamberlin’s testimony was typical. overhaul (not just piecemeal reform), that Announcing that she was a “psychiatric mental health services must be consumer survivor” and “an advocate” on consumer/ and family centered, that modern psychia- survivor issues for more than thirty years,” try over emphasizes reductionist biomedi- she pointed out: cal approaches, and that consumers must be protected from unjust incarceration A basic premise of the disability rights move- and the use of seclusion and restraints. ment is simply this: Nothing About Us With- Together these recommendations signi- out Us. The makeup of the Commission fied an impressive success for Mad Pride’s violates this basic principle. Just as women (and their disability allies) efforts to reach would not accept the legitimacy of a com- the commission and have their voices in- mission of “expert” men to define women’s cluded in the report. needs, or ethnic and racial minorities would not accept a panel of “expert” white people to But, on the other hand, all was not rosy define their needs, we similarly see the Com- with the commission’s report. In addition mission as basically irrelevant to our struggle to the above recommendations, the New to define our own needs. Freedom Commission also recommended (Chamberlin 2002) nationwide mental health screenings in schools, primary care offices, prisons, and Chamberlin argued that the New Freedom the welfare system. The ominous dimen- Commission lacked the “expertise on the sion of this plan was pointed out the British consumer/survivor experience” as well as Medical Journal (BMJ) in an exposé titled the “expertise of disability rights activists, “Bush plans to screen whole US popula- those knowledgeable about the legal and tion for mental illness.” The BMJ explained civil rights of people diagnosed with men- that the New Freedom Commission rec- tal illness, and experts in community in- ommendation for nationwide screening tegration.” And she went on to detail how was linked to their recommendation for that expertise could be provided. “evidence-based” treatment protocols. In Unlike the results of the hunger strike, psychiatry, these protocols are code words however, the results of Mad Pride’s efforts for the Texas Medication Algorithm Project to resist the Bush triple play can only be de- (TMAP). TMAP was started in 1995 as an al- scribed as mixed. With regard to part one liance between the pharmaceutical indus- of the triple play, Mad Pride was unable to try, the University of Texas, and the mental stop Sally Satel’s appointment to the advi- health system to set up expert guidelines sory board. Once on the board, she predict- for psychiatric practices. But a whistle ably advocated for more forced treatment blower at TMAP, Allen Jones, revealed that and for discontinuation of consumer-run key officials received money and perks programs. But part two of the triple play, from the drug companies to unnecessar- the planned budget cuts to peer support ily promote expensive on-patent drugs. As programs, never materialized. The three Jones explained, “the same political/phar- technical centers sponsored by CMHS con- maceutical alliance” behind TMAP are also tinued to be funded. behind the New Freedom Commission. 128 | BRADLEY LEWIS

This alliance is “poised to consolidate the coercive connections between psychiatry TMAP effort into a comprehensive nation- and the state. Their fight to reduce indi- al policy” of over-treating mental illness vualization, psychiatrization, and sanist with expensive medications (Lenzer 2004). approaches to psychic life is arduous, and When you add to this state of affairs the at times a little “mad.” But the stakes are recent National Institute of Health conclu- high and the struggle must continue. With sion that half of all Americans will meet the the increasing coalition with the broader criteria for a DSM-IV disorder some time disability movement and the emergence in their life, the profiteering possibilities of of a critical psychiatry network, the fight the New Freedom Commission’s political/ is becoming more and more mainstream. pharmaceutical alliance is easy to imagine Soon the battle will be one about which we (Kessler 2005). all know and in which we can all partici- Of course, none of this screening will pate. Active biocultural citizenship regard- go forward without resistance. In quick re- ing mental difference and distress requires sponse to the BMJ exposé, Mindfreedom nothing less. sent out a news release “What You Gonna As the editors of Adbusters sum up in Do When They Screen For You” and set up their issue on Mad Pride, in a culture of a section of its Web site titled “President hardening isolation, status, materialism, Bush and the Shrinking of the USA” (see and environmental degradation, “Mad http://www.mindfreedom.org/mindfree- Pride can be a broad embrace. It is a sig- dom/bush_psychiatry.shtml). This news nal that we will allow ourselves our deep board gives access to breaking stories and sorrow, our manic hope, or fierce anxiety, commentary, plus it provides answers to our imperfect rage. These will be our feed- frequently asked questions concerning the back into the system. We reserve the right controversy. In addition, the Mad Pride ad- to seek relief from both our most troubling vocacy group, Alliance for Human Research symptoms and from society’s most puni- Protection (AHRP), has begun to moni- tive norms. The sickness runs deep; with- tor closely the outcomes of the New Free- out madness, there is no hope of cure” dom Commission (see http://www.ahrp. (“Deep sadness, manic hope,” 2002). org/about/about.php). At the time of this writing, AHRP reports that lawsuits are NOTES already being filed in Indiana to resist the effects of “TeenScreen Depression”—a 1. Public health scholar Barbara Starfield esti- program funded partly with new fed- mates that the combined effect of medical adverse effects in the United States are as follows: eral grants initiated by the New Freedom 6 Commission. • 12,000 deaths/year from unnecessary surgery • 7,000 deaths/year from medication errors in CONCLUSION hospitals • 20,000 deaths/year from other errors in hos- These recent conflicts with psychiatry pitals provide an important window into Mad • 80,000 deaths/year from nosocomial infec- Pride’s ongoing epistemological and po- tions in hospitals litical struggles. Against tremendous odds, • 106,000 deaths/year from nonerror, adverse the movement has worked impressively effects of medications to expose psychiatry as a limited field of That comes to a total to 225,000 deaths per year inquiry, to open up its clinical services to from iatrogenic causes—which constitutes the more peer-run alternatives, and to reduce third leading cause of death in the United States. A MAD FIGHT | 129

Just after heart disease and cancer (Starfield to be formidable foes (Alliance for Human Re- 2000, 484). search Protection 2005). 2. For an extended discussion of confinement and disability see the “Confinment” entry in the En- REFERENCES cyclopedia of Disability Studies (Lewis 2005). 3. The Critical Psychiatry Network organizes its Aldred, G. (2004). “An Analysis of the Use of Prozac, members less under the banner of “anti-psy- Paxil, and Zoloft in USA 1988–2002.” Retrieved on chiatry” and more under the banner of “post- June 2, 2005 from the Alliance for Research Protec- psychiatry” (Thomas and Bracken 2004). The tion, http://www.ahrp.org/risks/usSSRIuse0604. epistemological underpinning of post-psychiatry pdf. avoids the either/or problems of anti-psychiatry. Alliance for Human Research Protection (2005). “The Relying on the philosophy of Michel Foucault, Rutherford Institute takes on TeenScreen case in a post-psychiatric perspective blurs the binary Indiana.” Retrieved on July 25 from http://www. between truth and myth as all forms of human ahrp.org/infomail/05/06/13.php. knowledge making are understand to be both American Psychiatric Association (2003). Statement material and semantic (Bracken and Thomas on diagnosis and treatment of mental disorders. 2001; Foucault 1965 and 2003; Lewis 2006). This Release no. 03-39, September 25, 2003. Retrieved shift moves the legitimacy question of psychiat- on July 15, 2005 from http://www.psych.org/ ric knowledge from “truth” to “consequences.” news_room/press_releases/mentaldisorders0339. The issue is not whether psychiatric knowledge pdf. magically mirrors the world, but who is allowed Angell, M. (2004). The truth about drug companies: to participate in making the knowledge? What How they deceive us and what to do about it. New kinds of consequences (and for whom) will fol- York: Random House. low from the knowledge? Arana, G., and Rosenbaum, J. (2000). Handbook of 4. For an extended analysis of the exchange be- psychiatric drug therapy, 4th ed. Philadelphia: tween Mad Pride and the APA see critical psy- Lippincott Williams and Wilkins. chiatrists Duncan Double’s review: “Biomedical Braken, P., and Thomas, P. (2001). “Postpsychiatry: a Bias of the American Psychiatric Association” new direction for mental health.” British Medical (Double 2004). Journal 322:724–727. 5. See former editor-in-chief of the New England Breggin, P. (1994). Talking back to Prozac: What doc- Journal of Medicine Marcia Angell’s book, The tors aren’t telling you about today’s most controver- Truth about Drug Companies: How They Deceive sial drugs. New York: St. Martins Press. Us and What to do About It (2004), for an extend- Bush, G. W. (2002). “President’s New Freedom Com- ed discussion of the influence of the pharma- mission on Mental Health: Executive Order.” The ceuticals on medical research and practice. Also White House. President George W. Bush On line. see Pulitzer Prize finalist Robert Whitaker’s book, Released on April, 29, 2002. Retrieved on June Mad in America: Bad Science, Bad Medicine, and 17, 2005 from http://www.whitehouse.gov/news/ the Enduring Mistreatment of the Mentally Ill releases/2002/04/20020429-2.html. (2002) for an historical perspective specific to Center for Mental Health Services (2002). “About psychiatry. CMHS.” Retrieved on July 20, 2005 from http:// 6. Theresa and Michael Rhoades, who filed the first www.mentalhealth.samhsa.gov/cmhs/about.asp. suit, claim that TeenScreen sent their daughter Center for Mental Health Services (2004). “Con- home from school telling her she had been di- sumer affairs program.” Retrieved on July 20, agnosed with obsessive compulsive disorder and 2005 from http://www.mentalhealth.samhsa.gov/ social anxiety disorder. The Rhoades “claim that consumersurvivor/about.asp. the survey was erroneous, improper, and done Chamberlin, J. (1977). On our own: Patient-controlled with reckless disregard for their daughter’s wel- alternatives to the mental health system. Lawrence, fare and that they did not give the school permis- MA: National Empowerment Center, Inc. sion to give the test” (Pringle 2005). High profile Chamberlin, J. (1990). “The ex-patients’ movement: attorney John Whitehead calls the situation an Where we’ve been and where we are going.” Jour- “Orwellian Nightmare” and has agreed to take nal of Mind and Behavior 11 (3&4): 323–336. on the Rhoades case. However, “because of the Chamberlin, J. (2002). “Testimony of Judi Cham- financial backing of pharmaceutical companies berlin.” American Association of People with and the Bush administration’s support through Disabilities On line. Retrieved on June 17, 2005 the New Freedom Commission,” even White- from http://www.aapd-dc.org/News/disability/ head is concerned and considers his opposition testjudichamberlin.html. 130 | BRADLEY LEWIS

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“The Institution Yet to Come”: Analyzing Incarceration Through a Disability Lens Liat Ben-Moshe

Grandmother lost her mother in the early highlight those who resist incarceration by 1900s to what was considered progressive calling for the abolition of repressive insti- policy. To protect society from the insane, tutions such as institutions for those with feebleminded and physically defective, labels of psychiatric and intellectual dis- states invested enormous public capital in abilities and prisons. institutions, often scattered in remote areas. Harriet McBryde Johnson (2003) Into this state-created disability gulag people disappeared, one by one. Today, more describes in the opening paragraph her than 1.7 million mothers and fathers, daugh- experiences and fear of the “disability ters and sons, are lost in America’s disability gulag,” the warehouse for disabled people gulag. Today’s gulag characterizes isolation that is often called “the institution.” As she and control as care and protection, and the describes in her narrative, many people disappearances are often called voluntary with significant disabilities fear that one placements. However, you don’t vanish day they will be sent there and lose their because that’s what you want or need. You independence, if they are not living there vanish because that’s what the state offers. already. In Crip Theory: Cultural Signs of You make your choice from an array of one. Queerness and Disability, Robert McRuer (McBryde Johnson 2003) (2006) discusses what he calls “the disability yet to come,” describing both the fear that non-disabled people have of becom- “THE INSTITUTION YET TO COME” ing disabled and the notion that if anyone Institutional life, whether in a prison, hos- lives long enough, they will eventually pital, mental institution, nursing home, become disabled in some way. Intersecting group home, or segregated “school,” has Johnson with McRuer, we can conceptual- been the reality, not the exception, for dis- ize ”the institution yet to come” as a loom- abled people throughout North American ing presence in the lives of all people with history (and globally). In this paper I sug- disabilities, even those who don’t reside gest analyzing the reality of incarceration in them (for the time being). The ghost of through the prism of disability, by show- forced confinement haunts us all, but does casing the connections between institu- so much more materially and immediately tions and prisons and the populations that for marginalized populations, especially inhabit them, including disabled prison- poor people, people of color, disabled ers and those institutionalized. I will also people and any amalgamation of these “THE INSTITUTION YET TO COME” | 133 groups (Chapman, Ben-Moshe and Carey is the understanding that the logic of com- forthcoming). pulsory ablebodiedness (McRuer 2002), This call for connecting analysis of incar- handicapism (Bogdan and Biklen 1977), ceration with disability, is also a call to pay ableism, normalcy (Davis 1995) and disa- attention to the lives of mostly poor people blement (Oliver 1990), are not just similar of color who are incarcerated worldwide in but related to forces of sanism or mental- nursing homes, institutions for those with ism (Chamberlin 1977; Perlin 2000). I thus labels of mental illness and/or intellectual/ argue that Disability Studies could ben- developmental disabilities and prisons, efit immensely by actively taking up the and bring their perspective to bear on what theorizations and lived experiences in the Chris Bell (2006) characterized as “white field of Developmental Disability and Mad Disability Studies.” I want to add that the Studies. What such expansive formula- field of Disability Studies had historically tions achieve is an understanding of incar- not only privileged the experiences of white ceration in its broadest way in relation to bodies, but in fact focused on bodies in hospitalization, institutionalization and general, at times to its detriment. Feminist imprisonment and a fuller understanding and critical analysis of disability brought of the forces that construct medicalization to the forefront a new conceptualization and criminalization. Such analysis is espe- of disability, not just as a socially excluded cially pressing because of the immense category, but as an embodied identity growth of the prison machine in the US. (Thomson 1997; Wendell 1996). This focus on embodiment challenges the medi- SOME BACKGROUND ON cal model of disability which conceives of IMPRISONMENT AND disability as a lack and deficiency inher- (DE)INSTITUTIONALIZATION ent in non normative bodies. It also challenges the social model of disability which For the first time in US history, in 2008, encourages us to focus solely on processes more than one in 100 American adults is of disablement as a critical framework that behind bars. In 2009 the adult incarcerated will end the oppression of people with dis- population in prisons and jails in the US abilities (Morris 2001; Tremain 2002). had reached 2,284,900 (BJS 2010). Another Not discounting such achievements, whopping 5,018,900 people are under the (often unintended) consequence of “community corrections” which include such an enterprise is the privileging of parole and probation (BJS 2010). Race, analysis on the body and visible disabili- gender and disability play a significant role ties in the field of Disability Studies. Such in incarceration rates. By 2006, one in fif- focus obscures the myriad disabilities and teen black men over the age of eighteen impairments that could and should be and one in nine black men age twenty to analyzed under the purview of Disability thirty-four were incarcerated. The overall Studies. I am not trying to suggest that the incarceration rate for women increased experiences and analysis of various impair- 832% from 1997 to 2007 (Human Rights ments and forms of oppression should be Index 2009/10). The imprisonment rate conflated into one meta-field, called Dis- for African-American women was almost ability Studies or anything else. I am also double that of Hispanic women and three not suggesting that being psychiatrized, times the rate of white women. If these or being labeled intellectually disabled or seem like mere numbers consider the real- having a physical or sensory disability are ity that today more African-Americans find all the same. What I am trying to push for themselves in penal institutions than in 134 | LIAT BEN-MOSHE

institutions of higher learning (Thompson lack of medical equipment and medica- 2010). tion (Russell and Stewart 2001). It is also Although several attempts have been crucial to take an expansive view of what made to estimate the number of prisoners constitutes as “disability” in such environ- who have psychiatric diagnosis, it is impos- ments. For instance, the high prevalence of sible to quantify their number with any HIV/AIDS amongst prisoners and the vari- degree of precision, even if taking the label ous impairments that come with aging in a of “mental illness” as a viable construct. disabling environment such as a prison, as The American Psychiatric Association a result of prolonged sentencing policies, reports in 2000 that up to 5% of prisoners should be of concern to Disability Stud- are actively psychotic and that as many as ies scholars and those studying the effects one in five prisoners were “seriously men- of incarceration. Disability in this frame- tally ill” (APA 2000). Other attempts to esti- work is not a natural biological entity, but mate the prevalence appear to have used related to economic and social conditions a substantially more expansive definition which lead to an increased chance of both of mental illness. Bureau of Justice Statis- disablement and imprisonment. tics reports that in 2005 more than half of Similarly, conditions of confinement all prison and jail inmates were reported may cause further mental deterioration in as having a mental health problem. They prisoners entering the system with diag- also report that women inmates had higher noses of “mental retardation” or intellec- rates of “mental health problems” than men tual disabilities. Most court cases show (Human Rights Watch 2006). Researchers that the right to (re)habilitation is often also found that the prevalence of “mental not fulfilled in jails, prisons and institu- health problems” varied by racial or eth- tions, and that this further distresses those nic group. White inmates appear to have incarcerated and worsens their mental and higher rates of reported “mental health physical health overall. Those incarcerated problems” than African-Americans or His- (in institutions or prisons) with labels of panics (Thompson and Thompson 2008). intellectual and developmental disabilities Yet African-Americans, and especially Afri- may in fact lose crucial life skills that they can-American men, seem to be labeled had before they were imprisoned such as “seriously mentally ill” more often than “loss of the ability to communicate, per- their white counterparts.1 form daily self-care, remain physically Analyzing imprisonment from a disabil- safe, and to maintain even rudimentary ity studies lens also necessitates a closer emotional stability” (American Association look at the social and economic conditions of Mental Retardation et al. amicus brief in of disablement and incarceration rather Goodman v. Georgia 2005). Prisoners who than looking at disability as a cause for are identified as mentally ill or exhibit ”dis- criminal acts. Prisoners are not randomly ruptive behaviors” are often sanctioned to selected and do not represent all statuses of “administrative segregation” in separate society. The majority of prisoners are poor, units, which are often isolation units. These and are people of color. Poverty is known segregated forms of incarceration, such as to cause a variety of impairments and disa- supermax or SHU (security housing units), bling conditions. In addition, the prison are likely to cause or exacerbate mental and environment itself is disabling—from hard physical ill-health of those incarcerated. labor in toxic conditions and materials; to In contrast to the constant expansion closed wards with poor air quality; circula- of prisons, deinstitutionalization and clo- tion of drugs and unsanitary needles; and sure of large state institutions for people “THE INSTITUTION YET TO COME” | 135 with labels of mental health and “men- later explosion in the form of the growth tal retardation” have been a major policy of prisons and jails, a phenomenon which trend in most US states in the past few is referred to as “mass incarceration” decades. Deinstitutionalization of people (Gottschalk 2010) or “hyper incarceration” who were labeled as mentally ill began in (Wacquant 2010). However, as Harcourt 1950s onwards. The deinstitutionaliza- (2006) suggests, if mental hospitalization tion of people labeled as intellectually and and institutionalization were also covered developmentally disabled gained promi- in such analyses, the “rise in incarceration” nence in the seventies, although this of would have reached its peak in 1955, when course varied by state. The population of mental hospitals reached their highest people with intellectual disabilities living capacity. Put differently, the incarceration in large public institutions (serving over rates in prisons and jails barely scrape the 16 people) peaked at 194,650 in 1967. In levels of incarceration during the early part 2009, the number had declined to 33,732 of the twentieth century (controlling for (Braddock et al. 2011). The shift from large population growth). facility-centered to community residential What needs to be empirically assessed, services can be viewed from the fact that then, is not “the rise in incarceration” in 1977, an estimated 83.7% of the people but the systemic and lingering effects of with developmental disability labels who the continuity of confinement in modern were receiving residential services lived in times. What such arguments highlight is residences of 16 or more people. By 2009, the need to reconceptualize institution- an estimated 86.4% lived in community alization and imprisonment as not merely settings of 15 or fewer people, and 73.1% analogues but as in fact interconnected, in lived in residential settings with 6 or fewer their logic, historical enactment and social people (Lakin et al. 2010). The trend in effects. The theoretical and policy implica- deinstitutionalization of people with intel- tions of such interconnectedness will also lectual disabilities resulted in closures of necessitate bringing in disability (psychi- large state institutions across most of the atric, developmental, physical etc.) as a US. By 2010, 11 states had closed all of their focus in studies on incarceration, as well as state-operated institutions for people with working out questions of criminality and intellectual/developmental disabilities danger in studies of institutionalization (Braddock et al. 2011). In contrast, seven and disablement. states had not closed any public institutions (Lakin et al. 2010). CONNECTIONS BETWEEN PRISON An accompanying shift occurred in the AND INSTITUTIONS field of mental health with the establishment of community mental health centers First, we need to examine some of the ways in the 1960s and the closure of large state in which prisons and institutions for those mental hospitals in most major cities. In with intellectual and psychiatric disabilities 1955, the state mental health population are connected and interrelated. As Goffman was 559,000, nearly as large on a per cap- described in Asylums (1961), the incarcer- ita basis as the prison population today. ated populations in institutions and pris- By 2000, it had fallen to below 100,000 ons are subjected to stripping of their iden- (Gottschalk 2010; Harcourt 2011). In the tities and to processes of dehumanization. public’s eye, the first half of the twentieth Also, especially for people with intellectual century is conceived as an era of relative and psychiatric disabilities, their citizen- stability in terms of incarceration, with a ship and personhood is questioned. This 136 | LIAT BEN-MOSHE

can be done in the form of taking away or acterized as feebleminded had a tendency denying voting rights or performing medi- to commit violent crimes. In the late nine- cal experimentation and, for women, deny- teenth century, as the eugenics movement ing reproductive rights, including forced gained momentum, it was declared that all sterilization (Waldman and Levi 2011). feebleminded people were potential crimi- On a theoretical level, the imperative nals (Rafter 1997; Trent 1995). to understand incarceration through both Another pervasive connection between the prism of the prison but also that of the institutionalization and imprisonment, institution, as this paper suggests, is cru- both historically and at present, is offered cial to unveiling the underlying relations through the framework of political econ- that legitimate confinement in a variety of omy. Many (including scholars and policy settings. Such analysis also underscores makers) believe that disabled people are the relation between penal and medical a strain on the economy, especially under notions of danger, as they relate to both neoliberal ideology. But political econo- criminalization and medicalization. His- mists of disability argue that disability torically, the connection between impris- supports a whole industry of profession- onment and definitions of “abnormality” als that keeps the economy afloat, such as seems to have arisen out of the modernity service providers, case managers, medical project, as a result of a new configura- professionals, health care specialists etc. tion of notions of danger. From the nine- (Charlton 1998; Oliver 1990). Elsewhere teenth century, the webs of the medical (Ben-Moshe 2012) I suggest that the forces and the judicial start to intertwine with of incarceration of disabled people should the rise of a hybrid discourse, according be understood under the growth of both to Foucault (2003). Its hybridity lies not the prison industry and the institution- just in the sense of amalgamation of sev- industrial complex, in the form of a growing eral discourses (legal, medical) but also in private industry of nursing homes, board- the creation of a new power/knowledge ing homes, for-profit psychiatric hospitals structure in which “doctors laying claim and group homes. As an example, figures to judicial power and judges laying claim show that there is no correlation between to medical power” (2003: 39) lay down an the increase of the non-governmental insti- intertwined system of surveillance, which tutional-industrial complex and percentage includes psychiatric progress reports of of those “needing” these services. Between the incarcerated, examination in court of 1977 and 2009, the total number of residen- the accused, and surveillance of “at risk” tial settings in which people with develop- groups. According to Foucault (2003), this mental disability labels received residential medico-judicial discourse does not origi- services grew from 11,008 to an estimated nate from medicine or law or in between, 173,042 (1,500% increase), while total serv- but from another external discourse—that ice recipients increased from about 247,780 of abnormality. The power of normaliza- to an estimated 439,515 individuals (an tion is cloaked by medical notions of ill- increase of only 77.4%) (Lakin et al. 2010). ness and legal notions of recidivism. The In a similar vein, for those drawing history of treatment and categorization of on the conceptualization of the prison- those labeled as feebleminded, and later industrial complex, the increase in the “mentally retarded,” is also paved on cob- number of prisons and cells is not seen as blestones of notions of social danger, as related to similar increases in crime, but as prominent eugenicists tried to “scientifi- driven by capitalist and racist impetuses cally” establish that those whom they char- (Christie 2000; Goldberg and Evans 1997; “THE INSTITUTION YET TO COME” | 137

Gilmore 2006). According to Parenti (1999), my life. I’ll never forget the first time that the criminal (in)justice system generally, someone said to me “. . . but you got a life and the privatization of prisons specifi- sentence sitting in that wheelchair and all cally, exist to “manage and contain the new he got was a year in a restitution center!?” surplus populations created by neo-liberal (Bird 2006). Such comparisons seem to economic policies,” and the global flow create an equation of disability with pun- of capital. Under this new configuration, ishment, which is not a new phenomenon. men of color in particular have turned into One of the earliest sources of stigmatiza- commodities in high demand for the grow- tion of disability can be found in religious ing prison industry. The prison comprises or magical thinking that assumed that dis- a solution to one of the deepest inherent ability is a result of punishment from the contradictions of capitalism itself: how to gods or a result of witchcraft. maintain a proletariat class (in this case In addition, if one listens to the narra- mostly poor people of color), while con- tives of disabled people who were segre- trolling them from rising up against their gated in institutions, another obvious con- conditions of being. The prison solves this nection emerges in which many describe dilemma almost seamlessly. Some perceive their time there as a form of incarceration. the carceral system as a failing system, in Self advocates (activists with intellectual that is actually creates criminality rather disability labels) compare institutions to than reduces it. The prison thus becomes a living in prisons, and characterize their hub and training school for criminal behav- existence their as incarceration or being ior (Morris 1995). Foucault (1995) aids us jailed while committing no apparent crime in the realization that the prison has not (Hayden, Lakin and Taylor 1995/6; Hayden failed, but indeed, has succeeded. Its suc- 1997). Such statements, combined with cess lies in the making of docile bodies and McBride Johnson’s epigraph and Bird’s an underclass to imprison. This political narrative above, help crystallize the vital economic analysis of imprisonment and connections between prisoners and peo- institutionalization should therefore be of ple with disabilities, but may also pit one great interest to critical scholars and activ- group against the other and ignore both ists who are interested in understanding the differences and intersections between the phenomenon of “mass incarceration” the two populations. from an intersectional lens. I argue that today one cannot analyze the forces of incarceration without having a disability lens. For instance, a dispropor- FROM ANALOGIES TO tionate number of persons incarcerated in INTERSECTIONS US prisons and jails are disabled. As sug- While such comparisons help crystallize the gested above, prisoners with disabilities coalition building potential between those are a population that is hard to count (and placed in institutions and in prisons, they account for) but is definitely at the inter- also obscure the important ways in which section of the disability and imprisonment one identity or form of oppression is used juggernaut. There is much at stake in count- to discredit the other. In an essay in Justice ing the percentage of disabled prisoners. In Matters, Bird (2006) posits the important terms of policy and legislation, if one can connections she finds between the two prove sufficiently that there is a large per- populations but cautions: “In 1995 I began centage of prisoners with a specific disabil- sharing my story publicly of how being parity, then it would require a specific solution alyzed in a drunk driving crash has changed such as requesting more hospital units to 138 | LIAT BEN-MOSHE

be built in specific prisons or prescribing ABOLITION AS A FORM OF more medications on a particular unit. For RESISTANCE TO INCARCERATION activists, using statistics that demonstrate the high prevalence of disabled prisoners In addition to the connections between the could go in several directions. If one is an forces of incarceration and decarceration activist in NAMI (National Alliance of Men- in prisons and institutions, I would like to tal Illness), for instance, then these statis- end with an analysis of the connections tics are used to show that deinstitution- between the movements that resist these alization failed and that prisons and jails forces. Instead of incarcerating people and had become a dumping ground for those segregating them, movements such as fac- labeled as mentally ill with the lack of other tions in anti-psychiatry, deinstitutionaliza- alternatives. Such campaigns, which have tion and prison abolition, propose radical been ongoing since the early 1990s, call in new ways of treatment, care and govern- essence for the (re)hospitalization of those ance that do not require the segregation of with psychiatric diagnosis (see Torrey 1996 people from their peers. for example). However, such critiques Deinstitutionalization could be charac- from activists and scholars about inappro- terized not only as a process or an exodus of priately placing disabled people in nursing oppressed people outside the walls of insti- homes or prisons reproduce the sentiment tutions. In the eyes of those who pushed for that there are those who are somehow institutional closure and community living, appropriately placed in nursing homes and deinstitutionalization is perceived as a phi- prisons. In other words, it reinscribes the losophy (Ben-Moshe 2011). The resistance notion that there are those who really need to institutionalization and psychiatric hos- to be segregated in carceral edifices, while pitals arose from a broader social critique those who are young and disabled do not. of medicalization and medical authority However, others might use these statis- (Conrad and Schneider 1992; Zola 1991) tics to showcase the cruelty of the criminal and a new understanding of human value, “justice” system and call for the just treat- especially in regards to people with disabil- ment of all prisoners (such as abolishing ities, as seen in the principles of normaliza- the use of isolation units for everyone). The tion (Wolfensberger 1972), the anti-psychi- downturn of such arguments, much like atry and ex-patients movement (Chamber- those in the calls to abolish the death pen- lin 1977; Szasz 1961) and the People First alty for those who are labeled as intellectu- movement (Williams and Shoultz 1982). ally disabled, is that they can turn into argu- Although these ideological shifts did not ments which reproduce ableist rhetoric solely bring about deinstitutionalization and may seem to call for the release of some nationwide, I believe that any significant prisoners (i.e. those most disabled) but not decrease in institutionalized populations others. A similar tactic is used by those who would have been impossible without them. find conditions of disabled prisoners and Furthermore, deinstitutionalization is not those institutionalized so deplorable that just something that happened, but some- they call for the creation of more hospital thing for which many were relentlessly beds in prisons, reform and overhaul of advocating. As such, deinstitutionalization psychiatric hospitals and institutions for can be construed as an active form of activ- those labeled as intellectually disabled and ism and as a social movement. the creation of more accessible prisons. There are many ways in which one can Others call not for reforming these edifices, fight for social justice or social change. but for abolishing them altogether. In the struggle to eliminate institutional “THE INSTITUTION YET TO COME” | 139 settings for those labeled as develop- health care for prisoners is something mentally or psychiatrically disabled, and activists should support, as integral to replacing them with community living and abolitionist and decarcerating strategies. community-based services, there were However, some health care initiatives are myriad possibilities through which the opposed by abolitionists, such as attempts struggle could have taken place. But what to open prison hospitals or separate clini- is illuminating in these cases is that some cal wards, as these would only expand the took the view that the only route for suc- scope of incarceration in the long haul. cessful social change was to abolish these Many prison abolition and anti-psychia- institutions and close them down, while try activists are insistent that the trend to others advocated for improving or reform- develop mental health services within the ing them. This tension between reform prison only serves to criminalize (mostly and abolition is a key characteristic of the women) with psychiatric and cognitive prison abolitionist stance. However, there disabilities further, as quality health serv- is no agreement as to how to resolve it, as ices of this nature are sparse outside the the movement ranges from calls for focus- walls of the prison, while funds go to oper- ing on the present circumstances of prison- ate them within an already oppressive ers and advocating for gradual changes, to system. those who contend that any type of reform Abolition can become a useful strategy would lead to the growth of the prison- for resistance to all forms of incarceration, industrial complex and should be avoided as it does not acknowledge the structure by activists. Some (such as Knopp et al. as it is but envisions and creates a new 1976) suggest conceptualizing the long worldview in which oppressive structures term goal of prison abolition as a chain for do not exist. It thus goes beyond protesting shorter campaigns around specific issues— the current circumstances, to creating new like jail diversion, restitution programs, or conditions of possibility by collectively the move of those released to community contesting the status quo. Norwegian soci- placements. Such strategic use of abolition ologist Thomas Mathiesen conceptualizes and reform can also be applied to the con- abolition as an alternative in the making: text of abolishing psychiatric confinement “The alternative lies in the “unfinished,” and forced medical treatments, as sug- in the sketch, in what is not yet fully exist- gested by anti-psychiatry activist Bonnie ing” (Mathiesen 1974: 1). According to Burstow. In her keynote speech in the 2009 Mathiesen, abolition takes place when PsychOut conference, Burstow suggests one breaks with the established order and that the short term goals of anti-psychiatry simultaneously breaks new ground. Aboli- activists, such as reform efforts, should be tion is triggered by making people aware kept as such, as concrete and direct partial of the necessary dilemma they are faced abolitions (or reforms) on the road to long with- continuing with the existing order term change of abolishing psychiatry. with some changes (i.e. reform) or transi- This contention between abolition tioning to something unknown. The ques- and reform is not only a scholarly debate tion becomes not “what is the best alterna- but one with pragmatic implications. tive” in its final formulation, but how this For instance, Angela Y. Davis (2003), as a new order shall begin from the old. practicing abolitionist, suggests to ques- The most powerful relevance of the tion what kinds of reforms are sought and prison abolitionist and anti-institutional whether they will strengthen the system stance is to analyze imprisonment and in the long run. For instance, fighting for institutional segregation as a core structure 140 | LIAT BEN-MOSHE

that shapes social relations in society, rating excluded groups into current struc- not just for those affected directly but for tures—such as education systems, the gov- everyone. It is not merely about closure ernment, corporations and politics. But of prisons or institutions, but it is a revo- these frameworks only change the hierar- lutionary framework, which transforms chy of the structures in which marginal- the way we analyze and understand forces ized populations are placed, and not the that shape our histories and everyday lives: structures themselves. Under a more abo- notions like “crime” or “innocence” (what litionary mindset it is clear that forms of gets to be defined as crime, and who gets to oppression are not always characterized by be defined as criminal); “disability” (as an exclusion, but by pervasive inclusion that identity not just a medical diagnosis) and sometimes does more damage. The goal of rehabilitation (a benign process or a force a non-carceral society is not to replace one of assimilation and normalization); ideas form of control, such as a hospital, institu- of punishment (justice vs. revenge or retri- tion and prison, with another, such as psy- bution); notions of community (as in “liv- chopharmaceuticals, nursing homes and ing in the community” or “community re- group homes in the community. The aspi- entry”); or “institution” (who defines what ration is to fundamentally change the way gets to be called an institution); notions of we react to each other, the way we respond freedom and equality (can we feel free and to difference or harm, the way normalcy is safe without locking others away?) and on defined and the ways resources are distrib- the other hand concepts of danger and uted and accessed. It is no wonder then that protection (who do we protect by segre- the abolitionary approach to institutionali- gating people behind bars in psychiatric zation and imprisonment, as an epistemic hospitals and prisons? Is it for “their own change that breaks down the segregation- good?”). ist model altogether, did not occur overall. As Angela Y. Davis (2003) suggests, there Or at least not yet . . . is no one single alternative to imprisonment, but a vision of a more just society— CONCLUSION revamping of the education system, comprehensive health care for all, demilitariza- This article suggests the pressing need to tion, and a justice system based on repa- expand notions of what comes to be clas- ration and reconciliation. One of the main sified as “incarceration,” as including insti- problems with prisons and institutions is tutionalization in a wide variety of enclosed that they become a catch all for “problem- settings, including prisons, jails, detention atic populations” that are deemed socially centers, institutions for the intellectually undesirable or dangerous. The alternative disabled, treatment centers, and psychiatric to incarceration therefore cannot be a catch hospitals. Such formulations conceptualize all solution, but an individual one, in rela- incarceration as a continuum and a multi- tion to the harm done and the community faceted phenomenon, not one that occurs in which one is involved. Prison abolition in one locale or in one historical period, in and deinstitutionalization, therefore, is not contrast to current interpretations of “the about helping prisoners or people with dis- rise in incarceration” or the success (or fail- abilities, but is about societal change that ure) of deinstitutionalization. Closure of will improve the lives of all, inside and out- large institutions has not led to freedom for side prisons and institutions. disabled people, nor has it resulted in the According to liberal discourses that call radical acceptance of the fact of difference for social change, change entails incorpo- amongst us. My main argument here is that “THE INSTITUTION YET TO COME” | 141 the (his)story of disability is the (his)story Ben-Moshe, L. (2011) Genealogies of Resistance of incarceration and there is a need to to Incarceration: Abolition politics in anti- connect them in terms of their history, as prison and deinstitutionalization activism in medico-judicial hybrids; their present, in the U.S. Unpublished dissertation. Syracuse, the disproportionate number of disabled N.Y.: Syracuse University. Ben-Moshe, L. (2012) Disabling Incarceration: prisoners and those still institutionalized; Connecting disability to divergent confine- and the future, in terms of movements that ments in the USA. Critical Sociology 37 (7). seek to abolish the segregationist model Bird, A. (2006) Disability and the Dehuman- that underpins systems of incarceration. ization of Prisoners. Retrieved August 2000 It is only through such coalitions that we from http://www.safetyandjustice.org/story/ can truly analyze, and perhaps circumvent, 842 “the institution yet to come.” Bogdan, R. and Biklen, D. (1977). Handicapism. Social Policy, 7 (5) March/April: 14–19. ACKNOWLEDGMENTS Braddock, D., Hemp, R., Rizzolo, M. C., Haffer, L., Tanis, E. S. and Wu, J. (2011) The State of Parts of this chapter appeared in Critical the States in Developmental Disabilities 2011. Sociology 37 (7) (2012) as “Disabling Incar- Boulder: University of Colorado, Department ceration: Connecting Disability to Diver- of Psychiatry and Coleman Institute for Cog- gent Confinements in the USA.” I want to nitive Disabilities. thank Dr. Michael Rembis for providing Brief of the American Association on Mental Retardation et al. in Support of Petitioners, me with some of the data on disabled pris- Goodman v. Georgia, No. 02–10168, 11th Cir- oners. I want to also acknowledge NIDRR cuit (July 29, 2005). Advanced Training in Translational and Bureau of Justice Statistics (BJS) (2010) Cor- Tranformational Research to Improve Out- rectional Populations in the United States comes for People with Disabilities, Grant 2009. Washington D.C.: U.S. Department of No. H133P110004 and University Center Justice. for Excellence in Developmental Disabili- Chamberlin, J. (1977) On Our Own: Patient-con- ties, Grant No. 90-DD-0655/01 for funding trolled alternatives to the mental health sys- my postdoctoral position at the University tem. National Empowerment Center. of Illinois-Chicago that enabled me to write Chapman, C., Ben-Moshe, L. and Carey, A. this chapter. C. (forthcoming) Reconsidering confinement: Interlocking locations and logics of confinement. In Ben-Moshe, L. , Carey, A. NOTE and Chapman, C. (eds.) Disability Incarcer- 1. Jonathan Metzl’s The Protest Psychosis: How ated: Imprisonment and dis/ability in North schizophrenia became a black disease (Beacon America. Press, 2010) can provide a possible explanation Charlton, J. I. (1998) Nothing About Us Without of this phenomenon Us: Disability oppression and empowerment. Berkeley: University of California Press. BIBLIOGRAPHY Christie, N. (2000). 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Foundations of a theory of personal conduct. States. Berkeley: University of California New York: Hoeber-Harper. Press. Thompson, H. A. (2010) Why mass incarcera- Wacquant, L. (2010) Class, race and hyperin- tion matters: Rethinking crisis, decline, and carceration in revanchist America. Daedalus transformation in postwar American history. 139 (3): 74–90. Journal of American History 97: 3. Waldman, A. and Levi, R. (2011) Inside This Thomson, R. G. (1997) Extraordinary Bod- Place, Not of It: Narratives from women’s pris- ies: Figuring physical disability in American ons. San Francisco: McSweeney Press. culture and literature. New York: Columbia Wendell, S. (1996) The Rejected Body: Feminist University Press. philosophical reflections on disability. New Torrey, E. F. (1996) Out of the Shadows: Confront- York: Routledge. ing America’s mental illness crisis. Hoboken, Williams, P. and Shoultz, B. (1982) We Can Speak N.J.: John Wiley & Sons. for Ourselves. London: Souvenir Press. Tremain, S. (2002) On the subject of impair- Wolfensberger, W. (1972) The Principle of ment. In Corker and Shakespeare (eds.) Dis- Normalization in Human Services. Toronto: ability/Postmodernity: Embodying disability National Institute on Mental Retardation. theory. London: Continuum. Zola, I. K. (1991) The medicalization of aging Trent, J. W. (1995) Inventing the Feeble Mind: A and disability. Advances in Medical Sociology history of mental retardation in the United 2: 299–315. PART III

Stigma and Illness CHAPTER 11

Stigma: An Enigma Demysti ed Lerita Coleman Brown

Nature caused us all to be born equal; if fate its behavioral, cognitive, and affective is pleased to disturb this plan of the general components and reveals that stigma is a re- law, it is our responsibility to correct its ca- sponse to the dilemma of difference. price, and to repair by our attention the usur- pations of the stronger. THE DILEMMA —Maurice Blanchot No two human beings are exactly alike: there are countless ways to differ. Shape, size, skin What is stigma and why does stigma remain? color, gender, age, cultural background, per- Because stigmas mirror culture and society, sonality, and years of formal education are they are in constant flux, and therefore the just a few of the infinite number of ways in answers to these two questions continue to which people can vary. Perceptually, and in elude social scientists. Viewing stigma from actuality, there is greater variation on some multiple perspectives exposes its intricate of these dimensions than on others. Age nature and helps us to disentangle its web and gender, for example, are dimensions of complexities and paradoxes. Stigma rep- with limited and quantifiable ranges; yet resents a view of life; a set of personal and they interact exponentially with other physi- social constructs; a set of social relations cal or social characteristics that have larger and social relationships; a form of social re- continua (e.g., body shape, income, cultural ality. Stigma has been a difficult concept to background) to create a vast number of hu- conceptualize because it reflects a property, man differences. Goffman states, though, a process, a form of social categorization, that “stigma is equivalent to an undesired and an affective state. differentness” (see Stafford & Scott, 1986). Two primary questions, then, that The infinite variety of human attributes sug- we as social scientists have addressed gests that what is undesired or stigmatized is are how and why during certain histori- heavily dependent on the social context and cal periods, in specific cultures or within to some extent arbitrarily defined. The large particular social groups, some human dif- number of stigmatizable attributes and sev- ferences are valued and desired, and other eral taxonomies of stigmas in the literature human differences are devalued, feared, offer further evidence of how arbitrary the or stigmatized. In attempting to answer selection of undesired differences may be these questions, I propose another view (see Ainlay & Crosby, 1986; Becker & Arnold, of stigma, one that takes into account 1986; Solomon, 1986; Stafford & Scott, 1986). 148 | LERITA COLEMAN BROWN

What is most poignant about Goffman’s important to note that it is only when we description of stigma is that it suggests that make comparisons that we can feel differ- all human differences are potentially stig- ent. Stigmatization or feeling stigmatized matizable. As we move out of one social is a consequence of social comparison. For context where a difference is desired into this reason, stigma represents a continuum another context where the difference is un- of undesired differences that depend upon desired, we begin to feel the effects of stig- many factors (e.g., geographical location, ma. This conceptualization of stigma also culture, life cycle stage) (see Becker & indicates that those possessing power, the Arnold, 1986). dominant group, can determine which hu- Although some stigmatized conditions man differences are desired and undesired. appear escapable or may be temporary, In part, stigmas reflect the value judgments some undesired traits have graver social of a dominant group. consequences than others. Being a medi- Many people, however, especially those cal resident, being a new professor, being who have some role in determining the 7 feet tall, having cancer, being black, or desired and undesired differences of the being physically disfigured or mentally re- zeitgeist, often think of stigma only as a tarded can all lead to feelings of stigmati- property of individuals. They operate un- zation (feeling discredited or devalued in der the illusion that stigma exists only for a particular role), but obviously these are certain segments of the population. But not equally stigmatizing conditions. The the truth is that any “nonstigmatized” degree of stigmatization might depend on person can easily become “stigmatized.” how undesired the difference is in a par- “Nearly everyone at some point in life will ticular social group. experience stigma either temporarily or Physical abnormalities, for example, permanently. . . . Why do we persist in this may be the most severely stigmatized dif- denial?” (Zola, 1979, p. 454). Given that ferences because they are physically salient, human differences serve as the basis for represent some deficiency or distortion in stigmas, being or feeling stigmatized is vir- the bodily form, and in most cases are un- tually an inescapable fate. Because stigmas alterable. Other physically salient differ- differ depending upon the culture and the ences, such as skin color or nationality, are historical period, it becomes evident that considered very stigmatizing because they it is mere chance whether a person is born also are permanent conditions and cannot into a nonstigmatized or severely stigma- be changed. Yet the stigmatization that one tized group. feels as a result of being black or Jewish or Because stigmatization often occurs Japanese depends on the social context, within the confines of a psychologically specifically social contexts in which one’s constructed or actual social relationship, skin color or nationality is not a desired the experience itself reflects relative com- one. A white American could feel tempo- parisons, the contrasting of desired and rarily stigmatized when visiting Japan due undesired differences. Assuming that flaw- to a difference in height. A black student less people do not exist, relative compari- could feel stigmatized in a predominantly sons give rise to a feeling of superiority in white university because the majority of some contexts (where one possesses a de- the students are white and white skin is a sired trait that another person is lacking) desired trait. But a black student in a pre- but perhaps a feeling of inferiority in other dominantly black university is not likely to contexts (where one lacks a desired trait feel the effects of stigma. Thus, the sense that another person possesses). It is also of being stigmatized or having a stigma is STIGMA: AN ENIGMA DEMYSTIFIED | 149 inextricably tied to social context. Of equal is a social construct, constructed by cul- importance are the norms in that context tures, by social groups, and by individuals that determine which are desirable and to designate some human differences as undesirable attributes. Moving from one discrediting, then the stigmatization pro- social or cultural context to another can cess is indeed a powerful and pernicious change both the definitions and the conse- social tool. The inferiority/superiority quences of stigma. issue is a most interesting way of under- Stigma often results in a special kind of standing how and why people continue to downward mobility. Part of the power of stigmatize. stigmatization lies in the realization that Some stigmas are more physically salient people who are stigmatized or acquire a than others, and some people are more ca- stigma lose their place in the social hier- pable of concealing their stigmas or escap- archy. Consequently, most people want to ing from the negative social consequences ensure that they are counted in the non- of being stigmatized. The ideal prototype stigmatized “majority.” This, of course, (e.g., young, white, tall, married, male, leads to more stigmatization. with a recent record in sports) that Stafford Stigma, then, is also a term that connotes cites may actually possess traits that would a relationship. It seems that this relation- be the source of much scorn and derision ship is vital to understanding the stigmatiz- in another social context. Yet, by insulat- ing process. Stigma allows some individuals ing himself in his own community, a man to feel superior to others. Superiority and like the one described in the example can inferiority, however, are two sides of the ensure that his “differentness” will receive same coin. In order for one person to feel approbation rather than rejection, and he superior, there must be another person who will not be subject to constant and severe is perceived to be or who actually feels infe- stigmatization. This is a common response rior. Stigmatized people are needed in order to stigma among people with some social for the many nonstigmatized people to feel influence (e.g., artists, academics, million- good about themselves. aires). Often, attributes or behaviors that On the other hand, there are many might otherwise be considered “abnormal” stigmatized people who feel inferior and or stigmatized are labeled as “eccentric” concede that other persons are superior among persons of power or influence. The because they possess certain attributes. fact that what is perceived as the “ideal” In order for the process to occur (for one person varies from one social context to person to stigmatize another and have the another, however, is tied to Martin’s no- stigmatized person feel the effects of stig- tion that people learn ways to stigmatize in ma), there must be some agreement that each new situation. the differentness is inherently undesirable. In contrast, some categories of stigma- Moreover, even among stigmatized people, tized people (e.g., the physically disabled, relative comparisons are made, and people members of ethnic groups, poor people) are reassured by the fact that there is some- cannot alter their stigmas nor easily dis- one else who is worse off. The dilemma of guise them. People, then, feel permanently difference, therefore, affects both stigma- stigmatized in contexts where their dif- tized and nonstigmatized people. ferentness is undesired and in social envi- Some might contend that this is the very ronments that they cannot easily escape. old scapegoat argument, and there is some Hence, power, social influence, and social truth to that contention. But the issues control play a major role in the stigmatiza- here are more finely intertwined. If stigma tion process. 150 | LERITA COLEMAN BROWN

In summary, stigma stems from differ- Sigelman and Singleton (1986) offer a ences. By focusing on differences we ac- number of insightful observations about tively create stigmas because any attribute how children learn to stigmatize. Children or difference is potentially stigmatizable. develop a natural wariness of strangers as Often we attend to a single different at- their ability to differentiate familiar from tribute rather than to the large number of novel objects increases (Sroufe, 1977). similar attributes that any two individu- Developmental psychologists note that als share. Why people focus on differences stranger anxiety is a universal phenom- and denigrate people on the basis of them enon in infants and appears around the is important to understanding how some age of seven months. This reaction to dif- stigmas originate and persist. By reexam- ferences (e.g., women versus men, children ining the historical origins of stigma and versus adults, blacks versus whites) is an the way children develop the propensity to interesting one and, as Sigelman and Sin- stigmatize, we can see how some differenc- gleton point out, may serve as a prototype es evolve into stigmas and how the process for stigmatizing. Many children respond in is linked to the behavioral (social control), a positive (friendly) or negative (fearful, ap- affective (fear, dislike), and cognitive (per- prehensive) manner to strangers. Strangers ception of differences, social categoriza- often arouse the interest (Brooks & Lewis, tion) components of stigma. 1976) of children but elicit negative reactions if they intrude on their personal space (Sroufe, 1977). Stranger anxiety tends to THE ORIGINS OF STIGMA fade with age, but when coupled with self- The phrase to stigmatize originally referred referencing it may create the conditions for to the branding or marking of certain peo- a child to learn how to respond to human ple (e.g., criminals, prostitutes) in order to differences or how to stigmatize. make them appear different and separate Self-referencing, or the use of another’s from others (Goffman, 1963). The act of interpretation of a situation to form one’s marking people in this way resulted in ex- own understanding of it, commonly occurs ile or avoidance. In most cultures, physical in young children. Infants often look toward marking or branding has declined, but a caregivers when encountering something more cognitive manifestation of stigma- different, such as a novel object, person, tization—social marking—has increased or event (Feinman, 1982). The response to and has become the basis for most stigmas novel stimuli in an ambiguous situation (Jones et al., 1984). Goffman points out, may depend on the emotional displays of though, that stigma has retained much of the caregiver; young children have been its original connotation. People use differ- known to respond positively to situations if ences to exile or avoid others. In addition, their mothers respond reassuringly (Fein- what is most intriguing about the ontogen- man, 1982). Self-referencing is instrumen- esis of the stigma concept is the broadening tal to understanding the development of of its predominant affective responses such stigmatization because it may be through as dislike and disgust to include the emo- this process that caregivers shape young tional reaction of fear. Presently, fear may be children’s responses to people, especially instrumental in the perpetuation of stigma those who possess physically salient dif- and in maintaining its original social func- ferences (Klinnert, Campos, Sorce, Emde, tions. Yet as the developmental literature & Svejda, 1983). We may continue to learn reveals, fear is not a natural but an acquired about how to stigmatize from other impor- response to differences of stigmas. tant figures (e.g., mentors, role models) as STIGMA: AN ENIGMA DEMYSTIFIED | 151 we progress through the life cycle. Powerful the information-processing capacities of authority figures may serve as the source young children so that negative responses of self-referencing behavior in new social to stigma later become automatic. At some contexts (Martin, 1986). point, the development of social cognition Sigelman and Singleton (1986) also must intersect with the affective responses point out that preschoolers notice differ- that parents or adults display toward stig- ences and tend to establish preferences matized people. Certain negative emo- but do not necessarily stigmatize. Even tions become attached to social categories on meeting other children with physical (e.g., all ex-mental patients are dangerous, disabilities, children do not automatically all blacks are angry or harmful). Although eschew them but may respond to actual the attitudes (cognitions) about stigma physical and behavioral similarities and assessed in paper-and-pencil tasks may differences. There is evidence, moreover, change in the direction of what is socially indicating that young children are curious acceptable, the affect and behavior of el- about human differences and often stare ementary- and secondary-school children at novel stimuli (Brooks & Lewis, 1976). as well as adults reflect the early negative Children frequently inquire of their parents affective associations with stigma. The or of stigmatized persons about their dis- norms about stigma, though, are ambigu- tinctive physical attributes. In many cases, ous and confusing. They teach young chil- the affective response of young children is dren to avoid or dislike stigmatized people, interest rather than fear. even though similar behavior in adults is Barbarin offers a poignant example of considered socially unacceptable. the difference between interest and fear in his vignette about Myra, a child with can- STIGMA AS A FORM OF COGNITIVE cer. She talks about young children who are PROCESSING honest and direct about her illness, an attitude that does not cause her consternation. The perceptual processing of human dif- What does disturb her, though, are parents ferences appears to be universal. Ainlay who will not permit her to baby-sit with their and Crosby suggest that differences arouse children for fear that she might give them us; they can please or distress us. From a cancer. Thus, interest and curiosity about phenomenological perspective, we carry stigma or human differences may be natu- around “recipes” and “typifications” as ral for children, but they must learn fear and structures for categorizing and order- avoidance as well as which categories or ating stimuli. Similarly, social psychologists tributes to dislike, fear, or stigmatize. Chil- speak of our need to categorize social dren may learn to stigmatize without ever stimuli in such terms as schemas and ste- grasping “why” they do so (Martin, 1986), reotypes (Crocker & Lutsky, 1986). These just as adults have beliefs about members of approaches to the perception of human stigmatized groups without ever having met differences indirectly posit that stigmatiz- any individuals from the group (Crocker & ing is a natural response, a way to maintain Lutsky, 1986). The predisposition to stigma- order in a potentially chaotic world of so- tize is passed from one generation to the cial stimuli. People want to believe that the next through social learning (Martin, 1986) world is ordered. or socialization (Crocker & Lutsky, 1986; Although various approaches to social Stafford & Scott, 1986). categorization may explain how people Sigelman and Singleton agree with Mar- stereotype on the basis of a specific at- tin that social norms subtly impinge upon tribute (e.g., skin color, religious beliefs, 152 | LERITA COLEMAN BROWN

deafness), they do not explain the next nonstigmatized groups. Several authors step—the negative imputations. Tradition- discuss the need for people to accentuate al approaches to sociocognitive processing between-group differences and minimize also do not offer ideas about how people within-group differences as a requisite can perceptually move beyond the stereo- for group identity (Ainlay & Crosby, 1986; type, the typification, or stigma to perceive Crocker & Lutsky, 1986; Sigelman & Single- an individual. Studies of stereotyping and ton, 1986). Yet these authors do not ex- stigma regularly reveal that beliefs about plore in depth the reasons for denigrating the inferiority of a person predominate in the attributes of the out-group members the thoughts of the perceiver (Crocker & and elevating the attributes of one’s own Lutsky, 1986). group, unless there is some feeling that the Stigma appears to be a special and in- out-group could threaten the balance of sidious kind of social categorization or, as power. Crocker and Lutsky note, however, Martin explains, a process of generalizing that stereotyping is frequently tied to the from a single experience. People are treat- need for self-enhancement. People with ed categorically rather than individually, low self-esteem are more likely to identify and in the process are devalued (Ainlay & and maintain negative stereotypes about Crosby, 1986; Barbarin; Crocker & Lutsky, members of stigmatized groups; such peo- 1986; Stafford & Scott, 1986). In addition, as ple are more negative in general. This line Crocker and Lutsky point out, coding peo- of reasoning takes us back to viewing stig- ple in terms of categories (e.g., “X is a red- ma as a means of maintaining the status head”) instead of specific attributes (“X has quo through social control. Could it be that red hair”) allows people to feel that stigma- stigma as a perceptual tool helps to rein- tized persons are fundamentally different force the differentiation of the population and establishes greater psychological and that in earlier times was deliberately desig- social distance. nated by marking? One explanation offered A discussion of the perceptual basis of by many theorists is that stereotypes about stigma inevitably leads back to the notion of stigmatized groups help to maintain the master status (Goffman, 1963). Perceptually, exploitation of such groups and preserve stigma becomes the master status, the attri- the existing societal structure. bute that colors the perception of the entire Are there special arrangements or spe- person. All other aspects of the person are cial circumstance, Ainlay and Crosby ask, ignored except those that fit the stereotype that allow people to notice differences but associated with the stigma (Kanter, 1979). not denigrate those who have them? On Stigma as a form of negative stereotyping occasion, nonstigmatized people are able has a way of neutralizing positive qualities to “break through” and to see a stigmatized and undermining the identity of stigmatized person as a real, whole person with a variety individuals (Barbarin). This kind of social of attributes, some similar traits and some categorization has also been described by different from their own (Davis, 1964). Just one sociologist as a “discordance with per- how frequently and in what ways does this sonal attributes” (Davis, 1964). Thus, many happen? stigmatized people are not expected to be Ainlay and Crosby suggest that we begin intelligent, attractive, or upper class. to note differences within a type when we Another important issue in the percep- need to do so. The example they give about tion of human differences or social cogni- telephones is a good one. We learn differ- tion is the relative comparisons that are ences among types of telephones, appli- made between and within stigmatized and ances, schools, or even groups of people STIGMA: AN ENIGMA DEMYSTIFIED | 153 when we need to. Hence stereotyping or and under what conditions does an attri- stigmatizing is not necessarily automatic; bute become a stigmatized one? (b) can a when we want to perceive differences we person experience stigmatization without perceive them, just as we perceive similari- knowing that a trait is devalued in a spe- ties when we want to. In some historical cific social context? (c) does a person feel instances, society appears to have recog- stigmatized even though in a particular so- nized full human potential when it was cial context the attribute is not stigmatized required, while ignoring certain devalued or the stigma is not physically or behavior- traits. When women were needed to oc- ally apparent? (d) can a person refuse to be cupy traditionally male occupations in the stigmatized or destigmatize an attribute by United States during World War II, gender ignoring the prevailing norms that define differences were ignored as they have been it as a stigma? ignored in other societies when women These questions lead to another one: were needed for combat. Similarly, the U.S. Would stigma persist if stigmatized people armed forces became racially integrated did not feel stigmatized or inferior? Cer- when there was a need for more soldiers to tainly, a national pride did not lessen the fight in World War II (Terry, 1984). persecution of the Jews, nor does it provide Thus, schemas or stereotypes about stig- freedom for blacks in South Africa. These matized individuals can be modified but two examples illustrate how pervasive and only under specific conditions. When stig- powerful the social control aspects of stigmatized people have essential information ma are, empowering the stigmatizer and or possess needed expertise, we discover stripping the stigmatized of power. Yet a that some of their attributes are not so dif- personal awakening, a discover that the referent, or that they are more similar to us sponsibility for being stigmatized does not than different. “Cooperative interdepen- lie with oneself, is important. Understand- dence” stemming from shared goals may ing that the rationale for discrimination change the nature of perceptions and the and segregation based on stigma lies in nature of relationships (Crocker & Lutsky, the mind of the stigmatizer has led people 1986). Future research on stigma and on like Mahatma Gandhi and civil rights activ- social perception might continue to investi- ist Rosa Parks to rise above the feeling of gate the conditions under which people are stigmatization, to ignore the norms, and to less likely to stereotype and more likely to re- disobey the exiting laws based on stigma. spond to individuals rather than categories There have been women, elderly adults, (cf., Locksley, Borgida, Brekke, & Hepburn, gays, disabled people, and many others 1980; Locksley, Hepburn & Ortiz, 1982). who at some point realized that their fundamental similarities outweighed and out- numbered their differences. It becomes THE MEANING OF STIGMA FOR clear that, in most oppressive situations SOCIAL RELATIONS the primary problem lies with the stigma- I have intimated that “stigmatized” and tizer and not with the stigmatized (Sartre, “nonstigmatized” people are tied to- 1948; Schur, 1980, 1983). Many stigmatized gether in a perpetual inferior/superior people also begin to understand that the relationship. This relationship is key to stigmatizer, having established a posi- understanding the meaning of stigma. To tion of false superiority and consequently conceptualize stigma as a social relation- the need to maintain it, is enslaved to the ship raises some vital questions about concept that stigmatized people are funda- stigma. These questions include (a) when mentally inferior. In fact, some stigmatized 154 | LERITA COLEMAN BROWN

individuals question the norms about stig- ficult for younger children who are banned ma and attempt to change the social envi- from most social activities of their peers. ronments for their peers. Social exile conveys another message In contrast, there are some stigmatized about expectations. Many stigmatized persons who accept their devalued status people are not encouraged to develop or as legitimate. Attempting to “pass” and grow, to have aspirations or to be success- derogating others like themselves are two ful. Barbarin reports that children with ways in which stigmatized people effec- cancer lose friendships and receive special, tively accept the society’s negative percep- lenient treatment from teachers. They are tions of their stigma (Goffman, cited in not expected to achieve in the same man- Gibbons, 1986). It is clear, especially from ner as other children. Parents, too, some- accounts of those who move from a non- times allow stigmatized children to behave stigmatized to a stigmatized role, that stig- in ways that “normal” children in the same matization is difficult to resist if everyone family are not permitted to do. Social ex- begins to reinforce the inferior status with clusion as well as overprotection can lead their behavior. Two of the most common to decreased performance. Lowered expec- ways in which nonstigmatized people con- tations also lead to decreased self-esteem. vey a sense of fundamental inferiority to The negative identity that ensues be- stigmatized people are social rejection or comes a pervasive personality trait and social isolation and lowered expectations. inhibits the stigmatized person from de- There are many ways in which people veloping other parts of the self. Another communicate social rejection such as detrimental aspect of stigmatization is speech, eye contact, and interpersonal the practice of treating people, such as the distance. The stigmatized role, as concep- ex-con and ex-mental patient who are at- tualized by the symbolic interactionism tempting to reintegrate themselves into approach, is similar to any other role (e.g., society, as if they still had the stigma. Even professor, doctor) in which we behave ac- the terms we use to describer such persons cording to the role expectations of others suggest that role expectations remain the and change our identity to be congruent same despite the stigmatized person’s ef- with them. Thus, in the case of stigma, role forts to relinquish them. It seems that the expectations are often the same as the ste- paradoxical societal norms that establish reotypes. Some stigmatized people become a subordinate and dependent position for dependent, passive, helpless, and childlike stigmatized people while ostracizing them because that is what is expected of them. for it may stem from the need of nonstig- Social rejection or avoidance affects not matized people to maintain a sense of su- only the stigmatized individual but every- periority. Their position is supported and one who is socially involved, such as family, reinforced by their perceptions that stig- friends, and relatives (Barbarin, 1986). This matized people are fundamentally inferior, permanent form of social quarantine forces passive, helpless, and childlike. people to limit their relationships to other The most pernicious consequence of stigmatized people and to those for whom bearing a stigma is that stigmatized people the social bond outweighs the stigma, such may develop the same perceptual prob- as family members. In this way, avoidance lems that nonstigmatized people have. or social rejection also acts as a form of They begin to see themselves and their social control or containment (Edgerton, lives through the stigma, or as Sartre (1948) 1967; Goffman, 1963; Schur, 1983; Scott, writes about the Jews, they “allow them- 1969). Social rejection is perhaps most dif- selves to be poisoned by the stereotype STIGMA: AN ENIGMA DEMYSTIFIED | 155 and live in fear that they will correspond often come away with greater inner strength to it” (p. 95). As Gibbons observes, stigma- (Jones et al., 1984). They learn to depend on tized individuals sometimes blame their their own resources and, like the earlier ex- difficulties on the stigmatized trait, rather amples of Mahatma Gandhi and Rosa Parks, than confronting the root of their personal they begin to question the bases for defining difficulties. Thus, normal issues that one normality. Many stigmatized people regain encounters in life often act as a barrier to their identity through redefining normal- growth for stigmatized people because of ity and realizing that it is acceptable to be the attributional process involved. who they are (Ablon, 1981; Barbarin; Becker, The need to maintain one’s identity 1980; Becker & Arnold, 1986). manifests itself in a number of ways, such as the mischievous behavior of the ado- FEAR AND STIGMA lescent boy with cancer cited in Barbarin’s chapter. “Attaining normalcy within the Fear is important to a discussion of how limits of stigma” (Tracy & Gussow, 1978) and why stigma persists. In many cultures seems to be another way of describing the that do not use the term stigma, there is need to establish or recapture one’s iden- some emotional reaction beyond interest tity (Weiner, 1975). or curiosity to differences such as children Stigma uniquely alters perceptions in who are born with birthmarks, epilepsy, or other ways, especially with respect to the a caul. Certain physical characteristics or notion of “normality,” and raises other illnesses elicit fear because the etiology of questions about the dilemma of difference. the attribute or disease is unknown, unpre- Most people do not want to be perceived dictable, and unexpected (Sontag, 1979). as different or “abnormal.” Becker and Ar- People even have fears about the sexual- nold and Gibbons discuss normalization ity of certain stigmatized groups such as as attempts to be “not different” and to persons who are mentally retarded, feel- appear “normal.” Such strategies include ing that if they are allowed to reproduce “passing” or disguising the stigma and act- they will have retarded offspring (Gibbons, ing “normal” by “covering up”—keeping up 1986). It seems that what gives stigma its with the pace of nonstigmatized individu- intensity and reality is fear. als (Davis, 1964; Gibbons, 1986; Goffman, The nature of the fear appears to vary 1963; Weiner, 1975). For stigmatized peo- with the type of stigma. For most stigmas ple, the idea of normality takes on an ex- stemming from physical or mental prob- aggerated importance. Normality becomes lems, including cancer, people experi- the supreme goal for many stigmatized in- ence fear of contagion even though they dividuals until they realize that there is no know that the stigma cannot be developed precise definition of normality except what through contact (see Barbarin, 1986). This they would be without their stigma. Given fear usually stems from not knowing about the dilemma of difference that stigma re- the etiology of a condition, its predictabil- flects, it is not clear whether anyone can ity, and its course. ever feel “normal.” The stigmatization of certain racial, Out of this state of social isolation and ethnic, and gender categories may also be lowered expectations, though, can arise based on fear. This fear, though, cannot some positive consequences. Although the stem from contagion because attributes process can be fraught with pain and diffi- (of skin color, ethnic background, and culty, stigmatized people who manage to re- gender) cannot possibly be transmitted to ject the perceptions of themselves as inferior nonstigmatized people. One explanation 156 | LERITA COLEMAN BROWN

for the fear is that people want to avoid tempting to isolate stigmatized people or “courtesy stigmas” or stigmatization by as- escape from stigma is a manifestation of sociation (Goffman, 1963). Another expla- the underlying fear. nation underlying this type of fear may be The unpredictability of stigma is similar the notion of scarce resources. This is the to the unpredictability of death. Both Gib- perception that if certain groups of people bons and Barbarin note that the develop- are allowed to have a share in all resources, ment of a stigmatized condition in a loved there will not be enough: not enough jobs, one or in oneself represents a major breach not enough land, not enough water, or not of trust—a destruction of the belief that life enough food. Similar explanations from is predictable. In a sense, stigma represents the deviance literature suggest that people a kind of death—a social death. Nonstigma- who stigmatize feel threatened and col- tized people, through avoidance and social lectively feel that their position of social, rejection, often treat stigmatized people as economic, and political dominance will if they were invisible, nonexistent, or dead. be dismantled by members of stigmatized Many stigmas, in particular childhood can- groups (Schur, 1980, 1983). A related expla- cer, remove the usual disguises of mortality. nation is provided by Hughes, who states, Such stigmas can act as a symbolic remind- “that it may be that those whose positions er of everyone’s inevitable death (see Bar- are insecure and whose hopes for the high- barin’s discussion of Ernest Becker’s (1973) er goals are already fading express more The Denial of Death). These same fears can violent hostility to new people” (1945, p. be applied to the acquisition of other stig- 356). This attitude may account for the mas (e.g., mental illness, physical disabili- increased aggression toward members of ties) and help to intensify and perpetuate stigmatized groups during dire economic the negative responses to most stigmatized periods. categories. Thus, irrational fears may help Fear affects not only nonstigmatized but stigmatization to be self-perpetuating with stigmatized individuals as well. Many stig- little encouragement needed in the form of matized people (e.g., ex-cons, mentally re- forced segregation from the political and tarded adults) who are attempting to “pass” social structure. live in fear that their stigmatized attribute The ultimate answers about why stigma will be discovered (Gibbons, 1986). These persists may lie in an examination of why fears are grounded in a realistic assessment people fear differences, fear the future, of the negative social consequences of stig- fear the unknown, and therefore stigma- matization and reflect the long-term social tize that which is different and unknown. and psychological damage to individuals An equally important issue to investigate resulting from stigma. is how stigmatization may be linked to the At some level, therefore, most people fear of being different. are concerned with stigma because they are fearful of its unpredictable and uncon- CONCLUSION trollable nature. Stigmatization appears uncontrollable because human differenc- Stigma is clearly a very complex multidis- es serve as the basis for stigmas. Therefore, ciplinary issue, with each additional per- any attribute can become a stigma. No one spective containing another piece of this really ever knows when or if he or she will enigma. A multidisciplinary approach al- acquire a stigma or when societal norms lowed us as social scientists to perceive might change to stigmatize a trait he or she stigma as a whole; to see from within it already possesses. To deny this truth by at- rather than to look down upon it. Our joint STIGMA: AN ENIGMA DEMYSTIFIED | 157 perspectives have also demonstrated that relinquish the onus for creating or perpet- there are many shared ideas across disci- uating the conditions that surround it. plines, and in many cases only the termi- Changing political and economic cli- nology is different. mates are also important to the stigmatiza- Three important aspects of stigma tion and destigmatization process. What is emerge from this multidisciplinary exami- economically feasible or politically enhanc- nation and may forecast its future. They ing for a group in power will partially de- are fear, stigma’s primary affective compo- termine what attributes are stigmatized, or nent; stereotyping, its primary cognitive at least how they are stigmatized. As many component; and social control, its primary sociologists have suggested, some people behavioral component. The study of the are stigmatized for violating norms, where- relationship of stigma to fear, stereotyping, as others are stigmatized for being of little and social control may elucidate our un- economic or political value (Birenbaum derstanding of the paradoxes that a mul- & Sagarin, 1976, cited in Stafford & Scott, tidisciplinary perspective reveals. It may 1986). We should admit that stigma persists also bring us closer to understanding what as a social problem because it continues stigma really is—not primarily a property of to have some of its original social utility as individuals as many have conceptualized it a means of controlling certain segments of to be but a humanly constructed percep- the population and ensuring that power is tion, constantly in flux and legitimizing our not easily exchanged. Stigma helps to main- negative responses to human differences tain the existing social hierarchy. (Ainlay & Crosby, 1986). To further clarify One might then ask if there will ever be the definition of stigma, one must differen- societies or historical periods without stig- tiate between an “undesired differentness” ma. Some authors hold a positive vision of that is likely to lead to feelings of stigmati- the future. Gibbons, for example, suggests zation and actual forms of stigmatization. that as traditionally stigmatized groups It appears that stigmatization occurs only become more integrated into the general when the social control component is im- population, stigmatizing attributes will lose posed, or when the undesired differentness some of their influence. But historical anal- leads to some restriction in physical and ysis would suggest that new stigmas will social mobility and access to opportunities replace old ones. Educational programs are that allow an individual to develop his or probably of only limited help, as learning her potential. This definition combines the to stigmatize is a part of early social learn- original meaning of stigma with more con- ing experiences (Martin, 1986; Sigelman & temporary connotations and uses. Singleton, 1986). The social learning of stig- In another vein, stigma is a statement ma is indeed very different from learning about personal and social responsibility. about the concept abstractly in a classroom. People irrationally feel that, by separating School experiences sometimes merely rein- themselves from stigmatized individuals, force what children learn about stigmatiza- they may reduce their own risk of acquiring tion from parents and significant others. the stigma (Barbarin, 1986). By isolating in- From a sociological perspective, the dividuals, people feel they can also isolate economic, psychological and social bene- the problem. If stigma is ignored, the respon- fits of stigma sustain it. Stigmas will disap- sibility for its existence and perpetuation pear when we no longer need to legitimize can be shifted elsewhere. Making stigma- social exclusion and segregation (Zola, tized people feel responsible for their own 1979). From the perspective of cognitive stigma allows nonstigmatized people to psychology, when people find it necessary 158 | LERITA COLEMAN BROWN

or beneficial to perceive the fundamental beliefs about stigma (see Ainlay & Crosby, similarities they share with stigmatized 1986 and Stafford & Scott, 1986, discussions people rather than the differences, we will of personal versus socially shared forms of see the beginnings of a real elimination of stigma). Changing human behavior is not stigma. This process may have already oc- as simple as encouraging people to exercise curred during some particular historical their personal beliefs. As social scientists, we period or within particular societies. It is know a number of issues may be involved in certainly an important area for historians, the way personal volition interacts with so- anthropologists, and psychologists to ex- cial norms and personal values. plore. The multidisciplinary approach could Although it would seem that the core of be used in a variety of creative ways to study the problem lies with the nonstigmatized stigma and other social problems. Differ- individuals, stigmatized people also play ent models of how stigma has evolved and an important role in the destigmatization is perpetuated could be subject to test by process. Stigma contests, or the struggles a number of social scientists. They could to determine which attributes are deval- combine their efforts to examine whether ued and to what extent they are devalued, stigma evolves in a similar manner in dif- involve stigmatized and nonstigmatized ferent cultures, or among children of dif- individuals alike (Schur, 1980). Stigmatized ferent cultural and social backgrounds, people, too, have choices as to whether to or during different historical periods. The accept their stigmatized condition and the study of stigma encompasses as many fac- negative social consequences or continue tors and dimensions as are represented to fight for more integration into nonstig- in a multidisciplinary approach. All of the matized communities. Their cognitive elements are interactive and in constant and affective attitudes toward themselves flux. The effective, cognitive, and behav- as individuals and as a group are no small ioral dimensions are subject to the current element in shaping societal responses to cultural, historical, political, and economic them. As long as they continue to focus on climates, which are in turn linked to the the negative, affective components of stig- norms and laws. We know that the respons- ma, such as low self-esteem, it is not likely es of stigmatized and nonstigmatized indi- that their devalued status will change. Self- viduals may at times appear to be separate, help groups may play an important role in but that they are also interconnected and countering this tendency. may produce other responses when con- There is volition or personal choice. Each sidered together. This graphic portrayal stigmatized or nonstigmatized individual of the issues vital to the study of stigma is can choose to feel superior or inferior, and neither exhaustive nor definitive. It does each individual can make choices about suggest, however, that a multidimensional social control and about fear. Sartre (1948) model of stigma is needed to understand views this as the choice between authentic- how these factors, dimensions, and re- ity or authentic freedom, and inauthentic- sponses co-vary. ity or fear of being oneself. Each individual We need more cross-disciplinary re- can choose to ignore social norms regard- search from researchers who do not coming stigma. Personal beliefs about a situ- monly study stigma. For example, a joint ation or circumstance often differ from project among historians, psychologists, norms, but people usually follow the so- economists, and political scientists might cial norms anyway, fearing to step beyond examine the relationship between eco- conformity to exercise their own personal nomic climate, perceptions of scarcity, and STIGMA: AN ENIGMA DEMYSTIFIED | 159 stigmatization. Other joint ventures by an- relationship between stigma and perceived thropologists and economists could design threat, and how stigma may represent “the research on how much income is lost over a kinds of deviance that it seeks out” (Schur, lifetime by members of a stigmatized cate- 1980, p. 22). Finally, social scientists need gory (e.g., blind, deaf, overweight), and how to concentrate on designing an optimal this loss adversely affects the GNP and the system in which every member of society overall economy. Another example would is permitted to develop one’s talents and be work by political scientists and histori- experience one’s full potential regardless ans or anthropologists to understand the of any particular attribute. If such a society links between the stigmatization of spe- were to come about, then perhaps some cific attributes and the maintenance of so- positive consequences would arise from cial control and power by certain political the dilemma of difference. groups. Psychologists might team up with novelists or anthropologists to use case REFERENCES studies to understand individual differ- Ablon, J. 1981. “Stigmatized health conditions.” Social ences or to examine how some stigmatized Science and Medicine, 15: 5–9. persons overcome their discredited status. Ainlay, S. and F. Crosby. 1986. “Stigma, justice and the Other studies of the positive consequences dilemma of difference.” In S. Ainlay, G. Becker, and of stigma might include a joint investiga- L. M. Coleman, eds., The Dilemma of Difference: tion by anthropologists and psychologists A Multicultural View of Stigma, 17–38. New York: Plenum. of cultures that successfully integrate Barbarin, O. 1986. “Family experience of stigma in stigmatized individuals into nonstigma- childhood cancer.” In S. Ainlay, G. Becker, and L. tized communities and utilize whatever M. Coleman, eds., The Dilemma of Difference: A resources or talents a stigmatized person Multicultural View of Stigma. New York: Plenum, has to offer (as the shaman is used in many 163–184. Becker, G. 1980. Growing Old in Silence. Berkeley: Uni- societies) (Halifax, 1979, 1982). versity of California Press. The study of stigma by developmen- Becker, G. and R. Arnold. 1986. “Stigma as social and tal and social psychologists, sociologists, cultural construct.” In S. Ainlay, G. Becker, and L. 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Unhealthy Disabled: Treating Chronic Illnesses as Disabilities Susan Wendell

The relationship between disability and no provision was made for them to work, illness is a problematic one. Many people to receive education, or to participate in are disabled by chronic and/or life-threat- life outside the institutions. At least in ening illnesses, and many people with dis- Canada, not everyone who could live out- abilities not caused by illness have chronic side an institution has achieved that goal, health problems as consequences of their and institutionalization (especially when disabilities; but modern movements for support networks break down) remains the rights of people with disabilities have a threat to some people with disabilities fought the identification of disability with who have achieved independent living (for illness, and for good reasons. This identifi- example, see Snow 1992). All these reasons cation contributes to the medicalization of motivate disabled activists and other peo- disability, in which disability is regarded as ple with disabilities to distinguish them- an individual misfortune, and people with selves from those who are ill. disabilities are assumed to suffer primarily For example, in her recent book Exile from physical and/or mental abnormalities and Pride: Disability, Queerness and Liber- that medicine can and should treat, cure, or ation (1999), Eli Clare describes her resist- at least prevent (Oliver 1990; Morris 1991). ance to the medical model of disability in Moreover, Ron Amundson argues that, terms that emphasize her distance from since illness is perceived as “globally inca- sick people: pacitating,” identifying disability with illness fosters the myth that people with dis- To frame disability in terms of a cure is to abilities are globally incapacitated, which accept the medical model of disability, to in turn contributes to the social devalua- think of disabled people as sick, diseased, tion of disabled people (Amundson 1992, ill people. . . . My CP simply is not a medical 113–14). Perhaps most importantly, in the condition. I need no specific medical care, medication, or treatment for my CP; the recent past, many healthy people with dis- adaptive equipment I use can be found in a abilities were forced to live in long-term computer catalog, not a hospital. Of course, care institutions under medical supervi- disability comes in many varieties. Some dis- sion simply because they needed services abled people, depending on their disabilities, to perform tasks of daily living. In those may indeed have pressing medical needs for institutions, medical personnel control- a specific period of time or on an ongoing led every aspect of their lives, and little or basis. But having particular medical needs 162 | SUSAN WENDELL

differs from labeling a person with multiple and disability groups have increasingly sclerosis as sick, or thinking of quadriplegia welcomed into their activities people with as a disease. The disability rights movement, HIV/AIDS, fibromyalgia, myalgic encepha- like other social change movements, names lomyelitis/chronic fatigue immune dys- systems of oppression as the problem, not function syndrome (ME/CFIDS), and individual bodies. In short it is ableism that other chronic illnesses. However, there needs the cure, not our bodies. (Clare 1999, 105–6) are important differences between healthy disabled and unhealthy disabled people Although she acknowledges that some that are likely to affect such issues as treat- people with disabilities have medical ment of impairment in disability politics needs, including someone with multiple and feminism, accommodation of disabil- sclerosis (MS, which qualifies as a chronic ity in activism and employment, identi- illness), Clare criticizes the medical model fication of persons as disabled, disability for thinking of disabled people as “sick, pride, and prevention and so-called “cure” diseased, ill people” and says that their of disabilities. Here I hope to introduce bodies do not need cure. Yet some people and perhaps clarify some of those differ- with disabilities are sick, diseased, and ill. ences, and to open a conversation about Social constructionist analyses of disabil- the relationships between illness and dis- ity, in which oppressive institutions and ability and between unhealthy and healthy policies, prejudiced attitudes, discrimina- people with disabilities. tion, cultural misrepresentation, and other The issues I will be raising are particu- social injustices are seen as the primary larly important to women because women causes of disability, can reduce attention are more likely than men to be disabled to those disabled people whose bodies are by chronic illnesses (Morris 1994; Trypuc highly medicalized because of their suffer- 1994), and women (including women with ing, their deteriorating health, or the threat other disabilities) suffer more ill health than of death. Moreover, some unhealthy disa- men (Carroll and Niven 1993). Women live bled people, as well as some healthy peo- longer than men, but much of that extra ple with disabilities, experience physical living is done with a disabling chronic ill- or psychological burdens that no amount ness (Carroll and Niven 1993; Report on the of social justice can eliminate. Therefore, Health of Canadians 1996). Accommodat- some very much want to have their bodies ing chronic illnesses in disability politics cured, not as a substitute for curing ableism, and feminism is essential to many disabled but in addition to it. There is a danger that women’s participation in them. Thus, as we acknowledging these facts might provide shall see, it is women with disabilities who support for those who prefer the individu- have been most outspoken about some of alized, medicalized picture of disability. these issues. Thus, in promoting the liberatory vision of social constructionism, it is safer and more WHO IS WHO? comfortable for disability activism to focus on people who are healthy disabled. When I speak of people who are “healthy Despite the problematic relationship disabled,” I mean people whose physical between disability and illness, many peo- conditions and functional limitations are ple who are disabled by chronic illnesses relatively stable and predictable for the are involved in disability politics and con- foreseeable future. They may be people tribute to social constructionist analyses, who were born with disabilities or people who were disabled by accidents or illnesses UNHEALTHY DISABLED: TREATING CHRONIC ILLNESSES AS DISABILITIES | 163 later in life, but they regard themselves as Some diseases, such as lupus or dia- healthy, not sick, they do not expect to die betes, are known to be typically chronic. any sooner than any other healthy person Physicians do not expect to cure them, their age, and they do not need or seek and, once diagnosed, patients more or less much more medical attention than other expect to have to live with them (depend- healthy people (I will not try to give a defi- ing on how informed they are and how nition of health, which is too big a topic inclined they are to believe in miraculous to discuss here, but I am assuming that cures or rapid progress in scientific medi- healthy people’s functional limitations and cine). A few patients with these diseases do bodily suffering are fairly stable and do not recover their health instead of remaining motivate them to seek medical treatment chronically ill, but most do not. On the other or cures). hand, patients do not expect to die soon Notice that “healthy disabled” is a cate- from these diseases. Nevertheless, many gory with fluctuating and sometimes uncer- of the recognized chronic diseases, such as tain membership. Many people who seem lupus, sometimes occur in acute forms that to have stable disabilities now will encoun- kill the patient quickly, and many of them, ter illness and changing disability later in such as diabetes, are expected to kill the life (for example, post-polio syndrome has patient eventually, either by wearing down destabilized the health and abilities of some the patient’s health or by creating severe, people who had recovered from polio, with life-threatening episodes of illness. residual disability, decades ago), and some Other diseases, such as infectious people who seem to have stable disabilities mononucleosis or Lyme disease, are usu- also have chronic or recurrent health prob- ally acute but can last for years in some lems, either as consequences of their dis- patients, making them chronically ill by abilities or independently of them. Thus, any patient-centered definition. People many of the problems I describe here as who are chronically ill with these diseases problems of unhealthy disabled people are likely to have trouble getting recogni- have been or will be problems of people tion of their illnesses—if not by the medi- who are now healthy disabled. cal profession, then by friends, relatives, Defining what I mean by chronic ill- acquaintances, employers, insurers, and ness would help to clarify the distinction others who believe that they should have between healthy and unhealthy people recovered from their diseases long ago. with disabilities, but it is not easy to pin Still other diseases are acute or chronic, down chronic illnesses with a definition.1 depending on the treatment available to Usually, they are understood to be illnesses patients. HIV infection most often becomes that do not go away by themselves within the acute and deadly disease AIDS in poor six months, that cannot reliably be cured, countries, but in wealthy countries, where and that will not kill the patient any time expensive treatment can slow its progress, soon. I think that any practical concept of it can frequently be a chronic disease. chronic illness has to be patient-centered Some diseases, such as MS and rheuma- or illness-centered, rather than based on toid arthritis, can behave like recurring acute diagnosis or disease classification, because illnesses, with periods of extreme debility many diseases cannot reliably be catego- and periods of normal (or nearly normal) rized into chronic and non-chronic. Nev- health, or they can have virtually constant ertheless, a brief discussion of the variety symptoms (such as fatigue or pain) and/or of ways that diseases can cause chronic ill- be characterized by recurring acute epi- ness may be helpful. sodes that leave behind permanent losses 164 | SUSAN WENDELL

of function (such as paralysis caused by granted to the acutely ill (or we were given MS). Mental illnesses are sometimes acute, it at first and have now used it up, over- sometime recurring, and sometimes chron- used it), yet we seem to refuse to return to ically debilitating. For example, schizophre- pre-illness life. We are not old enough to nia and depression go in and out of remis- have finished making our contributions of sion for many people. Whether the mental productivity and/or caregiving; old people illnesses are diseases is still controversial with chronic illnesses may be seen to be (see Agich 1997, 229–37), but clearly any entitled to rest until they die. And we are adequate concept of illness includes them not expected to die any time soon, so we because of the involuntary suffering and are going to hang around being sick for loss of function they cause. I consider ill- a long while. Cheri Register calls us “the nesses that go into remission chronic when interminably ill” (Register 1987, ix). they require prolonged medical treatment Moreover, those of us with chronic ill- or surveillance, or when patients must fear nesses do not fit most people’s picture of recurrences because there is no reasonable disability. The paradigmatic person with expectation of cure. a disability is healthy disabled and per- The questions “Is my illness tempo- manently and predictably impaired. Both rary?” and “How long will it last?” are often attitudes toward people with disabilities unanswered or answered uncertainly by and programs designed to remove obsta- medicine. This creates difficulties of iden- cles to their full participation are based on tity both for the person who is ill (am I that paradigm. Many of us with chronic disabled or just sick for a while?) and for illnesses are not obviously disabled; to be other people. Christine Overall describes recognized as disabled, we have to remind an experience of being ill for more than a people frequently of our needs and limi- year with a painful, debilitating condition tations. That in itself can be a source of initially diagnosed as rheumatoid arthritis alienation from other people with disabili- and then re-diagnosed as viral arthritis. ties, because it requires repeatedly calling She says that during the time she was ill, attention to our impairments. she identified with people with disabilities, was constructed as a person with disabili- IMPAIRMENT ties, and inhabited the world of people with disabilities. However, she also experienced Many of the issues I raise in this article a strong pressure to “pass for normal” would be classified as issues of impair- (Overall 1998, 155). People minimized her ment in the literature of disability activism illness, ignored it, denied it, and urged her and disability studies. Disability activists to get over it. Overall attributes some of this and scholars usually distinguish impair- reaction to ageism, speculating that dis- ment from disability, treating impairment ability is “easier to recognize and tolerate as the medically defined condition of a . . . in older people than in younger ones” person’s body/mind, and disability as the (1998, 162). socially constructed disadvantage based My own analysis is that young and mid- upon impairment. This distinction follows dle-aged people with chronic illnesses the United Nations’ definition of impair- inhabit a category not easily understood ment as “any loss or abnormality of psy- or accepted. We are considered too young chological, physiological, or anatomical to be ill for the rest of our lives, yet we are structure or function” (U.N. 1983, I.c., 6–7). not expecting cure or recovery.2 We cannot The U.N.’s attempt to give an objective, be granted the time-out that is normally universal definition of impairment, which UNHEALTHY DISABLED: TREATING CHRONIC ILLNESSES AS DISABILITIES | 165

I have criticized elsewhere (Wendell 1996), prejudice, and our criticisms of the medical connects impairment to the medical insti- model of disability, have made us wary of tutions that measure structure and func- acknowledging our experiences of impair- tion and set the standards of “normality.” ment. Impairment is safer not mentioned I believe this connection has contributed at all This silence prevents us from dealing effectively with the difficult aspects of to neglect of the realities of impairment in impairment. Many of us remain frustrated disability activism and disability studies, and disheartened by pain, fatigue, depres- because it makes attention to impairment sion and chronic illness, including the way seem irrelevant to or in conflict with the they prevent us from realizing our potential social constructionist analyses of disability or railing fully against disability (our experi- they employ. ence of exclusion and discrimination); many Illness is equated with impairment, even of us fear for our futures with progressive by disability activists and scholars, in ways or additional impairments; we mourn past that disability is not; hence there is anxi- activities that are no longer possible for us; ety to assure nondisabled people that dis- we are afraid we may die early or that suicide ability is not illness. Another consequence may seem our only option; we desperately seek some effective medical intervention; is the pressure to be (or to pass as) healthy we feel ambivalent about the possibilities disabled both within disability activism of our children having impairments; and we and outside it. Because disability activists are motivated to work for the prevention of have worked hard to resist medicalization impairments. Yet our silence about impair- and promote the social model of disability, ment has made many of these things taboo activists sometimes feel pressured to down- and created a whole new series of constraints play the realities of fluctuating impairment on our self-expression. or ill health. Cheryl Marie Wade (1994, 35) (Crow 1996, 209–10) has criticized the new image of “the able- disabled” and the reluctance among dis- Crow emphasizes the need to focus on ability activists to admit to weakness and both disability and impairment, and she vulnerability. She found that her identity as acknowledges that “impairment in itself an activist made it difficult to acknowledge can be a negative, painful experience” her physical limitations until her body broke (Crow 1996, 219). She urges people with down, endangering both her health and her disabilities to adopt a new approach to self-esteem. Outside disability activism, impairment that includes not only the there is pressure to conform to an inspir- medically-based descriptions of our bod- ing version of the paradigm of disability. ies/minds but also our experiences of our Those people with disabilities who can best bodies/minds over time and in variable approximate the activities and appearance circumstances, the effects they have on our of nondisabled people (that is, those who activities, the feelings they produce, and can make others forget they are disabled) any concerns about them that impaired will be allowed to participate most fully in individuals might have. the activities of their society. It seems possible to pay more atten- British feminist disability activist Liz tion to impairment while supporting a Crow has written a powerful critique of social constructionist analysis of disabil- “our silence about impairment” within dis- ity, especially if we focus our attention on ability movements. She says: the phenomenology of impairment, rather than accepting a medical approach to it. Our insistence that disadvantage and exclu- Knowing more about how people experi- sion are the result of discrimination and ence, live with, and think about their own 166 | SUSAN WENDELL

impairments could contribute to an appre- organizations have become more aware of ciation of disability as a valuable difference the need to make their activities accessible from the medical norms of body and mind. to women who use wheelchairs, women Moreover, recognition of impairment is cru- who need written material in alternative for- cial to the inclusion of people with chronic mats, and women who need Sign Language illnesses in disability politics. Chronic ill- translation, but much feminist practice still ness frequently involves pain, fatigue, assumes a consistently energetic, high- dizziness, nausea, weakness, depression, functioning body and mind, and certainly and/or other impairments that are hard to not a body and mind that are impaired ignore. Everything one does, including pol- by illness. (I will discuss accommodating itics, must be done within the limitations chronic illnesses in political practice in the they present. The need to accommodate next section.) Moreover, in their writing them is just as great, if more problematic and organizing, most feminists still assume (see below), as the need to accommodate that feminists are giving, and not receiving, blindness or hemiplegia, but they cannot care, and that all significant contributions be accommodated if they are not acknowl- to feminist movements happen in meet- edged and discussed openly. ings, at public events, and in demonstra- Liz Crow points out that ignoring tions on the streets. The accepted image of impairment can reduce the relevance of a good feminist still includes handling paid the social model of disability to certain work and family responsibilities and having groups, such as women, among whom (in plenty of energy left over for political activity England) arthritis is the most common in the evenings or on weekends. In these cir- cause of impairment, manifested in pain cumstances, women with chronic illnesses (1996, 221). I would add that pain and/or are likely to find it difficult to participate in fatigue are major sources of impairment feminist movements or to identify them- in many chronic illnesses that are more selves as feminists. common in women than in men, including Not only unhealthy people with dis- rheumatoid arthritis, fibromyalgia, lupus, abilities but many healthy disabled peo- ME/CFIDS, migraine headache, MS, and ple would benefit from more recogni- depression. This is not to say that men do tion of impairment in both disability and not suffer from impairments of chronic ill- feminist politics. Some disabilities that ness, but that attempting to ignore impair- are not illnesses and do not cause illnesses ment in disability politics may alienate or do involve impairments similar to those marginalize more women than men. Jenny caused by chronic illnesses. It has been dif- Morris reports that restoring the experi- ficult, for example, for people with some ence of impairment to disability politics brain injuries to have their impairments was regarded as a women’s issue in the understood and accommodated, because series of meetings of disabled women that they are more like impairments of chronic led to the book, Encounters with Strangers: illnesses—transitory and unpredictable— Feminism and Disability, in which Crow’s than those of paradigmatic, stable disabili- critique of the social model was published ties. They may include both fatigue and (Morris 1996, 13). intermittent cognitive impairments that When feminist politics ignores their are exacerbated by fatigue, such as diffi- experience of impairment, there are differ- culty concentrating and recalling words. ent but equally disturbing sources of disa- Fatigue is one of the most common and bled women’s alienation from feminism misunderstood impairments of chronic ill- or their marginalization within it. Feminist ness. The fatigue of illness is different in UNHEALTHY DISABLED: TREATING CHRONIC ILLNESSES AS DISABILITIES | 167 three critical respects from the ordinary political activity in both disability and fem- fatigue experienced by healthy people: it inist movements are structured. On a bad is more debilitating, it lasts longer, and it day of physical or mental illness, we may is less predictable. Every activity, including be unable to attend a meeting or workshop, thinking, watching, listening, speaking, and to write a letter, to answer the phone, or to eating, requires energy. It is possible to be respond to e-mail. We may need notice in too fatigued to do any of these. Anyone who advance of work to be done, in order to work has had severe influenza may recall being only on good days or more slowly on days too fatigued to have a conversation, to fol- when we are very ill. We may need to work low a simple story, or to make a decision. in teams, so that someone else can take That experience of fatigue is closer to the over when we cannot work at all. We may fatigue of MS, rheumatoid arthritis, fibro- need to send a written speech to a meet- myalgia, depression, or ME/CFIDS than ing to be read by someone else because we the fatigue of a healthy person at the end are too sick to attend and read it in person. of a hard day. A good night’s sleep rarely We need others to understand that our not cures the profound fatigue of illness; it may showing up does not mean that we are not last for days or weeks with no apparent committed to the group, event, or cause. improvement, or it may fluctuate, allow- Commitment to a cause is usually ing some activity punctuated by periods equated to energy expended, even to push- of total exhaustion. And unlike the fatigue ing one’s body and mind excessively, if not of influenza, which will gradually improve cruelly. But pushing our bodies and minds as one’s body recovers from infection, the excessively means something different fatigue of chronic illness is unpredictable. to people with chronic illnesses: it means It may appear first thing in the morning on danger, risk of relapse, hospitalization, the tenth day of a restful vacation or in the long-lasting or permanent damage to our middle of an energetic day’s work. Reason- capacities to function (as for some peo- able precautions may help to prevent it, ple with MS). And sometimes it is simply but it resists control. impossible; people get too tired to sit up, to Fatigue may be a primary symptom of think, to speak, to listen, and there are no a chronic illness, or it may be caused by reserves of energy to call upon. Yet in polit- other symptoms, such as pain, anorexia, ical activity, all-day meetings and evening or depressed mood. Thus, fluctuating and events after a full day’s work are assumed severely limited energy is a common impair- to be appropriate. Stamina is required for ment of people with chronic illnesses. Of commitment to a cause. course, not everyone with a chronic illness I feel uneasy describing these conflicts experiences this impairment, but it is an between the demands of activism and the important example, not only because many realities of chronic illness, because I do not of us have impaired energy, but because it want to supply good reasons for regarding is one of the most challenging impairments those of us who are perpetually ill as social to accommodate. burdens rather than social contributors. This is probably the same uneasiness that healthy disabled people feel about focusing ACCOMMODATING CHRONIC attention on their impairments. I can only ILLNESSES hope, as Liz Crow does (Crow 1996, 222– Fluctuating abilities and limitations can 25), that probing these threatening topics make people with chronic illnesses seem will lead eventually to facing and solving like unreliable activists, given the ways that some problems. If there is to be more than 168 | SUSAN WENDELL

token participation by unhealthy disabled and make it difficult or impossible for peo- people over the long term, there will have ple with impaired energy to participate. to be changes in the structure, culture, and Pace and flexibility about time are also traditions of political activism. People will issues of employment access for people have to think differently about energy and with chronic illnesses, and here too con- commitment, pace and cooperation. flict may arise—in this case, between the Implementing the accommodations goals of healthy disabled people and the of pace and scheduling needed by people needs of unhealthy disabled people. We with chronic illnesses may inconvenience have learned that, even with strong leg- a lot of other people in a group (although, islation such as the Americans with Dis- given the general silence about limitations abilities Act, it is hard to achieve accom- of energy, perhaps many more people will modation of permanent, predictable dis- be relieved). Moreover, everyone knows abilities in workplaces. Many employers that the people who commit the most (and non-disabled workers) resist the most time and energy to a group will usually straightforward requirements of wheel- acquire the most power to influence the chair accessibility or Deaf translation. group’s activities. In order for people with Understandably, disability activists want impaired energy to participate as equals, to stress the message “Remove the barriers the relationships between time, energy, that have been erected arbitrarily against and power will have to be discussed openly our participation, and we will perform as and negotiated. well as anyone else.” Insisting on accom- None of this will be easy. Conflicts and modations of pace and time threaten this suspicions are inevitable. Management message, because working according to of energy is an issue, and at times a chal- the employer’s schedule and at the pace lenge, for every adult, whether nondisa- he/she requires are usually considered to bled, healthy disabled, or unhealthy disa- be aspects of job performance, even in jobs bled. And it is sometimes hard to tell the where they are not critical to the adequate difference between someone’s mismanag- completion of tasks. ing her/his own energy and other people’s Iris Marion Young has pointed out that, failure to accommodate her/his impaired from the perspective of most employers, energy. Even those of us who have lived “the norm of the ‘hale and hearty’ worker” a long time with chronic fatigue cannot makes a necessary contribution to work- always tell whether we are not trying hard place discipline. “The ‘normal’ worker is enough or experiencing a physical/mental supposed to be energetic, have high con- limitation, whether we need inspiration, centration abilities, be alert to adapt to self-discipline, or a nap. In political activ- changing conditions, and be able to with- ism, where external pressures such as pub- stand physical, mental or interactive stress lication deadlines or responding to gov- in good humor. Workers who fail to meas- ernmental announcements can virtually ure up to one or more of these standards dictate the pace of the group, someone’s are ‘normally’ considered lazy, slackers, claim to need rest may seem like shirking uncooperative or otherwise inadequate. responsibility, especially to people who All workers must worry about failing in the resent contributing more time or energy eyes of their employers . . .” (Young 2000, than others. Thus, pace and flexibility about 172). Because many workers fail, either time are bound to be controversial in any temporarily or permanently, to live up to group that tries to negotiate them. Yet the this “norm,” requiring accommodation only alternative is to take them for granted of a wide range of disabilities would call UNHEALTHY DISABLED: TREATING CHRONIC ILLNESSES AS DISABILITIES | 169 the “norm” into question and challenge Yet access to work for unhealthy disabled employers’ power to set the standards of people will require taking what Young calls workplace performance. Employers would “the next step toward equal opportunity for prefer to define disability narrowly and people with disabilities,” that is, challeng- regard the vast majority of workers who do ing the prerogative of employers to define not meet their standards as unsuitable for the content, qualifications, and perform- their jobs. ance criteria of work (Young 2000, 173). Moreover, if people with chronic ill- There are some reasons for optimism: we nesses demand accommodations of pace have a lot of potential allies to whom pace and time, they may encounter resistance and flexibility about time make the differ- from other workers because of the “politics ence between working and not working, of resentment,” described here by Young: including many nondisabled women caring for children and disabled older family Most workers feel put-upon and frus- members; and, as Young points out, there trated by their working conditions and the are many other workers, who do not iden- demands of their employers on their time tify themselves as disabled, who would and energy. They have to stand up all day, benefit from “more humane and individu- or have few bathroom breaks, or work over- alized workplace accommodation” (2000, time or at night, and their employer refuses 173). to accommodate to their aching backs, their family pressures, their sleeplessness or difficulty in concentrating. Many workers, that WHO BELONGS? is, find the demands placed on them next to overwhelming at times, and they feel barely Controversy about the appropriateness of able to cope. Rarely do they get a sympathetic accommodations of pace and time often ear to voice their frustrations, however, and leads to doubts about the legitimacy of the only agents they are allowed to blame the disability for which accommodation for their difficulties are themselves. It is lit- is requested. Suspicion surrounds people tle wonder that they may resent people that with chronic illnesses—suspicion about the law requires employers to accommodate how ill/disabled we really are, how or why in order to enable them better to fit the work we became ill, whether we are doing eve- situation. rything possible to get well, and how mis- . . . Disability is a matter of degree, and it managing our lives, minds, or souls may is arbitrary where the line is drawn between not disabled enough to warrant accommo- be contributing to our continuing illness dation, and disabled enough. A politics of (Wendell 1996). Suspicion comes from resentment motivates some people to draw medical professionals, friends, relatives, that line as far down the extreme end of the coworkers, and, understandably, from continuum as possible so that almost every- other people with disabilities. one will be legally expected to conform to the In her study of a group of people with dis- normal workplace demands. abilities in Britain, Jill C. Humphrey found (Young 2000, 171) that there was a conspicuous silence about impairment and an associated suspicion On the basis of Young’s analysis, I think we as to whether some people belonged in should expect strong resistance from both the group—in other words, whether they employers and workers to accommodat- were really disabled. In her interviews with ing chronic illnesses in the workplace. This them, group members raised this suspicion resistance may strain the resources and the about people whose impairments were not solidarity of disability rights movements. readily apparent. Humphrey comments: 170 | SUSAN WENDELL

“the propensity to treat only tangible Even when our disabilities are con- impairments as evidence of a bona fide dis- sidered genuine, there is often suspicion ability identity clearly marginalizes those about our role in causing them. Blame and with non-apparent impairments . . . whilst responsibility for our disabilities are more the reluctance or refusal to differentiate persistent issues for unhealthy than for between impairments by identifying them healthy people with disabilities. Although bolsters up the claim by people with appar- people disabled by accidents that they ent impairments that they represent all themselves caused (for example, by driv- disabled people” (Humphrey 2000, 67). Of ing drunk) or risked unreasonably (by not course, suspicions about whether people wearing a helmet on a motorcycle, for with non-apparent impairments are really example) may be blamed at first for their disabled are common, being the flip side of disabilities, that blame does not usually the ability to pass as nondisabled. follow them for long, perhaps because their The ability to pass is a frequent, though disabilities are relatively stable, and thus not a universal, difference between holding them responsible seems more and unhealthy and healthy people with dis- more pointless as time goes on. In contrast, abilities. Its advantages include avoiding people with chronic illnesses are likely to be the prejudices and daily acts of discrimi- blamed or held responsible not only dur- nation and patronizing behavior that peo- ing the process of seeking a diagnosis, but ple with obvious disabilities are subjected also during every relapse or deterioration to at school, at work, and in other public of their condition, which they are expected places. Passing is sometimes voluntary, (by doctors, loved ones, employers, and the but it can also be involuntary, in that general public) to control (Register 1987; some of us will be perceived as nondisa- Charmaz 1991). Fluctuations in our ill- bled unless we draw attention to our dis- nesses and abilities—which can be affected ability, and sometimes even after we draw by our emotions, changes in our lives, and attention to it. The ability to pass makes a stress, but which may occur independently person not the paradigmatic person with of them—contribute to the perception that a disability. Whether it makes her/him we are responsible for our disabilities. In more or less acceptable to nondisabled addition, an abundance of popular theo- people is unclear; someone who can pass ries claim or imply that anyone can control but chooses not to may be seen as solic- her/his health with the right diet, exercise, iting sympathy and special treatment. In attitudes, relationships, or religious beliefs; either case, our ability to pass means that it follows from most of them that those who having our disabilities recognized as gen- are unhealthy are doing something wrong, uine is a major issue for many unhealthy and that, if they have been told how to take disabled people. So much depends on better care of themselves, they are acting that recognition—accommodation of irresponsibly (see Wendell 1999). our impairments, inclusion in disability politics, and, of course, our moral repu- PRIDE, PREVENTION, AND “CURE” tations. Because of what Young calls “the politics of resentment” (Young 2000, 171), Health is regarded as a virtue or a blessing, people wonder whether someone whose depending on how well a person or group disability is not obvious is faking or exag- of people understands that it cannot be gerating it; the trustworthiness of people controlled, but it is almost always regarded who claim to be disabled but do not look as a good. Among people who have the disabled is always in question. political savvy not to give thanks publicly UNHEALTHY DISABLED: TREATING CHRONIC ILLNESSES AS DISABILITIES | 171 for being nondisabled, giving thanks for that it has changed them for the better. Of being healthy is acceptable, even com- everything I said in my book about disabil- mendable. Healthy people with disabilities ity, The Rejected Body (1996), readers have express gratitude for being healthy, people most often questioned or been shocked by with progressive chronic illnesses express my statements that, although I would joy- gratitude for not having gotten sicker than fully accept a cure if it were offered me, I they have, and people with recurring or do not need a cure and I do not regret hav- fluctuating chronic illnesses express grati- ing become ill (Wendell 1996, 83–84, 175). I tude for coming out of a relapse (as I know suppose many people suspect I am making I do). the best of a miserable fate, but then they Of course, many people, especially non- probably think something very similar disabled people who have little knowledge about other expressions of disability pride. of the lives of people with disabilities, fear I do not think that those of us who other kinds of disability as much as, or appreciate having become ill are making more than, illness, and regard physical and a mistake or deceiving ourselves. Illness mental “normality” as blessings, if not vir- is not by definition an evil, but people fear tues. Because fear of disability contributes and try to avoid illness because of the suf- to the social stigma of being disabled, it fering it causes. Some of that suffering is is one of the goals of disability politics to social and could be eliminated by social replace fear with the understanding that justice for people with disabilities, but disability can be a valuable difference and some of it is not. Solidarity between peo- that people with disabilities can be proud ple with chronic illnesses and people with of their differences from nondisabled peo- other disabilities depends on acknowl- ple. The question is, does this goal make edging the existence of the suffering that sense in relation to disabling chronic ill- justice cannot eliminate (and therefore nesses? At first glance, it seems to, because on our willingness to talk about impair- chronic illness is a kind of disability, but ment). It also depends on acknowledging compare “Thank God I’m not disabled” that illness is not only suffering. Like liv- with “Thank God I’m healthy,” and you see ing with cerebral palsy or blindness, living the difficulty of applying disability pride to with pain, fatigue, nausea, unpredictable a chronic illness. abilities, and/or the imminent threat of Is illness by definition an evil, or have we death creates different ways of being that made less progress in recognizing chronic give valuable perspectives on life and the illnesses as potentially valuable differences world. Thus, although most of us want to than we have in relation to other disabili- avoid suffering if possible, suffering is part ties? (There is a third possibility: Perhaps of some valuable ways of being. If we could acute illness is by definition an evil, chronic live the ways of being without the suffer- illness is not, and people confuse them. Yet ing, some of us would choose to live them. if that were the case, the news that you are Some of us would choose to live them even not going to recover from an illness and if they were inseparable from the suffering. will have to live with it would be good news; And some of us are glad to have been forced but, unless you were expecting death, it is to live them, would choose to be rid of the not good news. Illness, chronic or acute, is suffering even if it meant losing the ways of widely regarded as an evil.) Certainly it is being, but would hope to hold on to what difficult to say that one is glad to have been we have learned from them. There are, I ill and be believed, despite the fact that think, many versions of disability pride. many people who are or have been ill testify Disability pride has come into conflict 172 | SUSAN WENDELL

with medical efforts to prevent disability, preventing and curing illnesses: not only especially by selective abortion of poten- the relief of suffering, but also, as with other tially disabled fetuses, and with medical disabilities, ways of being human. efforts to “cure” certain disabilities, especially deafness in children. Moreover, disa- NOTES bility movements have criticized spending enormous amounts of public and donated Many thanks to Anita Silvers and three anonymous money searching for “cures” while neglect- referees for their helpful comments on an earlier version of this paper. ing to provide the most basic services and opportunities that would improve the 1. In this article, I am using “sickness” and “illness” lives of people with disabilities. Preven- synonymously to mean suffering, limitation, and/or loss of function experienced by a person tion and cure both focus public attention and attributed by her/him (or others) to a loss of on the medical model, which can lead us to health and not to a physical or mental condition ignore the social conditions that are caus- present from birth or acquired by an injury to a ing or increasing disability among people specific part of the body. I am using “disease” to who have impairments. Moreover, given refer to some medically recognized diagnostic categories of physical or mental “abnormality.” the history of eugenics, there is reason to Not all sicknesses and illnesses are diseases be skeptical about whether prevention and recognized by medicine, and not all medically cure are intended primarily to prevent suf- recognized diseases cause a person to feel sick fering or to eliminate “abnormalities” and or ill. My definitions are based on ordinary use “abnormal” people. of the words; unfortunately, ordinary use does not make precise distinctions, so there are However, it is striking that everyone, afflictions that do not fit the definitions neatly including disability scholars and activists, (such as chronic inflammation of an injured tends to assume that prevention is desirable limb). There is a considerable philosophical when the cause of disability is war, famine, literature debating the definitions of “disease,” poor medical care, accident, or illness, and “sickness,” “illness,” and related concepts. For a recent overview and samples of those debates, that cure is desirable when the cause is ill- see Humber and Almeder (1997). ness. Perhaps, in these instances, it seems 2. I have lived with ME/CFIDS since 1985. During heartless to insist on preserving difference the first two years of illness, I was severely im- instead of preventing or ending suffering. paired by fatigue, muscle pain, muscle weakness, Whatever our reasons, we sometimes insist dizziness, nausea, headaches, depression, and problems with short-term memory (especially on people’s rights to have impairments verbal recall). All these impairments are still with and sometimes assume that they would me, but now they are intermittent and less severe not want them, depending on the causes than they were. I am able to work three-quarter- and circumstances of disability. I think that time as a professor by living a quiet, careful life. when we explore these different responses An account of my personal experience of being disabled by chronic illness can be found in The further, we will discover different beliefs Rejected Body: Feminist Philosophical Reflections about how much suffering is an acceptable on Disability (1996). price to pay for a difference we value, and even different beliefs about the value of suffering itself. The perspectives of people with REFERENCES chronic illnesses will be essential to such an Agich, George J. 1997. Toward a pragmatic theory of exploration, because it may be as difficult disease. In What is disease? ed. James M. Humber for healthy disabled people to see the value and Robert F. Almeder. Totowa, N.J.: Humana Press. of illness as for nondisabled people to see Amundson, Ron. 1992. Disability, handicap, and the the value of disability. Only some people environment. Journal of Social Philosophy 23 (1): know what is at stake when we contemplate 105–18. UNHEALTHY DISABLED: TREATING CHRONIC ILLNESSES AS DISABILITIES | 173

Carroll, Douglas, and Catherine A. Niven. 1993. Gen- Overall, Christine. 1998. A feminist I: Reflections from der, health and stress. In The health psychology academia. Peterborough, Ont.: Broadview Press. of women, ed. Catherine A. Niven and Douglas Register, Cheri. 1987. Living with chronic illness: Days Carroll. Chur, Switzerland: Harwood Academic of patience and passion. New York: Bantam. Publishers. Report on the health of Canadians. 1996. Ottawa: Charmaz, Kathy. 1991. Good days, bad days: The self in Minister of Supply and Services Canada. chronic illness. New Brunswick, N.J.: Rutgers Uni- Snow, Judith A. 1992. Living at home. In Imprinting versity Press. our image: An international anthology by women Clare, Eli. 1999. Exile and pride: Disability, queemess with disabilities, ed. Diane Driedger and Susan and liberation. Cambridge, Mass.: South End Gray. Charlottetown, P.E.I.: Gynergy Books. Press. Trypuc, Joann M. 1994. Gender based mortality and Crow, Liz. 1996. Including all of our lives: Renewing morbidity patterns and health risks. In Women, m the social model of disability. In Encounters with edicine and health, ed. B. Singh Bolaria and Rose- strangers: Feminism and disability, ed. Jenny Mor- mary Bolaria. Halifax, N.S.: Fernwood. ris. London: The Women’s Press Ltd. U.N. Decade of Disabled Persons 1983–1992. 1983. Humber, James M., and Robert F. Almeder, eds. 1997. World programme of action concerning disabled What is disease? Totowa, N.J.: Humana Press. persons. New York: United Nations. Humphrey, Jill C. 2000. Researching disability poli- Wade, Cheryl Marie. 1994. Identity. The Disability Rag tics, or, some problems with the social model in and ReSource (September/ October): 32–36. practice. Disability and Society 15 (1): 63–85. Wendell, Susan. 1996. The rejected body: Feminist Morris, Jenny. 1991. Pride against prejudice: Trans- philosophical reflections on disability. New York: forming attitudes to disability. Philadelphia: New Routledge. Society Publishers. ——. 1999. Old women out of control: Some thoughts ——. 1994. Gender and disability. In On equal terms: on aging, ethics and psychosomatic medicine. In Working with disabled people, ed. Sally French. Mother time: Women, aging and ethics, ed. Marga- Oxford: Butterworth-Heinemann Ltd. ret Walker. Lanham, Md.: Rowman and Littlefield. Morris, Jenny, ed. 1996. Encounters with strangers: Young, Iris Marion. 2000. Disability and the definition Feminism and disability. London: The Women’s of work. In Americans with disabilities: Exploring Press Ltd. implications of the law for individuals and insti- Oliver, Michael. 1990. The politics of disablement. tutions, ed. Leslie Francis and Anita Silvers. New London: Macmillan. York: Routledge. PART IV

Theorizing Disability CHAPTER 13

The Cost of Getting Better: Ability and Debility Jasbir K. Puar

There are many things lost in the naming antly, the economics of debility. If the knit- of a death as a “gay youth suicide.” In what ting together of finance capitalism and the follows, I offer a preliminary analysis of medical-industrial complex means that the prolific media attention to gay youth debility pays, and pays well, then the ques- suicides that began in the United States in tion becomes, how can an affective politics the fall of 2010. I am interested in how this move beyond the conventional narratives attention recalls affective attachments to of resistance to neoliberalism? neoliberalism that index a privileged geo- politics of finance capitalism. I have been THE COST OF GETTING BETTER struck by how the discourses surrounding gay youth suicide partake in a spuri- To begin, I pose two queries: one, what is ous binarization of what I foreground as contained in the category of sexuality? Two, an interdependent relationship between what kinds of normative temporal assump- bodily capacity and bodily debility. These tions are produced through the “event” of discourses reproduce neoliberalism’s suicide? As a faculty member of Rutgers heightened demands for bodily capacity, University in New Jersey, where a student, even as this same neoliberalism marks out Tyler Clementi, committed suicide after populations for what Lauren Berlant has videos of him having sex with a man were described as “slow death”—the debilitat- circulated by his roommate and another ing ongoingness of structural inequality student, I want to provide better context and suffering.1 In the United States, where for the local circumstances of his death. personal debt incurred through medical All three students (Clementi, Dharun Ravi, expenses is the number one reason for fil- and Molly Wei) were living on Busch cam- ing for bankruptcy, the centrality of what pus in Piscataway, New Jersey, already is termed the medical-industrial complex codified as the campus for science/premed to the profitability of slow death cannot “geeks” (some might say sissies). Busch be overstated.2 My intervention here is is also racially demarcated as the “Asian” an attempt to go beyond a critique of the campus, an identity rarely disaggregated queer neoliberalism embedded in the ten- from geek at US colleges. Clementi’s sui- dentious mythologizing that “it gets better” cide has predictably occasioned a vicious by confronting not only the debilitating anti-Asian backlash replete with overdeter- aspects of neoliberalism but, more trench- mined notions of “Asian homophobia” and 178 | JASBIR K. PUAR

predictable calls to “go back to where you of Internet surveillance as a mandatory came from,” as seen in numerous online regulatory part not only of their subject articles. Commenting on the biases of formations but of their bodily habits and the criminal justice system against peo- affective tendencies. For these youth, so- ple of nonnormative race, ethnicity, and called cyberstalking is an integral part of citizenship, a press release from a Rut- what it means to become a neoliberal (sex- gers organization called Queering the Air ual) subject. Think of the ubiquity of sex- notes that Garden State Equality (a New ting, applications like Grindr, Manhunt, Jersey LGBT advocacy group) and Cam- DIY porn, and cellphone mass circulation pus Pride (a national group for LGBT stu- of images—technologies that create simul- dents) have demanded the most severe taneous sensations of exposure (the whole consequences for Ravi and Wei, prosecu- world is watching) and alienation (no one tion for hate crimes, maximum jail time, understands). These cyborgian practices expulsion without disciplinary hear- constitute new relations between pub- ing, and that “18,000 people endorse an lic and private that we have yet to really online group seeking even more serious acknowledge, much less comprehend. charges—manslaughter.”3 “Invasion of privacy” remains uncharted It seems imperative that the implications territory for jurisprudence in relation to of two “model minority” students from a the Internet. But more significantly, to wealthy New Jersey suburb who targeted reiterate Rai, the use of these technologies an effete, young, queer white man be con- impels new affective tendencies of bodies, sidered beyond convenient narratives of new forms of attention, distraction, prac- the so-called inherent homophobia within tice, and repetition. The presumed differ- racialized immigrant communities. Is it ences between “gay” and “straight” could possible to see all three students involved be thought more generously through the as more alike—all geeks, in fact—than dif- quotidian and banal activities of sexual ferent? Instead of rehashing that old “gay- self-elaboration through Internet tech- bashers are closet cases” canard, perhaps nologies—emergent habituations, corpo- there is a reason to destabilize the align- real comportment, and an array of diverse ments of “alikeness” and “difference” away switchpoints of bodily capacity. from a singular, predictable axis through If signification and representation (what “sexuality.” A letter recently circulated by things mean) are no longer the only pri- Queering the Air claims that Clementi’s mary realm of the political, then bodily death is the second suicide by an LGBTQ processes (how things feel) must be irre- student since March and that four of the ducibly central to any notion of the politi- last seven suicides at Rutgers were related cal. Clementi’s participation in the testi- to sexuality.4 What, then, is meant here by monial spaces of the chat room to detail “related to sexuality”? I am prompted by his roommate’s invasion of his “privacy” Amit Rai’s reformulation of sexuality as and Clementi’s use of Facebook for the “ecologies of sensation”—as affect instead explanatory “suicide note” reflect precisely of identity—that transcends the designa- the shared continuities with his perpetra- tions of straight and gay and can further tors through ecologies of sensation. Accu- help disaggregate these binary positions sations of “homophobia,” “gay bullying,” from their racialized histories.5 and even “cyberbullying” fail to do justice Missing from the debate about Clemen- to the complex uptake of digital technolo- ti’s suicide is a discussion about the pro- gies in this story. clivities of young people to see the “choice” The apparently sudden spate of queer THE COST OF GETTING BETTER: ABILITY AND DEBILITY | 179 suicides is also obviously at odds with the phe, proposing that “slow death occupies claims of purported progress by the gay the temporalities of the endemic” (756). and lesbian rights movement. As noted by Slow death occurs not within the timescale Tavia Nyong’o, Dan Savage’s sanctimoni- of the suicide or the epidemic but within ous statement “it gets better” is a mandate “a zone of temporality . . . of ongoingness, to fold oneself into urban, neoliberal gay getting by, and living on, where the struc- enclaves: a call to upward mobility that dis- tural inequalities are dispersed, the pacing cordantly echoes the now-discredited “pull of their experience intermittent, often in yourself up by the bootstraps” immigrant phenomena not prone to capture by a con- motto.6 (The symbolism of Clementi’s tran- sciousness organized by archives of mem- sit from central New Jersey to the George orable impact” (759). In this nonlinear Washington Bridge that connects northern temporality, for it starts and stops, redou- New Jersey to upper Manhattan is painfully bles and leaps ahead, Berlant is not “defin- apparent.) Part of the outrage generated by ing a group of individuals merely afflicted these deaths is based precisely in a belief with the same ailment, [rather] slow death that things are indeed supposed to be bet- describes populations marked out for wear- ter, especially for a particular class of white ing out” (760–61n20). That is, slow death is gay men. As I argue in my op-ed in the not about an orientation toward the death Guardian, this amounts to a reinstatement drive, nor is it morbid; rather, it is about the of white racial privilege that was lost with maintenance of living, the “ordinary work being gay.7 Savage has also mastered, if we of living on” (761). follow Sarah Lochlain Jain on the “politics In the context of slow death, I pon- of sympathy,” the technique of converting der three things. First, what does it mean Clementi’s injury into cultural capital, not to proclaim “it gets better,” or “you get only through affectations of blame, guilt, stronger”? Second, why is suicide consti- and suffering but also through those of tri- tuted as the ultimate loss of life? Third, how umph, transgression, and success.8 can we connect these suicides to the theorization of debility and capacity? David Mitchell’s moving invocation of disability AFFECTIVE POLITICS: STATES OF “not as exception, but the basis upon which CAPACITY AND DEBILITY a decent and just social order is founded,” The subject of redress and grievance thus hinges on a society that acknowledges, functions here as a recapacitation of a accepts, and even anticipates disability.9 debilitated body. To make my second and This anticipatory disability is the dominant related point, then, I want to shift the regis- temporal frame of both disability rights ters of this conversation about “queer sui- activism (you are able-bodied only until cide” from pathologization versus norma- you are disabled) as well as disability stud- tivization of sexual identity to questions of ies. As the queer disability theorist Rob- bodily capacity, debility, disability, precar- ert McRuer writes, “It’s clear that we are ity, and populations. This is not to dismiss haunted by the disability to come.”10 Disa- these queer suicides but to ask what kinds bility is posited as the most common iden- of “slow deaths” have been ongoing that a tity category because we will all belong to suicide might represent an escape from. It it someday, as McRuer’s comment implies. is also to “slow” the act of suicide down—to Yet, as David Mitchell and Sharon Snyder offer a concomitant yet different temporal- argue, disability is “reified as the true site ity of relating to living and dying. Berlant of insufficiency.”11 But Berlant’s formula- moves us away from trauma or catastro- tion of slow death implies that we might 180 | JASBIR K. PUAR

not (only) be haunted by the disability to is no such thing as nonproductive excess come but also disavow the debility already but only emergent forms of new informa- here. tion.12 This revaluing of excess/debility is Berlant argues that “health itself can potent because, simply put, debility—slow then be seen as a side effect of successful death—is profitable for capitalism. In neo- normativity” (765). Therefore, to honor the liberal, biomedical, and biotechnological complexity of these suicides, they must be terms, the body is always debilitated in placed within the broader context of neo- relation to its ever-expanding potentiality. liberal demands for bodily capacity as well What I am proposing, then, is also an as the profitability of debility, both func- intervention into the binaried production tioning as central routes through which of disabled versus nondisabled bodies that finance capital seeks to sustain itself. In my drives both disability studies and disabil- current book project, “Affective Politics: ity rights activism. Even as the demands of States of Capacity and Debility,” I exam- ableism weigh heavy and have been chal- ine these heightened demands for bod- lenged by disability scholars and activists, ily capacity and exceptionalized debility. attachments to the difference of disabled Capacity and debility are seeming oppo- bodies may reify an exceptionalism that sites generated by increasingly demand- only certain privileged disabled bodies can ing neoliberal formulations of health, occupy. While the disability rights move- agency, and choice—what I call a “liberal ment largely understands disability as a eugenics of lifestyle programming”—that form of nonnormativity that deserves to produce, along with biotechnologies and be depathologized, disability justice activ- bioinformatics, population aggregates. ists seek to move beyond access issues Those “folded” into life are seen as more foregrounded by the Americans with Dis- capacious or on the side of capacity, while abilities Act as well as global human rights those targeted for premature or slow death frames that standardize definitions of dis- are figured as debility. Such an analysis re- ability and the terms of their legal redress poses the questions: which bodies are made across national locations. They instead to pay for “progress”? Which debilitated avow that in working-poor and working- bodies can be reinvigorated for neoliber- class communities of color, disabilities and alism, and which cannot? In this regard, debilities are actually “the norm.” Thus a Savage’s project refigures queers, along political agenda that disavows pathology is with other bodies heretofore construed as less relevant than a critique of the reembed- excessive/erroneous, as being on the side ded forms of liberal eugenics propagated by of capacity, ensuring that queerness oper- what they call the medical-industrial com- ates as a machine of regenerative produc- plex and its attendant forms of administra- tivity. Even though post-structuralist queer tive surveillance. Such work suggests that theory critically deploys registers of nega- an increasingly demanding ableism (and I tivity (and increasingly negative affect) in would add, an increasingly demanding dis- reading practices primarily deconstructive able-ism—normative forms of disability as in their orientation, such a figuration of exceptionalism) is producing nonnorma- queer theory has emerged from a homeo- tivity not only through the sexual and racial static framework: queer theory is already pathologization of certain “unproductive also a machine of capacity in and after the bodies” but more expansively through the cybernetic turn. Bioinformatics frames— ability or inability of all bodies to register in which bodies figure not as identities through affective capacity. or subjects but as data—entail that there What disability justice activists imply is THE COST OF GETTING BETTER: ABILITY AND DEBILITY | 181 that slow death is constitutive to debility, itself), humanism (the capacities of non- and disability must be rethought in terms human animals as well as inorganic mat- of precarious populations. ter, matters), and agency (the centrality of The distinctions of normative and non- cognition and perception as challenged normative, disabled and nondisabled do by theories of sensation). The modula- not hold up as easily. Instead there are vari- tion and surveillance of affect operates as egated aggregates of capacity and debility. a form of sociality that regulates good and If debility is understood by disability justice bad subjects, possible and impossible bod- activists to be endemic to disenfranchised ily capacities. Here affect entails not only a communities, it is doubly so because the dissolution of the subject but, more signifi- forms of financialization that accompany cantly, a dissolution of the stable contours neoliberal economics and the privatization of the organic body, as forces of energy are of services also produce debt as debility. This transmitted, shared, circulated. The body, relationship between debt and debility can as Brian Massumi argues, “passes from be described as a kind of “financial expropri- one state of capacitation to a diminished or ation”: “the profit made by financial institu- augmented state of capacitation,” always tions out of the personal income of workers bound up in the lived past of the body but is a form of financial expropriation, seen always in passage to a changed future.14 as additional profit generated in the realm This understanding of capacity and debil- of circulation.”13 Given the relationship of ity entails theorizing not only specific disci- bankruptcy to medical care expenses in the plinary sites but also broader techniques of United States, debt becomes another reg- social control, marking a shift in terms from ister to measure the capacity for recovery, regulating normativity (the internalization not only physical but also financial. Debil- of self/other subject formation) to what ity is profitable to capitalism, but so is the Michel Foucault calls regularizing bodies or demand to “recover” from or overcome it. what has been designated “the age of biological control.”15 In the oscillation between disciplinary societies and control societies, FROM EPISTEMOLOGICAL following Foucault’s “security regimes” CORRECTIVE TO ONTOLOGICAL and Gilles Deleuze’s “control society,” the IRREDUCIBILITY tensions have been mapped out thusly: as a I am proposing, then, a methodology that shift from normal/abnormal to variegation, inhabits the intersections of disability modulation, and tweaking; from discrete studies, the affective turn, and theories of sites of punishment (the prison, the mental posthumanism—all fields of inquiry that hospital, the school) to preemptive regimes put duress on the privileging of (able-bod- of securitization; from inclusion/exclusion ied) subject formation as a primary site of to the question of differential inclusion; bodily interpellation. The affective turn, as from self/other, subject/object construc- I interpret it, signals intellectual contestation to micro-states of subindividual differ- tion over sites of struggle, whose targets are entiation; from difference between to dif- now the following: social constructionism ference within; from the policing of profile (reinvigorated interrogation of biologi- to patrolling of affect; from will to capacity; cal matter that challenges both biological from agency to affect; from subject to body.16 determinism and also performativity), And finally, and I believe most importantly, epistemology (ontology and ontogenesis), there is a shift underway, from Althusse- psychoanalysis (trauma rethought as the rian interpellation to an array of diverse intensification of the body’s relation to switchpoints of the activation of the body. 182 | JASBIR K. PUAR

What does it mean to rethink disabil- as-data, and statistical probabilities— ity in terms of control societies? The par- through populations, risk, and prognosis; ticular binary categorization of dis/abled (3) further stratified across registers of the subjectivity is one that has many parallels medical-industrial complex: medical debt, to other kinds of binary categorizations health insurance, state benefits, among propagated—in fact, demanded—by neo- other feedback loops into the profitability liberal constructions of failed and capaci- of debility. tated bodies. Therefore we cannot see this How the disaggregation of depressed binary production as specific only to the subjects into various states, intensities, and distinction of disabled versus nondisabled tendencies will change the dimensional- subjects; all bodies are being evaluated in ity of disability remains an open prospect, relation to their success or failure in terms but at the very least it forces recognition of health, wealth, progressive productiv- of the insufficiency of disability as a cat- ity, upward mobility, enhanced capacity. egory. The disability at stake is an affective And there is no such thing as an “ade- tendency of sorts as well as a mental state, quately abled” body anymore. However, and as such challenges the basis on which it is precisely because there are gradations disability rights frames have routed their of capacity and debility in control socie- representational (visibility) politics. A field ties—rather than the self/other produc- that has been dominated by the visibility of tion of being/not being—that the distinc- physical disabilities is acknowledging the tion between disabled and nondisabled scope and range of cognitive and mental becomes fuzzier. disabilities. This recognition, in turn, has As an example, Nikolas Rose main- challenged the status of rational, agen- tains that depression will become the tial, survivor-oriented politics based on number one disability in the USA and the the privileging of the linguistic capacity UK within the next ten years. This expan- to make rights claims. Why? Because the sion of depressed peoples will not occur inability to “communicate” functions as simply through a widespread increase of the single determinant of mental or cog- depression but through the gradation of nitive impairment (thereby regulating the populations. In other words, it will occur human/animal distinction), thus destabi- not through the hailing and interpellation lizing the centrality of the human capacity of depressed subjects—and a distinction for thought and cognition. between who is depressed and who is not— In an effort to open up capacity as a but through the evaluation and accommo- source of generative affective politics dation of degrees: to what degree is one rather than only a closure around neolib- depressed?17 One is already instructed by eral demands, I briefly return to Gayatri television advertisements for psychotropic Spivak’s “Can the Subaltern Speak?,” per- drugs such as “Abilify,” claiming that “two haps unfashionably so.18 In the context of out of three people on anti-depressants disability studies, this question becomes still have symptoms” and offering a top-off not only a mandate for epistemological medication to add to a daily med regime. correctives but a query about ontological Through this form of medical administra- and bodily capacity, as granting “voice” tion, bodies are (1) drawn into a modula- to the subaltern comes into tension with tion of subindividual capacities (this would the need, in the case of the human/animal be the diverse switchpoints); (2) surveilled distinction, to destabilize the privileging of not on identity positions alone but through communication/representation/language affective tendencies, informational body- altogether. The ability to understand lan- THE COST OF GETTING BETTER: ABILITY AND DEBILITY | 183 guage is also where human/nonhuman an affective politics, attentive to ecologies animal distinctions, as well as human/ of sensation and switchpoints of bodily technology distinctions, have long been capacities, to habituations and unhabitu- drawn, and here disability studies, post- ations, to tendencies, multiple temporali- humanism, and animal studies may per- ties, and becomings? haps articulate a common interest in a nonanthropomorphic, interspecies vision NOTES of affective politics. Posthumanism questions the boundaries between human and Thanks to Elena Glasberg, Dana Luciano, and Jordana nonhuman, matter and discourse, technol- Rosenberg for close readings, and to Tavia Nyong’o, Eng-Beng Lim, Ashley Dawson, and Richard Kim for ogy and body, and interrogates the prac- feedback on an earlier version of this article, “Ecologies tices through which these boundaries are of Sex, Sensation, and Slow Death” published in Social constituted, stabilized, and destabilized. Text on November 27, 2010. (The burgeoning field of animal studies is 1. Lauren Berlant, “Slow Death (Sovereignty, thus also a part of the endeavor to situate Obesity, Lateral Agency),” Critical Inquiry 33 human capacities within a range of capaci- (2007): 754–80. Hereafter cited in the text. ties of species as opposed to reifying their 2. See David Himmelstein et al., “Medical singularity.) If, according to posthuman- Bankruptcy in the United States, 2007: Results of ist thinkers such as Manual De Landa and a National Study,” American Journal of Medicine 122 (2009): 741–46. Karen Barad, language has been granted 3. “Justice Not Vengeance in Clementi Suicide,” too much power, a nonanthropomorphic Queering the Air, October 19, 2010 (URL no conception of the human is necessary to longer working). resituate language as one of many captures 4. Queering the Air, e-mail message to author, of the intensities of bodily capacities, an October 1, 2010. 5. Amit Rai, Untimely Bollywood: Globalization event of bodily assemblages rather than a and India’s New Media Assemblage (Durham, 19 performative act of signification. NC: Duke University Press, 2009). Our current politics are continually 6. Tavia Nyong’o, “School Daze,” September 30, 2010, reproducing the exceptionalism of human bullybloggers.wordpress.com/2010/09/30/ bodies and the aggrieved agential sub- school-daze/. 7. “In the Wake of It Gets Better,” Guardian, ject, politics typically enacted through November 16, 2010, www.guardian.co.uk/com- 20 “wounded attachments.” Without mini- mentisfree/cifamerica/2010/nov/16/wake-it- mizing the tragedy of Clementi’s and other gets-better-campaign?showallcomments=true# recent deaths, dialogue about ecologies of comment- fold. sensation and slow death might open us 8. Sarah Lochlann Jain, Injury: The Politics of Product Design and Safety Law in the United up to a range of connections. For instance, States (Princeton: Princeton University Press, how do queer girls commit suicide? What 2006), 24. of the slow deaths of teenage girls through 9. David Mitchell, Keynote Plenary (Annual anorexia, bulimia, and numerous sexual Meeting, Society for Disability Studies, Temple assaults they endure as punishment for University, June 2010). 10. Robert McRuer, Crip Theory (New York: New the transgressing of proper femininity and York University Press, 2007), 207. alas, even for conforming to it? What is 11. David Mitchell and Sharon Snyder, Cultural the political and cultural fallout of recenter- Locations of Disability (Chicago: University of ing the white gay male as ur-queer subject? Chicago Press, 2006), 17. How would our political landscape trans- 12. See, e.g., Eugene Thacker, The Global Genome (Cambridge: MIT Press, 2006); Kaushik form if it actively decentered the sustained Sunder Rajan, Biocapital: The Constitution of reproduction and proliferation of the Postgenomic Life (Durham, NC: Duke University grieving subject, opening instead toward Press, 2006). 184 | JASBIR K. PUAR

13. Sam Ashman, “Editorial Introduction to the (New York: Columbia University Press, Symposium on the Global Financial Crisis,” 1997). Historical Materialism 17 (2009): 107. 17. Nikolas Rose, “Biopolitics in an Age of Biological 14. Brian Massumi, “Of Microperception and Control” (lecture, New York University, New Micropolitics: An Interview with Brian Massumi,” York, October 15, 2009). Inflections 3 (2008): 2. 18. Gayatri Chakravorty Spivak, Can the Subaltern 15. Michel Foucault, Society Must Be Defended: Speak?,” in Marxism and the Interpretation of Lectures at the Collège de France, 1975–76, ed. Culture, ed. Cary Nelson and Larry Grossberg Mauro Bertani and Alessandro Fontana, trans. (Basingstoke: Macmillan Education, 1988), David Macey (New York: Picador, 2003); and Ian 271–313. Wilmut, Keith Campbell, and Colin Tudge, The 19. Manuel DeLanda, A New Philosophy of Society: Second Creation: Dolly and the Age of Biological Assemblage Theory and Social Complexity Control (Cambridge, MA: Harvard University (London and New York: Continuum, 2006); Press, 2001). Karen Barad, “Posthumanist Performativity: 16. Michel Foucault, Security, Territory, Population: Toward an Understanding of How Matter Comes Lectures at the Collège de France, 1977–78, to Matter,” Signs: Journal of Women in Culture ed. Michel Senellart, trans. Graham Burchell and Society 28 (2003): 801–31. (New York: Picador, 2009); Gilles Deleuze, 20. See Wendy Brown, “Wounded Attachments,” “Postscript on Control Societies,” in Negotiations Political Theory 21 (1993): 390–410. CHAPTER 14

Enabling Disability: Rewriting Kinship, Reimagining Citizenship Faye Ginsburg and Rayna Rapp

In trying to portray my son in the liter- Healing is used here in two senses that ary model known as a novel, I have passed draw our interest as researchers. The word’s through . . . stages. In the case of a person immediate referent would seem to be the like him with a mental disability, it isn’t the capacity of parents and siblings to help heal individual himself but rather his family that the wound of difference for the affected boy. has to pass from the “shock phase” to the But Oe also emphasizes the work the family “acceptance phase.” In a sense, my work on this theme has mirrored that process. I have has undertaken to heal the wound of differ- had to learn through concrete experience ence dealt to its own kinship narrative and to answer such questions as how a handi- practice. Oe, who won the Nobel Prize in capped person and his family can survive literature in 1994, has written several other the shock, denial, and confusion phases books chronicling the transformations in and learn to live with each of those particu- their familial universe inaugurated by the lar kinds of pain. I then had to find out how birth of Hikari. His works have helped his we could move beyond this to a more posi- family and, at a remove, his readers, to tive adjustment, before finally reaching our imagine an unanticipated cultural future own “acceptance phase”—in effect coming to that could give meaning and possibility to accept ourselves as handicapped, as the fam- the reshaped habitus of daily life with a dis- ily of a handicapped person. And it was only 1 then that I felt the development of my work abled family member. Oe’s compassionate itself was at last complete. and frank story of how his family came to (Oe 1995: 46, emphasis added) embrace “being handicapped” is representative of a kind of shift in consciousness— disability consciousness—suggestive of In 1963, when the Japanese novelist a more expansive sense of kinship across Kenzaburo Oe’s son Hikari was born with embodied difference that, we argue, is a dangerous brain tumor, Oe and his wife essential to the growing public presence of chose to have it removed, a process that, disability in contemporary postindustrial along with a range of other kinds of supports, democracies. enabled the infant Hikari to survive, but with The proliferation of publicly circulating a profound disability. Since then, the family representations of disability as a form of has had to re-create itself and its narrative. In diversity we all eventually share—through his book, A Healing Family, Oe describes his our own bodies or attachments to others family’s capacity to embrace Hikari. —offers potential sites of identification 186 | FAYE GINSBURG AND RAYNA RAPP

and even kinship that extend beyond the refiguring of the body politic as envisioned biological family. In the United States in by advocates of both disability and repro- particular, such public representations ductive rights. of the connections (and disconnections) The efforts of families to “rewrite” kin- of disabled people and their families ship are crucial to creating a new cul- across embodied difference have helped tural terrain in which disability is not just to introduce a sense of public intimacy begrudgingly accommodated under the that, we argue, is crucial to redeeming the mandates of expanded post-1970s civil ADA promissory note of a polity “beyond rights legislation, but is positively incorpo- ramps” (Russell 1998). The simultaneous rated into the social body. Likewise, rejec- emergence of the U.S. disability rights tion of the disabled from the familial and movement along with the escalation of social body continues to occur, occasion- reproductive and neonatal technologies ally played out in the public media as scan- has intensified cultural awareness of a dals of exclusion2 and in more intimate range of broader issues. These increasingly arenas as the conventional limits of kinship both shape and destabilize contemporary are sustained rather than transcended. kinship practices as well as debates among When we began to explore the world disability rights activists, feminists, bioeth- of disability—both as parents of disabled icists, and health service providers. children and as anthropologists interested Such concerns engage questions about in reproduction, kinship, and social activ- medical ethics and the complexities of ism—we were struck by narratives like Oe’s reproductive choice; concrete dilemmas and their proliferation in a world in which about how to organize the practical logis- constructions of the body and identity are tics of care for disabled children; political increasingly mediated by biomedical tech- and distributive queries about what citi- nologies.3 We were particularly interested zens are owed; and conceptual questions in contradictions between, on the one about how disability is figured discursively. hand, burgeoning genetic knowledge and While such issues are often made the sub- the neoeugenic practices it has fostered; ject of public policy debate, they come and, on the other, the expansion of more already anchored in the daily and inti- inclusive democratic discourses—in par- mate practices of embracing or rejecting ticular, that of disability rights. To explore kinship with disabled fetuses, newborns, this tension, in this essay we foreground and young children. We suggest, then, that the domains of kinship and reproduc- disability criticism should encompass not tion as key social sites at which many only the public arenas of law, medicine, disabilities are initially assigned cultural and education, or the phenomenology of meaning in the United States. We focus in embodiment. It also needs to engage the particular on contemporary dilemmas sur- intimate arena of kinship as a site where rounding pregnancy and the care of new- contemporary social dramas around borns and children with disabilities, which changing understandings and practices in turn underscore questions concerning of reproduction and disability are often the social location of caretaking and its first played out. Although the term kin- political economy. ship is conventionally associated with the We locate our work at this nexus not private or domestic sphere, we stress the only because reproductive choices—and cultural work performed by the circula- the role played in them by the possibility tion of kinship narratives through various of disability—are increasingly implicated public media as an essential element in the in the new genetic knowledge, but also ENABLING DISABILITY: REWRITING KINSHIP, REIMAGINING CITIZENSHIP | 187 because the parent–child relationship is a anthropology—particularly charged with nexus at which dramatic alternatives are cultural contradictions surrounding ques- articulated: dependency versus autonomy; tions of bodily difference. intimacy versus authority; the acceptance A wide variety of contemporary cultural of caretaking versus its rejection; norma- productions testify to this intensification. It tive cultural scripts versus alternative, more is our argument that such public storytell- inclusive “rewritings.” Clearly, the “passions ing—whether in family narratives, mem- and interests” (cf. Hirschman 1977) at work oirs, television talk shows and sitcoms, here can divide the points of view of chil- movies, or, most recently, through Web dren and parents. These potential divisions sites and Internet discussion groups—is can be particularly acute in the case of chil- crucial to expanding what we call the dren with disabilities, whose bodily and social fund of knowledge about disability. sensory (and, eventually, social and politi- In opening up the experiential epistemol- cal) experiences may be profoundly dif- ogy of disability, as shaped by and shaping ferent from those of their parents. Recent the intimate world of nonnormative family debates about cochlear implants for deaf life, such forms of public culture widen the children or facial surgery for children with space of possibility in which relationships Down syndrome highlight divisions over can be imagined and resources claimed. the value of mainstreaming technologies. We underscore the significance of this bur- Such issues divide families who differ over geoning public circulation of intimate dis- what constitutes “the best interests of their ability stories, expanding the arguments of children.” Although conflicts between the others regarding the place of intimacy in perspectives of parents and children are constituting subjectivities of all sorts. As typically associated with the separation Lauren Berlant writes in her introduction and self-definition that intensify at ado- to the special issue of Critical Inquiry on lescence, we focus here on dilemmas that intimacy, emerge much earlier—indeed, from the embryonic stage or before. Rethinking intimacy calls out not only for redescription but for transformative analyses of the rhetorical and material conditions that REWRITING KINSHIP enable hegemonic fantasies to thrive in the minds and on the bodies of subjects while, at The birth of a child who is, in one sense, the same time, attachments are developing profoundly different from other family that might redirect the different routes taken members can pose an immediate crisis to by history and biography. To rethink inti- the nuclear and extended family. In addi- macy is to appraise how we have been and tion to providing medical support for the how we live and how we might imagine lives affected child, families face the task of that make more sense than the ones so many incorporating unexpected differences into are living. (Berlant 1998: 286) a comprehensible narrative of kinship (Landsman 1999, 2000; Layne 1996). The In the expanded domain of “public inti- birth of anomalous children is an occasion macy” linked to disability, different forms for meaning-making, whether through the of embodiment are represented within the acceptance of “God’s special angels” or the context of domestic routines and subjec- infanticide of offspring deemed unaccept- tivity. If this is true of information-shar- able. And in millennial America, new tech- ing magazines such as Exceptional Parent nologies have made the domain of kinship and the slick and upbeat activist publica- and reproduction—the locus classicus of tion and Web site WeMedia, it is no less 188 | FAYE GINSBURG AND RAYNA RAPP

characteristic of academic writings by task is to understand how these neoeu- scholars who may themselves be disabled genic technologies come to make cultural (Asch 1989; Charlton 1998; Fries 1997; sense despite the emergence of more Handler 1998; Hockenberry 1995; Kuusisto inclusive discourses of disability in other 1998; Linton 1998; Mairs 1996), or caring cultural domains. Prenatal screening, for for disabled family members (Beck 1999; example, is attractive to cost-accounting Bérubé 1996; Featherstone 1980; Finger health care bureaucracies in which market 1990; Jablow 1982; Kittay 1999; Seligman forces increasingly stratify the “choices” and Darling 1989). We suggest that such made available to different constituencies representations—what we call disability as medical care becomes subject to the narratives—are foundational to the inte- spreading hegemony of neo-liberal prac- gration of disability into everyday life in tices and ideologies. The attractiveness the United States, a process that is in turn of prenatal screening to cost-conscious essential to the more capacious notions of health bureaucracies is a case in point: citizenship championed by the disability with the administration of medical care rights movement. As authored by disabled increasingly under the sway of hegemonic people and/or their family members, these neoliberalism, market forces come to dic- narratives offer revised, phenomenologi- tate what choices are available to different cally based understandings that at times constituencies. also anchor substantial analyses of the In the United States, and increasingly social, cultural, and political construction throughout the postindustrial world, the of disability. The dissemination of such anxieties that accompany pregnancy are, intimate insights among a broader public we argue, exacerbated by the individu- has helped to mobilize an extraordinary alized and privatized nature of medical and rapid transformation since the 1970s decision-making. When it comes to infor- in the way such notions as rights, entitle- mation about the forms of medical and ment, and citizenship are conceived—a community support that might be avail- transformation that is shaping public pol- able to the family of a child with a stigma- icy in areas such as health care, education, tized difference, the access of prospective transportation, and access to built, aural, parents is limited. They are often unaware and visual environments. of the social fund of knowledge that would Of course, not all disability narratives help them make a more knowledgeable are so inclusive. A very different discourse choice (Ginsburg and Rapp 1999). This about disability has emerged around the de facto segregation is apparent in nar- proliferation of reproductive technologies, ratives elicited by researchers from preg- in particular prenatal testing for detectable nant women and their supporters about fetal anomalies. Certain assumptions are their attitudes and aspirations regarding foundational to these processes. While U.S. prenatal testing (Browner 1996; Kolker and genetic counselors are trained to express Burke 1993; Press and Browner 1995; Rapp neutrality about the choices a pregnant 1999; Rothman 1986). Unlike the stories woman and her partner may make around discussed earlier, few encounters with pre- amniocentesis testing, the very existence natal testing are rendered as public nar- of such a technology and the offer of such rations. While the social science literature tests under the terms of consumer choice suggests that awaiting the results of an are premised on the desire for normalcy amniocentesis is quite stressful, the stress and fear of unknown abnormalities (Parens turns out to be ephemeral for those who and Asch 2000). As anthropologists, our receive normal diagnoses of their fetuses. ENABLING DISABILITY: REWRITING KINSHIP, REIMAGINING CITIZENSHIP | 189

They retrospectively experience the test as and more acceptable genre of disability nar- a nonevent; amniocentesis is quickly sub- ratives. The themes shaping these different sumed within the schedule of now-routine genres of narratives about disability reveal health procedures whose presumed out- the crucial role that kinship plays in social come is a “normal” baby. By contrast, most exclusion, on the one hand, and as a site for of those whose diagnosis is positive choose the transformative cultural work that can to end the pregnancy. Such events gener- help resituate disability in contemporary ally pass unmarked, as is the case with American social life, on the other. Clearly, most abortions in the West (for the coun- disability stories are complex and variable. terexample of Japan, see Hardacre 1997). The parenting literature, for example, is Writing about abortion, especially under fraught with the tensions between efforts circumstances such as these, when the to normalize the experience of disabil- pregnancy was initially desired, is fraught ity and the need for advocacy and special with personal and political risk. Those few resources to accommodate those who can- pregnant women who have breached the not enter mainstream American society veil of privacy surrounding prenatal test- through the same pathways or trajectories ing and abortion tend to circulate their as most others. stories only in specialized medical contexts These tensions are themselves a reflec- (Green 1992; Brewster 1984; but cf. Rapp tion of the way that consumer capitalism 1999). In describing their decision-making is shaping the experience of reproduction processes, they tend to emphasize the lim- in the United States. Perhaps the starkest its of caretaking within an available family examples are provided by the contempo- structure and concern for a child’s poten- rary trend of increasingly aggressive medi- tial suffering. cal intervention, with the new reproductive technology of prenatal testing conjuring up Some people say that abortion is hate. I say a familiar specter from dystopian science my abortion was an act of love. I’ve got three fiction: that of designer babies for the mar- kids. I was forty-three when we accidentally ket (McGee 1997). At the same time, large got pregnant again. We decided that there numbers of compromised babies are able was enough love in our family to handle it, to survive thanks to advances in medicine even though finances would be tight. But and in therapeutic regimens such as occu- we also decided to have the test. A kid with a serious problem was more than we could pational therapy and infant stimulation handle. And when we got the bad news, programs (Landsman 1999, 2000). These I knew immediately what I had to do. At diverging sociomedical practices, which forty-three, you think about your own death. are increasingly part of normal obstetric It would have been tough now, but think and neonatal medicine, embody a dou- what would have happened to my other kids, bled telos of modernity and technology. especially my daughter. Oh, the boys, Tommy The practices of genetic testing, and other and Alex, would have done okay. But Laura genetic research, seem to promise perfect- would have been the one who got stuck. It’s ibility for those who choose and can afford always the girls. It would have been me, and cutting-edge interventions (although what then, after I’m gone, it would have been the “perfectibility” might mean in practice big sister that took care of that child. Saving Laura from that burden was an act of love. is highly contested, as we discuss below). (Rapp 1999: 247) Concomitantly, other new technologies, medical and otherwise, offer another Such stories provide an illuminating, if promise of expansive democratic inclu- stark, comparison to the more established sion and improved quality of life for those 190 | FAYE GINSBURG AND RAYNA RAPP

marked by difference from a hegemonic occasion, they are motivated to rewrite norm of embodiment (Blair 2000). kinship in ways that circulate within larger Suppressed in these narratives of moder- discursive fields of representation and nity, which stress individual choice and activism. achievement, is the crucial place of kinship and gender in structuring these possibili- THE LIMITS OF KINSHIP ties. Specifically, this double telos places pregnant women under the very American Despite a quarter century of activism, pol- pressure of “choice.” Many women, and icy innovation, and the substantial provi- especially women with first pregnancies, sion of public services, in the United States, imagine themselves entering the work- the securing of care for disabled members place of contemporary mothering in one of rests with the family. A vast gap remains two ways. Most plan to control the balance between the rhetoric of public inclusion between participation in wage labor and that mandates everything from universal the domestic economy. They use prenatal design to inclusive classrooms and the testing hoping never to face a pregnancy battles that still have to be fought on a daily whose outcome would demand more care- basis to ensure their availability—battles taking than they feel they could provide; which not everyone can or will fight. As the selective abortion haunts this dilemma. mother and the aunt of a child with sig- This model of rationality fits easily with the nificant disabilities point out in the article one that has emerged with genetic counsel- “Uncommon Children”: ing, which assumes the power of individu- Laws attempt to provide parity in society als, no matter how constrained, to make for disabled individuals, but do they go far rational choices that will “improve the enough? Underfunded and understaffed quality” of their lives. A minority of women public schools may be hard-pressed to meet approach these tests differently, without sophisticated or extensive needs. Parents intent to abort. They view the test as a tech- of “special ed” children become angry at nology for appropriate preparation should the lack of responsiveness while parents of they need to provide specialized support typical children grow resentful of monies for the birth of a child with a serious disabil- seemingly diverted from regular ed. The very ity. In both cases, the assumption endures people who need to work together to meet that infant and child care are primarily the these complex challenges are often pitted against each other. responsibility of the individual mother, We expect parents of children with disabil- with support from other kin and recourse ities to “rise to the occasion,” but some don’t to the marketplace, if finances permit. or can’t. As a nation we were recently horri- The caretaking of a disabled infant fied by the Kelsos, who left their profoundly requires different and expanded resources disabled ten-year-old at a Delaware hospital than can be provided by most kin groups with a note saying they could no longer care without additional forms of support. The for him. Certainly, they did the wrong thing. complexities of mobilizing the necessary But their desperate act should not be dis- medical, therapeutic, and social support missed lightly as simply aberrant. (O’Connell reveal the limits of kinship within a gen- and Foster 2000: 18) dered nuclear family structure. It is through this revelation, we suggest, that some begin When we step back from this impas- to reimagine the boundaries and capaci- sioned description of a grim social land- ties of kinship and to recognize the neces- scape, we recognize this narrative as sity of broader support for caretaking. On grounded in a potentially productive ENABLING DISABILITY: REWRITING KINSHIP, REIMAGINING CITIZENSHIP | 191 tension between a capacious view of liberal mother passed on, then my sister, she helped democracy, in which law and social services me out as much as she could. With this one, are expanding to accommodate the needs we’re planning to ask for help from a neigh- of people with disabilities, and the reality of bor who takes in a few kids. I couldn’t keep the daily tasks of caretaking, which remain a baby with health problems. Who would baby-sit? (Rapp 1999: 145) in the household, dependent on family— and overwhelmingly female—labor. At the same time, biomedical technology holds Such stories poignantly illustrate how out utopian promises that elide the dilem- close to the edge many parents feel when mas of caretaking while raising others they imagine the juggling of work and fam- about perfectibility, exemplified in a vari- ily obligations should disability enter an ety of sometimes controversial supports already tight domestic economy. Such sto- to people with disabilities, from cochlear ries can also mask deep-seated prejudices implants for the hearing-impaired to against the imagined “courtesy stigma” computer resources for “fast-forwarding” incurred by those close to people with learning-disabled students. Technology “spoiled identities” (Goffman 1963). Yet it has also delivered a rapidly expanding is important to highlight the material pres- panoply of reproductive choices. Reliable sures under which many families with two and inexpensive birth control, infertility working parents find themselves and that treatments, and safe and legal abortion serve as the matrix in which the decision to have greatly enhanced women’s ability to use prenatal testing is made. control the circumstances of mothering. As we noted above, some have argued The prenatal diagnosis of disabling condi- that in an upper-middle-class environment tions in fetuses is surely part of this tech- where children are increasingly regarded nological modernity. The common choice as commodities, genetic testing raises to abort based on such diagnoses suggests expectations among parents that they can the limits of the expansion described above “choose” to have a “perfect” baby (Browner and the implicit recognition that much of and Press 1996; Press and Browner 1995; the labor of caretaking, especially in infancy Corea 1985; Rothman 1986). A more com- and childhood, still falls on mothers.4 In a plex scenario emerges when women of sense, technologies such as amniocentesis diverse class, racial, religious, and national are allowing pregnant women and their backgrounds who were offered prena- partners to construct the limits of kinship tal testing were interviewed (Rapp 1999). on their own terms, however constrained. Whatever their cultural background, most Realistically, many fear that the social sup- pregnant women and their supporters port that they would need for a disabled are concerned not so much with perfec- child might be difficult to obtain. This was tion, but seek basic health and “normalcy,” true in many of the narratives of working- recognizing the limits of the material cir- class women who chose amniocentesis, cumstances within which they undertake who had vivid images of what a chronically mothering. Indeed, some were willing to ill child might do to their lives. One woman live with a range of disabling conditions explained her decision to have prenatal if they could manage it practically and if testing this way: the child could enjoy life. Nonetheless, most were frightened by the stigmatiz- With my other two, Lionel worked nights, ing conditions that the test might predict, I’m on days, we managed with a little help about which they knew almost nothing, from my mother. When Eliza was three, my and whose consequences they could only 192 | FAYE GINSBURG AND RAYNA RAPP

imagine (Rapp 1999). Such conflicted of differences coded as biological deficien- responses are not surprising, given that the cies. Over the last twenty-five years, they survival of disabled infants has escalated have helped to catalyze policy initiatives dramatically thanks to improvements in that offer a potentially radical challenge to infant surgery, antibiotics, and life-support the boundaries of citizenship and the rela- technologies. At the same time, the knowl- tions of obligation between (temporarily) edge of what is entailed in caring for such able-bodied and dependent people across children remains absent from mainstream the life cycle. The IDEA, or Individuals with discourse, underscoring a sense of social Disabilities Education Act (1975), followed segregation and stigma. On the genetic fron- by the ADA, or Americans with Disabilities tier, where the use of prenatal diagnostic Act (1990), are the two key pieces of post- technologies is rapidly becoming routine, war federal legislation that have estab- a gap exists between the medical diagno- lished the framework for the civil rights for sis of a fetal anomaly and social knowledge Americans with disabilities. These accom- about life with a child who bears that con- plishments have dramatically transformed dition. In this gap, the use of amniocentesis both the institutional and intimate frame- and selective abortion becomes perfectly works within which American families rational. This tendency to marginalize and operate. segregate disability issues will continue, The responses of what Oe calls “disabled legal progress and expanded public con- families” have shaped and been shaped by sciousness notwithstanding, until the con- these historically shifting conditions. In ditions of care are less privatized and the the 1950s and 1960s, for example, many social fund of knowledge is increased. It is middle-class parents were commonly this disjunction, then, between neighbor- advised to institutionalize “non-normal” ing fields of social knowledge that animates children whose survival rate was rising due the narrative urgency of those compelled to aggressive medical innovations, eras- to tell what might be termed their un- ing their presence from the household and natural histories, as they struggle to repre- muffling their voices in family stories. Since sent the difference that disability makes in the 1970s, however, deinstitutionaliza- the domain of kinship. tion and early-intervention programs have increasingly supported families in keeping disabled children at home. Responding CHANGING CULTURAL SCRIPTS to these changed circumstances, some The cultural dialectic between perfect- families have begun to articulate new and ibility and inclusion has often animated public versions of domestic life with dis- the work of the activist individuals, fami- abled children in an effort to reconfigure lies, and groups who are the crucial link the discursive space defining these social between the intimate domain of kinship fields. At the same time, a combination of and the broader public sphere. The utopian forces—the Roe v. Wade decision legalizing promise of perfectible children has had abortion in 1973; the international devel- a long-standing hold on the American opment of prenatal genetic testing; and cultural imagination and is particularly the rise of second-wave feminism, with its powerful under current techno-scien- advocacy of broad-based options for wom- tific regimes. At the same time, the ideal en’s public and private lives—increasingly of equality has been the touchstone of a medicalized and individualized the cultural range of social movements that demand salience of reproductive choice. Twenty inclusion for those excluded on the basis years on, the dilemmas of such “choices” ENABLING DISABILITY: REWRITING KINSHIP, REIMAGINING CITIZENSHIP | 193 have become a staple of public debate, as understanding of citizenship in which dis- powerful medical, genetic, and prosthetic ability rights are understood as civil rights technologies extend and enable fragile (Asch 1989; Bérubé and Lyon 1998; Kittay lives even as prenatal screening technolo- 1999; Linton 1998). gies give prospective parents the option to terminate an anomalous pregnancy. Citizens of this “republic of choice” (after MEDIATING DISABILITY Friedman 1990) face contradictory options The creation of kinship ties between non- that exceed the extant frameworks for ethi- disabled and disabled people requires the cal deliberation. In the contemporary sce- imagining, for many families, of an unan- nario, it is women in particular who have ticipated social landscape. This sense of thus been cast as moral pioneers. These reorientation to a place of possibility, as anxiety-provoking circumstances generate opposed to disappointment, is evident in and are reflected in contemporary public the text of a flyer authored by Emily Kingsley testimony about disability, whether in the (see below) posted prominently often with- work of accomplished writers such as the out attribution in many American pediat- Nobel Prize-winning Oe or in less promi- ric wards. It offers families of chronically nent forms of cultural production. Such ill and disabled children a parable of an narrative engagements with unanticipated unexpected journey to an unknown world, difference within the intimate culture of a counternarrative of hope in the face of the family can be understood as interven- the sense of crisis experienced by many tions into the public sphere. They work to families with hospitalized offspring: subvert the hegemonic discourse of perfectibility disseminated by such sites as WELCOME TO HOLLAND obstetric medicine, middle-class parenting by Emily Perl Kingsley literature, and, more generally, contempo- I am often asked to describe the experience rary U.S. models of personhood that valo- of raising a child with a disability - to try to rize celebrity and individual will. help people who have not shared that unique The cultural activity of rewriting life sto- experience to understand it, to imagine how ries and kinship narratives around the fact it would feel. It’s like this … When you’re going of disability, whether in memoir, film, or to have a baby, it’s like planning a fabulous everyday storytelling, enables families to vacation trip—to Italy. You buy a bunch of comprehend (in both senses) this anoma- guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The lous experience, not only because of the gondolas in Venice. You may learn some capacity of stories to make meaning, but handy phrases in Italian. It’s all very exciting. also because of their dialogical relation- After months of eager anticipation, the day ship with larger social arenas. Indeed, the finally arrives. You pack your bags and off transformation of both emotional and you go. Several hours later, the plane lands. technical knowledge developed in kin The stewardess comes in and says, “Welcome groups with disabled family members can to Holland.” “Holland?!?” you say. “What do foster networks of support from which you mean Holland?? I signed up for Italy! activism may emerge. In other words, the I’m supposed to be in Italy. All my life I’ve way that family members articulate chang- dreamed of going to Italy.” But there’s been ing experiences and awareness of disability a change in the flight plan. They’ve landed in Holland and there you must stay. The impor- in the domain of kinship not only provides tant thing is that they haven’t taken you to a a model for the body politic as a whole, horrible, disgusting, filthy place, full of pesti- but also helps to constitute a broader lence, famine and disease. It’s just a different 194 | FAYE GINSBURG AND RAYNA RAPP

place. So you must go out and buy new guide was considered the responsible action to books. And you must learn a whole new lan- take for their care. Children with DS were guage. And you will meet a whole new group regarded as incapable of emotional attach- of people you would never have met. It’s just ment or education. It is only since the 1970s a different place. It’s slower-paced than Italy, that the conjunction of the deinstitutional- less flashy than Italy. But after you’ve been ization movement, the creation of early- there for a while and you catch your breath, you look around … and you begin to notice intervention programs for developmentally that Holland has windmills … and Holland delayed infants and toddlers, and the pas- has tulips. Holland even has Rembrandts. sage of federal and state laws protecting the But everyone you know is busy coming and civil rights of the disabled have provided a going from Italy … and they’re all bragging social environment in which most families about what a wonderful time they had there. of DS children are now able to take them And for the rest of your life, you will say “Yes, home at birth. This remarkable shift in bio- that’s where I was supposed to go. That’s medical, legal, and familial discourse and what I had planned.” And the pain of that will practice can be attributed in part to the never, ever, ever, ever go away... because the direct activism of parents’ groups such as loss of that dream is a very, very significant the Association for Retarded Children (now loss. But … if you spend your life mourning the fact that you didn’t get to Italy, you may the Arc) as well as to the indirect impact never be free to enjoy the very special, the of writings by the kin of DS people—and very lovely things … about Holland. eventually by affected individuals themselves—particularly in the form of memoir. There is often a direct relationship between Such rescriptings present an alternative the initial efforts of families to reimagine world of kinship based on a shared differ- their narratives and the more public actions ence, a phenomenon common to many dis- they undertake to help rescript narratives ability support networks (Rapp, Heath, and of inclusion at a broader cultural level. But Taussig 2001). The following quote from the call to rethink kinship enacted in the two authors who recently became disabil- posting of the Blue Tulips flyer is relatively ity activists on behalf of their child clearly recent and very much the product of the acknowledges an indebtedness to those activism of families who have struggled whose narratives have created a sense of against the categories imposed by medical kinship that spans generations and crosses and bureaucratic regimes. biological family lines: The example of Down syndrome can Like all parents of children with Down syn- illustrate the negotiation of such a cat- drome, we owe a great deal to the authors of egory. Until the 1970s, many U.S. doctors books like Count Us In—themselves young would not treat the esophageal and heart men with Down’s syndrome—and their problems for which newborns with DS are families for having transformed the social at increased risk, although the procedures meaning of Down’s syndrome by helping to for repair were increasingly well known. develop what’s now called “early intervention Parents of such children were encouraged for infants with disabilities.” But we also find ourselves the unwitting heirs of people and to “let go,” and often had no source of movements we never knew we were related knowledge with which to dispute medical to. We saunter with our Jamie publicly largely experts. The result was passive infanticide, thanks to Dale Evans who, in 1953, wrote or what medical historian Martin Pernick Angel Unaware, a best selling memoir of her (1996) has called the “Black Stork.” For daughter Robin who was born with Down’s children who survived, institutionalization syndrome and died at age two. (Bérubé and was common; removal from their families Lyon 1998: 274, emphasis added) ENABLING DISABILITY: REWRITING KINSHIP, REIMAGINING CITIZENSHIP | 195

Despite the progress that has been made generations of families engaging with the since the publication of Angel Unaware, social fact of disability. The activism of one bringing a child with DS home is still an act parent, Emily Kingsley, a scriptwriter for of personal assertion in the United States; the children’s television program Sesame in New York state and many other places, Street, is exemplary of this process. Kingsley the mother of a newborn diagnosed in was told that her son “would never have a the hospital is always offered fosterage or single meaningful thought” when Jason adoption placement. Although this prac- was born and diagnosed with Down syn- tice is shockingly offensive to many new drome. She was counseled to institution- mothers, we should point out that it devel- alize Jason immediately and to “try again” oped with “the best interests of the child” (Kingsley and Levitz 1994: 3). Instead, she in mind. Hospital personnel know that wrote him into the script of Sesame Street, disabled babies are at high risk of being where he appeared throughout his child- abandoned; as they grow older and more hood. Contrary to the dire predictions for difficult to care for, they also grow harder to his intelligence, at age six he was “count- place in a good home. As newborns are the ing in Spanish for the cameras” (1994: 4). easiest babies to place, social workers offer The Kingsleys’ cultural activism opened information on adoption right away. But the the door for people with other disabili- practice has an unintended consequence. ties—people using wheelchairs, braces, The task of composing a normalizing nar- and seeing-eye dogs—to appear as part of rative that can create a space of inclusion the quotidian world of mass media that is for the DS child within the family circle is now an integral part of the public sphere of immediately thrust upon the mother, who most postindustrial countries. Jason him- has to justify to medical personnel the oth- self went on to coauthor the aforemen- erwise unproblematic action of taking her tioned book, Count Us In, with his friend newborn home with her. Mitchell Levitz, who also has DS. Later, his Constructing such a normalizing nar- mother scripted a prime-time docudrama rative is an ongoing process. Down syn- based on her family’s experiences, entitled drome affects the full spectrum of class Kids Like These (CBS, 1991). Of course, this and ethnic differences in the United States, ability to work in (and have access to) such and parents of DS children pursue a cor- media venues is not simply a matter of indi- respondingly wide variety of strategies for vidual achievement, but also of the cultural expanding the reach and support of their capital of activist families. As Bérubé and children’s lives. The established script of Lyon (1998: 282) point out: “Their fame . . . Down syndrome is being rewritten across depends on their good fortune: not only a range of sites in a way that opens up a were they born into extremely supportive supportive universe for disabled people families that contested the medical wisdom and their kin. The Special Olympics; infant of their day, but they were born into fami- stimulation programs; consciousness-rais- lies well-positioned for activism.” Another ing and other sorts of events organized mother, Gail Williamson, whose son Blair by the disability rights community; and has DS and has also appeared on televi- Internet chat groups are all examples of sion, was moved to establish Hollywood’s sites that can help reconfigure community first talent agency for disabled actors in the for dubious family members. entertainment industry (Gray 1999). These forms of positive public mediation Many Americans met their first person of disabled people play an important role with Down syndrome in the late 1980s in refiguring the cultural landscape for new through the virtual presence in their living 196 | FAYE GINSBURG AND RAYNA RAPP

rooms of Chris Burke, who became a teen opposed to what some disabled children star in ABC’s Life Goes On. Introduced by refer to as “models in wheelchairs”). The cast members singing the Beatles’ popular shows discussed above are salient excep- song, “Ob-La-Di, Ob-La-Da, Life Goes On,” tions, as is the Nickelodeon children’s the show provided a realistic depiction of cable network’s magazine program, Nick disability as part of everyday family life, News. “What Are You Staring At?” was an while indexing, as the theme song’s lyrics innovative special produced by Nick News do, an optimistic message of possibility. that aired repeatedly during 1999. The half- But Chris’s story is not only about his heroic hour program featured a group of kids and triumph over adversity as an individual teens with a range of disabilities—DS, hear- (Burke and McDaniel 1991). It is imbricated ing and visual impairments, cerebral palsy, in the complex nexus of changing contexts polio, burn injuries—talking about their sketched above that have radically altered lives with celebrity crips, journalist John the biomedical, familial, practical, and Hockenberry and actor Christopher Reeve. legal narratives structuring disability in The anecdote that follows, an account of America over the last three decades. one youngster’s experience of this show, Inevitably, the advertising industry was may be read as an illustration of the way quick to follow the lead of Life Goes On, that such public interventions can help recognizing the potential for growth, not to create an alternative horizon of kinship only in direct sales to market niches rang- extending beyond the nuclear family. ing from psychotropic pharmaceuticals to adaptive technologies, but also in a more In the summer of 1999 in New York indirect appeal to the loyalty of families City, ten-year-old Samantha Myers surfed with disabled members, through the inclu- onto “What Are You Staring At?” and was sion of DS kids and teens in commercials riveted. When the final credits ended, for McDonald’s, Benetton, and even in she announced to her mother that she popular advertising circulars. Such efforts wanted to talk about her disability on have been subject to criticism from some television. Samantha’s disorder, Familial activists for reducing issues of citizenship Dysautonomia (FD),6 is an extremely to consumption. Yet the presence of people rare condition of the involuntary ner- with visible disabilities in the landscape of vous system that affects all forms of body popular and commercial culture has been regulation, including temperature, blood embraced enthusiastically by many fami- pressure, swallowing, and respiration. lies as a sign of the growing public incor- With some adult assistance, she found the poration of this historically stigmatized Web site for the Make-A-Wish Foundation, difference. It speaks as well to the erasure of a group that grants “wishes” to children disabled characters that continues to pre- with life-threatening diseases. She e- vail in the popular media since the appear- mailed them, explaining that her wish was ance of such figures, even in advertising, is to go on Nick News and talk about her life still regarded as exceptional. with FD. Within two weeks, she was working with a friend and a Make-A-Wish volunteer, making a pitch book with color “WHAT ARE YOU STARING AT?” photos and handwritten text about her life Whatever progress has been made, there and disability. Sam’s inventory of her life are still relatively few televisual spaces for included police-style pictures she took of children that regularly feature kids with all her medical equipment, as well as pho- disabilities talking about their own lives (as tos of her dog, friends, and relatives. ENABLING DISABILITY: REWRITING KINSHIP, REIMAGINING CITIZENSHIP | 197

By her eleventh birthday, she was work- like Mary Johnson and Cass Irvin, who in ing with a producer from Nick News to 1980 founded the alternative journal The make a five-minute segment that she nar- Disability Rag (Shaw 1994). Nowadays, the rated, replete with footage of her school, work of activists in visual media is increas- doctor, friends, and some whimsical com- ingly evident in the plethora of photog- puter animation to make it kid-friendly. In raphy shows and film and video festivals late April 2000, the show was broadcast; devoted in part or entirely to the topic of as a result, over the next few months, Sam disability. And, of course, the Web sites, was invited to show her tape and talk to a e-lists, and chat groups of the Internet number of groups. Of greatest significance have dramatically expanded the range of to Sam was that so many FD kids were able sites at which images of disability are being to see another child like them on television. negotiated. She was deluged with e-mail from families The circulatory reach of electronic media with FD children around the country who is the key factor in the creation of what were thrilled to see an image and story that we call mediated kinship. Emerging as a for once included their experience. Many, neighboring—and sometimes overlap- like Sam, went on to use copies of the tape ping—field to the formal, institutionalized to help teachers and classmates under- discourse of disability rights, mediated kin- stand the particular issues that kids with ship offers a critique of normative American FD face on a daily basis. family life that is embedded within everyday cultural practice. Across many genres, MEDIATED KINSHIP a common theme is an implicit rejection of the pressure to produce “perfect fami- The media world into which Sam surfed lies through the incorporation of differ- at the end of the twentieth century is evi- ence under the sign of love and intimacy dence of a transforming public culture in in the domain of kinship relations. We sug- which disability is becoming a more visible gest that these mediated spaces of public presence in daily life. This anecdotal evi- intimacy—talk shows, on-line disability dence—Sam’s immediate sense of kinship support groups, Web sites, and so on—are with the disabled kids she saw and heard crucial for building a social fund of knowl- on television and her desire to join that edge more inclusive of the fact of disability. process—suggests how significant such These media practices provide a counter- imagery can be to those who do not see discourse to the naturalized stratification of themselves regularly in dominant forms family membership that for so long has mar- of representation. Indeed, much of the ginalized, in particular, those disabled from early writing in disability studies focused birth. It is not only the acceptance of differ- not only on the need for changes in civil ence within families, but also the embrace rights legislation, but also on the absence of relatedness that such models of inclusion of disabled people from literature and present to the body politic that makes these popular media—or, where present, the spaces potentially radical in their implica- negativity of their portrayal, citing the leg- tions. As sites of information and free play acy of freak shows, circuses, and asylums of imagination, these cultural forms help to (Bogdan 1988; Thomson 1997). Others create a new social landscape. were working actively to alter the media The struggle to form inclusive familial landscape itself. Along with parent-activ- units takes place within an increasingly ists who worked in the mainstream media, complex discursive world, a terrain in which such as Emily Kingsley, there were people the so-called genetic revolution—and the 198 | FAYE GINSBURG AND RAYNA RAPP

part played within it by prenatal testing— affects all Americans. Yet it is a barely vis- cannot be ignored. One suggestive source ible landscape to most people unless and of images by which that revolution is imag- until their own or a family member’s dis- ined is via a classic trope of science fiction: ability reveals its limitations on a practical, the neoeugenic dystopia, as portrayed daily level.7 in books such as The Handmaid’s Tale These revelations of the limits of kinship- (Atwood 1986) and in films such as Gattaca based caretaking and the need for broader (Andrew Niccol, 1997); these are stories of social recognition and resources for people monstrous kinship. But a more common with disabilities fuel the narrative urgency discursive field is the science or business we have described throughout, beginning page of the newspaper, where advances with Oe’s compelling story of a “healing in scientific knowledge, especially genetic family,” offering stories of familial inclusion technologies, are regularly reported, yet that can serve as models of social inclusion the social dilemmas they index go largely as well. Additionally, progress in legal are- undiscussed. nas has problematized the presumption of These dilemmas beg questions about American citizenship as the exclusive enti- who is entitled to make interventions into tlement of a normative, able-bodied, non- reproduction, the capacity of kinship to dependent, wage-earning individual. At encompass difference, and the social loca- best, this model of personhood describes tion of care. Although these are experienced only a portion of the normal human life as private, family matters, they cannot cycle. At worst, it systematically erases the be contained within domestic domains. rights of the disabled and their caretakers Caretaking is perhaps the most naturalized to have their fundamental needs addressed of these, conventionally attached to the in the public arena. unpaid labor of women in the home. Yet, Although we have focused here on the in the United States, it is rapidly becoming nexus of disability rights and reproduc- a politicized arena in a privatizing econ- tive decision-making as highlighted in the omy in which families are expected to be parent–child relationship, kinship and dis- “always on call,” as Carol Levine argues in ability—as instantiated by congenital dif- her book of that title, to care for disabled ference, accident, illness, infancy, or old kin (Levine 2000; see also Nussbaum 2001). age—remain entwined throughout the life If paid, the labor of family caregivers would cycle. Thus, the disjunction between the cost about $200 billion a year (Langone aspiration for democratic inclusion and 2000). Nevertheless, while health insur- the fantasy of bodily perfectibility through ance increasingly covers the routinization technological intervention has energized of new reproductive technologies (NRTs) much popular cultural expression, creat- and the costs of neonatal intensive care ing a growing sense of public intimacy units (NICUs), most home-based personal with experiences of disability. In this gap, assistance—a need estimated at 21 bil- disability narratives offer what we have lion hours yearly—goes unpaid by public called unnatural histories, visions of lives funds, despite the demonstrable bodily, lived against the grain of normalcy. It is emotional, and economic benefits of dein- here, we have argued, that the relations of stitutionalizing support (Johnson 2000: 14; kinship have the capacity to enable dis- Linton 1998; Russell 1998). This is a skeletal ability, giving narrative shape and cultural sketch of the political economy of health imagination to efforts to form a more per- care and assisted living “choices” that fect union. ENABLING DISABILITY: REWRITING KINSHIP, REIMAGINING CITIZENSHIP | 199

NOTES involved and committed to this kind of labor and have played exemplary public roles as well We have many people to thank, first and foremost (e.g., Oe 1995; Bérubé 1996). However, the high our children, who have opened our eyes to worlds divorce rates in families with disabled children is more exotic than we ever imagined we would one indication that such fathers might be more encounter as anthropologists. We thank Carol A. the exception than the rule. We also note the gen- Breckenridge, Candace Vogler, and the editorial dered nature of caretaking and the professions board of Public Culture for helpful comments, associated with it, such as nursing, home health and Barbara Abrash and Simi Linton for their con- care, special education, and occupational and structive engagement with the final draft. physical therapy. 1. Oe’s writings point to the impossibility of individ- 5. Rayna Rapp first heard this parable, attributed ual solutions—even at the level of narrative—to to Emily Kingsley, at a Down syndrome parents’ what are cultural and social dilemmas. In a kind support group in 1985. It was plastered on the of parallel process, Oe has also written movingly walls of the pediatric ward Faye Ginsburg occu- on the aftermath of Hiroshima, an assignment he pied with her daughter for most of 1989. More began the same year Hikari was born. This project elaborate versions have since appeared in print, enabled him to cope with the incomprehensibil- at sites as diverse as the Brooklyn waiting room of ity of his son’s condition by placing it in an even a school board Committee on Special Education more inexplicable context of social suffering. and the back of a newsletter for parents of dis- 2. For example, national attention was riveted on abled children. the upper-middle-class Kelso family of subur- 6. Information on FD is readily accessible at two ban Philadelphia in December 1999, when they Web sites: www.FamilialDysautonomia.org and abandoned their ten-year-old son, Steven, with www.FDVillage.org. his diapers, medications, toys, and medical 7. In the United States and throughout much of records at the Du Pont Hospital for Children in the world, the tasks of caretaking continue to be Wilmington, Delaware. Their nursing schedule naturalized in the domain of unpaid domestic had fallen apart over the holidays, and the par- labor. Increasingly, however, challenges to this ents claimed they could no longer cope with the situation are emerging as a result of the expand- intensity of their child’s needs. While stories of ing needs of caretaking over the life cycle. The abandonment are not uncommon, this one made increased rate of survival among such formerly public headlines in part because the mother had high-risk groups as low-birth-weight babies, the been a prominent volunteer on the Pennsylvania chronically ill, and the elderly make claims on Developmental Disabilities Council. public resources, usually mediated through their 3. The recent explosion of U.S. writing on dis- kin. Advocacy groups such as the growing move- ability, building on the groundbreaking work of ment for Independent Living seek public support scholars/activists who have been writing since for personal assistance, a policy that, they argue, the 1970s, is reflected in such developments as “would relieve an enormous amount of stress on the dramatic growth of the Society for Disability families and, over time . . . would begin to alter Studies, the launching of book series such as the public perception toward significantly dis- Corporealities: Discourses of Disability (edited abled people and the people who relate to them” by David T. Mitchell and Sharon L. Snyder for (Marca Bistro, head of the National Council on the University of Michigan Press), and the cre- Disability, quoted in Johnson 2000: 14). ation of university-based disabilities studies programs, such as the one at the University of Illinois at Chicago. 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care unit. Medical Anthropological Quarterly 10: politics of reproduction, edited by Faye D. Ginsburg 624–56. and Rayna Rapp. Berkeley: University of California Levine, Carol, ed. 2000. Always on call: When illness Press. turns families into caregivers. New York: United Rapp, Rayna. 1999. Testing women, testing the fetus: Hospital Fund of New York. The social impact of amniocentesis in America. Linton, Simi. 1998. Claiming disability: Knowledge New York: Routledge. and identity. New York: New York University Rapp, Rayna, Deborah Heath, and Karen Sue Taussig. Press. 2001. Genealogical disease: Where hereditary Mairs, Nancy. 1996. Waist-high in the world: A life abnormality, biomedical explanation, and fam- among the non-disabled. Boston: Beacon. ily responsibility meet. In Relative matters: New McGee, Glenn. 1997. The perfect baby: A pragmatic directions in the study of kinship, edited by Sarah approach to genetics. Lanham, Md.: Rowman and Franklin and Susan MacKinnon. Durham, N.C.: Littlefield. Duke University Press. Murphy, Robert. 1987. The body silent. New York: Rothman, Barbara Katz. 1986. The tentative pregnancy: Henry Holt. Prenatal diagnosis and the future of motherhood. Nussbaum, Martha. 2001. Disabled lives: Who cares? New York: W. W. Norton. New York Review of Books 48: 34–37. Russell, Marta. 1998. Beyond ramps: Disability at the O’Connell, Linda G., and Lisa G. Foster. 2000. end of the social contract: A warning from an uppity Uncommon children. Mt. Holyoke Alumnae crip. Monroe, Maine: Common Courage. Quarterly, spring, 13–18. Seligman, Milton, and Rosalyn Benjamin Darling. Oe, Kenzaburo. 1995. A healing family, edited by S. 1989. Ordinary families, special children: A sys- Shaw and translated by Stephen Snyder. Tokyo: tems approach to childhood disability. New York: Kodansha International. Guilford. Parens, Erik, and Adrienne Asch, eds. 2000. Prenatal Shaw, Barrett. 1994. The ragged edge: The disability testing and disability rights. Washington, D.C.: experience from the pages of the first fifteen years of Georgetown University Press. The Disability Rag. Louisville, Ky.: Advocado. Pernick, Martin S. 1996. The black stork: Eugenics and Stiker, Henri-Jacques. 1999. A history of disability, the death of “defective” babies in American medi- translated by William Sayers. Ann Arbor: University cine and motion pictures since 1915. New York: of Michigan Press. Oxford University Press. Thomson, Rosemarie Garland. 1997. Extraordinary Press, Nancy Ann, and Carol H. Browner. 1995. The bodies: Figuring physical disability in American normalization of prenatal diagnostic screening. culture and literature. New York: Columbia In Conceiving the new world order: The global University Press. CHAPTER 15

Aesthetic Nervousness Ato Quayson

WHAT IS AESTHETIC NERVOUSNESS? short-circuiting of the dominant protocols governing the text—a short-circuit trig- Let me begin formulaically: Aesthetic ner- gered by the representation of disability. vousness is seen when the dominant pro- For the reader, aesthetic nervousness over- tocols of representation within the literary laps social attitudes to disability that them- text are short-circuited in relation to dis- selves often remain unexamined in their ability. The primary level in which it may prejudices and biases. The reader in this be discerned is in the interaction between account is predominantly a nondisabled a disabled and nondisabled character, reader, but the insights about aesthetic ner- where a variety of tensions may be iden- vousness are also pertinent to readers with tified. However, in most texts aesthetic disabilities, since it is the construction of a nervousness is hardly ever limited to this universe of apparent corporeal normativ- primary level, but is augmented by ten- ity both within the literary text and outside sions refracted across other levels of the it whose basis requires examination and text such as the disposition of symbols challenge that is generally at issue in this and motifs, the overall narrative or dra- study. The various dimensions of aesthetic matic perspective, the constitution and nervousness will be dealt with both indi- reversals of plot structure, and so on. The vidually and as parts of larger textual con- final dimension of aesthetic nervousness is figurations in the works of Samuel Beckett, that between the reader and the text. The Toni Morrison, Wole Soyinka, and J. M. reader’s status within a given text is a func- Coetzee. The final chapter, on the history of tion of the several interacting elements disability on Robben Island in South Africa, such as the identification with the vicissi- will be used to refocus attention from the tudes of the life of a particular character, literary-aesthetic domain to that of the or the alignment between the reader and historical intersection between disability, the shifting positions of the narrator, or the colonialism, and apartheid. This will help necessary reformulations of the reader’s us see what extensions might be possible perspective enjoined by the modulations for the concept of aesthetic nervousness of various plot elements and so on. As I beyond the literary-aesthetic field. shall show throughout this study, in works There are two main sources for the where disability plays a prominent role, the notion of aesthetic nervousness that I want reader’s perspective is also affected by the to elaborate here. One is Rosemarie Garland AESTHETIC NERVOUSNESS | 203

Thomson’s highly suggestive concept of the features of real-world encounters between normate, which we have already touched the nondisabled and persons with disabili- on briefly, and the other is drawn from ties. Thomson proposes the notion of the Lennard Davis’s and Mitchell and Snyder’s “normate” to explicate the cluster of atti- reformulations of literary history from a tudes that govern the nondisabled’s per- disability studies perspective. As Thomson ception of themselves and their relations (1997) argues in a stimulating extension of to the various “others” of corporeal norma- some of Erving Goffman’s (1959) insights tivity. As she persuasively shows, there are about stigma, first-time social encounters complex processes by which forms of cor- between the nondisabled and people with poreal diversity acquire cultural meanings disabilities are often short-circuited by the that in their turn undergird a perceived ways in which impairments are interpreted. hierarchy of bodily traits determining the She puts the matter in this way: distribution of privilege, status, and power. In other words, corporeal difference is part In a first encounter with another person, a of a structure of power, and its meanings tremendous amount of information must be are governed by the unmarked regularities organized and interpreted simultaneously: of the normate. However, as the paragraph each participant probes the explicit for the quoted above shows, there are various ele- implicit, determines what is significant for ments of this complex relationship that particular purposes, and prepares a response do not disclose themselves as elements of that is guided by many cues, both subtle and power as such, but rather as forms of anxi- obvious. When one person has a visible dis- ety, dissonance, and disorder. The common ability, however, it almost always dominates impulse toward categorization in interper- and skews the normate’s process of sorting out perceptions and forming a reaction. The sonal encounters is itself part of an ideal of interaction is usually strained because the order that is assumed as implicit in the uni- nondisabled person may feel fear, pity, fasci- verse, making the probing of the explicit for nation, repulsion, or merely surprise, none of the implicit part of the quest for an order which is expressible according to social pro- that is thought to lie elsewhere. It is this, as tocol. Besides the discomforting dissonance we noted in the previous section, that per- between experienced and expressed reac- sistently leads to the idea that the disabled tion, a nondisabled person often does not body is somehow a cipher of metaphysical know how to act toward a disabled person: or divine significance. Yet the impairment how or whether to offer assistance; whether is often taken to be the physical manifes- to acknowledge the disability; what words, tation of the exact opposite of order, thus gestures, or expectations to use or avoid. Perhaps most destructive to the potential forcing a revaluation of that impulse, and for continuing relations is the normate’s fre- indeed, of what it means to be human in quent assumption that a disability cancels a world governed by a radical contingency. out other qualities, reducing the complex The causes of impairment can never be person to a single attribute. fully anticipated or indeed prepared for. (Thomson 1997, 12) Every/body is subject to chance and contingent events. The recognition of this radical To this we should quickly recall Mitchell contingency produces features of a primal and Snyder’s remark concerning the degree scene of extreme anxiety whose roots lie in to which Brueghel’s paintings succeeded barely acknowledged vertiginous fears of in disrupting and variegating the visual loss of control over the body itself (Grosz encounter between bodies in painting. 1996; Wasserman 2001; Lacan 1948, 1949).1 Clearly, disruption and variegation are also The corporeal body, to echo the sonnet 204 | ATO QUAYSON

“Death Be Not Proud” by John Donne, is in this context is not idle. Going back to the victim to “Fate, chance, kings, and desper- Scope poster, it is useful to think of such ate men” and subject to “poison, warre, frames in the light of physical coordinates, and sicknesse” as well. The dissonance and as if thinking of a picture frame. The frames anxiety that cannot be properly articulated within which the disabled are continually via available social protocols then define placed by the normate are ones in which the affective and emotional economy of a variety of concepts of wholeness, beauty, the recognition of contingency. In other and economic competitiveness structure words, the sudden recognition of contin- persons with disability and place them gency is not solely a philosophical one—in at the center of a peculiar conjuncture of fact, it hardly ever is at the moment of the conceptions. social encounter itself—but is also and Thomson’s notion of the relations perhaps primarily an emotional and affec- between the normate and the disabled tive one. The usefulness of the social model derives ultimately from a symbolic interac- of disability is precisely the fact that it now tionism model. To put it simply, a symbolic forces the subliminal cultural assumptions interactionism model of interpretation about the disabled out into the open for operates on the assumption that “people examination, thus holding out the possi- do not respond to the world directly, but bility that the nondisabled may ultimately instead place social meanings on it, orga- be brought to recognize the sources of the nize it, and respond to it on the basis of these constructedness of the normate and the meanings” (Albrecht 2002, 27). The idea of prejudices that flow from it. symbolic interactionism is pertinent to the Since the world is structured with a par- discussion of literary texts that will follow ticular notion of unmarked normativity in because not only do the characters orga- mind, people with disabilities themselves nize their perceptions of one another on the also have to confront some of these ideas basis of given symbolic assumptions, but about contingency in trying to articulate as fictional characters they are themselves their own deeply felt sense of being (Murphy also woven out of a network of symbols and 1990, 96–115). At a practical and material interact through a symbolic relay of signs. level, there are also the problems of adjust- Furthermore, as I shall show incrementally ment to a largely indifferent world. As Wood in different chapters and in a more situ- and Bradley (1978, 149) put it: “On a mate- ated form in the chapter on J.M. Coetzee rial plane the disabled individual is . . . less (chapter 6 [original volume]), symbolic able to adapt to the demands of his envi- interactionism also implies the presence ronment: he has reduced power to insulate of an implied interlocutor with whom the himself from the assaults of an essentially character or indeed real-life person enters hostile milieu. However, the disadvantage into a series of dialogical relationships, he experiences is likely to differ in rela- thus helping to shape a horizon of expec- tion to the nature of the society in which tations against which versions of the self he finds himself.” Contradictory emotions are rehearsed. Following Thomson’s lead, arise precisely because the disabled are the first aspect of aesthetic nervousness continually located within multiple and that I want to specify is that it is triggered contradictory frames of significance within by the implicit disruption of the frames which they, on the one hand, are materially within which the disabled are located as disadvantaged, and, on the other, have to subjects of symbolic notions of wholeness cope with the culturally regulated gaze of and normativity. Disability returns the aes- the normate. My use of the word “frames” thetic domain to an active ethical core that AESTHETIC NERVOUSNESS | 205 serves to disrupt the surface of representa- character that help to define the essential tion. Read from a perspective of disability structure of the novel in the eighteenth studies, this active ethical core becomes and nineteenth centuries. The realist nov- manifest because the disability represen- els of the two centuries were based on the tation is seen as having a direct effect on construction of the “average” citizen. This social views of people with disability in a average citizen was nonheroic and middle way that representations of other literary class. But the average citizen was also linked details, tropes, and motifs do not offer. In to the concept of “virtue.” As Davis notes, other words, the representation of disabil- “Virtue implied that there was a specific ity has an efficaciousness that ultimately and knowable moral path and stance that transcends the literary domain and refuses a character could and should take. In other to be assimilated to it. This does not mean words, a normative set of behaviours was that disability in literature can be read demanded of characters in novels” (94). solely via an instrumentalist dimension of Entangled with these dual notions of the interpretation; any intervention that might average citizen and of virtue were implicit be adduced for it is not inserted into an ideas of wholeness, with no major protago- inert and stable disability “reality” that lies nist in the entire period marked by a physi- out there. For, as we have noted, disabil- cal disability. Undergirding the novel’s rise ity in the real world already incites inter- then is a binary opposition between nor- pretation in and of itself. Nevertheless, an mal/abnormal, with this binary generating instrumentalist dimension cannot be easily a series of plots. Essentially, the key element suspended either. To put the matter some- of such plots is the initial destabilization of what formulaically: the representation of the character’s social circumstances, fol- disability oscillates uneasily between the lowed by their efforts to rectify their loss aesthetic and the ethical domains, in such and return, perhaps chastened, to their a way as to force a reading of the aesthetic former position. Crucially, however, as the fields in which the disabled are represented nineteenth century progresses the nega- as always having an ethical dimension that tive or immoral gets somatized and rep- cannot be easily subsumed under the aes- resented as a disability (95–98). One of the thetic structure. Ultimately, aesthetic ner- conclusions Davis draws from his discus- vousness has to be seen as coextensive with sion is that plot functions in the eighteenth the nervousness regarding the disabled in and nineteenth centuries “by temporar- the real world. The embarrassment, fear, ily deforming or disabling the fantasy of and confusion that attend the disabled in nation, social class, and gender behaviors their everyday reality is translated in litera- that are constructed norms” (97). ture and the aesthetic field into a series of In taking forward Davis’s argument, structural devices that betray themselves there are a number of qualifications I want when the disability representation is seen to register. Distinctive in his account is the predominantly from the perspective of the link he persuasively establishes between disabled rather than from the normative nation, the average citizen, virtue, and spe- position of the nondisabled. cific forms of novelistic emplotment. That In his essay entitled “Who Put the The in cannot be questioned. However, it is not The Novel?” Lennard Davis (2002) explores entirely accurate that the binary of nor- the links that have largely been taken for mal/abnormal starts with the eighteenth- granted in literary history between the and nineteenth-century novels or indeed novel form, an English nation, and the vari- that they inaugurate the plots of the defor- ous destabilizations of the social status of mation of social status. On the contrary, 206 | ATO QUAYSON

as can be shown from an examination of section of a variety of vectors including folktales from all over the world, the plot of gender, ethnicity, sexuality, urban identity, physical and/or social deformation is actu- and particularly disability, these providing ally one of the commonest starting points a variety of constitutive points for the proof most story plots (see Propp 1958; Zipes cess of emplotment. Indeed, Davis himself 1979), so much so that it is almost as if the notes in another context the reiteration of deformation of physical and/or social sta- disability in the works of Conrad. A simi- tus becomes the universal starting point lar view can be expressed of the work of for the generation of narrative emplot- Joyce (Ulysses, Finnegans Wake), Virginia ment as such. As Davis points out, in agree- Woolf (Mrs. Dalloway), Thomas Mann (The ment with established scholarship on the Magic Mountain), and T. S. Eliot’s “The novel, the crucial term that is introduced Waste Land,” among others. I choose the in the eighteenth and nineteenth century phrase “constitutive points” as opposed is “realism,” the notion that somehow the to “starting points” to signal the fact that novelistic form refracts a verisimilar world the social deformation does not always outside of its framework. But realism is show itself at the beginning of the plot. itself a cultural construction, since for the In much of the work we will look at, from Greeks their myths were also a form of real- Beckett and Soyinka through Morrison and ism. What needs to be taken from Davis’s Coetzee, there are various articulations of account is the effect that the collocation of a sense of social deformation. However, the social imaginary of the nation and the the deformation is not always necessarily production of a specific form of bodily and revealed as inaugural or indeed placed at sexual realism had on the way the novel was the starting point of the action or narrative taken to represent reality. In each instance, as such. It is often revealed progressively the assumed representation of reality or in fragments in the minds of the char- depended upon unacknowledged views acters, or even as flashbacks that serve to of social order deriving not just from an reorder the salience of events within the understanding of class relations but from plot. The varied disclosures of social defor- an implicit hierarchization of corporeal mation are also ultimately linked to the differences. Even though Davis is not the status of disability as a trigger or mecha- only one to have noted the peculiar place nism for such plot review and disclosure. of the disabled in the eighteenth- and nine- In that sense, the range of literary texts we teenth-century novel (see Holmes 2000, for shall be exploring is not undergirded exclu- example), it is in clarifying the status of the sively by the binary opposition of normal/ disabled body as structurally constitutive abnormal, but by the dialectical interplay to the maintenance of the novel’s realism between unacknowledged social assump- that he makes a distinctive contribution to tions and the reminders of contingency literary history. as reflected in the body of the person with However, in trying to extend the sig- disability. nificance of the constitutive function of The notion of dialectical interplay is deformation from the novel to other liter- crucial to my model of interpretation, ary forms, we also have to note that “defor- because one of the points I will repeat mation” can no longer be limited solely throughout the study is that a dialectical to that of social or class position, as Davis interplay can be shown to affect all levels suggests in his discussion. From the nov- of the literary text, from the perspectival els of the early twentieth century onward, modulations of the narrator (whether the deformations emerge from the inter- first or third person) and the characters AESTHETIC NERVOUSNESS | 207 to the temporal sequencing and ordering Davis’s but extends his insights to accom- of leitmotifs and symbolic discourses that modate a more variegated methodology come together to structure the plotlines. for understanding the status of disability Even though, as Davis rightly notes, the in literary writing. plots of social deformation dominated The analogy between the inaugural sta- the eighteenth- and nineteenth-century tus of the sublime and of disability serves novel, this view cannot be limited solely to open up a number of ways in which the to novelistic discourse. Following the structurally constitutive function of dis- point I made a moment ago about the ability to literary form might be explored. near universality of such plots, I want to In the Critique of Judgment, Kant follows suggest that we consider the plot of social his discussion of the beautiful and its deformation as it is tied to some form of relation to purposelessness or autonomy physical or mental deformation to be with the discussion of the sublime and its relevant for the discussion of all literary inherent link to the principle of disorder. texts. This is a potentially controversial For Kant, “Beauty is an object’s form of point, but given the ubiquity of the role of purposiveness insofar as it is perceived in the disabled in texts from a range of cul- the object without the presentation of pur- tures and periods it is difficult to shake pose” (1987, 31), the idea here being that off the view that disability is a marker only the lack of a determinate or instru- of the aesthetic field as such. Disability mental end allows the subjective feeling teases us out of thought, to echo Keats, of beauty to occur. The sublime, on the not because it resists representation, but other hand, is an aspect of understanding because in being represented it automati- in confrontation with something ineffable cally restores an ethical core to the liter- that appears to resist delimitation or orga- ary-aesthetic domain while also invoking nization. It exposes the struggle between the boundary between the real and the Imagination and Reason: “[What happens metaphysical or otherworldly. Along with is that] our imagination strives to progress the category of the sublime, it inaugurates toward infinity, while our reason demands and constitutes the aesthetic field as such. absolute totality as a real idea, and so [the And like the sublime, disability elicits lan- imagination,] our power of estimating the guage and narrativity even while resisting magnitude of things in the world of sense, or frustrating complete comprehension is inadequate to that idea. Yet this inad- and representation and placing itself on equacy itself is the arousal in us of the the boundary between the real and the feeling that we have within us a supersen- metaphysical. When I state that disability sible power” (108; translator’s brackets). “inaugurates” the aesthetic domain, it is Even while generative of representation, not to privilege the “firstness” or “prima- the sublime transcends the imaginative riness” of first-time encounters between capacity to represent it. As Crockett (2001, the disabled and nondisabled characters, 75) notes in glossing the nature of this even though this has been implied in my struggle, “the sublime is contra-purposive, reliance on Thomson. Rather, I intend the because it conflicts with one’s purposeful term “inaugurate” in the sense of the set- ability to represent it.” The implicit dichot- ting of the contours of the interlocking omy in the Critique of Judgment between vectors of representation, particularly in the sublime and the beautiful has been narrative and drama, which are the two explored in different directions by scholars literary forms that will feature mainly in the intervening three hundred and fifty in this study. My position overlaps with years since its formulation, but what has 208 | ATO QUAYSON

generally been agreed upon is the idea of metaphysical transpositions, and socially the resistance of the sublime to complete constituted modalities of [non]response, representation, even if this resistance is and so forth) and a set of material condi- then incorporated into a motivation for tions (such as impairment, accessibility and representation as such.2 What the repre- mobility difficulties, and economic con- sentation of disability suggests, which both siderations). It is not to be discounted also overlaps and distinguishes itself from the that many impairments also involve living sublime as a conceptual category, is that with different levels of pain, such that the even while also producing a contradictory categories of pain and disability not infre- semiotics of inarticulacy and articulation, quently imply each other. It is disability’s it is quite directly and specifically tied to rapid oscillation between a pure process forms of social hierarchization. For dis- of abstraction and a set of material condi- ability, the semiotics of articulation/inar- tions that ensures that the ethical core of its ticulation that may be perceived within the representation is never allowed to be com- literary domain reflect difficulties regard- pletely assimilated to the literary-aesthetic ing its salience for the nondisabled world. domain as such. Disability serves then to This, as can be gleaned from the Whyte and close the gap between representation and Ingstad collection already referred to, cuts ethics, making visible the aesthetic field’s across cultures. Thus even if the ambiva- relationship to the social situation of per- lent status of disability for literary repre- sons with disability in the real world. This sentation is likened to that of the sublime, does not necessarily mean that we must it must always be remembered that, unlike always read the literary representation in a the effects of the sublime on literary dis- directly instrumental way. As noted earlier, course, disability’s ambivalence manifests the intervention of the literary represen- itself within the real world in socially meditation is an intervention into a world that ated forms of closure. We might then say already situates disability within insistent that disability is an analogue of the sublime framings and interpretations. The literary in literary-aesthetic representation (ineffa- domain rather helps us to understand the bility/articulation) yet engenders attempts complex processes of such framings and the at social hierarchization and closure within ethical implications that derive from such the real world. processes. Disability might also be productively Finally, it is to Mitchell and Snyder’s thought of as being on a continuum with the book Narrative Prosthesis (2003) that I wish sublime in terms of its oscillation between to turn in elaborating what I mean by aes- a pure abstraction and a set of material cir- thetic nervousness. Mitchell and Snyder cumstances and conditions. Considered follow David Wills (1995) in trying to define in this way, we can think of the sublime as literary discourse as essentially performing occupying one end of the spectrum (being a certain prosthetic functions. Among these pure abstraction despite generating certain prosthetic functions are the obvious ones psychological effects of judgment and the of using the disabled as a signal of moral impulse to represent it in material forms) disorder such that the nondisabled may and disability occupying the other end and glean an ethical value from their encoun- being defined by a different kind of oscilla- ter with persons with disabilities. Since tion between the abstract and the material. Mitchell and Snyder are also keen to situ- For unlike the sublime, disability oscil- ate narrative prosthesis as having signifi- lates between a pure process of abstrac- cance for the lived experience of disability, tion (via a series of discursive framings, they also assign an inherently pragmatic AESTHETIC NERVOUSNESS | 209 orientation to what they describe as textual itself and is to be determined by setting the prosthesis: “Whereas an actual prosthe- literary representations of disability against sis is always somewhat discomforting, a socio-cultural understandings. While textual prosthesis alleviates discomfort by agreeing with them that the ultimate test of removing the unsightly from view. . . . [T]he the salience of a disability representation erasure of disability via a “quick fix” of an are the various social and cultural contexts impaired physicality or intellect removes within which they might be thought to have an audience’s need for concern or continu- an effect, I want to focus my attention on ing vigilance” (8). They make these par- the devices of aesthetic collapse that occur ticular remarks in the context of films and within the literary frameworks themselves. narratives in which persons with disabili- Also, I would like to disagree with them on ties somehow manage to overcome their their view of the programmatic identity difficulties and live a happy life within the assigned to the disabled, because, as I will realm of art. In such instances, the repre- try to show by reading the disabled char- sentation of disability serves a pragmatic/ acter within the wider discursive structure cathartic function for the audience and the of relations among different levels of the reader. More significantly, however, they text, we find that even if programmatic also note that even while disability recurs roles were originally assigned, these roles in various works as a potent force to chal- can shift quite suddenly, thus leading to lenge cultural ideas about the normal and the “stumbling” they speak of. I choose to the whole, it also “operates as the textual elaborate the textual “stumbling” in terms obstacle that causes the literary operation of of aesthetic nervousness. open-endedness to close down or stumble” When it comes to their specific style of (50). reading, Mitchell and Snyder are inspired This last observation brings their discus- by Wills to elaborate the following provision of narrative prosthesis very close to sional typology: my own notion of aesthetic nervousness, except that they proceed to expound upon Our notion of narrative prosthesis evolves this blocking function in what can only be out of this specific recognition: a narrative nonaesthetic terms. This is how they put it: issues to resolve or correct—to “prostheticize” in David Wills’s sense of the term—a deviance marked as improper to a social This “closing down” of an otherwise per- context. A simple schematic of narrative meable and dynamic narrative form dem- structure might run thus: first, a deviance or onstrates the historical conundrum of marked difference is exposed to the reader; disability. [Various disabled characters from second, a narrative consolidates the need for literature] provide powerful counterpoints to its own existence by calling for an explana- their respective cultures’ normalizing Truths tion of the deviation’s origins and formative about the construction of deviance in partic- consequences; third, the deviance is brought ular, and the fixity of knowledge systems in from the periphery of concerns to the center general. Yet each of these characterizations of the story to come; and fourth, the remain- also evidences that the artifice of disability der of the story rehabilitates or fixes the devi- binds disabled characters to a programmatic ance in some manner. The fourth step of the (even deterministic) identity. repair of the deviance may involve an oblit- (Mitchell and Snyder 2003, 50) eration of the difference through a “cure,” the rescue of the despised object from social Thus Mitchell and Snyder’s idea of the censure, the extermination of the deviant shutting down or stumbling of the literary as a purification of the social body, or the operation is extrinsic to the literary field revaluation of an alternative mode of being. 210 | ATO QUAYSON

. . . Narratives turn signs of cultural deviance features with the nondisabled, thus trans- into textually marked bodies. ferring some of their significations to the (53–54) nondisabled and vice versa. Furthermore, I want to suggest that when the various ref- Again, their method is defined by an erences to disability and to disability repre- assumption of narrative pragmatism or sentation are seen within the broad range instrumentalism; that is to say, the literary of an individual writer’s work, it helps to text aims solely to resolve or correct a devi- foreground hitherto unacknowledged ance that is thought to be improper to a dimensions of their writing and, in cer- social context. Unlike them, I will be trying tain cases, this can even lead to a complete to show that this prostheticizing function is revaluation of critical emphasis. Consider bound to fail, not because of the difficulties in this regard Shakespeare’s Richard III, for in erasing the effects of disability in the real instance, which is of course very widely world, but because the aesthetic domain discussed in disability studies. However, in itself is short-circuited upon the encoun- Shakespeare disability also acts as a meta- ter with disability. As mentioned earlier, phor to mark anomalous social states such disability joins the sublime as marking the as those involving half-brothers and bas- constitutive points of aesthetic representa- tards. Indeed, there is a studied pattern in tion. Aesthetic nervousness is what ensues Shakespeare where bastards are considered and can be discerned in the suspension, to be internally deformed and villainous, collapse, or general short-circuiting of the their bastardy being directly correlated to a hitherto dominant protocols of represen- presumed moral deficit. And so we have the tation that may have governed the text. To elemental and almost homicidal competi- my mind, in this paragraph Mitchell and tion between half-brothers that reappears Snyder are attempting to define processes in conflicts between Robert Falconbridge of representation that may occur sepa- and his bastard brother Philip in King John, rately (i.e., across individual and distin- between Don John and Don Pedro in Much guishable texts) as well as serialized within Ado About Nothing, between Edmund and a particular text. One of my central points Edgar in King Lear, and between Richard is precisely the fact that even when the dis- III and Edward in Richard III. This last play abled character appears to be represented is of course grounded on the resonance of programmatically, the restless dialectic of jealousy and brotherhood, as well as on the representation may unmoor her from the Machiavellianism of a deformed protago- programmatic location and place her else- nist. There the disability is placed at the where as the dominant aesthetic protocols foreground of the action from the begin- governing the representation are short-cir- ning and brings together various threads cuited. that serve to focalize the question of To establish the central parameters of whether Richard’s deformity is an insignia aesthetic nervousness, then, a number of or indeed the cause of his villainy.3 Thus of things have to be kept in mind. First is to understand Richard III properly, we that in literature, the disabled are fictional would have to attend equally to his disabil- characters created out of language. This ity and his bastardy in the wider scheme of point is not made in order to sidestep the Shakespeare’s work. Once this is done, we responsibility to acknowledge language’s find that our interpretation of the character social efficaciousness. Rather, I want to has to be more complicated than just rec- stress that as linguistic creations, the dis- ognizing his villainy, which of course is the abled in literature may trade a series of dominant invitation proffered by the play. AESTHETIC NERVOUSNESS | 211

The choice of Beckett, Soyinka, Morrison, that we might get from just focusing on and Coetzee is partly meant to serve this what the disabled women in her texts do or function of establishing the interrelations do not do. With Beckett, on the other hand, between disability and other vectors of rep- we find that as he proliferates devices by resentation among the wide oeuvre of each which to undermine the stability of onto- writer. However, comparisons and con- logical categories, he ends up also under- trasts within the work of individual writers mining the means by which the many or indeed between them will not be made disabilities that he frequently represents in chronologically or with the suggestion of his texts may be interpreted. As can be seen evolution and change in the representation from the vast scholarship on Beckett, it is of disability. Rather, I shall be focusing on very rare that his impaired characters are thematic clusterings and on making links read as disabled, even though their disabili- between apparently unrelated characters ties are blatant and should be impossible to and scenes across the various texts to show ignore. Rather, the characters are routinely how the parameters of aesthetic nervous- assimilated by critics to philosophical cat- ness operate within individual texts as well egories and read off as such. This is due to as across various representations. Also, the the peculiarly self-undermining structures writers will be used as nodal points from of his works, both the novels and the plays. which to make connections to the work of Beckett is also unusual among the writ- other writers. Thus each chapter, though ers in this study in that he seems to fulfill focusing predominantly on the individual a central feature of what Sandblom (1997) writer in question, will also provide a gate- describes as the inextricable link between way for connecting these writers to vari- disease and creativity. Pertinent to the dis- ous others that have had something to say cussion of Beckett’s work is that he himself about disability. Each chapter is conceived suffered endless illnesses ranging from an of as comparative both in terms of the rela- arrhythmic heartbeat and night sweats to tions among the works of the main writers cysts and abscesses on his fingers, the palm in the study and between these and the of his left hand, the top of his palate, his many other representations of disability scrotum and, most painfully later in life, his that will be touched upon over the course left lung. Often these cysts and abscesses of the discussions. had to be lanced or operated upon, lead- I want to emphasize my view that to ing to great and regular discomfort. It is not properly establish the contours of aes- for nothing then that the deteriorating and thetic nervousness, we have to understand impaired body held a special fascination disability’s resonance on a multiplicity of for him. He used the disabled, maimed, levels simultaneously; disability acts as a and decaying body as a multiple referent threshold or focal point from which vari- for a variety of ideas that seem to have been ous vectors of the text may be examined. at least partially triggered by encounters Thus, as we shall see with respect to Toni with others and his own personal experi- Morrison, though her physically disabled ence of pain and temporary disability. This female characters seem to be strong and is something that has passed largely unre- empowered, there is often a contradiction marked in the critical writings on Beckett, between the levels of narratorial perspec- and I propose to center on it to discuss the tive, symbolic implication, and the deter- peculiar status he assigns to disability and minants of the interactions among the pain in works such as Endgame and Molloy, characters themselves that ends up unset- both of which should to all intents and pur- tling the unquestioned sense of strength poses be “painfull” but are not. 212 | ATO QUAYSON

In a way, Wole Soyinka’s work is quite resentation. This is so whether the charac- different from that of the other three in the ter is represented in the first person, as we study. His writing focuses more securely see in Beckett’s Molloy, or in the third per- on a set of ritual dispositions drawn from a son, as we see in Coetzee’s Life and Times traditional Yoruba and African cultural sen- of Michael K. The chapter on Coetzee will sibility. This sensibility is then combined be used to focus on the difference between with an intense political consciousness, speech and the elective silence of autistic such that each of his plays may be read characters and on the ways in which these as partial allegories of the Nigerian and raise peculiar problems for the status of the African postcolonial condition. The combi- skeptical interlocutor in literary writing. nation of the ritualistic with the political is Autism features in that chapter not just as something for which Soyinka has become a dimension of disability but as a theoreti- notably famous. What I shall show with cal paradigm for raising questions about regard to his work are the ways in which narrativity as such. However, it is when we disability acts as a marker of both ritual come to the chapter on Robben Island that and the political, but in ways that interrupt the structure of skeptical interlocution will the two domains and force us to rethink the be allowed to take life (literally and meta- conceptual movement between the two. phorically, as will be demonstrated). The The final chapter, on Robben Island, will structure of interlocution with regard to be used to bring to conclusion a particu- the history of Robben Island will help to lar vector of interpretation that will have shed light on how aesthetic nervousness been suggested in the chapter on Beckett, might be extended from discussions of the given further elaboration in the discus- literary-aesthetic domain to an analysis of sions of Morrison and Soyinka, and picked historical personages and real-life events. up and intensified in the one on Coetzee. I should like to address a point of poten- I shall discuss this in various guises, but tial confusion that may have arisen in this they will all come together under the con- introduction. So far I have proceeded as ceptual rubric of the structure of skeptical though the literary representation of dis- interlocution. In essence, the idea derives abled persons and the aesthetic nervous- from Bakhtin’s proposition of the inherent ness that attends such representation can dialogism of speech acts, that anticipation be taken as an analogue to the real-life of an interlocutor even when the context of responses toward people with disabilities communication does not seem to explic- by society at large. This fusion of levels is itly denominate one. The choice of the only partially intended. For, as I noted ear- plays of Beckett and Soyinka allows a cer- lier, there is no doubt that literary repre- tain salience to the idea of the (skeptical) sentation of disability somewhat subtends interlocutor, since as dramatic texts they real-life treatment of disabled people in a incorporate dialogue as an explicit feature variety of ways. However, I also want to note of dialogism. But what I have in mind in that the aesthetic nervousness of the liter- relation to the structure of skeptical inter- ary-aesthetic domain cannot by any means locution is a little bit more complicated be said to be equivalent to the responses than can be captured solely in dramatic to disabled persons in reality. To say that texts. Rather, I mean to suggest that there is the literary model provides an analogue to always an anticipation of doubt within the reality does not mean that it is the same as perceptual and imagined horizon of the that reality. The epistemological effect of disabled character in literature, and that representation is quite different from the this doubt is incorporated into their rep- emotional effects of misunderstanding AESTHETIC NERVOUSNESS | 213 and stereotyping in the real world. Thus starting point. The focus on disability is the first may be used to illuminate aspects thus meant to achieve two related effects: of the second but must not be taken to have One is to make more prominent the active exhausted or replaced it. Our commitment ethical core that is necessarily related must ultimately be to changing the world to disability and that hopefully helps to and not merely reading and commenting restore a fully ethical reading to literature. on it. The other is that from using disability to It is important also to state at the outset open up the possibility of close reading, I that central to the ways in which I propose hope to encourage us to lift our eyes from to establish the parameters of aesthetic the reading of literature to attend more nervousness is the device of close read- closely to the implications of the social ing. This seems to me necessary in order universe around us. to be able to do full justice to the subtle cues by which the literary text “stumbles” NOTES (to return to Mitchell and Snyder) and by which the literary representation reveals 1. On first considering this point about the vertiginous fears of the nondisabled regarding dis- the parameters of aesthetic nervousness. ability I focused primarily on Lacan’s discussion Apart from Morrison, none of the writ- of the mirror phase and his exploration of the ers in this study has previously been read imagos of dismemberment that come up for from the perspective of disability studies. people under psychic stress. From this, I elabo- Part of my task will involve the rather bor- rated what I termed the primal scene of the encounter between the disabled and the non- ing process of taxonomizing the disability disabled, which, as I argued, was riven by con- representations we find in the works in stitutive emotional ambiguities. Even though I question. This will be done to provide a still find that perspective persuasive, in the cur- map of the varied uses to which the writ- rent discussion I want to leave the contours of ers put the disabled in order to allow us the psychoanalytic interpretation to one side and instead invoke the work of philosophers and to discern patterns that are elaborated disability writers who have thought and written upon or repeated across the works. It is a about this matter. For my earlier argument, see happy coincidence that all four writers are “Disability and Contingency” in Calibrations: Nobel Prize winners and thus likely to be Reading for the Social (2003). At any rate, though widely taken up in literary curricula. My I didn’t know it then, the argument about Lacan and the primal scene of disability had already choice of them was not informed by this been quite persuasively put by Lennard Davis fact, however (in fact, Coetzee was part (1995, 140–142) and so will not be reprised here. of my study long before his Nobel Prize). 2. For the discussions of the sublime and the beau- I settle on them because of my years of tiful that I have drawn upon, see Allison (2001), teaching and thinking about their work in Crockett (2001), Ashfield and de Bolla (1996), Caruth (1988), and de Man (1990). The issue of different contexts and the fact that they whether the sublime triggers an ethical recogni- enable us to see a full range of discourses tion or not is a contentious one and not yet settled regarding disability and other details of on either side, but Ashfield and de Bolla provide literary representation. I wish to see stu- a good account of how the ethical debates on the dents and other readers being able to pay sublime have unfolded in British literary history from the eighteenth century onward. close attention to all the subtle details of 3. For particularly insightful readings of Richard III literary representation well beyond the from a disability studies perspective, see Mitchell focus on disability, even if that is their and Snyder (2000, 95–118) and Lennard Davis. CHAPTER 16

The Social Model of Disability Tom Shakespeare

INTRODUCTION social model of disability which has provided the structural analysis of disabled In many countries of the world, disabled people’s social exclusion (Hasler, 1993). people and their allies have organised The social model emerged from the in- over the last three decades to challenge tellectual and political arguments of the the historical oppression and exclusion of Union of Physically Impaired Against Seg- disabled people (Driedger, 1989; Camp- regation (UPIAS). This network had been bell and Oliver, 1996; Charlton, 1998). Key formed after Paul Hunt, a former resident of to these struggles has been the challenge the Lee Court Cheshire Home, wrote to The to over-medicalized and individualist ac- Guardian newspaper in 1971, proposing the counts of disability. While the problems of creation of a consumer group of disabled disabled people have been explained his- residents of institutions. In forming the torically in terms of divine punishment, organization and developing its ideology, karma or moral failing, and post-Enlight- Hunt worked closely with Vic Finkelstein, a enment in terms of biological deficit, the South African psychologist, who had come disability movement has focused attention to Britain in 1968 after being expelled for his onto social oppression, cultural discourse, anti-apartheid activities. UPIAS was a small, and environmental barriers. hardcore group of disabled people, inspired The global politics of disability rights by Marxism, who rejected the liberal and and deinstitutionalisation has launched a reformist campaigns of more mainstream family of social explanations of disability. disability organisations such as the Disable- In North America, these have usually been ment Income Group and the Disability Al- framed using the terminology of minority liance. According to their policy statement groups and civil rights (Hahn, 1988). In the (adopted December 1974), the aim of UPIAS Nordic countries, the dominant concep- was to replace segregated facilities with op- tualisation has been the relational model portunities for people with impairments to (Gustavsson et al., 2005). In many coun- participate fully in society, to live indepen- tries, the idea of normalisation and social dently, to undertake productive work and role valorisation has been inspirational, to have full control over their own lives. The particularly amongst those working with policy statement defined disabled people people with learning difficulties (Wolfen- as an oppressed group and highlighted sburger, 1972). In Britain, it has been the barriers: THE SOCIAL MODEL OF DISABILITY | 215

We find ourselves isolated and excluded by that year, worked hard to have their defi- such things as flights of steps, inadequate nitions of disability adopted on the global public and personal transport, unsuitable stage (Driedger, 1989). At the same time, housing, rigid work routines in factories and Vic Finkelstein, John Swain and others were offices, and a lack of up-to-date aids and working with the Open University to create equipment. an academic course which would promote (UPIAS Aims paragraph 1) and develop disability politics (Finkelstein, 1998). Joining the team was Mike Oliver, Even in Britain, the social model of dis- who quickly adopted the structural ap- ability was not the only political ideology proach to understanding disability, and on offer to the first generation of activists was to coin the term “social model of dis- (Campbell and Oliver, 1996). Other disability” in 1983. abled-led activist groups had emerged, including the Liberation Network of People with Disabilities. Their draft Liberation WHAT IS THE SOCIAL MODEL Policy, published in 1981, argued that while OF DISABILITY? the basis of social divisions in society was While the first UPIAS Statement of Aims economic, these divisions were sustained had talked of social problems as an added by psychological beliefs in inherent su- burden faced by people with impairment, periority or inferiority. Crucially, the Lib- the Fundamental Principles of Disability eration Network argued that people with discussion document, recording their dis- disabilities, unlike other groups, suffered agreements with the reformist Disability inherent problems because of their dis- Alliance, went further: abilities. Their strategy for liberation included: developing connections with other In our view, it is society which disables physi- disabled people and creating an inclusive cally impaired people. Disability is some- disability community for mutual support; thing imposed on top of our impairments, exploring social conditioning and positive by the way we are unnecessarily isolated and self-awareness; the abolition of all segrega- excluded from full participation in society. tion; seeking control over media represen- Disabled people are therefore an oppressed tation; working out a just economic policy; group in society. encouraging the formation of groups of (UPIAS, 1975) people with disabilities. However, the organization which domi- Here and in the later development of UPIAS nated and set the tone for the subsequent thinking are the key elements of the social development of the British disability move- model: the distinction between disability ment, and of disability studies in Britain, (social exclusion) and impairment (physical was UPIAS. Where the Liberation Net- limitation) and the claim that disabled peo- work was dialogic, inclusive and feminist, ple are an oppressed group. Disability is now UPIAS was hard-line, male-dominated, defined, not in functional terms, but as and determined. The British Council of Or- ganisations of Disabled People, set up as the disadvantage or restriction of activity caused by a contemporary social organisa- a coalition of disabled-led groups in 1981, tion which takes little or no account of adopted the UPIAS approach to disability. people who have physical impairments and Vic Finkelstein and the other BCODP del- thus excludes them from participation in the egates to the first Disabled People’s Inter- mainstream of social activities. national World Congress in Singapore later (UPIAS, 1975) 216 | TOM SHAKESPEARE

This redefinition of disability itself is what model approaches are progressive, medi- sets the British social model apart from cal model approaches are reactionary. all other socio-political approaches to 3. Disabled people are distinguished disability, and what paradoxically gives from non-disabled people. Disabled peo- the social model both its strengths and its ple are an oppressed group, and often non- weaknesses. disabled people and organisations—such Key to social model thinking is a series as professionals and charities—are the of dichotomies: causes or contributors to that oppression. Civil rights, rather than charity or pity, are 1. Impairment is distinguished from the way to solve the disability problem. disability. The former is individual and Organisations and services controlled and private, the latter is structural and public. run by disabled people provide the most While doctors and professions allied to appropriate solutions. Research account- medicine seek to remedy impairment, the able to, and preferably done by, disabled real priority is to accept impairment and to people offers the best insights. remove disability. Here there is an analogy For more than ten years, a debate has with feminism, and the distinction between raged in Britain about the value and appli- biological sex (male and female) and social cability of the social model (Morris, 1991; gender (masculine and feminine) (Oakley, Crow, 1992; French, 1993; Williams, 1999; 1972). Like gender, disability is a culturally Shakespeare and Watson, 2002). In response and historically specific phenomenon, not to critiques, academics and activists main- a universal and unchanging essence. tain that the social model has been mis- 2. The social model is distinguished understood, misapplied, or even wrongly from the medical or individual model. viewed as a social theory. Many leading ad- Whereas the former defines disability as vocates of the social model approach main- a social creation—a relationship between tain that the essential insights developed by people with impairment and a disabling so- UPIAS in the 1970s still remain accurate and ciety—the latter defines disability in terms valid three decades later. of individual deficit. Mike Oliver writes:

Models are ways of translating ideas into STRENGTHS OF THE SOCIAL MODEL practice and the idea underpinning the in- As demonstrated internationally, disability dividual model was that of personal tragedy, while the idea underpinning the social mod- activism and civil rights are possible with- el was that of externally imposed restriction. out adopting social model ideology. Yet the (Oliver, 2004, 19) British social model is arguably the most powerful form which social approaches Medical model thinking is enshrined in to disability have taken. The social model the liberal term “people with disabilities,” is simple, memorable, and effective, each and in approaches that seek to count the of which is a key requirement of a political numbers of people with impairment, or to slogan or ideology. The benefits of the so- reduce the complex problems of disabled cial model have been shown in three main people to issues of medical prevention, areas. cure or rehabilitation. Social model think- First, the social model, called “the big ing mandates barrier removal, anti-dis- idea” of the British disability movement crimination legislation, independent living (Hasler, 1993), has been effective politi- and other responses to social oppression. cally in building the social movement of From a disability rights perspective, social disabled people. It is easily explained and THE SOCIAL MODEL OF DISABILITY | 217 understood, and it generates a clear agenda individual, to the barriers and attitudes for social change. The social model offers a which disable her. It is not the disabled per- straightforward way of distinguishing allies son who is to blame, but society. She does from enemies. At its most basic, this reduc- not have to change, society does. Rather es to the terminology people use: “disabled than feeling self-pity, she can feel anger people” signals a social model approach, and pride. whereas “people with disabilities” signals a mainstream approach. WEAKNESSES OF THE SOCIAL Second, by identifying social barriers MODEL to be removed, the social model has been effective instrumentally in the liberation The simplicity which is the hallmark of the of disabled people. Michael Oliver argues social model is also its fatal flaw. The social that the social model is a “practical tool, model’s benefits as a slogan and political not a theory, an idea or a concept” (2004, ideology are its drawbacks as an academic 30). The social model demonstrates that account of disability. Another problem is the problems disabled people face are the its authorship by a small group of activists, result of social oppression and exclusion, the majority of whom had spinal injury not their individual deficits. This places the or other physical impairments and were moral responsibility on society to remove white heterosexual men. Arguably, had the burdens which have been imposed, UPIAS included people with learning dif- and to enable disabled people to partici- ficulties, mental health problems, or with pate. In Britain, campaigners used the so- more complex physical impairments, or cial model philosophy to name the various more representative of different experi- forms of discrimination which disabled ences, it could not have produced such a people (Barnes, 1991), and used this evi- narrow understanding of disability. dence as the argument by which to achieve Among the weaknesses of the social the 1995 Disability Discrimination Act. In model are: the subsequent decade, services, buildings and public transport have been required to 1. The neglect of impairment as an im- be accessible to disabled people, and most portant aspect of many disabled people’s statutory and voluntary organizations have lives. Feminists Jenny Morris (1991), Sally adopted the social model approach. French (1993), and Liz Crow (1992) were pi- Third, the social model has been effec- oneers in this criticism of the social model tive psychologically in improving the self- neglect of individual experience of impair- esteem of disabled people and building a ment: positive sense of collective identity. In traditional accounts of disability, people with As individuals, most of us simply cannot impairments feel that they are at fault. Lan- pretend with any conviction that our impair- guage such as “invalid” reinforce a sense of ments are irrelevant because they influence every aspect of our lives. We must find a way personal deficit and failure. The focus is to integrate them into our whole experience on the individual, and on her limitations and identity for the sake of our physical and of body and brain. Lack of self-esteem emotional well-being, and, subsequently, for and self-confidence is a major obstacle to our capacity to work against Disability. disabled people participating in society. (Crow, 1992, 7) The social model has the power to change the perception of disabled people. The The social model so strongly disowns in- problem of disability is relocated from the dividual and medical approaches, that it 218 | TOM SHAKESPEARE

risks implying that impairment is not a One curious consequence of the ingenious problem. Whereas other socio-political reformulation is that only people with accounts of disability have developed the impairment who face oppression can be important insight that people with impair- called disabled people. This relates to an- ments are disabled by society as well as other problem: by their bodies, the social model suggests 2. The social model assumes what it that people are disabled by society not by needs to prove: that disabled people are their bodies. Rather than simply oppos- oppressed. The sex/gender distinction de- ing medicalization, it can be interpreted as fines gender as a social dimension, not as rejecting medical prevention, rehabilita- oppression. Feminists claimed that gender tion or cure of impairment, even if this is relations involved oppression, but did not not what either UPIAS, Finkelstein, Oliver, define gender relations as oppression. How- or Barnes intended. For individuals with ever, the social model defines disability as static impairments, which do not degen- oppression. In other words, the question is erate or cause medical complications, it not whether disabled people are oppressed may be possible to regard disability as en- in a particular situation, but only the extent tirely socially created. For those who have to which they are oppressed. A circularity en- degenerative conditions which may cause ters into disability research: it is logically im- premature death, or any condition which possible for a qualitative researcher to find involves pain and discomfort, it is harder to disabled people who are not oppressed. ignore the negative aspects of impairment. 3. The analogy with feminist debates As Simon Williams has argued, about sex and gender highlights another problem: the crude distinction between . . . endorsement of disability solely as social impairment (medical) and disability (so- oppression is really only an option, and an cial). Any researcher who does qualitative erroneous one at that, for those spared the research with disabled people immediate- ravages of chronic illness. ly discovers that in everyday life it is very (Williams, 1999, 812) hard to distinguish clearly between the impact of impairment, and the impact of Carol Thomas (1999) has tried to develop social barriers (see Watson, 2002; Sherry, the social model to include what she calls 2002). In practice, it is the interaction of “impairment effects,” in order to account individual bodies and social environments for the limitations and difficulties of medi- which produces disability. For example, cal conditions. Subsequently, she suggest- steps only become an obstacle if someone ed that a relational interpretation of the has a mobility impairment: each element social model enables disabling aspects to is necessary but not sufficient for the indi- be attributed to impairment, as well as so- vidual to be disabled. If a person with mul- cial oppression: tiple sclerosis is depressed, how easy is it to make a causal separation between the once the term “disability” is ring-fenced to effect of the impairment itself; her reaction mean forms of oppressive social reactions to having an impairment; her reaction to visited upon people with impairments, there being oppressed and excluded on the basis is no need to deny that impairment and illness cause some restrictions of activity, or of having an impairment; other, unrelated that in many situations both disability and reasons for her to be depressed? In prac- impairment effects interact to place limits on tice, social and individual aspects are al- activity. most inextricable in the complexity of the (2004, 29) lived experience of disability. THE SOCIAL MODEL OF DISABILITY | 219

Moreover, feminists have now aban- print, audio tape or electronic files. Prac- doned the sex/gender distinction, because ticality and resource constraints make it it implies that sex is not a social concept. unfeasible to overcome every barrier: for Judith Butler (1990) and others show that example, the New York subway and Lon- what we think of as sexual difference is al- don Underground systems would require ways viewed through the lens of gender. huge investments to make every line and Shelley Tremain (2002) has claimed simi- station accessible to wheelchair users. larly that the social model treats impair- A copyright library of five million books ment as an unsocialized and universal could never afford to provide all these texts concept, whereas, like sex, impairment is in all the different formats that visually im- always already social. paired users might potentially require. In 4. The concept of the barrier-free uto- these situations, it seems more practical to pia. The idea of the enabling environment, make other arrangements to overcome the in which all socially imposed barriers are problems: for example, Transport for Lon- removed, is usually implicit rather than don have an almost totally accessible fleet explicit in social model thinking, although of buses, to compensate those who cannot it does form the title of a major academic use the tube, while libraries increasingly collection (Swain et al., 1993). Vic Finkel- have arrangements to make particular stein (1981) also wrote a simple parable of books accessible on demand, given notice. a village designed for wheelchair users to Moreover, physical and sensory impair- illustrate the way that social model think- ments are in many senses the easiest to ac- ing turned the problem of disability on its commodate. What would it mean to create head. Yet despite the value of approaches a barrier free utopia for people with learn- such as Universal Design, the concept of a ing difficulties? Reading and writing and world in which people with impairments other cognitive abilities are required for full were free of environmental barriers is hard participation in many areas of contempo- to operationalize. rary life in developed nations. What about For example, numerous parts of the people on the autistic spectrum, who may natural world will remain inaccessible to find social contact difficult to cope with: a many disabled people: mountains, bogs, barrier free utopia might be a place where beaches are almost impossible for wheel- they did not have to meet, communicate chair users to traverse, while sunsets, with, or have to interpret other people. birdsong, and other aspects of nature are With many solutions to the disability prob- difficult for those lacking sight or hearing lem, the concept of addressing special to experience. In urban settings, many bar- needs seems more coherent than the con- riers can be mitigated, although historic cept of the barrier free utopia. Barrier free buildings often cannot easily be adapted. enclaves are possible, but not a barrier free However, accommodations are sometimes world. incompatible because people with dif- While environments and services can ferent impairments may require different and should be adapted wherever possible, solutions: blind people prefer steps and there remains disadvantage associated defined curbs and indented paving, while with having many impairments which no wheelchair users need ramps, dropped amount of environmental change could curbs, and smooth surfaces. Sometimes, entirely eliminate. People who rely on people with the same impairment require wheelchairs, or personal assistance, or different solutions: some visually impaired other provision are more vulnerable and people access text in Braille, others in large have fewer choices than the majority of 220 | TOM SHAKESPEARE

able-bodied people. When Michael Oliver possible, it will remain disadvantageous to claims that have many forms of impairment. Second, it is harder to celebrate disability than it is to An aeroplane is a mobility aid for non-flyers celebrate Blackness, or Gay Pride, or being in exactly the same way as a wheelchair is a a woman. “Disability pride” is problematic, mobility aid for non-walkers. because disability is difficult to recuperate (Oliver, 1996, 108) as a concept, as it refers either to limita- his suggestion is amusing and thought pro- tion and incapacity, or else to oppression voking, but cannot be taken seriously. As and exclusion, or else to both dimensions. Michael Bury has argued, Third, if disabled people are to be eman- cipated, then society will have to provide It is difficult to imagine any modern indus- extra resources to meet the needs and over- trial society (however organised) in which, come the disadvantage which arises from for example, a severe loss of mobility or dex- impairment, not just work to minimize dis- terity, or sensory impairments, would not be crimination (Bickenbach et al., 1999). ‘disabling’ in the sense of restricting activity to some degree. The reduction of barriers to participation does not amount to abolishing BEYOND THE SOCIAL MODEL? disability as a whole. (Bury, 1997, 137) In this chapter, I have tried to offer a balanced assessment of the strengths and Drawing together these weaknesses, a fi- weaknesses of the British social model of nal and important distinction needs to be disability. While acknowledging the ben- made. The disability movement has often efits of the social model in launching the drawn analogies with other forms of iden- disability movement, promoting a posi- tity politics, as I have done in this chapter. tive disability identity, and mandating civil The disability rights struggle has even been rights legislation and barrier removal, it is called the “Last Liberation Movement” my belief that the social model has now be- (Driedger, 1989). Yet while disabled people come a barrier to further progress. do face discrimination and prejudice, like As a researcher, I find the social model women, gay and lesbian people, and mi- unhelpful in understanding the complex nority ethnic communities, and while the interplay of individual and environmental disability rights movement does resemble factors in the lives of disabled people. In in its forms and activities many of these policy terms, it seems to me that the social other movements, there is a central and model is a blunt instrument for explaining important difference. There is nothing in- and combating the social exclusion that dis- trinsically problematic about being female abled people face, and the complexity of our or having a different sexual orientation, or a needs. Politically, the social model has gen- different skin pigmentation or body shape. erated a form of identity politics which has These other experiences are about wrong- become inward looking and separatist. ful limitation of negative freedom. Remove A social approach to disability is indis- the social discrimination, and women and pensable. The medicalization of disability people of color and gay and lesbian peo- is inappropriate and an obstacle to effective ple will be able to flourish and participate. analysis and policy. But the social model is But disabled people face both discrimina- only one of the available options for theo- tion and intrinsic limitations. This claim rizing disability. More sophisticated and has three implications. First, even if social complex approaches are needed, perhaps barriers are removed as far as practically building on the WHO initiative to create the THE SOCIAL MODEL OF DISABILITY | 221

International Classification of Functioning, People’s Movement.” In Disabling Barriers, En- Disability and Health. One strength of this abling Environments, edited by J. Swain, S. French, approach is the recognition that disability C. Barnes, C. Thomas et al. London: Sage. Morris, J. (1991). Pride Against Prejudice. London: is a complex phenomenon, requiring dif- Women’s Press. ferent levels of analysis and intervention, Oakley, A. (1972). Sex, Gender and Society. London: ranging from the medical to the socio-po- Maurice Temple Smith. litical. Another is the insight that disability Oliver, M. (1996). Understanding Disability: From is not a minority issue, affecting only those Theory to Practice. Basingstoke: Macmillan. Oliver, M. (2004). “The Social Model in Action: If I Had people defined as disabled people. As Ir- a Hammer.” In Implementing the Social Model ving Zola (1989) maintained, disability is a of Disability: Theory and Research, edited by C. universal experience of humanity. Barnes and G. Mercer: Leeds: The Disability Press. Shakespeare, T. and Watson, N. (2001). “The Social Model of Disability: An Outdated ideology?” In BIBLIOGRAPHY Exploring Theories and Expanding Methodologies: Where Are We and Where Do We Need to Go? Research Barnes, C. (1991). Disabled People in Britain and Dis- in Social Science and Disability volume 2, edited by crimination. London: Hurst and Co. S. Barnarrt and B. M. Altman. Amsterdam: JAI. Bickenbach, J. E., Chatterji, S., Badley, E. M., and Us- Sherry, M. (2002). “If Only I Had a Brain.” Unpublished tun, T. B. (1999). “Models of Disablement, Uni- PhD dissertation, University of Queensland. versalism and the International Classification of Swain, J., Finkelstein, V., French, S. and Oliver, M. eds. Impairments, Disabilities and Handicaps.” Social (1993). Disabling Barriers, Enabling Environments. Science and Medicine, 48: 1173–1187. London: OUP/Sage. Bury, M. (1997). Health and Illness in a Changing Soci- Thomas, C. (1999). Female Forms. Buckingham: Open ety. London: Routledge. University Press. Butler, J (1990). Gender Trouble: Feminism and the Thomas, C. (2004). “Developing the Social Relational Subversion of Identity. New York: Routledge. in the Social Model of Disability: A Theoretical Campbell, J. and Oliver, M. (1996). Disability Politics: Agenda.” In Implementing the Social Model of Dis- Understanding Our Past, Changing Our Future. ability: Theory and Rresearch, edited by C. Barnes London: Routledge. and G. Mercer. Leeds: The Disability Press. Charlton J (1998). Nothing About Us Without Us: Dis- Tremain, S. (2002). “On the Subject of Impairment.” ability, Oppression and Empowerment. Berkeley: In Disability/Postmodernity: Embodying Disability University of California Press. Theory, edited by M. Corker and T. Shakespeare, Crow, L. (1992). “Renewing the Social Model of Dis- pp. 32–47. London: Continuum. ability.” Coalition, July: 5–9. Union of the Physically Impaired Against Segregation Dreidger, D. (1989). The Last Civil Rights Movement. (1974/5). Policy Statement, available at http:// London: Hurst. www.leeds.ac.uk/disability-studies/archiveuk/ Finkelstein, V. (1981). “To Deny or Not to Deny Disabil- archframe.htm; accessed August 10, 2005. ity.” In Handicap in a Social World, edited by A Bre- Union of the Physically Impaired Against Segregation hin et al. Sevenoaks: OUP/Hodder and Stoughton. (1975). Fundamental Principles, available at http:// Finkelstein, V. (1998). “Emancipating disability studies.” www.leeds.ac.uk/disability-studies/archiveuk/ In The Disability Reader: Social Science Perspectives, archframe.htm; accessed August 10, 2005. edited by T. Shakespeare. London: Cassell. Watson, N. (2002). “Well, I Know This Is Going to French, S. (1993). “Disability, Impairment or Some- Sound Very Strange to You, But I Don’t See Myself thing in Between.” In Disabling Barriers, Enabling as a Disabled Person: Identity and Disability.” Dis- Environments, edited by J. Swain, S. French, C. ability and Society, 17, 5: 509–528. Barnes, C. Thomas. London: Sage, 17–25. Williams, S. J. (1999). “Is Anybody There? Critical Re- Gustavsson, A., Sandvin, J., Traustadóttir, R. and alism, Chronic Illness, and the Disability Debate.” Tossebrø, J (2005). Resistance, Reflection and Sociology of Health and Illness, 21, 6: 797–819. Change: Nordic disability Research. Lund, Sweden: Wolfensberger, W. (1972). The Principle of Normaliza- Studentlitteratur. tion in Human Services. Toronto: National Insti- Hahn, H. (1988). “The Politics of Physical Differences: tute on Mental Retardation. Disability and Discrimination.” Journal of Social Zola, I. K. (1989). “Towards the Necessary Universal- Issues, 44 (1) 39–47. izing of a Disability Policy.” The Milbank Quarterly, Hasler, F. (1993). “Developments in the Disabled 67, suppl.2, Pt. 2: 401–428. CHAPTER 17

Narrative Prosthesis David Mitchell and Sharon Snyder

LITERATURE AND THE the object of representational treatments, UNDISCIPLINED BODY OF but rather that their function in literary DISABILITY discourse is primarily twofold: disability pervades literary narrative, first, as a stock This chapter prefaces the close readings to feature of characterization and, second, come [in Narrative Prosthesis] by deepen- as an opportunistic metaphorical device. ing our theory of narrative prosthesis as We term this perpetual discursive depen- shared characteristics in the literary rep- dency upon disability narrative prosthesis. resentation of disability. We demonstrate Disability lends a distinctive idiosyncrasy to one of a variety of approaches in disability any character that differentiates the charac- studies to the “problem” that disability and ter from the anonymous background of the disabled populations pose to all cultures. “norm.” To exemplify this phenomenon, Nearly every culture views disability as the opening half of this chapter analyzes a problem in need of a solution, and this the Victorian children’s story The Steadfast belief establishes one of the major modes Tin Soldier in order to demonstrate that dis- of historical address directed toward people ability serves as a primary impetus of the with disabilities. The necessity for develop- storyteller’s efforts. In the second instance, ing various kinds of cultural accommoda- disability also serves as a metaphorical tions to handle the “problem” of corporeal signifier of social and individual collapse. difference (through charitable organiza- Physical and cognitive anomalies promise tions, modifications of physical architec- to lend a “tangible” body to textual abstrac- ture, welfare doles, quarantine, genocide, tions; we term this metaphorical use of euthanasia programs, etc.) situates people disability the materiality of metaphor and with disabilities in a profoundly ambiva- analyze its workings as narrative prosthesis lent relationship to the cultures and stories in our concluding discussion of Sophocles’ they inhabit. The perception of a “crisis” drama Oedipus the King. We contend that or a “special situation” has made disabled disability’s centrality to these two princi- people the subject of not only governmen- pal representational strategies establishes tal policies and social programs but also a a conundrum: while stories rely upon the primary object of literary representation. potency of disability as a symbolic figure, Our thesis centers not simply upon the they rarely take up disability as an experi- fact that people with disabilities have been ence of social or political dimensions. NARRATIVE PROSTHESIS | 223

While each of the chapters that follow as an ambivalent and mutable category of [in Narrative Prosthesis] set out some of cultural and literary investment. Within the key cultural components and specific literary narratives, disability serves as an historical contexts that inform this his- interruptive force that confronts cultural tory of disabled representations, our main truisms. The inherent vulnerability and objective addresses the development of a variability of bodies serves literary narra- representational or “literary” history. By tives as a metonym for that which refuses “literary” we mean to suggest a form of writ- to conform to the mind’s desire for order ing that explicitly values the production of and rationality. Within this schema, disabil- what narrative theorists such as Barthes, ity acts as a metaphor and fleshly example Blanchot, and Chambers have referred to of the body’s unruly resistance to the cul- as “open-ended” narrative.1 The identifica- tural desire to “enforce normalcy.”2 The lit- tion of the open-ended narrative differenti- erary narratives we discuss all deploy the ates a distinctively “literary” component of mutable or “deviant” body as an “unbear- particular kinds of storytelling: those texts able weight” (to use Susan Bordo’s phrase) that not only deploy but explicitly fore- in order to counterbalance the “mean- ground the “play” of multiple meanings ing-laden” and ethereal projections of the as a facet of their discursive production. mind. The body’s weighty materiality func- While this definition does not overlook the tions as a textual and cultural other—an fact that all texts are inherently “open” to a object with its own undisciplined language multiplicity of interpretations, our notion that exceeds the text’s ability to control it. of literary narrative identifies works that As many theorists have pointed out, stage the arbitrariness of linguistic sign this representational split between body systems as a characterizing feature of their and mind/text has been inherited from plots and commentaries. Not only do the Descartes (although we demonstrate that artistic and philosophical works under dis- disability has been entrenched in these cussion here present themselves as avail- assumptions throughout history). Keeping able to a multiplicity of readings, they in mind that the perception of disabil- openly perform their textual inexhaust- ity shifts from one epoch to another, and ibility. Each shares a literary objective of sometimes within decades and years, we destabilizing sedimented cultural mean- want to argue that the disabled body has ings that accrue around ideas of bodily consistently held down a “privileged” posi- “deviance.” Thus, we approach the writ- tion with respect to thematic variations ings of Montaigne, Nietzsche, Shakespeare, on the mind/body split. Whether a cul- Melville, Anderson, Dunn, and an array of ture approaches the body’s materiality as post-1945 American authors as writers who a denigrated symbol of earthly contamina- interrogate the objectives of narrative in tion (such as in early Christian cultures), general and the corporeal body in particu- or as a perfectible techn¯e of the self (as in lar as discursive products. Their narratives ancient Athenian culture), or as an object all share a self-reflexive mode of address of medical interpretation (as in Victorian about their own textual production of dis- culture), or as specular commodity in the abled bodies. age of electronic media (as is the case in This textual performance of ever-shift- postmodernism), disability perpetually ing and unstable meanings is critical in our serves as the symbolical symptom to be interpretive approach to the representation interpreted by discourses on the body. of disability. The close readings that follow Whereas the “able” body has no definitional hinge upon the identification of disability core (it poses as transparently “average” or 224 | DAVID MITCHELL AND SHARON SNYDER

“normal”), the disabled body surfaces as any tions about the body and a deterministic body capable of being narrated as “outside vehicle of characterization for characters the norm.” Within such a representational constructed as disabled. Thus, in works as schema, literary narratives revisit disabled artistically varied and culturally distinct as bodies as a reminder of the “real” physical Shakespeare’s Richard III, Montaigne’s “Of limits that “weigh down” transcendent ide- Cripples,” Melville’s Moby-Dick, Nietzsche’s als of the mind and knowledge-producing Thus Spoke Zarathustra, Anderson’s disciplines. In this sense, disability serves Winesburg, Ohio, Faulkner’s The Sound as the hard kernel or recalcitrant corpo- and the Fury, Salinger’s The Catcher in the real matter that cannot be deconstructed Rye, Lee’s To Kill a Mockingbird, Kesey’s away by the textual operations of even the One Flew Over the Cuckoo’s Nest, Dunn’s most canny narratives or philosophical Geek Love, Powers’s Operation Wandering idealisms.3 Soul, and Egoyan’s The Sweet Hereafter, the For our purposes in [Narrative meaning of the relationship between hav- Prosthesis], the representation of disability ing a physical disability and the nature of a has both allowed an interrogation of static character’s identity comes under scrutiny. beliefs about the body and also erupted as Disability recurs in these works as a potent the unseemly matter of narrative that can- force that challenges cultural ideals of the not be textually undone. We therefore for- “normal” or “whole” body. At the same ward readings of disability as a narrative time, disability also operates as the textual device upon which the literary writer of obstacle that causes the literary operation of “open-ended” narratives depends for his open-endedness to close down or stumble. or her disruptive punch. Our phrase narra- This “closing down” of an otherwise tive prosthesis is meant to indicate that dis- permeable and dynamic narrative form ability has been used throughout history demonstrates the historical conundrum of as a crutch upon which literary narratives disability. Characters such as Montaigne’s lean for their representational power, dis- “les boiteux,” Shakespeare’s “hunchback’d ruptive potentiality, and analytical insight. king,” Melville’s “crippled” captain, Bodies show up in stories as dynamic enti- Nietzsche’s interlocutory “throng of crip- ties that resist or refuse the cultural scripts ples,” Anderson’s storied “grotesques,” assigned to them. While we do not simply Faulkner’s “tale told by an idiot,” Salinger’s extol these literary approaches to the rep- fantasized commune of deaf-mutes, Lee’s resentation of the body (particularly in racial and cognitive outsiders, Kesey’s ward relation to recurring tropes of disability), of acutes and chronics, Dunn’s chemically we want to demonstrate that the disabled altered freaks, and Power’s postapocalyp- body represents a potent symbolic site of tic wandering children provide powerful literary investment. counterpoints to their respective cultures’ The reasons for this dependency upon normalizing Truths about the construction disability as a device of characterization of deviance in particular, and the fixity of and interrogation are many, and our con- knowledge systems in general. Yet each cept of narrative prosthesis establishes of these characterizations also evidences a variety of motivations that ground the that the artifice of disability binds disabled narrative deployment of the “deviant” characters to a programmatic (even deter- body. However, what surfaces as a theme ministic) identity. Disability may provide an throughout these chapters is the paradoxi- explanation for the origins of a character’s cal impetus that makes disability into both identity, but its deployment usually proves a destabilizing sign of cultural prescrip- either too programmatic or unerringly NARRATIVE PROSTHESIS | 225

“deep” and mysterious. In each work ana- Japanese literature made use of disabled lyzed in [Narrative Prosthesis], disability is characters to the same extent as American used to underscore, in the words of Richard and European literatures, he honestly Powers, adapting the theories of Lacan, replied that he had never encountered any. that the body functions “like a language” as Upon further reflection, he listed several a dynamic network of misfirings and arbi- examples and laughingly added that of trary adaptations (Goldbug 545). Yet, this course the Nobel Prize winner Kenzaburo defining corporeal unruliness consistently Oë wrote almost exclusively about the sub- produces characters who are indentured to ject. This “surprise” about the pervasive their biological programming in the most nature of disabled images in national lit- essentializing manner. Their disabilities eratures catches even the most knowledge- surface to explain everything or nothing able scholars unaware. Without developed with respect to their portraits as embodied models for analyzing the purpose and beings. function of representational strategies of All of the above examples help to dem- disability, readers tend to filter a multitude onstrate one of the central assumptions of disability figures absently through their undergirding [Narrative Prosthesis]: dis- imaginations. ability is foundational to both cultural For film scholarship, Paul Longmore definition and to the literary narratives has perceptively formulated this paradox, that challenge normalizing prescriptive asking why we screen so many images of ideals. By contrasting and comparing the disability and simultaneously screen them depiction of disability across cultures and out of our minds. In television and film histories, one realizes that disability pro- portraits of disability, Longmore argues, vides an important barometer by which to this screening out occurs because we are assess shifting values and norms imposed trained to compartmentalize impairment upon the body. Our approach in the chap- as an isolated and individual condition of ters that follow [in ibid.] is to treat disability existence. Consequently, we rarely connect as a narrative device—an artistic prosthe- together stories of people with disabilities as sis—that reveals the pervasive dependency evidence of a wider systemic predicament. of artistic, cultural, and philosophical dis- This same phenomenon can be applied to courses upon the powerful alterity assigned other representational discourses. to people with disabilities. In short, disabil- As we discussed in our introduction to ity characterization can be understood as The Body and Physical Difference, our cur- a prosthetic contrivance upon which so rent models of minority representations many of our cultural and literary narratives tend to formulate this problem of liter- rely. ary/critical neglect in the obverse manner (5). One might expect to find the argument in the pages to come that disability is an THE (IN)VISIBILITY OF PROSTHESIS ignored, overlooked, or marginal experi- The hypothesis of this discursive depen- ence in literary narrative, that its absence dency upon disability strikes most schol- marks an ominous silence in the literary ars and readers at first glance as relatively repertoire of human experiences. In pur- insubstantial. During a recent conference suing such an argument one could rightly of the Herman Melville Society in Volos, redress, castigate, or bemoan the neglect Greece, we met a scholar from Japan of this essential life experience within disinterested in representations of disabil- courses that might have seen fit to take up ity in American literature. When asked if the important task of exploring disability 226 | DAVID MITCHELL AND SHARON SNYDER

in serious terms. Within such an approach, perpetual circulation throughout print his- disability would prove to be an unarticu- tory. This question is not simply a matter lated subject whose real-life counterparts of stereotypes or “bad objects,” to borrow could then charge that their own social Naomi Schor’s phrase.5 Rather, the inter- marginality was the result of an attendant pretation of representations of disability representational erasure outside of medi- strikes at the very core of cultural defini- cal discourses. Such a methodology would tions and values. What is the significance theorize that disability’s absence proves of the fact that the earliest known cunei- evidence of a profound cultural repression form tablets catalog 120 omens interpreted to escape the reality of biological and cog- from the “deformities” of Sumerian fetuses nitive differences. and irregularly shaped sheep’s and calf’s However, what we hope to demonstrate livers? How does one explain the disabled in [Narrative Prosthesis] is that disability gods, such as the blind Hod, the one-eyed has an unusual literary history. Between Odin, the one-armed Tyr, who are central the social marginality of people with dis- to Norse myths, or Hephaestus, the “crook- abilities and their corresponding repre- footed god,” in Greek literature? What sentational milieus, disability undergoes a do these modes of representation reveal different representational fate. While racial, about cultures as they forward or suppress sexual, and ethnic criticisms have often physical differences? Why does the “visual” founded their critiques upon a pervasive spectacle of so many disabilities become a absence of their images in the dominant predominating trope in the nonvisual tex- culture’s literature, we argue that images of tual mediums of literary narratives? disabled people abound in history.4 Even if we disregard the fact that entire fields of SUPPLEMENTING THE VOID study have been devoted to the assessment, cataloging, taxonomization, pathologiza- What calls stories into being, and what tion, objectification, and rehabilitation of does disability have to do with this most disabled people, one is struck by disabil- basic preoccupation of narrative? Narrative ity’s prevalence in discourses outside of prosthesis (or the dependency of literary medicine and the hard sciences. Once a narratives upon disability) forwards the reader begins to seek out representations notion that all narratives operate out of a of disability in our literatures, it is difficult desire to compensate for a limitation or to avoid their proliferation in texts with to reign in excess. This narrative approach which one believed oneself to be utterly to difference identifies the literary object familiar. Consequently, as in the discussion par excellence as that which has become of images of disability in Japanese literature extraordinary—a deviation from a widely mentioned above, the representational accepted norm. Literary narratives begin prevalence of people with disabilities is far a process of explanatory compensation from absent or tangential. As we discussed wherein perceived “aberrancies” can be in Narrative Prosthesis, scholarship in the rescued from ignorance, neglect, or mis- humanities study of disability has sought understanding for their readerships. As to pursue previously unexplored ques- Michel de Certeau explains in his well- tions of the utility of disability to numer- known essay “The Savage ‘I,’ ” the new ous discursive modes, including literature. world travel narrative in the fifteenth and Our hypothesis in Narrative Prosthesis is a sixteenth centuries provides a model for paradoxical one: disabled peoples’ social thinking about the movement of all nar- invisibility has occurred in the wake of their rative. A narrative is inaugurated “by the NARRATIVE PROSTHESIS | 227 search for the strange, which is presumed ference is exemplified. The story opens different from the place assigned it in the with a child receiving a box of tin soldiers beginning by the discourse of the culture” as a birthday gift. The twenty-five soldiers from which it originates (69). The very need stand erect and uniform in every way, for for a story is called into being when some- they “had all been made from the same tin thing has gone amiss with the known world, spoon” (Campbell 1). Each of the soldiers and, thus, the language of a tale seeks to comes equipped with a rifle and bayonet, comprehend that which has stepped out of a blue and red outfit signifying member- line. In this sense, stories compensate for ship in the same regiment, black boots, an unknown or unnatural deviance that and a stern military visage. The limited begs an explanation. omniscient narrator inaugurates the con- Our notion of narrative prosthesis flict that will propel the story by pointing evolves out of this specific recognition: a out a lack in one soldier that mars the uni- narrative issues to resolve or correct—to formity of the gift: “All of the soldiers were “prostheticize” in David Wills’s sense of exactly alike, with the exception of one, the term—a deviance marked as improper who differed from the rest in having only to a social context. A simple schematic of one leg” (2). This unfortunate blemish, narrative structure might run thus: first, a which mars the otherwise flawless ideal of deviance or marked difference is exposed the soldiers standing in unison, becomes to a reader; second, a narrative consolidates the springboard for the story that ensues. the need for its own existence by calling for The incomplete leg becomes a locus for an explanation of the deviation’s origins attention, and from this imperfection a and formative consequences; third, the story issues forth. The twenty-four perfect deviance is brought from the periphery soldiers are quickly left behind in the box of concerns to the center of the story to for the reason of their very perfection and come; and fourth, the remainder of the uniformity—the “ideal” or “intended” sol- story rehabilitates or fixes the deviance in dier’s form promises no story. As Barbara some manner. This fourth step of the repair Maria Stafford points out, “there [is] only of deviance may involve an obliteration a single way of being healthy and lovely, of the difference through a “cure,” the but an infinity of ways of being sick and rescue of the despised object from social wretched” (284). This infinity of ways helps censure, the extermination of the deviant to explain the pervasive dependency of lit- as a purification of the social body, or erary narratives upon the trope of disabil- the revaluation of an alternative mode of ity. Narrative interest solidifies only in the being. Since what we now call disability has identification and pursuit of an anomaly been historically narrated as that which that inaugurates the exceptional tale or the characterizes a body as deviant from shared tale of exception. norms of bodily appearance and ability, The story of The Steadfast Tin Soldier disability has functioned throughout stands in a prosthetic relation to the miss- history as one of the most marked and ing leg of the titular protagonist. The narra- remarked upon differences that originates tive in question (and narrative in a general the act of storytelling. Narratives turn signs sense) rehabilitates or compensates for its of cultural deviance into textually marked “lesser” subject by demonstrating that the bodies. outward flaw “attracts” the storyteller’s— In one of our six-year-old son’s books and by extension the reader’s—interest. entitled The Steadfast Tin Soldier, this pros- The act of characterization is such that thetic relation of narrative to physical dif- narrative must establish the exceptionality 228 | DAVID MITCHELL AND SHARON SNYDER

of its subject matter to justify the telling of The politics of this recourse to disabil- a story. A subject demands a story only in ity as a device of narrative characterization relation to the degree that it can establish demonstrates the importance of disabil- its own extraordinary circumstances.6 The ity to storytelling itself. Literary narratives normal, routine, average, and familiar (by support our appetites for the exotic by definition) fail to mobilize the storytelling posing disability as an “alien” terrain that effort because they fall short of the litmus promises the revelation of a previously test of exceptionality. The anonymity of uncomprehended experience. Literature normalcy is no story at all. Deviance serves borrows the potency of the lure of differ- as the basis and common denominator of ence that a socially stigmatized condition all narrative. In this sense, the missing leg provides. Yet the reliance upon disability presents the aberrant soldier as the story’s in narrative rarely develops into a means focus, for his physical difference exiles him of identifying people with disabilities as a from the rank and file of the uniform and disenfranchised cultural constituency. The physically undifferentiated troop. Whereas ascription of absolute singularity to dis- a sociality might reject, isolate, institution- ability performs a contradictory operation: alize, reprimand, or obliterate this liabil- a character “stands out” as a result of an ity of a single leg, narrative embraces the attributed blemish, but this exceptional- opportunity that such a “lack” provides—in ity divorces him or her from a shared social fact, wills it into existence—as the impetus identity. As in the story of The Steadfast Tin that calls a story into being. Such a paradox Soldier, a narrative disability establishes underscores the ironic promise of disabil- the uniqueness of an individual character ity to all narrative. and is quickly left behind as a purely bio- Display demands difference. The arrival logical fact. Disability marks a character as of a narrative must be attended by the “unlike” the rest of a fiction’s cast, and once “unsightly” eruption of the anomalous (often singled out, the character becomes a case physical in nature) within the social field of of special interest who retains originality vision. The (re)mark upon disability begins to the detriment of all other characteristics. with a stare, a gesture of disgust, a slander Disability cannot be accommodated within or derisive comment upon bodily ignominy, the ranks of the norm(als), and, thus, the a note of gossip about a rare or unsightly options for dealing with the difference that presence, a comment upon the unsuitabil- drives the story’s plot is twofold: a disability ity of deformity for the appetites of polite is either left behind or punished for its lack society, or a sentiment about the unfortu- of conformity. nate circumstances that bring disabilities In the story of The Steadfast Tin Soldier into being. This ruling out-of-bounds of the we witness the exercise of both operations socially anomalous subject engenders an on the visible difference that the protago- act of violence that stories seek to ‘rescue” nist’s disability poses. Once the soldier’s or “reclaim” as worthy of narrative attention. incomplete leg is identified, its difference Stories always perform a compensatory is quickly nullified. Nowhere in the story function in their efforts to renew interest in does the narrator call attention to a diffi- a previously denigrated object. While there cult negotiation that must be attempted as exist myriad inroads to the identification a result of the missing appendage. In fact, of the anomalous—femininity, race, class, like the adventurer of de Certeau’s paradig- sexuality—disability services this narrative matic travel narrative, the tin figure under- appetite for difference as often as any other goes a series of epic encounters without constructed category of deviance. further reference to his limitation: after he NARRATIVE PROSTHESIS | 229 falls out of a window, his bayonet gets stuck 5 [of Narrative Prosthesis]) ends in the in a crack; a storm rages over him later that monster’s anticipated obliteration on night; two boys find the figure, place him his own funeral pyre in the wake of his into a newspaper boat, and sail him down misinterpretation as monstrous, and the the gutter into a street drain; he is accosted tin soldier’s fable reaches its conclusion in by a street rat who poses as gatekeeper to a similar manner. Disability inaugurates the underworld; the newspaper boat sinks narrative, but narrative inevitably punishes in a canal where the soldier is swallowed its own prurient interests by overseeing by a large fish; and finally he is returned the extermination of the object of its to his home of origin when the family pur- fascination. chases the fish for dinner and discovers the one-legged figure in the belly. The series THE PHYSIOGNOMY OF DISABILITY of dangerous encounters recalls the epic adventure of the physically able Odysseus What is the significance of disability as a on his way home from Troy; likewise, the pervasive category of narrative interest? tin soldier endures the physically taxing Why do the convolutions, distortions, and experience without further remark upon ruptures that mark the disabled body’s the incomplete leg in the course of the tale. surface prove seductive to literary repre- The journey and ultimate return home sentation? What is the relationship of the embody the cyclical nature of all narrative external evidence of disability’s perceived (and the story of disability in particular)— deviances and the core of the disabled sub- the deficiency inaugurates the need for a ject’s being? The disabled body occupies a story but is quickly forgotten once the dif- crossroads in the age-old literary debate ference is established. about the relationship of form to content. However, a marred appearance cannot Whereas the “unmarred” surface enjoys ultimately be allowed to return home its cultural anonymity and promises little unscathed. Near the end of the story the more than a confirmation of the adage of significance of the missing leg returns a “healthy” mind in a “healthy” body, dis- when the tin soldier is reintroduced to his ability signifies a more variegated and sor- love—the paper maiden who pirouettes did series of assumptions and experiences. upon one leg. Because the soldier mistakes Its unruliness must be tamed by multiple the dancer as possessing only one leg like mappings of the surface. If form leads to himself, the story’s conclusion hinges content or “embodies” meaning, then dis- upon the irony of an argument about ability’s disruption of acculturated bodily human attraction based upon shared norms also suggests a corresponding mis- likeness. If the maiden shares the fate of alignment of subjectivity itself. one-leggedness, then, the soldier reasons, In Volatile Bodies Elizabeth Grosz argues she must be meant for him. However, in that philosophy has often reduced the body a narrative twist of deus ex machina the to a “fundamental continuity with brute, blemished soldier is inexplicably thrown inorganic matter” (8). Instead of this reduc- into the fire by a boy right at the moment tive tendency, Grosz calls for a more com- of his imagined reconciliation with the plex engagement with our theorizations “one-legged” maiden. One can read this of the body: “the body provides a point of ending as a punishment for his willingness mediation between what is perceived as to desire someone physically perfect and purely internal and accessible only to the therefore unlike himself. Shelley’s story subject and what is external and publicly of Frankenstein (discussed in chapter observable, a point from which to rethink 230 | DAVID MITCHELL AND SHARON SNYDER

the opposition between the inside and the symptoms. Such an approach places outside” (20). Approaching the body as a the body in an automatic physiognomic mediating force between the outside world relation to the subjectivity it harbors. As and internal subjectivity would allow a Barbara Maria Stafford has demonstrated, more thoroughgoing theory of subjectivi- practices of interpreting the significance of ty’s relationship to materiality. In this way, bodily appearances since the eighteenth Grosz argues that the body should not be century have depended upon variations of understood as a receptacle or package the physiognomic method. for the contents of subjectivity, but rather plays an important role in the formation of Physiognomics was body criticism. As psychic identity itself. corporeal connoisseurship, it diagnosed Disability will play a crucial role in the unseen spiritual qualities by scrutinizing reformulation of the opposition between visible traits. Since its adherents claimed interior and exterior because physical dif- privileged powers of detection, it was a ferences have so often served as an exam- somewhat sinister capability. . . . The master eighteenth-century physiognomist, Lavater, ple of bodily form following function or noted that men formed conjectures “by vice versa. The mutability of bodies causes reasoning from the exterior to the interior.” them to change over time (both individually He continued: “What is universal nature but and historically), and yet the disabled body physiognomy. Is not everything surface and is sedimented within an ongoing narrative contents? Body and soul? External effect of breakdown and abnormality. However, and internal faculty? Invisible principle and while we situate our argument in opposi- visible end?” (84) tion to reading physical disability as a one- to-one correspondence with subjecthood, For cultures that operated upon models of we do not deny its role as a foundational bodily interpretation prior to the develop- aspect of identity. The disabled subject’s ment of internal imaging techniques, the navigation of social attitudes toward peo- corporeal surface was freighted with signif- ple with disabilities, medical pathologies, icance. Physiognomy became a paradigm the management of embodiment itself, and of access to the ephemeral and intangible daily encounters with “perfected” physi- workings of the interior body. Speculative calities in the media demonstrates that qualities such as moral integrity, honesty, the disabled body has a substantial impact trustworthiness, criminality, fortitude, upon subjectivity as a whole. The study of cynicism, sanity, and so forth, suddenly disability must understand the impact of became available for scrutiny by virtue of the experience of disability upon subjec- the “irregularities” of the body that envel- tivity without simultaneously situating the oped them. For the physiognomist, the internal and external body within a strict body allowed meaning to be inferred from mirroring relationship to one another. the outside in; such a speculative practice In literature this mediating role of the resulted in the ability to anticipate intan- external body with respect to internal gible qualities of one’s personhood with- subjectivity is often represented as a out having to await the “proof ” of actions relation of strict correspondence. Either or the intimacy of a relationship developed the “deviant” body deforms subjectivity, or over time. By “reasoning from the exterior “deviant” subjectivity violently erupts upon to the interior,” the trained physiognomist the surface of its bodily container. In either extracted the meaning of the soul with- instance the corporeal body of disability is out the permission or participation of the represented as manifesting its own internal interpreted. NARRATIVE PROSTHESIS | 231

If the “external effect” led directly to a was inherently social in its making. The knowledge of the “internal faculty,” then physiognomic corollary seemed to provide those who inhabited bodies deemed “out- a way in to the secrets of identity itself. The side the norm” proved most ripe for a scru- chapters that follow demonstrate that the tiny of their moral or intellectual content. problem of the representation of disability Since disabled people by definition embod- is not the search for a more “positive” story ied a form that was identified as “outside” of disability, as it has often been formulated the normal or permissible, their visages in disability studies, but rather a thorough- and bodily outlines became the physiog- going challenge to the undergirding autho- nomist’s (and later the pathologist’s) object rization to interpret that disability invites. par excellence. Yet, the “sinister capability” There is a politics at stake in the fact that of physiognomy proves more complex than disability inaugurates an explanatory need just the exclusivity of interpretive author- that the unmarked body eludes by virtue ity that Stafford suggests. If the body would of its physical anonymity. To participate offer a surface manifestation of inter- in an ideological system of bodily norms nal symptomatology, then disability and that promotes some kinds of bodies while deformity automatically preface an equally devaluing others is to ignore the malleabil- irregular subjectivity. Physiognomy proves ity of bodies and their definitively mutant a deadly practice to a population already natures. existing on the fringes of social interaction Stafford’s argument notwithstanding, and “humanity.” While the “authorized” the body’s manipulation by physiognomic physiognomist was officially sanctioned practices did not develop as an exclusively to interpret the symbology of the bodily eighteenth-century phenomenon. Our surface, the disabled person became every own research demonstrates that while person’s Rorschach test. While physiog- physiognomics came to be consolidated nomists discerned the nuances of facial as a scientific ideology in the eighteenth countenances and phrenologists surveyed and nineteenth centuries, people with protuberances of the skull, the extreme disabilities and deformities have always examples offered by those with physical been subject to varieties of this interpretive disabilities and deformities invited the practice. Elizabeth Cornelia Evans argues armchair psychology of the literary prac- that physiognomic beliefs can be traced titioner to participate in the symbolic back as far as ancient Greece. She cites manipulation of bodily exteriors. Aristotle as promoting physiognomic Novelists, dramatists, philosophers, reasoning when he proclaims, poets, essayists, painters, and moralists all flocked to the site of a physiognomic circus It is possible to infer character from from the eighteenth century on. “Irregular” physique, if it is granted that body and soul bodies became a fertile field for symbol- change together in all natural affections . . . For if a peculiar affection applies to any ists of all stripes. Disability and deformity individual class, e.g., courage to lions, there retained their fascination for would-be must be some corresponding sign for it; for interpreters because their “despoiled” it has been assumed that body and soul are visages commanded a rationale that nar- affected together (7). rative (textual or visual) promised to deci- pher. Because disability represents that In fact, one might argue that physio- which goes awry in the normalizing bodily gnomics came to be consolidated out of a schema, narratives sought to unravel the general historical practice applied to the riddle of anomaly’s origins. Such a riddle bodies of disabled peoples. If the extreme 232 | DAVID MITCHELL AND SHARON SNYDER

evidence of marked physical differences we must assume that his own disability provided a catalog of reliable signs, then served as an experiential source for this perhaps more minute bodily differentiations insight. The master riddle solver in effect could also be cataloged and interpreted. trumps the Sphinx’s feminine otherness In this sense, people with disabilities with knowledge gleaned from his own expe- ironically served as the historical locus for rience of inhabiting an alien body. In doing the invention of physiognomy. so, Oedipus taps into the cultural reservoir As we pointed out earlier, the oldest sur- of disability’s myriad symbolic associa- viving tablets found along the Tigris River tions as an interpretive source for his own in Mesopotamia and dated from 3000 to riddle-solving methodology. Whereas dis- 2000 B.C. deployed a physiognomic method ability usually provides the riddle in need to prognosticate from deformed fetuses of a narrative solution, in this instance and irregular animal livers. The evidence of the experience of disability momentarily bodily anomalies allowed royalty and high serves as the source of Oedipus’s interpre- priests to forecast harvest cycles, geographic tive mastery. Yet, Sophocles’ willingness to conditions, the outcomes of impending represent disability as a mode of experi- wars, and the future of city-states. The ence-based knowledge proves a rare liter- symbolic prediction of larger cultural con- ary occasion and a fleeting moment in the ditions from physical differences suggests play’s dramatic structure. one of the primary differences between While Oedipus solves the Sphinx’s the ancient and modern periods: physical riddle in the wake of his own physical anomalies metamorphosed from a sym- experience as a lame interpreter and an bolic interpretation of worldly meanings interpreter of lameness, his disability to a primarily individualized locus of infor- remains inconsequential to the myth’s mation. The movement of disability from a plot. Oedipus’s disability—the result of macro to a micro level of prediction under- Laius’s pinning of his infant son’s ankles scores our point that disability has served as he sends him off to die of exposure— as a foundational category of cultural “marks” his character as distinctive and interpretation. The long-standing practice worthy of the exceptional tale. Beyond this of physiognomic readings demonstrates physical fact, Sophocles neglects to explore that disability and deformity serve as the the relationship of the body’s mediating impetus to analyze an otherwise obscured function with respect to Oedipus’s kingly meaning or pattern at the individual level. subjectivity. Either his “crippling” results in In either case the overdetermined symbol- an insignificant physical difference, or the ism ascribed to disabled bodies obscured detailing of his difference can be understood the more complex and banal reality of those to embody a vaguely remembered history who inhabited them. of childhood violence enacted against him by his father. The disability remains a physical fact of his character that the text THE MATERIALITY OF METAPHOR literally overlooks once this difference is Like Oedipus (another renowned disabled established as a remnant of his repressed fictional creation), cultures thrive upon childhood. Perhaps those who share the solving the riddle of disability’s rhyme stage with Oedipus either have learned and reason. When the limping Greek pro- to look away from his disability or have tagonist overcomes the Sphinx by answer- imbibed the injunction of polite society to ing “man who walks with a cane” as the refuse commentary upon the existence of concluding answer to her three-part query, the protagonist’s physical difference. NARRATIVE PROSTHESIS | 233

However, without the pinning of French cartoonists and essayists deployed Oedipus’s ankles and his resulting lameness the body as a metaphor because the body two important aspects of the plot would “succeeds in connecting narrative and be compromised. First, Oedipus might knowledge, meaning and knowing” most have faltered at the riddle of the Sphinx viscerally (5). This form of textual embodi- like others before him and fallen prey to ment concretizes an otherwise ephemeral the voracious appetite of the she-beast; concept within a corporeal essence. To give second, Sophocles’ protagonist would lose an abstraction a body allows the idea to the physical sign that literally connects simulate a foothold in the material would him to an otherwise inscrutable past. In that it would otherwise fail to procure. this sense, Oedipus’s physical difference Whereas an ideal such as democracy secures key components of the plot imparts a weak and abstracted notion of that allow the riddle of his identity to be governmental and economic reform, for unraveled. At the same time, his disability example, the embodied caricature of a serves as the source of little substantive hunchbacked monarch overshadowed by commentary in the course of the drama a physically superior democratic citizen itself. Oedipus as a “lame interpreter” proved more powerful than any ideological establishes the literal source of his ability argument. Instead of political harangue, to solve the baffling riddle and allows the the body offers an illusion of fixity to a dramatist to metaphorize humanity’s textual effect: incapacity to fathom the dictums of the gods. This movement exemplifies the [Body] metaphors were able simultane- literary oscillation between micro and ously to describe the event and to make the macro levels of metaphorical meaning description attain the level of the imaginary. supplied by disability. Sophocles later The deployment of these bodily topoi—the moves to Oedipus’s self-blinding as a degeneracy of the nobility, the impotence of the king, the herculean strength of the further example of how the physical body citizenry, the goddesses of politics appearing provides a corporeal correlative to the naked like Truth, the congenital deformity ability of dramatic myth to bridge personal of the aristocrats, the bleeding wound of the and public symbology. martyrs—allowed political society to repre- What is of interest for us in this ancient sent itself at a pivotal moment of its history. text is the way in which one can read its . . . One must pass through the [bodily] forms representational strategy as a paradigm for of a narrative in order to reach knowledge. literary approaches to disability. The ability (De Baecque 4–5) of disabled characters to allow authors the metaphorical “play” between macro and Such a process of giving body to belief exem- micro registers of meaning-making estab- plifies the corporeal seduction of the body lishes the role of the body in literature as a to textual mediums. The desire to access liminal point in the representational pro- the seeming solidity of the body’s material- cess. In his study of editorial cartoonings ity offers representational literatures a way and caricatures of the body leading up to of grasping that which is most unavailable the French Revolution, Antoine de Baecque to them. For de Baecque, representing a argues that the corporeal metaphor pro- body in its specificity as the bearer of an vided a means of giving the abstractions otherwise intangible concept grounds the of political ideals an “embodied” power. reality of an ideological meaning. The pas- To “know oneself ” and provide a visual sage through a bodily form helps secure a correlative to a political commentary, knowledge that would otherwise drift away 234 | DAVID MITCHELL AND SHARON SNYDER

of its own insubstantiality. The corporeal “there is ordinarily no language for [the metaphor offers narrative the one thing it body in] pain” (13). However, we would cannot possess—an anchor in materiality. argue that the body itself has no language, Such a process embodies the materiality since language is something foreign to its of metaphor; and literature is the writing nonlinguistic materiality. It must be spoken that aims to concretize theory through its for if its meanings are to prove narratable. ability to provide an embodied account of The narration of the disabled body allows physical, sensory life. a textual body to mean through its long- While de Baecque’s theory of the mate- standing historical representation as an rial metaphor argues that the attempt to overdetermined symbolic surface; the dis- harness the body to a specific ideological abled body also offers narrative the illusion program provides the text with an illusory of grounding abstract knowledge within a opportunity to embody Truth, he overlooks bodily materiality. If the body is the Other the fact that the same process embeds the of text, then textual representation seeks body within a limiting array of symbolic access to that which it is least able to grasp. meanings: crippling conditions equate If the nondysfunctional body proves too with monarchical immobility, corpulence uninteresting to narrate, the disabled body evidences tyrannical greed, deformity rep- becomes a paramount device of character- resents malevolent motivation, and so on. ization. Narrative prosthesis, or the depen- Delineating his corporeal catalog, the his- dency upon the disabled body, proves torian bestows upon the body an elusive, essential to (even the essence of) the sto- general character while depending for ries analyzed in the chapters to come. his readings almost exclusively upon the potent symbolism of disabled bodies in particular. Visible degeneracy, impotency, NOTES congenital deformity, festering ulcerations, 1. Many critics have designated a distinctive space and bleeding wounds in the passage previ- for “the literary” by identifying those works ously quoted provide the contrastive bodily whose meaning is inherently elastic and mul- coordinates to the muscular, aesthetic, tiple. Maurice Blanchot identifies literary narrative as that which refuses closure and readerly and symmetrical bodies of the healthy mastery—“to write [literature] is to surrender to citizenry. One cannot narrate the story of the interminable” (27). In his study of Balzac’s a healthy body or national reform move- Sarrasine, Roland Barthes characterizes the “plu- ment without the contrastive device of dis- ral text” as that which is allied with a literary value ability to bear out the symbolic potency of whose “networks are many and interact, without any one of them being able to surpass the rest; the message. The materiality of metaphor the text is a galaxy of signifiers, not a structure via disabled bodies gives all bodies a tangi- of signifieds; it has no beginning; it is reversible; ble essence in that the “healthy” corporeal we gain access to it by several entrances, none surface fails to achieve its symbolic effect of which can be authoritatively declared to be without its disabled counterpart. the main one” (5). Ross Chambers’s analysis of oppositionality argues that literature strategi- As Georges Canguilhem has pointed out, cally deploys the “play” or “leeway” in discursive the body only calls attention to itself in the systems as a means of disturbing the restrictive midst of its breakdown or disrepair (209). prescriptions of authoritative regimes (iv). As our The representation of the process of break- study develops, we demonstrate that the strategic down or incapacity is fraught with political “open-endedness” of literary narrative is paral- leled by the multiplicity of meanings bequeathed and ideological significance. To make the to people with disabilities in history. In doing so, body speak essential truths, one must give we argue not only that the open-endedness of lit- a language to it. Elaine Scarry argues that erature challenges sedimented historical truths, NARRATIVE PROSTHESIS | 235

but that disability has been one of the primary out of bounds by the prevailing academic weapons in literature’s disruptive agenda. politics of the day, or one that represents a “criti- 2. In his important study Enforcing Normalcy, cal perversion” (xv). Our use of the phrase implies Lennard Davis theorizes the “normal” body as an both of these definitions in relation to disability. ideological construct that tyrannizes over those The literary object of disability has been almost bodies that fail to conform. Accordingly, while entirely neglected by literary criticism in general all bodies feel insubstantial when compared to until the past few years, when disability studies our abstract ideals of the body, disabled people in the humanites have developed; and “disabil- experience a form of subjugation or oppression ity” as a topic of investigation still strikes many as a result of this phenomenon. Within such a as a “perverse” interest for academic contempla- system, we will argue in tandem with Davis that tion. To these two definitions we would also add disability provides the contrastive term against that the labeling of disability as a “bad object” which the concepts health, beauty, and ability nonetheless overlooks the fact that disabilities are determined: “Just as the conceptualization of fill the pages of literary interest. The reasons for race, class, and gender shapes the lives of those overabundance of images of disability in litera- who are not black, poor, or female, so the concept ture is the subject [Narrative Prosthesis]. of disability regulates the bodies of those who are 6. The title of Thomson’s Extraordinary Bodies: ‘normal.’ In fact, the very concept of normalcy Figuring Disabiltiy in American Culture and by which most people (by definition) shape their Literature forwards the term extraordinary in existence is in fact tied inexorably to the concept order to play off of its multiple nuances. It can of disability, or rather, the concept of disability is suggest the powerful sentimentality of overcom- a function of a concept of normalcy. Normalcy ing narratives so often attached to stories about and disability are part of the same system” (2). disabled people. It can also suggest those whose 3. Following the theories of Lacan, Slavoj Zizek bodies are the products of overdetermined social in The Sublime Object of Ideology extracts the meaning that exaggerate physical differences or notion of the “hard kernel” of ideology. For perform them as a way of enhancing their exot- Zizek, it represents the underlying core of belief icness. In addition, we share with Thomson the that refuses to be deconstructed away by even belief that disabled bodies prove extraordinary the most radical operations of political critique. in the ways in which they expose the variety and More than merely a rational component of ideo- mutable nature of physicality itself. logical identification, the “hard kernel” represents the irrationality behind belief that secures the interpellated subject’s “illogical” participa- WORKS CITED tion in a linguistically permeable system. 4. There is an equivalent problem to the represen- Blanchot, Maurice. The Space of Literature. 1955. tation of disability in literary narratives within Trans. Ann Smock. Lincoln: U of Nebraska P, 1982. our own critical rubrics of the body. The dis- Campbell, Katie. The Steadfast Tin Soldier. Morris abled body continues to fall outside of critical Plains, NJ: Unicorn, 1990. categories that identify bodies as the product Chambers, Ross. Room For Maneuver: Reading the of cultural constructions. While challenging a Oppositional in Narrative. Chicago: U of Chicago generic notion of white, male body as ideologi- P, 1991. cal proves desirable in our own moment within Davis, Lennard. Enforcing Normalcy: Disability, trhe realms of race, gender, sexuality, and class, Deafness, and the Body. New York: Verso, 1995. there has been a more pernicious history of liter- Mitchell, David and Snyder, Susan (eds.) The Body and ary and critical approaches to the disabled body. Physical Difference: Discourses of Disability. Ann In our introduction to The Body and Physical Arbor: U of Michigan P, 1997. Difference, we argue that minority discourses in Schor, Naomi. Bad Objects: Essays Popular and the humanities tend to deploy the evidence of Unpopular. Durham, NC: Duke UP, 1995. “corporeal aberrancy” as a means of identifying Stafford, Barbara Maria. Body Criticism: Imaging the invention of an ideologically encoded body: the Unseen in Enlightenment Art and Medicine. “While physical aberrancy is often recognized as Cambridge, MA: MIT Press, 1994. constructed and historically variable it is rarely Thomson, Rosemarie Garland. Extraordinary Bodies: remarked upon as its own legitimized or politi- Figuring Disability in American Culture and cally fraught identity” (5). Literature. New York: Columbia UP, 1997. 5. For Naomi Schor the phrase “bad objects” Zizek, Slavoj. The Sublime Object of Ideology. New implies a discursive object that has been ruled York: Verso, 1999. CHAPTER 18

The Unexceptional Schizophrenic: A Post- Postmodern Introduction Catherine Prendergast

Postmodern theory has been indispen- impoverished the material they were given— sable to disability studies because it has to such an extent it appeared problematic challenged normativity and destabilized and fragmentary to them? narratives of national progress, social (Jacques Lacan) order, and identity. The essay nevertheless contends that crucial texts of postmodern Postmodern theory owes a great debt to theory have only achieved such schizophrenics—and to cyborgs, border- destabilizations by holding one identity crossers, and other figures culturally stable: that of the schizophrenic. These designated as hybrid. But most belatedly, texts base their understanding of schizo- and most significantly to disability studies, phrenia (and, by extension, the post- the debt is owed to schizophrenics, modern condition) on the writing of a few, those people who bear the diagnosis of distinctly exceptional, schizophrenics. An schizophrenia, along with its legal, social, explosion of civic writing in the mid-1990s and rhetorical consequences. Without by writers who mark themselves specifi- schizophrenics, postmodernity would cally as non-exceptional schizophrenics, struggle to limit its boundaries, for the however, interrogates the desire for the schizophrenic in postmodern theory marks stable schizophrenic, easy to recognize the point of departure from the modern, the and therefore incarcerate, or celebrate, as Oedipal, the referential, the old. Postmodern the occasion demands. Attention to such theory has been indispensable to disability writing reveals schizophrenics to be an studies because it has allowed not only active and growing constituency arguing for a challenge to normativity, but also for for their rights in the public sphere. The the destabilizing of narratives of national essay concludes that recognition of this progress, social order, and identity (Corker constituency and the multitude of voices and Shakespeare). However, crucial texts it represents could greatly inform future of postmodern theory have only achieved theoretical programs that invoke “the these destabilizations by holding one schizophrenic.” identity stable: that of the schizophrenic. “Someone asked us if we had seen a Wasn’t it because they didn’t go far enough schizophrenic—no, no, we have never in listening to the insane that the great seen one,” Deleuze and Guattari assert in observers who drew up the first classifications the final pages of Anti-Oedipus: Capitalism THE UNEXCEPTIONAL SCHIZOPHRENIC: A POST-POSTMODERN INTRODUCTION | 237 and Schizophrenia (380). While this claim, in 1972, in French), the civil rights on its face, is somewhat unlikely for at least movement and the burgeoning women’s Guattari, the more immediate question rights movements would have drained the is, how do they know? The schizophrenic resulting expression of any ironic value. is imagined here to be immediately In the wake of a formerly disadvantaged recognizable with a disorder visible, and group’s clear entrée into the civic sphere, yet, because not seen, at the same time no purchase can be gained through invisible and outside the social order. So claiming—even facetiously—never to distanced from the public domain, the have met a member of that group. That schizophrenic is ripe for appropriation Deleuze and Guattari can make the claim by Deleuze and Guattari who find in this to mediate schizophrenic experience while figure their anti-Oedipus. It’s a peculiarly never having met a schizophrenic says a honorary position the schizophrenic seems great deal about the lack of self-identifying to hold: “The schizophrenic is closest schizophrenics in the public sphere one to the beating heart of reality” (87), “the generation ago. possessor of the most touchingly meager Deleuze and Guattari are hardly the capital” (12). Rosi Braidotti, writing for The only postmodern theorists to ground their Deleuze Dictionary, aptly summarizes the analysis of the late capitalist order in a importance of the schizophrenic to the anti- stereotypical portrayal of the schizophrenic. Oedipal project: “[T]he image of thought Fredric Jameson also delineates the implied by liberal individualism and position of the schizophrenic, analogizing classical humanism is disrupted in favour the postmodern condition to the of a multi-layered dynamic subject. On this breakdown of the signifying chain that level schizophrenia acts as an alternative to characterizes schizophrenic thought: how the art of thinking can be practiced” “[T]he schizophrenic is reduced to an (239). And yet this dynamic subject, always experience of pure material signifiers, or, in seemingly in motion, ever demonstrating other words, a series of pure and unrelated this new mode of thinking, is nonetheless presents in time” (27). Jean Baudrillard, in Deleuze and Guattari’s work to be similarly, analogizes the experience of sharply differentiated from “the schizo,” postmodern reality to the experience reduced by hospitalization, “deaf, dumb of schizophrenia, correcting modernist and blind,” cut off from reality, “occupying notions of the schizophrenic as he does the void” (88). By A Thousand Plateaus, so: “The schizophrenic is not, as generally the schizophrenic has disappeared almost claimed, characterized by his loss of touch entirely, metaphorically consumed by the with reality, but by the absolute proximity rhizome. to and total instantaneousness with things, It is probable, that when Deleuze and this overexposure to the transparency of Guattari proclaimed that “no, no,” they the world” (27). Reality is thus accessible had never seen a schizophrenic, they were to postmodern theory through the thought not expecting to be taken literally. As active patterns of the schizophrenic. What is readers we might try a thought experiment common in these moments of access is the of our own and replace “schizophrenic” certitude with which schizophrenics are in that phrase with “woman,” or the discussed; the schizophrenic is allowed no designation for an individual of any change in position or in thinking, and no racialized group. Such a statement would agenda of her or his own. In the wake of this be so much less likely, because at the time certainty regarding how schizophrenics Anti-Oedipus was published (originally think and how they act, Petra Kuppers’s 238 | CATHERINE PRENDERGAST

comment on her viewing of the work of or cognitive aberrancy projected onto their artist and schizophrenic Martin Ramírez figures. (2–3) is very refreshing: “I can’t know Ramírez— that is the only firm knowledge I can take Following Mitchell and Snyder, it is away from the images and their history of interesting to note that Deleuze and making, storing, display, and criticism” Guattari, to launch their critique of late (189). capitalism, have to distance schizoanalysis Postmodern theory has many roots, from the “real” schizo, stuck in the void. This and in discussing Jameson, Baudrillard, central displacement is necessary to allow and Deleuze and Guattari, those who have for the metaphorizing of schizophrenia specifically drawn upon schizophrenia to along the exclusively positive channels elucidate postmodernity, I am not limiting Deleuze and Guattari allow. However postmodernism to those entities. Nor positive, this metaphorizing enacts what do I find reason to challenge the central Susan Sontag would call a “rhetorical insights of postmodern theory and their ownership” over schizophrenia. Sontag utility to much of disability studies. I do, suggests that the “metaphorical trappings” however, believe that it is productive to that attach to diagnoses have very real consider postmodern attempts to ground consequences, in terms of how people the shared postmodern condition in the seek treatment, or don’t, including what unshared position of the schizophrenic, kind of treatment they seek. She writes: “it and interrogate those attempts within is highly desirable for a specific dreaded the context of the disability rights and illness to come to be seen as ordinary. . . . specifically mental disability rights Much in the way of individual experience movements. My examination of how and social policy depends on the struggle one theoretical program can propose to for rhetorical ownership of the illness: how liberate at the same time as it (certainly it is possessed, assimilated in argument unwittingly) casts certain identities outside and in cliché” (93–94). the social order—whether in celebratory Clichés are, by definition, metaphors that fashion, as in Deleuze and Guattari or have become too stable. The appropriation Jameson, or in pathologizing fashion, as of the schizophrenic by postmodern in Baudrillard—draws inspiration from theory is a cliché, one that posits David T. Mitchell and Sharon L. Snyder’s continually the rhetorical exceptionalism recollection in Narrative Prosthesis that of schizophrenics. This stability mirrors the the identity work conducted by race and medicalized investment, which, as Snyder sexuality studies historically involved and Mitchell have observed in “Disability distancing people of color and women from Haunting in American Poetics,” finds the “real” abnormalities with which they disability to be “an organic predicament had long been metaphorically associated: based on the common sense notion that disability status cannot be altered” (2). As a As feminist, race, and sexuality studies sought result of this common sense notion, Snyder to unmoor their identities from debilitating and Mitchell argue, the disabled are not physical and cognitive associations, they allowed to enter the history of U.S. social inevitably positioned disability as the ”real” conflict as an active constituency arguing limitation from which they must escape. . . . Formerly denigrated identities are “rescued” for their rights within the public sphere. by understanding gendered, racial, and Postmodern theory values schizophrenics sexual differences as textually produced, precisely because it imagines them distancing them from the “real” of physical insulated from civic life. They are to remain THE UNEXCEPTIONAL SCHIZOPHRENIC: A POST-POSTMODERN INTRODUCTION | 239 the “exceptional, private citizenry” that systems for parenting stressed nearly Snyder and Mitchell identify as typical sadistic obedience and control is a fact of the role given to the disabled. There is, about which analyzers of Daniel Schreber’s however, an increasingly public citizenry pathology make some hay.1 Also well- of schizophrenics who claim the following: noted is that Schreber’s schizophrenia did to speak publicly, particularly on issues not manifest until he was in his forties in that affect their lives; to self-identify as the midst of his career.2 He recovered from schizophrenic without having to embrace his first breakdown only to be incarcerated the stigma associated with the term nor for nearly a decade when he was in his undersign any medicalized investment; fifties. While in the asylum, he recorded his to found and use their own press organs observations of his body and his religious to further their causes (in this way, very conceptions including those supernatural much the “bodies with organs”); to be matters “which cannot be expressed in considered in public addresses, and finally, human language; they exceed human to enjoy a rhetorical position and a life that understanding” (Schreber 16). Schreber is not predicated on complete absence of was keen to publish his manuscript (his impairment. In short, they claim the right family, fearing embarrassment, not so very to unexceptional instability, which is not keen), however, inmates of asylums were something postmodern theory has readily not permitted by law to publish their work. granted them. In 1902, after a protracted legal battle, Schreber secured his release entering into the public sphere physically, and soon THE MODEL SCHIZOPHRENIC after, rhetorically. His Memoirs, published It is not surprising that the postmodern the following year, were quickly recognized theory I have reviewed should hold the as a critical account of psychosis. He had identity of schizophrenics so constant, become fully exceptional. Lacan, who because much of it is based on a few, rather analyzed Schreber through his Memoirs exceptional schizophrenics. The history of wrote: “That Schreber was exceptionally perhaps the most exceptional I will turn gifted, as he himself puts it, at observing to here: Judge Daniel Paul Schreber. As phenomena of which he is the center and Rosemary Dinnage observes, Schreber’s at searching for their truth, makes his 1903 Memoirs of My Nervous Illness, testimony incomparably valuable” (233, something of a self-report, is “the most emphasis Lacan’s). written-about document in all psychiatric Undeniably, however, what made Judge literature. . . . Everyone has had something Schreber most exceptional to modern to say about Schreber” (xi). Schreber’s commentators including Lacan was Freud’s writings cannot help but come to us as 1911 analysis of the Schreber case. Schreber metaphor, saturated with the resonances might at first seem an unusual subject of his commentators: Freud, Jung, for Freud to analyze given that Freud Lacan, and Deleuze and Guattari, chief considered schizophrenics unfit subjects among them. Equally exceptional as the for the talking cure. Colin McCabe records, reception of his work were Schreber’s life “Any psychotic patient that presented him and the course of his illness. A prominent or herself in Freud’s consulting rooms German judge, Schreber was the son of would, by the very nature of their condition, Moritz Schreber, an immensely influential swiftly either refuse treatment or be referred though controversial German authority on to a hospital” (ix). McCabe puzzles why on child-rearing. That Moritz Schreber’s Freud did not read Schreber’s Memoirs 240 | CATHERINE PRENDERGAST

until seven years after its publication, doctrine” (19) suggests that Schreber even though it had been a topic of great occupies only a qualified rhetorical position discussion in psychiatric circles. That Freud in Anti-Oedipus, one that is valuable, did eventually turn his attention to the but provisional, even on the subject of Schreber case McCabe credits to Freud’s fear Schreber’s own experience. Deleuze and that psychoanalysis, particularly its tenets Guattari find in Schreber’s memoirs the grounding the relationship between the seeds of the break from representation, but unconscious and the conscious in sexuality, they can only access it through an act of faced threats from competing biological representation, one that grants Schreber no and social theories of the psyche. Schreber, firmer rhetorical ground than he enjoyed to Freud, then, was also exceptional; Freud’s through Freud’s text. location of Schreber’s psychosis in repressed Where Deleuze and Guattari find homosexuality was to be the exception that Schreber through Freud, Jameson finds proved his rule of neurosis. him through Lacan: “I have found Lacan’s Freud’s defensive and unconvincing account of schizophrenia useful here not analysis of Schreber through the Memoirs, because I have any way of knowing whether (“very unsatisfactory” Jung would deem it),3 it has clinical accuracy but chiefly because— made Schreber the perfect platform from as description rather than diagnosis—it which Deleuze and Guattari could launch seems to me to offer a suggestive aesthetic their assault on psychoanalytic theory’s model” (26). Through Jameson’s formulation complicity with the capitalist order. Judge of Schreber’s condition, we can understand Schreber, along with the also exceptional schizophrenia as that state which enacts Antonin Artaud, became their model disruptions of temporality. Jameson cites as schizophrenics. But it was Schreber who further examples of such disruption the work allowed for the most direct attack on Freud. of John Cage and Samuel Beckett, neither Deleuze and Guattari declared that Freud of whom were diagnosed schizophrenics. had done Schreber a great disservice in his Cage and Beckett quickly, however, become reading of Memoirs, cutting off Schreber metaphors of schizophrenia through rhetorically at the kneecaps. “Not one word Jameson’s analysis. In the end Jameson is retained,” they complained, of Schreber’s leaves us with an aestheticization of the original work in Freud’s treatment. Schreber, schizophrenic experience. Schizophrenia they wryly remarked, was not only sodomized is always/ already artistic, always/already by rays from heaven (as Schreber in his literary, always/already metaphorical. What Memoirs describes), but was “posthumously might usefully rescue schizophrenia from oedipalized by Freud,” who, they point out, these metaphoric entrapments is a shift never met his “patient” in vivo (57). in focus toward a rhetorical exploration, The concern Deleuze and Guattari have one that examines the circumstances for Schreber seems to be one of recuperating of publication of schizophrenic writing, his rhetorical position; Schreber, thus situating that writing within, as Snyder and rhetorically enabled, can become the agent Mitchell have suggested, histories of conflict who can trick Freud in the session that never over who may take up space in the public occurred, breaking through “the simplistic sphere. terms and functions of the Oedipal triangle” (14). However, Deleuze and Guattari NEWS FROM THE VOID themselves evince less than total confidence in Schreber’s self-account. Their remark, Two publications by schizophrenics “if we are to believe Judge Schreber’s entering the public sphere in 1995 THE UNEXCEPTIONAL SCHIZOPHRENIC: A POST-POSTMODERN INTRODUCTION | 241 form an interesting juxtaposition in mental health clinics to register mentally ill this regard. One will be familiar and voters of any party. After his voices stopped, widely recognizable as exceptional: the however, he decided not only to help the publication of Ted Kaczynski’s “Industrial mentally ill enter the polity via the vote, Society and its Future” [commonly known but also to use rhetoric as a tool to increase as the “Unabomber manifesto”] in The their civic presence. He founded New York New York Times, a 36,000 word rant against City Voices primarily as a journal to inform modernity Kaczynski would go so far as to about legislative issues, but writing the kill to see published. The other publication journal itself served its own enfranchising is much less well known. In 1995, Editor- purposes. in-Chief Ken Steele released the inaugural A typical example of a story from New edition of New York City Voices: A Consumer York City Voices, written by Steele himself Journal for Mental Health. To appreciate in the July/August 1999 issue, is not the profundity of this publication, a short rhetorically exceptional in any of the ways biography of Steele is appropriate. Steele postmodern theorists might expect: began hearing voices in 1962 when he was fourteen years old. The voices urged him Did you know that only one-half of one repeatedly to kill himself. After a few failed percent of those Americans with disabilities attempts to follow their orders, Steele presently receiving Social Security Disability Insurance (SSDI) or Supplemental Security ran away from home, and was shortly Income (SSI) are employed? How many more afterward diagnosed with schizophrenia of us do you think would like to work but by a physician. At age seventeen he took off cannot, because we would lose cash benefits for New York City and was quickly ushered if we earn over $500 a month and Medicare into the world of male hustling. Over the and Medicaid health coverage if we work next thirty years he would be homeless, more than three years? raped, shuttled between several psychiatric hospitals, and he would attempt to end his What follows is a plea to support the Ticket life several more times. In 1995, then under to Work and Self-Sufficiency Program. treatment with a new medication, Ken There is nothing distinctly disorganized Steele’s voices stopped. Five years later, about this opening of rhetorical questions, Steele died of a heart attack, possibly related which lays out the false choice Steele sees to obesity that has since been identified as between accepting work and accepting a common side effect of the medication he health coverage. I would even venture had been taking. to say that were it not for Steele’s self- Significantly, Steele had actually begun identification as mentally ill throughout the engaging in advocacy slightly before the article (and his invocation of an audience end of his voices. In order to fulfill the of the mentally ill), there would be nothing mandated “structured activity” as part of his to mark Steele as schizophrenic. care, he decided to found a voter registration Another writer for the journal, Lisa project for the mentally ill. He had become Gibson, in an article advocating for alarmed at growing threats to Social insurance parity in the Jan/Feb 2000 Security Disability and proposed cutbacks issue, writes that her manic depression to a range of other services the mentally ill has been the most crucial element of her rely on: housing, mental health clinics, and life, exceeding the force of other social research. While he was still coping with his categories to which she also belongs. She voices, he took a folding table and voter begins by describing the importance of registration cards to homeless shelters and narrative in self-identification: 242 | CATHERINE PRENDERGAST

Charles Dickens began his book David vantage point thirty years hence, we will Copperfield with the words “I am born.” If see it as the moment mental disability I were to write an autobiography, I would narratives began appearing en masse— begin with the words “I am born with manic- which explains why the most blatant depression,” for this illness has been the appropriations of the schizophrenic seem single most defining factor of my life and my to end in the late 1980s. There is little getting personality. No other factor—being female, being southern, being the middle child—has around the fact that the explosion of civic had such an impact on me as this disease. rhetoric by schizophrenics corresponds with the advent of atypical antipsychotic As Steele notes in The Day the Voices medications in the 1990s. The first mass- Stopped: market magazine authored primarily by schizophrenics, Schizophrenia Digest, Most striking about New York City Voices began in 1994, for example, and continues has been the inclusion of personal stories to this day to chronicle schizophrenics’ by people with mental illness, written in struggles with social discrimination, limited our own words and under our own bylines treatment options, and those medications (often accompanied by a photograph of the that may have allowed for certain forms contributor). A bold but necessary move, self- disclosure is a first step toward successfully of expression, but with troubling and addressing the stigma associated with being sometimes life-threatening side-effects. mentally ill. (221) Within the Digest’s pages, schizophrenics write of the need to speak in order to break This self-disclosure is a defining feature through the assumption of the normative of a rhetoric self-conscious of the usual audience that informs most published position of the schizophrenic rhetor; material. As Vicky Yeung writes of her typically schizophrenics are considered experience reading personal finance books beings with speech, but speech that is written from a normative perspective: generally treated as an index of sanity or insanity, with referentiality only to [T]he author assumes I’m not limited by diagnostic criteria, and without referential- my mind’s matter as to how much money I ity to the civic world. Self-disclosure is thus conceivably can make. These writers give tips a necessary component of civic rhetoric that are unhelpful for me, like increasing my for these authors, involving the investiture income through investing in mutual funds, of the previously stigmatizing moniker working at several jobs, etc., as if I could do schizophrenic with new meaning. These any of those things. Really, they’re writing for writers appropriate the term schizophrenic the “normal healthy mind” audience. (47) in much the same way as the gay community successfully appropriated the previously In this passage Yeung elucidates her ex- denigrating term queer. clusion from the normative processes of Snyder and Mitchell have identified late capitalism, incapable as those processes the 1970s as the moment disability are of incorporating a non-incarcerated, memoirs began to be published en masse: non-revenue producing, non-exceptional “These first person stories interrupted subject. Her quotation marks around several hundred years of inaccurate “normal healthy mind” indicate that she disability representation by interested does not consider herself “exceptional,” professionals in medicine, rehabilitation, except that normativity makes her so. and other caring professions” (9). When As Daniel Frey, successor to Steele as we look back at the mid-1990s from a Editor-in-Chief of New York City Voices THE UNEXCEPTIONAL SCHIZOPHRENIC: A POST-POSTMODERN INTRODUCTION | 243 has observed of the erasure of this mentality are severely policed and bracketed non-exceptional subject through the off into deviancy” (59). The public seemingly exceptionalizing of schizophrenics: only desires the stable schizophrenic, easy to incarcerate, or easy to celebrate The extremes of schizophrenia get the most as the occasion requires. The public does publicity, like the genius John Nash on the one not want to allow for fluctuation between hand and the subway killer Gary Goldstein states, and even less for the possibility on the other. Every day people like me get that both states exist at once. A genuinely overlooked even though we compose the vast majority of schizophrenics. The mental postmodern perspective would not insist health consumer movement is the last great that schizophrenic rhetoric be fixed, but civil rights movement in this country. rather would allow for Bill MacPhee, Lisa Gibson, Vicki Yeung, and Daniel Frey to Frey asks here for a move away from continue to engage in civic rhetoric, while both pathologized and vaunted genius/ being schizophrenic. It would allow them to artist versions of schizophrenics; he occupy the contested public sphere, bringing suggests movement toward the vast to it the force of their narratives. middle ground of schizophrenics who The narrative power of fluctuations hold unexceptional jobs, or move through between mental states is perhaps best multiple hospitalizations without either captured by Richard MacLean’s memoir killing anyone or winning Nobel prizes. Recovered, not Cured. MacLean begins the Frey’s speech does not ask for leaps of work on a past moment of impairment, set interpretation, does not mark itself as any off in space and time: more “everyday” than he marks himself. He simply heralds the end of the exemplar Another World, August 1994. I am crouching schizophrenic. He asks that schizophrenics in an alleyway. They can’t see me here, so for be able to participate in, as well as critique, a moment I am safe. There must be hundreds late capitalism; one wonders what of loudspeakers projecting secret messages, Deleuze and Guattari would have made and umpteen video cameras tracking every move I make (xi). of schizophrenic Bill MacPhee, publisher of Schizophrenia Digest in which Vicky Yeung’s critique of capitalism appears, who The book ends in “The Present”: affirmed that his life was changed in 1994 by the book “101 Ways to Start a Business Nowadays, I say that I am recovered, not cured. I have a job as a graphic designer with Little or No Capital.” His business? A and illustrator, I have a band in which I do magazine for schizophrenics. vocals and guitar, I have my friends and my To see the “ordinary” schizophrenic is, in family. I pay my taxes and do the dishes; short, to give up the stable schizophrenic. I’m independent. I have achieved a sense of The identity of being a schizophrenic, normality and live with the knowledge that because it is tied to a history of having been a couple of pills a day will keep me slightly diagnosed with the condition, may remain lethargic yet “sane” at the same time. I can constant, but impairments fluctuate in live with that. (174) time. As Kuppers notes, “Mental health is a contested terrain: on the one hand, mental The actual structure of MacLean’s text normalcy is a problematic concept given belies the sense of progression that these the malleability and changing nature of two time points imply. Interspersed human mental and emotional states. On through MacLean’s narrative are his the other hand, certain permutations of own illustrations, many created “years 244 | CATHERINE PRENDERGAST

ago,” as well as numerous emails from should appear problematic. It should schizophrenics he has received since appear fragmentary. But it should appear, beginning a life of public advocacy. This and once appearing, be considered structure enacts a merging of all states in unexceptional.4 the present, a time when “sane” appears only in quotation marks. MacLean NOTES acknowledges in a section entitled “A Kind of Closure”: 1. See, for example, Soul Murder by Schatzman. 2. Schreber was not diagnosed schizophrenic during his life (the diagnosis not then being in If I had my way, of course, all this would never use), however, Deleuze and Guattari, typical of have happened. However, I hoped that by his modern commentators, ascribe him that writing about it I might be able to seal off all condition. the chaos I had experienced; seal it up with 3. Jung’s response quoted in Dinnage, and further sealing wax, put it in a cupboard or throw elaborated in McCabe. it to the sea. It hasn’t worked out quite so 4. Many thanks to the JLD reviewers for their invaluable comments on an earlier version of simply. To this day, although my illness is at a this essay. manageable level, I am residually delusional and sometimes read odd meanings into things. (172) WORKS CITED There is, MacLean asserts, no definitive Baudrillard, Jean. The Ecstasy of Communication. closure for him. Trans. Bernard Schutze and Caroline Schutze. New I would like to return, in only provisional York: Semiotext(e), 1988. closing then, to the quote from Lacan I Braidotti, Rose. “Schizophrenia.” The Deleuze Dictionary. Ed. Adrian Parr. New York: Columbia selected for the epigraph, a reflection on UP, 2005, 237–40. schizophrenic voice: “Wasn’t it because Corker, Mairian and Tom Shakespeare, ed. Disability/ they didn’t go far enough in listening to the Postmodernity: Embodying Disability Theory. New insane that the great observers who drew York: Continuum, 2002. up the first classifications impoverished Deleuze, Gilles and Félix Guattari. A Thousand Plateaus: Capitalism and Schizophrenia. Trans. Brian the material they were given—to such Massumi. Minneapolis: U of Minnesota P, 1987. an extent it appeared problematic and ——. Anti-Oedipus: Capitalism and Schizophrenia. fragmentary to them?” Lacan suggests Trans. Robert Hurley, Mark Seem, and Helen R. that schizophrenics had not been listened Lane. Minneapolis: U of Minnesota P, 2000. to except metaphorically. The problem Dinnage, Rosemary. Introduction. In Memoirs of My Nervous Illness by Daniel Paul Schreber, eds. Ida according to Lacan is that these great Macalpine and Richard A. Hunter, xi–xxiv. New observers thought that what schizophrenics York: New York Review of Books, 2000. were saying could not really be what they Freud, Sigmund. The Schreber Case. Trans. Andrew were actually saying. It would have to be Webber. New York: Penguin, 2002. something else. Lacan was, ironically, Frey, Daniel. “First Break: Three Years Later.” New York City Voices, www.nycvoices.org, posted 2002. talking about the much-observed Schreber, Gibson, Lisa. “Parity Matters to Me.” New York City who died in an asylum four years after Voices, www.nyvoices.org, posted 2000. the publication of the Memoirs. Let us Jameson, Frederic. Postmodernism, or, the Cultural change Lacan’s “it,” though, so it no longer Logic of Late Capitalism. Durham: Duke UP, 1992. stands simply for the utterances of one Kuppers, Petra. The Scar of Visibility: Medical Performance and Contemporary Art. Minneapolis: schizophrenic at one moment in time. Let U of Minnesota P, 2007. us have “it” stand in for all schizophrenic Lacan, Jacques. The Seminar of Jacques Lacan utterances at all points in time. That “it” Book III: The Psychoses 1955–1956. Trans. Russell THE UNEXCEPTIONAL SCHIZOPHRENIC: A POST-POSTMODERN INTRODUCTION | 245

Grigg. Ed. Jacques-Alain Miller. New York: Norton, Trans. Ida Macalpine and Richard A. Hunter. New 1997. York: New York Review of Books, 2000. MacLean, Richard. Recovered, Not Cured: A Journey Snyder, Sharon L. and David T. Mitchell. “Disability through Schizophrenia. Crows Nest, Australia: Haunting in American Poetics.” Journal of Literary Allen & Unwin, 2003. Disability 1.1 (2007): 1–12. McCabe, Colin. Introduction. The Schreber Case. By Sontag, Susan. Aids and Its Metaphors. New York: Sigmund Freud, trans. Andrew Webber, vi–xxii. Farrar, Straus, and Giroux, 1988. New York: Penguin, 2002. ——. Illness as Metaphor. New York: Farrar, Straus and Mitchell, David T. and Sharon L. Snyder. Narrative Giroux, 1978. Prosthesis: Disability and the Dependencies of Steele, Ken and Claire Berman. The Day the Voices Discourse. Ann Arbor: U of Michigan P, 2001. Stopped. New York: Basic Books, 2002. Schatzman, Morton. Soul Murder: Persecution in the Yeung, Vicky. “Born with a Gift and a Purpose.” Family. New York: Random House, 1973. Schizophrenia Digest 5.3 (2007): 47. Schreber, Daniel Paul. Memoirs of My Nervous Illness. CHAPTER 19

Deaf Studies in the 21st Century: “Deaf-Gain” and the Future of Human Diversity H-Dirksen L. Bauman and Joseph J. Murray

DEAF-GAIN: COGNITIVE, CULTURAL, While having to argue for the most basic AND CREATIVE DIVERSITY right of all—the right to exist—Deaf Stud- ies is put on the defensive. However, schol- Given the threats posed to the signing ars are beginning to recognize that the Deaf community by the medical and edu- most vigorous response would be to cease cational institutions of normalization, the arguing against medical and educational Deaf community and Deaf Studies schol- institutions of normalization, and instead, ars find themselves cornered into the fun- go on the offensive by reframing represen- damental existential question: Why should tations of deafness from sensory lack to a deaf people continue to exist? Indeed, on form of sensory and cognitive diversity that what grounds can one argue for the pres- offers vital contributions to human diver- ervation of what most consider a disabil- sity. Within the frame of human diversity, ity? As Burke (2006) notes, such bioethical Deaf Studies scholars are inquiring into arguments hinge on the demonstration of the insights that may be gleaned from deaf the intrinsic and extrinsic value of Deaf people whose highly visual, spatial, and communities and their languages. Intrin- kinetic structures of thought and language sic arguments seek to prove the worth of may shed light into the blindspots of hear- deaf people and sign languages for their ing ways of knowing. own good, whereas extrinsic arguments The overarching extrinsic value of Deaf demonstrate the useful contributions of communities and their languages, then, deaf people and their languages for the may best be explained by the emerging greater good of humanity. Although intrin- discipline of biocultural diversity, a field sic arguments have long been made (i.e., that has arisen as an area of transdiscipli- Deaf culture and sign languages should be nary research concerned with investigat- preserved because they are as valid as other ing the links between the world’s linguistic, cultures and languages), extrinsic argu- cultural, and biological diversity as mani- ments have not yet been fully developed or festations of the diversity of life. The understood. Future directions in the field impetus for the emergence of this field of Deaf Studies may be thought of as the came from the observation that all three vigorous exploration and demonstration of diversities are under threat by some of the important extrinsic value of Deaf com- the same forces, and from the percep- munities and their languages. tion that loss of diversity at all levels spells DEAF STUDIES IN THE 21ST CENTURY | 247 dramatic consequences for humanity and form of visual-spatial language that pro- the earth (Maffi, 2005). A body of research vides opportunities for exploration into has begun to link the decreases in biocul- the human character. In this spirit, Gallau- tural and linguistic diversity, noting that det University’s Vision Statement commits when an indigenous language dies, the to promoting “the recognition that deaf unique knowledge of the local environ- people and their sign languages are vast ment, developed over centuries, dies with resources with significant contributions to it (Harmon, 2002; Maffi, 2005; Skutnabb- the cognitive, creative, and cultural dimen- Kangas, 2000). Most predictions suggest sions of human diversity” (http://www.gal- that within the next century, half of the laudet.edu/mission.xml). In what follows, world’s 6,000 spoken languages will dis- contemporary and future directions for appear, which is at the rate of a language each of these forms of human diversity and death every two weeks (Crystal, 2002). “Deaf-gain” will be discussed as emerging There are currently no statistics about the and future trajectories of the field of Deaf number of signed languages in the world, Studies that collectively demonstrate the and clearly, when a signed language dies, value of Deaf Studies to the academy and there may not be the same amount of bio- Deaf communities to humanity. logical and environmental knowledge lost with it. However, in the same vein, Deaf COGNITIVE DIVERSITY AND Studies scholars may begin to add to the DEAF-GAIN: REDEFINING THE notions of linguistic and biodiversity new NATURE OF LANGUAGE categories of diversity foregrounded by signed languages—namely, cognitive, cul- The prime example of the extrinsic value tural, and creative diversity. of deaf people and their languages is the Once we place Deaf communities and wholesale redefinition of language that their languages within the framework of has come about as a result of sign language biocultural diversity, a new frame emerges. studies. Just as we once thought the flat The task of Deaf Studies in the new century Earth to be at the center of the universe, is to ask a fundamental question: How does we once assumed that language could being Deaf reorganize what it means to be only take the form of speech. Now that we human? Indeed, what dramatic conse- know the brain may just as easily develop quences would arise from the (neo)eugenic a signed as a spoken language, we must drive toward normalization? Embracing reconfigure our understanding of lan- deaf people and their languages will invari- guage, in all its complexities. Four decades ably lead toward a deeper understanding of sign language research has now deep- of the human proclivity for adaptation. ened our awareness of the nature of lan- In the face of sensory loss, we may better guage—from language acquisition, struc- appreciate the dynamic and pliable nature ture, and more. We now know that the fun- of the mind and the human will to com- damental character of the brain is plastic- municate and to form community. In this ity and flexibility (Petitto, Zatorre, Gauna, light, deafness is not so much defined by a Nikelski, Dostie, & Evans, 2000). This rede- fundamental lack, as in hearing loss, but as fining would not have come about without its opposite, as a means to understand the the study of signed languages, and may be plenitude of human being, as Deaf-gain.1 seen as the initial instance of Deaf-gain. Deaf-gain, as we explore later, is the Due to the existence of signing commu- notion that the unique sensory orienta- nities, linguists and anthropologists have tion of Deaf people leads to a sophisticated been able to peer into the development of 248 | H-DIRKSEN L. BAUMAN AND JOSEPH J. MURRAY

language, revealing insights into the and increased spatial cognition (Bellugi, debates over the innateness or social ori- O’Grady, Lillio-Martin, O’Grady Hynes, gins of language acquisition (Sandler, Meir, Van Hoek, & Corina, 1989). We may take Padden, & Aronoff, 2005). In addition, sign these indications of increased visual- languages have also provided insight into spatial cognition and develop them into new and revived theories of the origins of future research into practices of visual language (Armstrong, 2002; Armstrong & learning for all sighted individuals. The Wilcox, 2007; Armstrong, Wilcox, & Stokoe, benefits may be far reaching, for as Stokoe 1995; Corballis, 2003; Stokoe, 2001). The recognized, “vision may have an advan- implications of these discoveries extend tage, for it is neurologically a richer and into the core of what it means to be human, more complex physiological system than but have yet to be applied to Deaf educa- hearing. Sight makes use of much more of tion. As Stokoe (2001, p. 16) wrote, “the the brain’s capacity than does hearing” (p. status of deaf people, their education, their 20). Given the drive to diversify education opportunities in life, and the utilization of along the lines of “multiple intelligences” their potential—all these could be much (Gardner, 1993), it would only makes enhanced if we understood the way deaf sense that the most visually oriented of all people still make language may be the way humans would take the lead toward future the whole human race became human.” experimentation in visual learning. As a result of the natural human procliv- As testimony to the promises of the field ity to sign, hearing parents are increasingly of visual language and visual learning, using sign language, with results that sug- the National Science foundation recently gest increased linguistic, cognitive, and funded a Science of Learning Center at social development. Gallaudet University to “gain a greater understanding of the biological, cognitive, linguistic, sociocultural, and pedagogical COGNITIVE DIVERSITY AND conditions that influence the acquisition DEAF-GAIN: VISUAL LANGUAGE/ of language and knowledge through the VISUAL LEARNING visual modality” (VL2, 2008; http://vl2.gal- Another significant area of future research laudet.edu/). Given the immense amount in the area of Deaf-gain is the particular, of information processed visually2 (for highly developed visual ways of being in sighted people), it is not surprising that the world brought about by the unique learning may be enhanced when pedago- sensory orientation of deaf individuals and gies focus on transmitting visual infor- communities (Bahan, 2008; Marschark, mation (Gardner, 1993; Moore & Dwyer, 2003). The link between enhanced visu- 1994). This project goes beyond the Deaf ospatial abilities and use of sign lan- education model of addressing alterna- guages has been documented in studies tive (read: remedial) ways of teaching deaf of speed in generating mental images people, to ask how deaf people’s visual (Emmorey & Kosslyn, 1996; Emmorey, orientation to the world may be able to Kosslyn, & Bellugi, 1993), mental rota- offer hearing people new ways of learning, tion skills (Emmorey, Klima, & Hicock, even in fields traditionally dominated by 1998), increased facial recognition skills an auditory/phonetic orientation, such as (Bettger, Emmorey, McCullough, & Bel- literacy development. Indeed, as textuality lugi, 1997), increased peripheral recog- in the 21st century is becoming increas- nition skills (Bavelier, Tomann, Hutton, ingly visual and digital, there is a trend Mitchell, Corina, Liu, & Neville, 2000), away from traditional print-based texts to DEAF STUDIES IN THE 21ST CENTURY | 249 video and multimedia texts. Insights from mode like film, the act of inference mak- the world’s most visually acute people may ing will be necessary if one is to achieve provide insights on how we may all process a richer interpretation of the content” (p. information visually. 150). Clearly, one may exercise inference If this is the case, then future direc- and other critical thinking strategies using tions of Deaf Studies and Deaf education a nonwritten language such as ASL or may have less to do with audiological loss through watching silent films. than Deaf-gain—that is, a bilingual, visual Evolving definitions of literacy are hap- learning environment could be so rich in pening in tandem with emerging video processing information in multiple chan- technologies that allow greater ease of pro- nels that hearing parents would want their ducing academic texts in ASL. Once video children to go to sign language schools. In journals such as the Deaf Studies Digital this scenario, Deaf education would give Journal (dsdj.gallaudet.edu) mature, stand- way to dual-language education, open to ards for academic publishing in signed all who desire such a learning environ- languages will develop. The significance ment. Two examples of these types of bilin- of academic discourse in ASL may be most gual sign language schools are P.S. 47: The prominent if the visual, spatial, and kinetic ASL–English Bilingual School in New York dimensions of the language are explored City and The Cassato School, near Torino, for their greatest rhetorical power. For Italy. Indeed, before such a paradigm shift example, imagine how precisely an ASL- were to take root in a systematic way, the fluent biology professor would describe status of sign languages as academic lan- the process of cell mitosis, using ASL’s rich guages would have to be reconceived. classifier system to indicate pairs of chromosomes splitting and cell walls dividing, so that students may witness the linguis- COGNITIVE DIVERSITY AND tic reenactment of a physical process, or DEAF-GAIN: SIGN LANGUAGES AND the precise description of the French phi- ACADEMIC DISCOURSE losopher Michel Foucault’s notion of the Traditionally, signed languages have been “microphysics of power,” which would be seen as, essentially “oral” languages as they shown as a dispersion of multiple sites of have no written form.3 Common wisdom power throughout society, rather than a holds that writing is an essential element to more traditional top-down model of power. the development of literacy, as essential as The point here is that sign languages are water is to swimming. The word “literacy,” rich in what Taub (2001) calls “metaphoric after all, derives from the Greek littere, or iconicity,” in which complex ideas are “written letter.” However, as Kuntze (2008) demonstrated through visual-spatial met- has suggested, just as definitions of lan- aphors. Such a language does not lack in guage have changed in the wake of the abstraction, but gains in clarity of the con- validation of sign languages, so may the crete representation of complex ideas. definition of literacy. Kuntze shows how This unique advantage of sign languages one may demonstrate characteristics of lit- was originally articulated by the early 19th- erate thought in written, signed, and visual century teacher of the deaf, Auguste Bebian, modalities. One such characteristic, notes who believed that “sign language has a Kuntze, is inference making. Whether the superior capacity for expressing mental information that an individual receives “is operations” (1984, p. 151). The difference, expressed in written language or in a differ- Bebian explains, is that spoken language is ent language such as ASL or in a different fundamentally arbitrary, but discourse in 250 | H-DIRKSEN L. BAUMAN AND JOSEPH J. MURRAY

sign language, would “frequently acquire tial of Deaf-gain in this area. A rigorous a self-evident certainty or become a mani- educational film program in deaf schools fest absurdity to all” (p. 151). Indeed, the would have the added benefit of inserting a speaking biology student could say, “the deaf public voice into popular media. chromosomes split,” whereas the signing biology student would reveal the internal CREATIVE DIVERSITY AND mental images of her conception of how the DEAF-GAIN: DEAF SPACE AND chromosomes split visually and spatially. THE BUILT ENVIRONMENT Similarly, the philosophy student would reveal the degree of precision of his under- Although Deaf Studies is inherently inter- standing of Foucault’s unique conception disciplinary, one may not immediately of “power” through the spatial arrange- think of architecture as an important area ment of his description. Clearly, the valid- of creative exchange. However, in 2005, ity of such observations about the unique Gallaudet University hosted a two-day qualities of intellectual discourse in sign “Deaf Space” workshop, which resulted in language now lay before the fields of Deaf what has grown into a series of Deaf Stud- education, Deaf Studies, and linguistics to ies courses, the Gallaudet University Deaf explore this vein of potential Deaf-gain. Space Design Guide, and the incorporation of some key Deaf Space principles in the Sorenson Language and Communication CREATIVE DIVERSITY AND Center at Gallaudet. DEAF-GAIN: FILM LANGUAGE/SIGN The Deaf Space project does not focus LANGUAGE on issues of accommodation, but rather on Comparisons have often been made Deaf cultural aesthetics that are embodied between the film language and sign lan- in the built environment. In the original guages (Bahan, 2006; Bauman, 2006; Sacks, workshop in 2005, a common aesthetic 1990). In addition to a traditional linguis- emerged that was described as organic, tic means of describing sign languages curvilinear, and bathed in light. Since that through phonology, morphology, and syn- time, students and faculty have researched tax, one may also see fluent signers as eve- core issues, such as the qualities of light- ryday filmmakers, a skill that is heightened ing, proxemics of signers, and the tension in the literary and dramatic uses of sign between open, visually accessible spaces language. Indeed, when seen through lens and privacy. Although the notion of Deaf of film grammar (Arijon, 1991), sign lan- space generates from designing the opti- guages present a constant tableau of close- mal environment for Deaf signers, the basic up and distant shots, replete with camera precept is that Deaf space principles would movements and editing techniques. Given create exceptional buildings for everyone, such an intimate, cognitive relationship regardless of audiological status. with cinematic grammar, we must wonder Further study of Deaf space and planning what innovations might emerge if we were in the future of Deaf Studies may also lead to invest in the cinematic education of the toward an understanding of the urgency that next generation of deaf children. Again, no Deaf communities may be strengthened by research has been conducted to this point gaining control over the spaces where deaf about the potential innovations that would individuals live. As deaf individuals are emerge from Deaf filmmakers, but such born into a dispersion among hearing fam- exploration is clearly an important trajec- ilies, they are subject to a diasporic condi- tory for Deaf Studies to explore the poten- tion from the onset (Allen, 2007). Indeed, DEAF STUDIES IN THE 21ST CENTURY | 251 one of the primary differences between the guage make it a particularly rich medium linguistic minority of sign language users for poetic image and metaphor (Bauman, and other language groups is that deaf 2008; Bauman, Nelson, & Rose, 2006; Dav- people have never occupied a homeland. idson, 2008; Taub, 2001; Wilcox, 2000). They may have congregated at residential For centuries, writers have been seeking schools, but these spaces were designed on to extend both the visual and performa- 19th-century asylum architecture—hardly tive aspects of literature, resulting in vari- the autochthonous creation of a group with ous experimental forms, from the unity of deep ties to the land. From schools to Deaf painting and poetry in the works of Wil- clubs, Deaf spaces have generally reflected liam Blake to concrete poetry, slam, and the design of hearing architects. On a per- performance poetry. Sign poetry extends sonal level, however, deaf people have a both the performative and visual traditions long tradition of home renovations that of literature into new forms. Sign language bear similarities—such as increasing the poetic practice has become increasingly visual reach throughout a house—that per- innovative in its use of visual textual forms, mit greater visual communication, as well as sign language poets have experimented as a sense of connection (Malzkuhn, 2007). with the interaction of the components of The cultural significance of home renova- film language—camera movement, edit- tions and the deaf relationship to place ing, visual prosody, mise en scene—and cannot be underestimated, for as Findley sign language. Ella Mae Lentz’s collabora- (2005, p. 5) notes, “not having control of tion with Lynette Taylor (Lentz, 1996), and the space one is occupying is in some way Dutch poets Wim Emmerik and Giselle demoralizing.” For this reason, Deaf peo- Meyer’s collaboration with Anja Hiddinga ple have always felt the need to dream of and Lendeert Pot (Hiddinga et al., 2005) a homeland, from Jacob Flournoy’s 19th- represent the creative potential of a blend- century proposals for a Deaf state (Krentz, ing cinematic techniques with sign lan- 2000) to the recent proposal for Laurent, guage poetry. In addition to experimenta- South Dakota (Willard, n.d.) as just such a tion with visual textuality, sign language homeland. Indeed, as. Le Corbusier wrote, poetry extends the embodied, performa- “the occupation of space is the first proof tive tradition, exemplified by the Beat gen- of existence” (Findley, 2005, p. 5). As such, eration’s spoken word poetry. Allen Gins- Deaf people may find architecture and. berg, for one, recognized the enormous community planning an integral element potential of sign language performance to linguistic and cultural revitalization. when he participated in a gathering of Deaf Such a future exploration would result in and hearing poets in Rochester, New York. diversity of the design and qualities of liv- When he asked Deaf poets to translate the ing spaces. phrase “hydrogen jukebox” from his poem, “Howl,” Patrick Graybill responded with a translation that led Ginsberg to exclaim, DEAF-GAIN AND CREATIVE “that is exactly it, what I have been trying to DIVERSITY: SIGN LANGUAGE convey, the hard clear image of it” (Cohn, LITERATURE 1999; Cook, 2006). Just as the validation of sign language Similarly, the history of theater reveals revolutionized the study of language, so an enduring human desire for nonver- too must the nature of literature be recon- bal, visual spectacle. The history of mime sidered from the ground up. The unique and theatrical tableau, and explorations visual and spatial properties of sign lan- in experimental visual theater by direc- 252 | H-DIRKSEN L. BAUMAN AND JOSEPH J. MURRAY

tors and writers like Antonin Artaud and snational Deaf public sphere developed Robert Wilson, indicate that theater yearns alongside a series of international con- to draw particular attention to the spatial gresses of Deaf people from 1873 onward and kinetic modalities. Golden (2009) sug- (Ladd, 2003; Murray, 2007). This sphere gests that Deaf/sign language theater and created a shared discursive field in which the practice of visual theater engage in an deaf people could articulate common exchange to the mutual benefit of each strategies on living as visual minorities in practice. Clearly, the highly visual nature societies governed by auditory principles. of Deaf theater, Golden suggests, may Taking a transnational orientation to deaf enhance the genre of visual theater. people’s lives foregrounds the commonality of Deaf ways of being, but paradoxically also heightens our understanding of deaf CULTURAL DIVERSITY AND people as intimately tied to local discursive DEAF-GAIN: TRANSNATIONAL constructions of nation and society. The DEAF COMMUNITY physical assemblage of large numbers of The tools of cultural studies that have deaf people often brings with it a reorgani- served Deaf Studies so well in earlier eras zation of physical space according to Deaf have now also changed. Scholars have norms, as deaf people temporarily colonize called into question the old anthropology portions of a city at large-scale quadren- of culture, with its language of bounded nial events such as World Federation of the cultural entities, cultural contact, and Deaf Congresses or Deaflympic sporting cross-cultural communication. The dan- competitions. A complete understanding gers of essentialism have gained increas- of the spatial reorganization that occurs ing urgency, especially among scholars of and its implication in terms of “Deaf-gain” South Asia, who see the results of religious have yet to be realized. However, by view- essentialism in the violent clashes on the ing deaf peoples’ lives in different national Indian subcontinent (Appadurai, 2006). contexts, we also understand how inte- Deaf Studies has begun to encompass a grated deaf people are into their national cosmopolitan, transnational perspective and social contexts. There are many ways that moves outside the phase of legitimiza- to be Deaf, because deaf people are not tion of the category of Deaf and into a criti- isolated from the societies in which they cal inquiry into the nature of being deaf, live (Monaghan, Schmaling, Nakamura, & how ways of understanding and living as Turner, 2003). deaf have shaped the material and ideo- An expanded frame of reference will logical worlds of Deaf and hearing people. naturally include the global South, which In fact, the very trope of “Deaf worlds” and will have an increasingly prominent role “hearing worlds” is being understood as a in transnational Deaf communities of the product of a particular set of historical con- future, especially if current demographic ditions (Murray, 2007). analyses regarding developed countries There is a small, but growing, body of trend as predicted (Johnston, 2006). Eco- work that explores how deaf people inter- nomic disparities between the North and act across national boundaries (Breivik, South have resulted in lesser rates of coch- Haualand, & Solvang, 2002; Murray, 2007; lear implantation, less use of genetic test- Nakamura, 2006). Transnational contact ing, and hindrances in the prevention of between deaf people existed since the childhood illnesses, all of which have the early 19th century, emerging at a series of result of expanding the population of deaf Parisian Deaf-mute banquets, and a tran- children and potential native signers. These DEAF STUDIES IN THE 21ST CENTURY | 253 factors will likely not persist, but what they people, the term referring to the ability mean for the present generation of deaf to “inhabit and intuit” another person’s people is that the demographic imbalance consciousness (Fox, 2008, pp. 80–81). Fox between deaf people in developing and notes that semantically related signs for developed countries will likely become mental processes (think, decide, believe) even more prominent, with the rate of sign are located at or near the head in ASL and language use presumably shifting to devel- European signed languages (Fox, 2008, p. oping countries as well. The central loci of 82), thus possibly assisting users of one Deaf Studies may well shift from Western signed language in understanding another countries to the global South, from dis- signed language. The study of IS is still in cretely bounded national communities to its early stages and questions remain. If a more fluid array of affinitive networks of international signed communication has various sizes and forms, existing in both existed for two centuries, has there been physical and virtual space (Breivik, 2007; continuity in lexical or other structural Kusters, 2007). properties of IS in this period? Can we characterize “it” as an “it,” or were there many versions of IS throughout the decades? A CULTURAL DIVERSITY AND community of users has existed, but was DEAF-GAIN: INTERNATIONAL SIGN there generational transmission and if so, AND SIGNED LANGUAGES what does this tell us about the language- Communication at international meet- like properties of IS? Beyond a focus on IS ings of Deaf individuals often occurs in as a distinct entity are questions IS raises International Sign (IS), a form of cross- by its very existence. At the very least, IS national communication that emerges calls into question the inevitability of lin- when signers from different signed lan- guistic dissimilarities, with its apparatus of guages come into contact. Most research interpretation, and raises larger questions on IS to date has studied its linguistic on the histories and modalities of com- properties. Although this research is still munication between linguistically distinct developing, early conclusions indicate that groups of people. IS has more language-like properties than The study of IS is part of a body of work pidgins, another form of communication going beyond the study of sign languages that emerges when two or more languages under national markers—ASL, Danish come into contact (Supalla & Webb, 1995). Sign Language—to a realization that sign- There is evidence of IS being used as far ing exists in a diverse array of situations back as the early 19th century (Ladd, 2003), and communities. Scholars have seen a when it was used for political discourse at sign language being born in Nicaragua international meetings, as well as in infor- (Senghas, 1995, 2003) and are studying mal interactions between Deaf travelers the use of signing among a Bedouin com- (Murray, 2007). The ability of signing deaf munity in Israel (Fox, 2007; Sandler et al., people to meet and interact across linguis- 2005), one of many communities around tic boundaries—without sharing a com- the world where both hearing and deaf mon language beforehand—has existed people sign (Groce, 1985; Johnson, 1994; for at least two centuries. Some of this is Marsaja, 2008). There are obvious benefits no doubt due to the common experience to scholars in seeing linguistic phenom- of being Deaf in nondeaf societies. One ena take place in the field: scholars have author attributes this ease of understand- never witnessed a spoken language being ing to a shared theory of mind among Deaf created, and the study of Nicaraguan sign 254 | H-DIRKSEN L. BAUMAN AND JOSEPH J. MURRAY

language allows linguists the opportunity of presence conveyed through the system to see if their theories are correct. Think of of hearing oneself speak is radically altered astrophysicists being able to witness the through the self-awareness of one’s own Big Bang. Beyond this, the existence—and signing. The sense of presence for signers, persistence—of sign languages allows us then, is derived through the presence of the to understand the diversity of human ways other. This constant confirmation of pres- of being and communicating, and offers ence through the face of the other may par- a direct challenge to conceptions of nor- tially explain the prevalence of collectivism malcy that would peg all humans into a of Deaf cultures. Although the significance phonocentric square hole. of prolonged face-to-face engagement and eye contact over a lifetime cannot be underestimated, little research has been done to CULTURAL DIVERSITY AND understand the psychological implications DEAF-GAIN: DEAF COLLECTIVIST of Deaf ways of being together. CULTURE AND THE FUTURE OF One study is currently under way to COMMUNITY examine the nature of human contact in A growing body of research points toward the example of the “Deaf walk” as opposed the dissolution of a sense of community to the hearing walk (Sirvage, forthcoming). and civic engagement. Robert Putnam’s As two hearing individuals engage in dis- Bowling Alone: The Collapse and Revival cussion while walking, they simply need of American Community points to the fac- to ensure that they are close enough and tors of work, television, computers, sub- speak loudly enough for the other to hear. urban life, and family structures as having There is no need for eye contact. Signifi- contributed to this decline. Other studies cantly, when deaf people walk, however, confirm Putnam’s observations, noting they engage in constant eye contact, and that social networks and people’s sense of more significantly, they must take care of connectedness have taken a precipitous the other person, extending their periph- decline in the past three decades (McPher- eral vision to ensure that the other person son, Smith-Lovin, & Brashears, 2006). As a does not walk into any objects. Although culture that exhibits a high degree of col- this may seem a minor point, there is a lectivism (Mindess, 2006), Deaf cultural larger lesson about the nature of Deaf relations may offer insights and examples collectivist relations. Signers take care of to understand, if not emulate. The circu- each other, whether strangers or intimate lar proxemics of deaf people as they align friends, when engaged in a peripatetic con- themselves to be seen are the structural versation. Future studies should inquire embodiment of nonhierarchical relations. into expanding the notion of the Deaf walk Although Derrida (1973) has highlighted to larger cultural ways of being that may the significance of “hearing oneself speak” have lessons for an increasingly isolated as a prime source of deriving a sense of society. presence, deaf individuals can neither hear themselves speak nor fully see themselves SUMMARY AND CONCLUSIONS: sign (Bauman, January, 2008). Granted MEDIA PRODUCTION AND THE that signers may see their own hand move- DEAF PUBLIC VOICE ments from their vantage, they will never be able to see their own faces, which are so This brief discussion of human diversity vital to the linguistic and emotional con- and Deaf-gain has little to do with a cri- tent of sign language expression. The sense tique of audism, or any other defensive DEAF STUDIES IN THE 21ST CENTURY | 255 posture that has largely characterized late we ate constantly reminded that the bed- 20th-century and early 21st-century Deaf rock of reality may be just as diaphanous Studies. The critique of power relations as any other social construction. As Sandel that forms a principal activity of all cultural (2007) argues in The Case Against Perfec- studies is implicit in pointing out what has tion, human diversity teaches us the value been lost in the oversight of sign languages of moving from an ethic of molding indi- and Deaf communities as having intrinsic viduals to beholding them in their extraor- and extrinsic value to human diversity. By dinarily rich ways of being. taking advantage of the unique Deaf ways of being, forms of cultural production may NOTES provide new areas of experimentation and insight, left hidden in the phonocentric 1. The notion of “Deaf-gain” was originally blindspots within the ways that cultural articulated by the British performance artist, Aaron Williamson, who, when presenting to practices and disciplines have evolved. Dirksen Bauman’s graduate class, “Enforcing Commerson (2008) suggested that Normalcy,” stated that while all his doctors told such a reframing of human diversity and him that he was losing his hearing, not one told Deaf Studies would be more likely to take him that he was gaining his deafness. place if there is a strong visual presence 2. As Stokoe (2001) described, “The nerves connecting eyes and brain outnumber by far in media. If deafness is reframed from all the brain connections to the other sensory lack to gain, then the sense of gain may be organs, the ears included. Visual processing embodied through characters in film, tel- involves so much of the brain that a visual field evision, video, Internet sites, newspapers, may convey an enormous amount of information and other forms of public discourse. Given simultaneously, whereas language sounds have to reach the ear sequentially, one by one, the existential threats to Deaf communi- until the whole message is received and can be ties and their languages, the 21st-century interpreted.” practice of Deaf Studies must move from a 3. Despite no widely accepted written form, defensive posture to one that actively seeks there have been many attempts throughout to redefine public perception—and do so history. One of the earliest is August Bebian’s Mimography (Renard, 2004), the most well- quickly. known is probably Sign Writing (http://www. As 21st-century Deaf Studies argues for signwriting.org/), and a promising new form is both intrinsic and extrinsic value, it must being developed by Arnold (2007). be careful to make the point that this argument is not simply for the preservation REFERENCES of deaf people and sign languages for the sake of scientific exploration of the human Akamatsu, C. T., Musselman, C., & Zweibel, A. character. Instead, Deaf Studies may want (2000). Nature versus nurture in the develop- to take the counterintuitive position that all ment of cognition in deaf people. In P. Spen- individuals would be enriched by become cer, C. Erting, & M. Marschark (Eds.), The a bit more Deaf. By that we mean society deaf child in the family and at school. (pp. would do well to become more acutely 255–274). Mahwah, NJ: Lawrence Erlbaum aware of the nuances of communication, Associates. Allen, S. (2007). A deaf diaspora: Exploring un- more engaged with eye contact and tac- derlying cultural yearnings for a deaf home. tile relations, more fluent in a language Master’s thesis, Gallaudet University, Wash- rich in embodied metaphor, more aware ington, DC. of the role of being a member of close-knit Appadurai, A. (2006). Fear of small numbers: An communities, and if nothing else, more essay on the geography of anger. Durham, NC: appreciative of human diversity, so that Duke University Press. 256 | H-DIRKSEN L. BAUMAN AND JOSEPH J. MURRAY

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and early intervention.” Canadian Modern VL2. (2008). Visual language and visual learning Language Review, 64 (4). June (pp. 581–604). website introduction. Retrieved November Stokoe, W. (2001). Language in hand: Why sign 20, 2008, from http://vl2.gallaudet.edu/ came before speech. Washington, DC: Gallau- Wallvik, B. (1997). . . . ett folk uten land . . . Borgå: det University Press. Finland: Döva och hörselskadade barns stöd- Supalla, T., & Webb, R. (1995). The grammar forening r.f. of international sign: A new look at pidgin Welles, E. B. (2004). Foreign language enroll- languages. In K. Emmorey & J. S. Reilly (Eds.), ments in United States institutions of higher Language, gesture, and space (pp. 333–351). education. ADFL Bulletin, 35 (2–3). Hillsdale, NJ: Lawrence Erlbaum Associates. Wilcox, P. (2000). Metaphor in American Sign Sutton, V. (2008). Retrieved November 20, 2008 Language. Washington, DC: Gallaudet Uni- from www.signwriting.org versity Press. Taub, S. (2001). Language from the body: Iconici- Willard, T. (n.d.). Special Report: Laurent, SD ty and metaphor in American Sign Language. in Deafweekly. Deafweekly electronic mail- Cambridge: University of Cambridge Press. ing list. Retrieved November 20, 2008, from Van Cleve, J. V. (1993). Deaf history unveiled: http://www.deafweekly.com/backissues/ Interpretations from the new scholarship. laurent.htm Washington, DC: Gallaudet University Press. Williams, R. (1958). Culture and society, 1780– Van Cleve, J. V., & Crouch, B. A. (1989). A place 1950. London and New York: Columbia Uni- of their own: Creating the deaf community in versity Press. America. Washington, DC: Gallaudet Univer- Williams, R. (1961). The long revolution. London sity Press. and New York: Columbia University Press. PART V

Identities and Intersectionalities CHAPTER 20

The End of Identity Politics: On Disability as an Unstable Category Lennard J. Davis

There are times when the black man is locked might want to pursue, especially early on into his body. Now, “for a being who has ac- in an academic or political movement, I quired consciousness of himself and of his also think that ignoring the current seismic body, who has attained the dialectic of subject shifts in identity politics would be equally and object, the body is no longer a cause of the disastrous and could lead to major insta- structure of consciousness, it has become an bility in the near future. If disability studies object of consciousness.” —Frantz Fanon, citing Merleau-Ponty, were to ignore the current intellectual mo- Black Skin, White Masks ment and plow ahead using increasingly antiquated models, the very basis for the study of the subject could be harmed by At times we might look back nostalgically making its premises seem irrelevant, shod- to the moment when identity was relatively dily thought through, and so on. simple, when it was possible to say that one In effect, we do have to acknowledge was black or white, male or female, “Indian” that, unlike race, class, gender, sexual pref- or not. It might once have been possible to erence, and the like, disability is a relatively answer the question that James Weldon new category. Although the category has Johnson’s narrator in The Autobiography existed for a long time, its present form as of an Ex-Colored Man asks his mother “Are a political and cultural formation has only you white?” with her clear reply, “No, I am been around since the 1970s, and has come not white . . .” (8). But the issue of iden- into some kind of greater visibility since tity by race, gender, or sexual orientation, the late 1980s. The political and academic particularly in America, has become more movement around disability is at best a clouded, fuzzier, grainier than it used to be. first- or second-wave enterprise. The first And so, the issue of a disability identity has wave of any struggle involves the estab- begun to enter murkier grounds. lishment of the identity against the soci- When I discussed the idea of clouding etal definitions that were formed largely the issue of disability identity, a prominent by oppression. In this first phase, the iden- disability scholar advised me not to pur- tity—be it blackness, or gayness, or Deaf- sue this line of thinking. “We’re not ready ness—is hypostasized, normalized, turned to dissolve disability identity. We’re just be- positive against the negative descriptions ginning to form it.” While I agree that there used by the oppressive regime. Thus “Black is a strategic kind of identity politics one is Beautiful,” “Gay Pride,” and “Deaf Power” 264 | LENNARD J. DAVIS

might be seen as mere reappropriations of pairments were developed with no need to a formerly derogatory discourse. The first create unity among diverse patient groups. phase also implies a pulling together of Wheelchair users saw no commonality forces, an agreement to agree for political with people with chronic fatigue syndrome ends and group solidarity, along with the or Deaf people. Given the American ethic tacit approval of an agenda for the estab- of individuality and personal achievement, lishment of basic rights and prohibitions there would have been little incentive for against various kinds of discrimination PWDs to identify with the “handicaps” of and ostracism. other people. Rather, the emphasis would In a second wave, a newer generation of have been on personal growth, or over- people within the identity group, ones who coming the disability, and normalization have grown up with the libratory models through cure, prosthesis, or medical inter- well in place, begin to redefine the strug- ventions. With the return of veterans from gle and the subject of study. They no lon- the Vietnam war, a movement grew up ger seek group solidarity since they have around civil rights for people with disabili- a firm sense of identity. In a second wave, ties, which culminated in the Americans the principals are comfortable about self- with Disabilities Act of 1990. By the begin- examining, finding diversity within the ning of the millennium disability activism, group, and struggling to redefine the iden- consciousness, and disability studies is tity in somewhat more nuanced and com- well established, although many areas of plex ways. Often this phase will produce the ADA are being rolled back in the courts conflict within a group rather than unity. and in the legislature.1 We’ve seen this most dramatically in the To begin with, one might want to point feminist movement when second-wave out the obvious point that history repeats thinkers like Judith Butler have critiqued itself. As Marx wrote about the failed rev- earlier essentialist notions that pulled olution in France, people tend to model the movement together initially. The con- political movements on those of the past. flict can come from differences that have For people with disabilities the civil rights been suppressed for the sake of maintain- model was seen as more progressive and ing a unified front so that the group could better than the earlier charity and medical emerge in the first place and resist the for- models. In the earlier versions, people with merly oppressive categorization and treat- disabilities were seen variously as poor, ment. destitute creatures in need of the help of Disability studies is, as I have said, a the church or as helpless victims of disease relatively new field of study. Its earliest in need of the correction offered by mod- proponents were writing in the 1970s and ern medical procedures. The civil rights 1980s. The second wave of disability writ- model, based on the struggles of African ing can be seen as emerging in the 1990s. Americans in the United States, seemed Both the first and second waves have had to offer a better paradigm. Not plagued by a strong interest in preserving the notion God nor beset by disease, people with dis- of a distinct and clear entity known vari- abilities were seen as minority citizens de- ously as “people with disabilities” (PWDs) prived of their rights by a dominant ableist or “Deaf people.” In the case of PWDs, the majority. interest has been in creating a collectivity Along with this model went the social where before there had been disunity. In model, which saw disability as a construct- the past, people with disabilities did not ed category, not one bred into the bone. identify as such. Medical definitions of im- This social model is in dialogue with what THE END OF IDENTITY POLITICS | 265 is often referred to as the British model, being of a particular, oppressed minority which sees a distinction between impair- represented. ment and disability. Impairment is the Yet, within that strong notion of iden- physical fact of lacking an arm or a leg. tity and identity politics, a deconstructive Disability is the social process that turns worm of thought began its own parasitic an impairment into a negative by creating life. That worm targeted “essentialism.” barriers to access. The clearest example of Just as no one wants to be a vulgar Marxist, this distinction is seen in the case of wheel- no one wanted to be an essentialist. Essen- chair users. They have impairments that tialists—and there were fewer and fewer of limit mobility, but are not disabled unless them very soon after we began to hear the they are in environments without ramps, word—were putatively accused of claiming lifts, and automatic doors. So, as long as the in a rather simple-minded way that being a minority and/or social model held fast, this woman or an ethnic minority was somehow model seems to have worked pretty well, or rooted in the body. That identity was tied at least as well as the civil rights model it- to the body, written on the body. Rather, self worked. the way out of this reductionist mode was Enter postmodernity. The postmodern to say that the body and identities around critique is one that destabilizes grand, uni- the body were socially constructed and fying theories, that renders problematic performative. So while postmodernism es- desires to unify, to create wholes, to estab- chewed the whole, it could accept that the lish foundations. One could fill archives sum of the parts made up the whole in the with what has been said or written about form of the multicultural, rainbow quilt of the culture wars, the science wars, and identities.2 Social constructionism and per- whatever other wars. In terms of identity, formativity seemed to offer the way out of there has been an interesting and puzzling the problem caused by the worm of essen- result. The one area that remained relative- tialism, but it also created severe problems ly unchallenged despite the postmodern in shaping notions of identity.3 If all identi- deconstructionist assault was the notion ties are socially constructed or performa- of group identity. Indeed, the postmodern tive, is there a core identity there? Is there period is the one that saw the prolifera- a there? tion of multiculturality. One could attack Disability offers us a way to rethink some the shibboleths of almost any ground of of these dilemmas, but in order to do so, I knowledge, but one could never attack think we need to reexamine the identity the notion of being, for example, African of disability, and to do so without flinch- American, a woman, or gay. To do so would ing, without hesitating because we may be be tantamount to being part of the oppres- undoing a way of knowing. As with race, sive system that created categories of op- gender, and sexual orientation, we are in pressed others. One could interrogate the the midst of a grand reexamination. Dis- unity of the novel, science, even physics, ability, as the most recent identity group but one could not interrogate one’s right on the block, offers us the one that is per- to be female, of color, or queer. Given this haps least resistant to change or chang- resistant notion of identity, the disability ing thoughts about identity. And, most movement quite rightly desired to include importantly, as I will argue, disability may disability as part of the multicultural quilt. turn out to be the identity that links other If all the identities were under the same identities, replacing the notion of post- tent, then disability wanted to be part of modernism with something I want to call the academic and cultural solidarity that “dismodernism.” 266 | LENNARD J. DAVIS

I am arguing that disability can be seen us human. But the project has left us with as the postmodern subject position for more questions than it has answered. For several reasons. But the one I want to fo- example, scientists are puzzling over the cus on now is that these other discourses relatively low count of genes in the human of race, gender, and sexuality began in the genome. It had been estimated that hu- mid-nineteenth century, and they did so mans would have approximately 100,000 because that is when the scientific study of genes, but the study yielded a mere 30,000, humans began. The key connecting point putting Homo sapiens on par with the for all these studies was the development mustard cress plant (25,000 genes) in terms of eugenics.4 Eugenics saw the possible of genetic complexity.5 More annoying and improvement of the race as being accom- less known is the fact that the two groups plished by diminishing problematic peoples who analyzed the genome, the privately and their problematic behaviors—these owned Celera group and the government- peoples were clearly delineated under the financed consortium of academic centers, rubric of feeble-mindedness and degen- have come up with only 15,000 that they eration as women, people of color, homo- jointly agree on. Fifteen thousand more sexuals, the working classes, and so on. All genes do not overlap in either analysis.6 these were considered to be categories of Considerable doubt exists as to whether disability, although we do not think of them these genes are “real.” as connected in this way today. Indeed, one More to the point, there is considerable could argue that categories of oppression confusion over race in relation to genet- were given scientific license through these ics. On the one hand, we are told that the medicalized, scientificized discourses, and mapped human genome, taken from the that, in many cases, the specific categories DNA of one or two individuals, is the same were established through these studies. for all humans. We are further informed Postmodernity along with science now that there is relatively little diversity in our offers us the solvent to dissolve many of genetic makeup. But we are also told that these categories. In the area of race, we various “races” and ethnic groups have dif- now know, for example, that there is no fering genetic markers for disability, defect, genetic basis to the idea that race, in its and disease. The contradiction is one that eugenic sense, exists. Thus far, no one has has been little explored, and those who been able to identify a person as belonging have pursued the point have come under to a specific “race” through DNA analysis. criticism for racializing genetics.7 Central to In fact, DNA analysis lets us understand the confusion is the category of race itself. that the category of race does not exist in If we say, on the one hand, that there is no physiological terms. Further, DNA analysis genetic way to ascertain race, and we also tells us that there is more genetic variation say that we have examined certain racial within a group we have called a race than groups and discovered a greater chance of within the entire human gene pool. Indeed, finding a particular gene, then we have inno one is even able to tell us how many rac- deed mixed our scientific categories.8 es there are, and fine distinctions between If we step back from the genetic level, phenotypes tend to dissolve the notion of we might want to investigate identity ques- categorical racial identities even further. tions at the cellular level. Here, tellingly, The Human Genome Project offered up we could investigate the HeLa cells widely the possibility of mapping with certainty used in laboratories and schools in what the complete sequence of approximately is called an “immortal cell line,” much like 3.2 billion pairs of nucleotides that make the lines developed currently for stem-cell THE END OF IDENTITY POLITICS | 267 research. These cells all derive from an Af- mixed-race checkoff, the statistical strong- rican American woman named Henrietta hold of race may well become weakened Lacks who died in 1951 of cervical cancer. with questionable results. The cells were taken without the permission In the area of gender, we are also seeing of Ms. Lacks, and became so widespread as confusions in otherwise fixed categories. to be ubiquitous. For the point of view of A culture of transgendered peoples is now this discussion, the cells were presumed being more widely permitted and the right to be universal until 1967, when a geneti- to be transgendered is being actively fought cist named Stanley Gartler announced that for. The neat binaries of male and female at least eighteen other cell lines had been are being complicated by volition, surgery, contaminated by the HeLa cells. He deter- and the use of pharmaceuticals. Intersexu- mined this by insisting that the presence of als, formerly known as hermaphrodites, G6PD (glucose-6-phosphate dehydroge- were routinely operated upon at birth to nase), an enzyme which is a factor in red assign them a specific gender. That move blood cell production, had been a marker is now being contested by groups of adult in all these lines and that this type of en- intersexuals. Some feel they were assigned zyme “has been found only in Negroes” the wrong gender, and others feel that they (61).9 Thus, during the early period of ge- would have liked to remain indeterminate. netic research previously universal cells Transsexuals now routinely occupy various were racialized at the cellular level. But the locations along a gender continuum, de- appearance of race at the cellular level is marcating their place by clothing and other no longer possible or relevant. The markers style-related choices, surgical corrections, thought to be of a specific racial group have and hormonal therapy. Even on the genetic no validity for that identificatory purpose. level, females who are genetically male and The issue of race is also complicated by males who are genetically female are a nat- the use of in vitro fertilization in a recent urally occurring phenomenon. The gender case of “scrambled eggs,” in which a fertil- determination is suppressed or enhanced ity doctor implanted in a woman’s womb in these cases of “Turner Syndrome” or not only her own fertilized embryo but “Klinefelter Syndrome,” so that the genetic that of another couple as well. The result- markers do not express the expected sexual ing birth was of fraternal twins, one white phenotypes.12 and the other black.10 Such complications Likewise, ethnicity is increasingly seen of reproductive technologies will certainly as problematic. Indeed, writers like Bene- lead to other kinds of choices being made dict Anderson have shown us that the idea by parents and physicians, intentional as of the nation is formed out of the suppres- well as unintentional, with the effect of sion of ethnicities, although those eth- rendering even more complex racial or nicities can end up forming new national even gender identity.11 Finally, the patrolled consciousnesses. Steven Steinberg asserts area of “mixed race” is being interrogated. that ethnicity is only one generation deep, The fact that multiracial identifications and that all citizens become Americans af- have been prohibited on national censuses ter that generation, with only a thin veneer is now being challenged. The reasons for of food choices or other accoutrements of keeping single-race checkoff boxes is itself their ethnic origin to hold onto.13 a highly politicized and tactical arena in Sexual orientation, which in the heyday which, understandably, oppressed groups of identity politics had a fairly definitive have gained redress and power by creating hold on defining a self, is now being ques- a unified subject. Where censuses allow a tioned by many under the rubric of “queer 268 | LENNARD J. DAVIS

studies.” Whereas once the choice of sexual Ultimately, if the grounds for an essen- partner indicated who one was—gay, les- tialist view of the human body are being bian, heterosexual, or bisexual—now, in challenged, so are the notions that iden- an era of dissolving boundaries, sexual ori- tity is socially constructed. Most coherent entation has become strangely unhinged, of these critiques is Ian Hacking’s The So- especially with the advent of transgender cial Construction of What? Hacking shows, politics. When a male-to-female transsexu- to my satisfaction at least, that the idea of al marries a person who defines herself as a social constructionism, while very useful woman, should that relationship be called in many regards, is itself tremendously un- lesbian? If an intersexual person chooses a derdeveloped theoretically and method- person of either gender, or another inter- ologically. And it has reached the end of its sexual, how do we define the relationship? shelf life. Once shocking and daring, now it In such cases, sexual orientation becomes has simply become a way of saying that ob- the only option that does not define the jects in the world have a history of shifting person in all ways as fitting into a discrete feelings, concepts, and durations. In ad- category. The change from the expression dition, Walter Benn Michaels has recently “sexual preference” to “sexual orientation’ said at a public presentation at the Univer- serves to indicate something hardwired sity of Illinois at Chicago in March 2001, into a person’s identity. that if we agree that there is no biological There has been some suggestion that basis for race, then how does it make sense there exists a “gay” gene, which, if it could to say there is a social construction of it? be found definitively, would somehow Michaels gives the example that if we agree settle the issue of gayness. But what we there is no scientific basis for the existence are seeing in the development of the Hu- of unicorns, does it make sense to say let’s man Genome Project is that genetics is not talk about the social construction of the the court of last resort in the story of life. unicorn? No one gene determines the course of a So, if we follow this line of thinking, join- human life. At this moment, while much ing forces with the major critique of iden- good science has gone into the project tity, we find ourselves in a morass in terms of genetics, there is still no gene therapy of identity politics and studies. There are that works. In addition, the low number of various tactics one can take in the face of genes in the recent mapping indicates that this conceptual dead end. One can object genes alone will not tell the story. Further, vehemently that X does indeed exist, that even where genes are shown to contribute people have suffered for being X, and still to disease, as in for example the case of do. Therefore, while there may be no ba- Jewish women of Eastern European origin sis in theory for being X, large numbers of who carry a marker for a type of breast can- people are nevertheless X and suffer even cer, there is no good explanation for why now for being so. Or one can claim that al- only one-third of all such women will though no one has been able to prove the eventually develop breast cancer. If genes biological existence of X, they will be able were the uncomplicated set of instructions to do so someday. In the gap between then that we are told they are, in a process of and now, we should hold onto the idea of scientific grandiosity sometimes referred being X. Or one could say that despite the to as “geno-hype,” there would be a one- fact that there is no proof of the existence for-one correspondence between the in- of X, one wants to hold to that identity be- cidence of markers and the occurrence of cause it is, after all, one’s identity. Finally, disease. we can say that we know X isn’t really a THE END OF IDENTITY POLITICS | 269 biologically valid identity, but we should act Thus, people with genetic diseases have strategically to keep the category so that we “birth defects” and are “defective.” can pass laws to benefit groups who have This explanation, like most, is partial been discriminated against because of the and error-laden. It is based on a pre-post- pseudo-existence of this category. modern definition of human subjects as All these positions have merit, but are whole, complete, perfect, self-sustaining. probably indefensible rationally. The idea This is the neoclassical model of Pico della of maintaining a category of being just be- Mirandola, Descartes, Locke, Hume, Kant, cause oppressive people in the past cre- and so on. But if we think of cystic fibrosis ated it so they could exploit a segment of or sickle cell anemia as “defects” in an oth- the population, does not make sense. To erwise perfect and whole human subject, say that one wants to memorialize that cat- are we making a grand mistake? Clearly, the egory based on the suffering of people who people who have such genetic conditions occupy it makes some sense, but does the are in grave peril. Few, if any, will live to a memorialization have to take the form of ripe old age. Each will have health issues. continuing the identity?14 Even attempts to It would be in the interest of both those remake the identity will inevitably end up people and their physicians to heal their relying on the categories first used to cre- illnesses. Since there is no cure for these ate the oppression. Finally, strategic essen- diseases at the present time, it seems rea- tialism, as it is called, is based on several sonable to think that we can eliminate the flawed premises, most notably the idea that defect by means of genetic medicine. So we can keep secret our doubts so that leg- the idea that one would want to fix these islators and the general public won’t catch genetic defects seems more than logical. on. This Emperor’s New Clothes approach Yet the model involved in the idea of is condescending to all parties, including birth “defect” comes to us direct and unal- the proponents of it. tered from a eugenic model of the human Let us pause for a moment here to take body. Words like “fit,” “normal,” “degener- into consideration the concept of disability ate,” “feeble,” “defect,” and “defective” are as a state of injury, to use Wendy Brown’s all interlaced. Their roots lie directly in the term. One of the central motivations for “scientific” study of humans that reached the Human Genome Project is the elimina- its liminal threshold in the middle of the tion of “genetic defects.” The argument is nineteenth century. We now openly repu- based on a vision of the “correct” or “real” diate eugenics, mainly because of the Na- genome being one without errors or mis- zis’ use of “negative eugenics,” that is, the takes. Somewhere, in some empyrean there direct elimination of “defectives” from the exists the platonic human genome. This human race. This seems so horrendous to genome is a book or text made up of letters us that the term is no longer used. But orga- sequenced in the right order without “mis- nizations in the United States and England takes.” As such, it is in fact a sacred text and have simply morphed their names into our correct reading of it is not unlike the vi- ones that use the term “genetics,” preserv- sion that the fundamentalist has that his or ing the Latin linguistic root in both eugenic her sacred text is infallible. However, the and genetic. Now eugenics (or genetics) is problem is that, as it stands now, the hu- carried out through two avenues—prenatal man genome is in need of fixing to make it screening, which works some of the time, perfect. Errors of transcription have ruined and genetic engineering, which has not the primal perfection of the text. The prob- worked on humans so far. In both cases, lem is related to exegesis and amanuensis. the aim is to improve the human stock and 270 | LENNARD J. DAVIS

to remove genetic defects. With the advent bypassing this draconian form of genetic of the Human Genome and genetic se- regulation, we may actually be contribut- quencing projects, the illusion is that single ing to the increased distribution of the trait genes will be discovered that can be “fixed” in the gene pool, particularly in developing with an improved consequence. There is, countries. The effect shows us that the sim- of course, the problem of the “single gene” ple answer of fixing the defect itself is not hypothesis, now being hotly debated in the simple. Further, we may be tampering with context of the latest claim that there is a the ability of humans to survive pandem- single gene for speech.15 ics that we know about and others that we Many would claim that for behaviors don’t know about. How many people, for like speech, sexual orientation, or intelli- example, are now protected against devel- gence, there can be no single gene or ge- oping active AIDS because they carry a trait netic causality. So the premise that we can for a “defect”? fix a single gene is itself a problem. Further, Another aspect of this “defect” scenario the idea of a “mistake” is also problematic. is that a new issue is beginning to arise Take the examples I have given of sickle- in the courts—the right not to be born. cell anemia and cystic fibrosis. The genetic French courts upheld this idea in regard to markers for both these are recessive, which women who did not receive genetic test- means that a great number of the popula- ing and who gave birth to children who tion will have genetic information (or mis- were, for example, born without an arm. information) for these diseases. It turns The courts endorsed compensatory pay- out that people who carry the trait are re- ments to such children who had the right sistant to malaria (in the case of sickle-cell to not be born and whose parents were not anemia) and cholera (in the case of cystic able to exercise that right because of lack fibrosis). If we posit that other “defects” are of information. The legislature in a subse- also protective against pandemic diseases, quent act voided the court’s ruling. Nev- we can see that the simple elimination of ertheless, here indeed is a slippery slope, such defects might be a complicated pro- which many people with disabilities have cess with a possibly dubious result. What regarded with suspicion. They rightly claim we are discussing is an algorithm of col- that their parents might have aborted them lective protectivity through genetic diver- had they known of their upcoming impair- sity versus harm to select individuals. I’m ment as children. On the other side of the not arguing for a trade-off, but I think evo- disability divide, Deaf parents and parents lution has made that trade-off and our of small stature have the ability to screen genes contain the history of humans and for the birth of a hearing child or a normal- pandemics. sized child and to abort. And, of course, The use of genetic testing to avoid giv- in countries like India and China, genetic ing birth to children with genetic defects is testing is used to abort female fetuses. In itself problematic. On a simple statistical the United States, the American Society level, it can probably only be done in rela- for Reproductive Medicine, which sets the tively wealthy countries and among mid- standards for most fertility clinics, officially dle- and upper-class people. Paradoxically, stated that it is sometimes acceptable for the effect of doing so may actually serve couples to choose the sex of their children to increase the incidence of the condition by selecting either male or female embryos because each time a person is born with and discarding the rest.16 These cases begin the disease, two of the inherited traits end to blur the notion of what a “defect” is and with the person upon his or her death. By is not. Designer babies, as foreseen in the THE END OF IDENTITY POLITICS | 271 film Gattaca, can begin to be seen as those metaphoric sense). But impairment is not who will not contain, for example, genes a neutral and easily understood term. It for breast cancer or high blood pressure. relies heavily on a medical model for the The possibilities are limitless. diagnosis of the impairment. For example, Some of the issues I’ve outlined here are is Asperger’s Syndrome or hysteria an im- the result of a destabilization of the catego- pairment or the creation of the folie à deux ries we have known concerning the body. of the observing physician and the cooper- The body is never a single physical thing ating patient?17 Is anorexia or ADD an im- so much as a series of attitudes toward it. pairment or a disability? Particularly with The grand categories of the body were es- illnesses that did not exist in the past, the tablished during the Renaissance and the plethora of syndromes and conditions that Enlightenment, and then refined through have sprouted in the hearts and minds of the use of science and eugenics. Postmod- physicians and patients—conditions like ernism along with science has assaulted attention deficit disorder, fugue states, many of these categories of self and iden- pseudoneurotic schizophrenia, or border- tity. What we need now is a new ethics of line psychosis—we have to question the the body that acknowledges the advances clear line drawn between the socially con- of science but also acknowledges that we structed “disability” and the preexistent can’t simply go back to a relatively simple and somatic “impairment.” Ian Hacking, notion of identity. Genetics offers the way in Mad Travelers: Reflections on the Real- back, without, thus far, being able to deity of Transient Mental Illnesses, points out liver on that promise. that fidgety children were not considered What I would like to propose is that this to have impairments until ADD began. Is new ethics of the body begin with disabil- the impairment bred into the bone, or can ity rather than end with it. To do so, I want it be a creation of a medical—technologi- to make clear that disability is itself an un- cal—pharmaceutical complex? stable category. I think it would be a major Further, it is hard if not impossible to error for disability scholars and advocates make the case that the actual category of to define the category in the by-now very disability really has internal coherence. It problematic and depleted guise of one includes, according to the Americans with among many identities. In fact I argue that Disabilities Act of 1990, conditions like disability can capitalize on its rather dif- obesity, attention deficit disorder, diabetes, ferent set of definitions from other cur- back pain, carpal tunnel syndrome, severe rent and known identities. To do this, it facial scarring, chronic fatigue syndrome, must not ignore the instability of its self- skin conditions, and hundreds of other definitions but acknowledge that their in- conditions. Further, the law specifies that stability allows disability to transcend the if one is “regarded” as having these impair- problems of identity politics. In setting up ments, one is part of the protected class. this model we must also acknowledge that The perceived legal problem is that the not only is disability an unstable category protected class is too large, and that is one but so is its doppelgänger—impairment. of the reasons there is a perceived back- In the social model, disability is pre- lash in the United States against the ADA. sented as a social and political problem In response to initial concerns that too that turns an impairment into an oppres- many people with minor conditions were sion either by erecting barriers or by re- qualifying as disabled, the federal courts fusing to create barrier-free environments have issued very narrow interpretations (where barrier is used in a very general and of disability.18 While we must deplore the 272 | LENNARD J. DAVIS

fact that approximately 95 percent of cases people can slip into disability in the blink brought before the courts are currently de- of an eye or the swerve of a wheel, so too cided in favor of employers, we may also can people be cured. Indeed, although we understand that some of this backlash is don’t expect this in the near future, it is generated by a fear of creating a protected possible to imagine a world in which dis- class that is too large. As with affirmative ability decreases from 15 to 20 percent of action, there is also general resentment the population to just 2 or 3 percent. Just as among the populace that certain minority we saw a major reduction in infectious dis- groups have special rights and privileges eases in the West over the previous century, with regard to college admissions, job hir- so too may we see a decrease in disabili- ing, and so on. I want to be clear that I am ties. Gene therapy, colossally unsuccessful not arguing against the protection of his- up until this point, could have a major al- torically oppressed groups, as I will explain though unlikely breakthrough and become further. But I am calling attention to the in- the treatment of choice for many illnesses. creasingly ineffective means of achieving a Stem cell research could lead to the regen- goal of equality and equity in housing, jobs, eration of many tissues that are the cause and public accommodations. of degenerative and traumatic diseases and Indeed, the protected class will only be- conditions. And technological fixes may come larger as the general population ages. become much more sophisticated, so that, With the graying of the baby boomers, we for example, cochlear implants, now very will see a major increase in the sheer num- problematic even if you believe in the con- bers of people with disabilities. As noted in cept, could become foolproof. Indeed, this the Introduction, the World Health Organi- specter is rather terrifying and offensive to zation (WHO) predicts that by the year 2020, many Deaf people, and with good reason. there will be more than 690 million people Advances in biotechnology could create over the age of sixty-five, in contrast with to- natural and effective gaits for paraplegics day’s 380 million. Two-thirds of the elderly or useful prostheses that might be virtually will be in developing and under-developed indistinguishable from human limbs. In- nations. The increase in the elderly popula- deed, political issues aside, the possibility tion will cause a major change in the disease does exist of cures for many impairments patterns of these countries. There will be in- that now define a group we call “people creasing rates of cancer, kidney failure, eye with disabilities.” We must recall though, disease, diabetes, mental illness, and other that cures will of course only be available to chronic, degenerative illnesses such as car- people with means in wealthy countries. diovascular disease. Although we may want What we are discussing is the instabil- to call all these senior citizens people with ity of the category of disability as a subset disabilities, what will that mean? Will we of the instability of identity in a postmod- have to start making decisions about who is ern era. It would be understandable if one disabled and who is not? What Occam’s ra- responded to what I’ve suggested by say- zor will we use to hone the definition then? ing that, notwithstanding this instability, And how will this majority of older people the category must be left alone. It must redefine disability, since they did not grow be maintained for all the reasons I had up with a disability or acquire one early in suggested earlier. Or, as one of my stu- life? Who will get to claim the definition of dents responded, “What will happen to disability or the lack of one? the handicapped parking space, if what Complicating the issue of disabil- you advocated happens?” True, but I ity identity is the notion of cure. Just as want to propose that the very rationale THE END OF IDENTITY POLITICS | 273 for disability activism and study is good The universal subject of postmodernism enough, indeed better than good enough, may be pierced and narrative-resistant but rationale for many people—people other that subject was still whole, independent, than those we now call People with Disabil- unified, self-making, and capable. The dis- ities. Rather than ignore the unstable na- modern era ushers in the concept that dif- ture of disability, rather than try to fix it, we ference is what all of us have in common. should amplify that quality to distinguish That identity is not fixed but malleable. it from other identity groups that have, as That technology is not separate but part I have indicated, reached the limits of their of the body. That dependence, not individ- own projects. Indeed, instability spells the ual independence, is the rule. There is no end of many identity groups; in fact it can single clockmaker who made the uniform create a dismodernist approach to disabil- clock of the human body. The watchword ity as a neoidentity. of dismodernism could be: Form follows What characterizes the limitations of dysfunction. the identity group model is its exclusivity What dismodernism signals is a new kind (which contains the seeds of its own disso- of universalism and cosmopolitanism that lution through the paradox of the prolifera- is reacting to the localization of identity. It tion of identity groups). Indeed, you have reflects a global view of the world. To ac- to be pretty unidentified in this day and age complish a dismodernist view of the body, to be without an identity. So the very criti- we need to consider a new ethics of the cism of the category of disability as being body. We may take Kierkegaard’s by-now too large, as containing too big a protected naïve belief in the universal and transform class, is actually a fait accompli with the it, knowing that this new universalism can- notion of identity in general. We should not be a return to Enlightenment values. not go on record as saying that disability is Rather it must be a corrective to the myths a fixed identity, when the power behind the not only of the Enlightenment but of post- concept is that disability presents us with modernism as well. a malleable view of the human body and A new ethics of the dismodernist body identity. consists of three areas: The first concerns Enlightenment thought would have it the official stance—care of the body is now that the human is a measurable quantity, a requirement for existence in a consumer that all men are created equal, and that society. We are encouraged and beseeched each individual is paradoxically both the to engage in this care; indeed, it is seen as same and different. Or perhaps, as Kierkeg- a requirement of citizenship. This care of aard put it, “the single individual is the par- the body involves the purchase of a vast ticular that has its telos in the universal.”19 number of products for personal care and In the past much of the paradoxical attitude grooming, products necessary to having a toward citizens with disabilities arose from body in our society. Although we are seen the conflict between notions of the equal- as self-completing, the contemporary ity of universal rights and the inequality of body can only be completed by means of particular bodies.20 consumption. This is the official stance: For all the hype of postmodern and de- that the contemporary human body is in- constructive theory, these intellectual at- complete without deodorant, hair gel, san- tempts made little or no impression on itary products, lotions, perfumes, shaving identity politics. Rather, those who pushed creams, toothpastes, and so on.21 In addi- identity had very strong Enlightenment tion, the body is increasingly becoming a notions of the universal and the individual. module onto which various technological 274 | LENNARD J. DAVIS

additions can be attached. The by-now caring about the body. This is the area I routine glasses, contact lenses, and hear- would most like to emphasize. If we care ing aids are supplemented by birth-control about the body, that is to say care about implants, breast implants, penile implants, the issues I have raised, we finally begin to pacemakers, insulin regulators, monitors, open up and develop a dismodernist dis- and the like. Further work will also inti- course of the body and the uses of bodies. mately link us to more sophisticated cy- This area begins with attention paid to hu- bertechnology. All this contributes to what man rights and civil rights that have to be Zygmund Bauman calls “the privatization achieved to bring people with disabilities of the body,” which he sees as the “primal to the awareness of other identity groups. scene of postmodern ambivalence.” The Here we must discuss the oppression of so- aim and goal, above all, is to make this called abnormal bodies, and the treatment industrial-modeled, consumer-designed of the poor with disabilities. Class again body appear “normal.” And even people becomes an issue in identity. We must fo- with disabilities have to subscribe to this cus on the poor, since by all estimates the model and join the ranks of consumers.22 majority of people with disability are poor, Another official area pertains to care for unemployed, and undereducated. In the the body, an area that also links the econ- United States, only one-third of people omy with the body. Here we must confront with disabilities are employed, versus up- an entire industry devoted to caring for the ward of 70 percent of “normal” workers. human body. We are discussing the health- Indeed, many people with disabilities end care industry and the dependent care up in prisons—particularly those with cog- industry. Included here are physicians’ pri- nitive and affective disabilities. A New York vate practices, clinics, medical insurance Times article (August 7, 2000) pointed out companies, medical laboratories, hospi- that one in ten death row inmates are men- tals, extended-care facilities, hospitals, tally retarded. Since the majority of people hospices, nursing homes, in-home caregiv- in the United States become quadriplegic ers, pharmacies, manufacturers of assistive or paraplegic from gunshot wounds, a dis- devices, and organizations that promote proportionate number of African Ameri- the research, development, and care of can males are so impaired. And therefore certain kinds of illnesses and conditions. a large number of these males with dis- In most countries, this industry makes up abilities are also in prisons, often without the largest sector of the economy. There adequate accommodations. are obviously huge economic advantages On an international level, land mines to the creation and maintenance of the create impairments on a daily basis, and disability industry. It is important to recall this fact combined with other technologies that since huge financial commitments are of war and extremely poor working condi- being made to the abnormal body, the eth- tions in sweatshop environments creates ics involved in the distribution of resources a level of disability in so-called develop- and the shaping of this industry is a major ing countries that requires attention and part of our approach to an ethical society. thought. The treatment of women and fe- By and large, this industry is controlled and male babies—including the abortion of dominated by people who are not people female fetuses, the use of clitorectomies, with disabilities. the oppression of gay, lesbian, bisexual, Finally, to secure a dismodernist ethics, and transgendered people—often inter- in opposition or in some cases in alliance sects in familiar and unfamiliar ways with with the official stance, we need to discuss the mechanisms of disablement. It can be THE END OF IDENTITY POLITICS | 275 said that the most oppressed person in the is, dominant) subject, but aims to create world is a disabled female, Third World, ho- a new category based on the partial, in- mosexual, woman of color. In addition, the complete subject whose realization is not absence of adequate wheelchairs in poor autonomy and independence but depen- countries, along with inadequate street dency and interdependence. This is a very and public accommodation facilities cre- different notion from subjectivity orga- ate a virtually inaccessible world for people nized around wounded identities; rather, with mobility impairments. all humans are seen as wounded. Wounds My point is that with a dismodernist are not the result of oppression, but rather ethic, you realize that caring about the the other way around. Protections are not body subsumes and analyzes care of and inherent, endowed by the creator, but cre- care for the body. The latter two produce ated by society at large and administered oppressive subjection, while the former to all. The idea of a protected class in law gives us an ethic of liberation. And the for- now becomes less necessary since the pro- mer always involves the use of culture and tections offered to that class are offered to symbolic production in either furthering all. Thus, to belatedly answer my student, the liberation or the oppression of people normal parking becomes a subset of hand- with disabilities. icapped parking. An ethics of the body provides us with a The dismodernist subject is in fact dis- special insight into the complex and by now abled, only completed by technology and dead end of identity politics. The problem by interventions. Rather than the idea of presented to us by identity politics is the the complete, independent subject, en- emphasis on an exclusivity surrounding a dowed with rights (which are in actuality specific so-called identity. Writers like Ken- conferred by privilege), the dismodernist neth Warren, K. Anthony Appiah, Paul Gil- subject sees that metanarratives are only roy, Wendy Brown, Walter Benn Michaels, “socially created” and accepts them as that, Thomas Holt, and others are now critiqu- gaining help and relying on legislation, law, ing the notion of a politics based on specif- and technology. It acknowledges the social ic identities and on victim status. Disability and technological to arrive at functionality. studies can provide a critique of and a poli- As the quadriplegic is incomplete without tics to discuss how all groups, based on the motorized wheelchair and the controls physical traits or markings, are selected for manipulated by the mouth or tongue, so disablement by a larger system of regula- the citizen is incomplete without infor- tion and signification. So it is paradoxically mation technology, protective legislation, the most marginalized group—people with and globalized forms of securing order and disabilities—who can provide the broadest peace. The fracturing of identities based on way of understanding contemporary sys- somatic markers will eventually be seen as tems of oppression. a device to distract us from the unity of new This new way of thinking, which I am ways of regarding humans and their bodies calling dismodernism, rests on the op- to further social justice and freedom. erative notion that postmodernism is still We can thus better understand how the based on a humanistic model. Politics have by now outdated postmodern subject is a been directed toward making all identities ruse to disguise the hegemony of normal- equal under a model of the rights of the cy. Foucault is our best example. His work dominant, often white, male, “normal” is, as Edward Said has noted, in Power, subject. In a dismodernist mode, the ideal Politics and Culture: Interview with is not a hypostatization of the normal (that Edward W. Said, a homage to power, not 276 | LENNARD J. DAVIS

an undermining of it. Said calls Foucault a the efforts of various identities to escape “scribe” of power because of his fascination oppression based on their category of op- with the subject. For Foucault the state is pression. That struggle is not over and power and citizens are docile bodies. This must continue. While there is no race, there overtly sadomasochistic model is one that is still racism. But dismodernism argues for is part of a will-to-power, a fantasy of ut- a commonality of bodies within the notion ter power and utter subjection. That model of difference. It is too easy to say, “We’re all appeared to be postmodern, but was in disabled.” But it is possible to say that we fact the nineteenth century of Freud, Sa- are all disabled by injustice and oppres- cher-Masoch, and imperialism writ large. sion of various kinds. We are all nonstan- Instead, dismodernism doesn’t require the dard, and it is under that standard that we abjection of wounds or docility to describe should be able to found the dismodernist the populace, or the identity groups with- ethic. in. Rather it replaces the binary of docil- What is universal in life, if there are ity and power with another—impairment universals, is the experience of the limita- and normalcy. Impairment is the rule, and tions of the body. Yet the fantasy of culture, normalcy is the fantasy. Dependence is the democracy, capitalism, sexism, and rac- reality, and independence grandiose think- ism, to name only a few ideologies, is the ing. Barrier-free access is the goal, and the perfection of the body and its activities. right to pursue happiness the false con- As Paul Gilroy writes, “The reoccurrence sciousness that obscures it. Universal de- of pain, disease, humiliation, grief, and sign becomes the template for social and care for those one loves can all contribute political designs. to an abstract sense of human similar- The rhizomatic vision of Deleuze’s so- ity powerful enough to make solidarities lution to the postmodernist quandary based on cultural particularity appear presented by power, with its decentered, suddenly trivial.”23 It is this aspect of ex- deracinated notion of action, along with perience, a dismodern view, that seems the neorationalist denial of universals, suddenly to be, at the beginning of the leaves us with a temporary, contingent way twenty-first century, about the only one we of thinking about agency and change. The can justify. dismodernist vision allows for a clearer, more concrete mode of action—a clear no- NOTES tion of expanding the protected class to the entire population; a commitment to remov- 1. For more on this, see a special issue of the Berke- ley Journal of Employment and Labor Law 22:1 ing barriers and creating access for all. This (2000), and also Leslie Francis and Anita Silvers, includes removing the veil of ideology from eds., Americans with Disabilities: Exploring Im- the concept of the normal, and denying the plications of the Law for Individuals and Institu- locality of identity. This new ethic permits, tions (New York: Routledge, 2000). indeed encourages, cosmopolitanism, a 2. I have written more about this aspect of identity and disability in chapter 5 of Bending Over Back- new kind of empire, to rephrase Hardt and wards: Disability, Dismodernism and Other Dif- Negri, that relies on the electronic senses ficult Positions (New York: New York University as well as the neoclassical five. It moves Press, 2002). beyond the fixity of the body to a literally 3. See Ian Hacking, The Social Construction of constructed body, which can then be recon- What? (Cambridge: Harvard UP, 1999; rpt. 2001). 4. I have made this point elsewhere. See Lennard J. structed with all the above goals in mind. Davis, Enforcing Normalcy: Disability, Deafness, Clearly, what I am describing is the be- and the Body (London: Verso, 1995) for greater ginning of a long process. It began with exposition. THE END OF IDENTITY POLITICS: ON DISABILITY AS AN UNSTABLE CATEGORY | 277

5. Let us not even consider the further problem that 13. Steven Steinberg, The Ethnic Myth (Boston: Bea- in order to locate a gene, we have to cordon off con Press, 2001). “good DNA” from “junk” DNA may have a role to 14. See Wendy Brown, States of Injury: Power and play in “influencing” the good DNA. Thus the ex- Freedom in Late Modernity (Princeton: Princeton act science of genetics begins to resemble other UP, 1995). explanatory systems requiring influence based on 15. Nicholas Wade, New York Times (October 4, humors, astrological causes, and so on. Indeed, 2001 many human traits are polygenic, involving sev- 16. Gina Kolata, New York Times (September 28, eral different genes working in coordination with 2001), A14. each other and with other processes. 17. See Ian Hacking’s discussion of transient men- 6. Raymond Bonniet and Sarah Rimer, New York tal illnesses in Mad Travelers: Reflections on the Times (August 24, 2001), A13 Reality of Transient Mental Illnesses (Charlottes- 7. See Steve Olsen, “The Genetic Archeology of ville: University of Virginia, 1998). Race,” Atlantic Monthly (April 2001). 18. For an extensive discussion of the legal issues 8. See works like Tukufu Zuberi, Thicker than Blood: around disability, see a special issue of the Berke- An Essay on How Racial Statistics Lie (Minneapo- ley Journal of Employment and Labor Law 21: 1 lis: University of Minnesota Press, 2001). (2000). For background on many of these issues, 9. For the most complete discussion of HeLa cells see Ruth O’Brien, Crippled Justice: The History in regard to racial politics, see Hannah Landeck- of Modern Disabiltiy Policy in the Workplace er, “Immortality, In Vitro: A History of the HeLa (Chicago: U of Chicago P, 2001). Cell Line,” in Biotechnology and Culture: Bodies, 19. Søren Kierkegaard, Fear and Trembling, trans. Anxieties, Ethics, ed. Paul E. Brodwin (Blooming- Alastair Hanney (London: Penguin, 1985), 83 ton: Indiana UP, 2000), 53–72. 20. See my chapter, “Introduction, Disability, Nor- 10. Dwight Garner, New York Times Sunday Maga- mality and Power,” in this volume. zine (March 25, 2001). 21. As an assignment, I ask my students to tally up 11. Although, as Dorothy Roberts has pointed out, the cost of all the products they buy for their prenatal technology is still very much a site of ra- bodies. The annual cost is astounding. cial discrimination. See her “Race and the New Re- 22. Magazines like We and Poz generate income by production,” Hastings Law Journal 47: 4 (1996). selling trendy and sexy wheelchairs and oth- 12. For more on this subject, see Leslie Feinberg, er equipment for people with disabilities. Of Transgender Warriors: Making History from Joan course, the routine body care products are called of Arc to Dennis Rodman (Boston: Beacon Press, for here as well. 1996). Also see Bob Beale, “New Insights into the 23. Paul Gilroy, Against Race: Imagining Political X and Y Chromosomes,” The Scientist (July 23, Culture beyond the Color Line (Cambridge: Har- 2001) 15 (15): 18. vard UP, 2000), 17. CHAPTER 21

Disability and the Theory of Complex Embodiment—For Identity Politics in a New Register Tobin Siebers

THE IDEOLOGY OF ABILITY in time. The briefest look at history reveals that human beings are fragile. Human life We seem caught as persons living finite lives confronts the overwhelming reality of sick- between two sets of contradictory ideas ness, injury, disfigurement, enfeeblement, about our status as human beings. The first old age, and death. Natural disasters, acci- contradiction targets our understanding dents, warfare and violence, starvation, of the body itself. On the one hand, bodies disease, and pollution of the natural envi- do not seem to matter to who we are. They ronment attack human life on all fronts, contain or dress up the spirit, the soul, the and there are no survivors. This is not to mind, the self. I am, as Descartes explained, say that life on this earth is wretched and the thinking part. At best, the body is a vehi- happiness nonexistent. The point is sim- cle, the means by which we convey who we ply that history reveals one unavoidable are from place to place. At worst, the body truth about human beings—whatever our is a fashion accessory. We are all playing destiny as a species, we are as individuals at Dorian Gray, so confident that the self feeble and finite. And yet the vision of the can be freed from the dead weight of the future to which we often hold promises body, but we have forgotten somehow to an existence that bears little or no resem- read to the end of the novel. On the other blance to our history. The future obeys an hand, modern culture feels the urgent need entirely different imperative, one that com- to perfect the body. Whether medical sci- mands our triumph over death and contra- entists are working on a cure for the com- dicts everything that history tells us about mon cold or the elimination of all disease, our lot in life. Many religions instruct that a cure for cancer or the banishment of human beings will someday win eternal death, a cure for HIV/AIDS or control of the life. Science fiction fantasizes about aliens genetic code, their preposterous and yet who have left behind their mortal sheath; rarely questioned goal is to give everyone a they are superior to us, but we are evolv- perfect body. We hardly ever consider how ing in their direction. Cybernetics treats incongruous is this understanding of the human intelligence as software that can be body—that the body seems both inconse- moved from machine to machine. It prom- quential and perfectible. ises a future where human beings might A second but related contradiction tar- be downloaded into new hardware when- gets the understanding of the human being ever their old hardware wears out. The DISABILITY AND THE THEORY OF COMPLEX EMBODIMENT | 279 reason given for exploring human cloning This book pursues a critique of one of is to defeat disease and aging. Apparently, these powerful ideologies—one I call the in some future epoch, a quick trip to the ideology of ability. The ideology of ability spare-parts depot will cure what ails us; is at its simplest the preference for able- people will look better, feel healthier, and bodiedness. At its most radical, it defines live three times longer. Finally, the human the baseline by which humanness is deter- genome project, like eugenics before it, mined, setting the measure of body and places its faith in a future understanding mind that gives or denies human status of human genetics that will perfect human to individual persons. It affects nearly all characteristics and extend human life of our judgments, definitions, and values indefinitely. about human beings, but because it is dis- However stark these contradictions, criminatory and exclusionary, it creates however false in their extremes, they seem social locations outside of and critical of credible in relation to each other. We are its purview, most notably in this case, the capable of believing at once that the body perspective of disability. Disability defines does not matter and that it should be per- the invisible center around which our con- fected. We believe at once that history tradictory ideology about human ability charts the radical finitude of human life revolves. For the ideology of ability makes but that the future promises radical infini- us fear disability, requiring that we imag- tude. That we embrace these contradic- ine our bodies are of no consequence while tions without interrogating them reveals dreaming at the same time that we might that our thinking is steeped in ideology. perfect them. It describes disability as what Ideology does not permit the thought of we flee in the past and hope to defeat in the contradiction necessary to question it; it future. Disability identity stands in uneasy sutures together opposites, turning them relationship to the ideology of ability, pre- into apparent complements of each other, senting a critical framework that disturbs smoothing over contradictions, and mak- and critiques it. ing almost unrecognizable any perspec- One project of this book is to define the tive that would offer a critique of it. In fact, ideology of ability and to make its work- some cultural theorists claim to believe that ings legible and familiar, despite how ideology is as impenetrable as the Freudian imbricated it may be in our thinking and unconscious—that there is no outside to practices, and despite how little we notice ideology, that it can contain any negative, its patterns, authority, contradictions, and and that it sprouts contradictions with- influence as a result. A second and more out suffering them (see Goodheart 1996; important project is to bring disability out Siebers 1999). I argue another position: of the shadow of the ideology of ability, to ideology creates, by virtue of its exclusion- increase awareness about disability, and to ary nature, social locations outside of itself illuminate its kinds, values, and realities. and therefore capable of making episte- Disability creates theories of embodiment mological claims about it. The arguments more complex than the ideology of abil- that follow here are based on the conten- ity allows, and these many embodiments tion that oppressed social locations create are each crucial to the understanding of identities and perspectives, embodiments humanity and its variations, whether phys- and feelings, histories and experiences that ical, mental, social, or historical. These two stand outside of and offer valuable knowl- projects unfold slowly over the course of edge about the powerful ideologies that my argument for the simple reason that seem to enclose us. both involve dramatic changes in thinking. 280 | TOBIN SIEBERS

The level of literacy about disability is so conditions, thoughts, goals, intentions, low as to be nonexistent, and the ideology and desires. of ability is so much a part of every action, • If one is able-bodied, one is not really thought, judgment, and intention that aware of the body. One feels the body its hold on us is difficult to root out. The only when something goes wrong with it. sharp difference between disability and • The able body has a great capacity for ability may be grasped superficially in the self-transformation. It can be trained to idea that disability is essentially a “medi- do almost anything; it adjusts to new sit- cal matter,” while ability concerns natural uations. The disabled body is limited in gifts, talents, intelligence, creativity, physi- what it can do and what it can be trained cal prowess, imagination, dedication, the to do. It experiences new situations as eagerness to strive, including the capacity obstacles. and desire to strive—in brief, the essence of • Disability is always individual, a property the human spirit. It is easy to write a short of one body, not a feature common to all list about disability, but the list concern- human beings, while ability defines a fea- ing ability goes on and on, almost without ture essential to the human species. end, revealing the fact that we are always • Disability can be overcome through will dreaming about it but rarely thinking power or acts of the imagination. It is not critically about why and how we are real but imaginary. dreaming. • “Disability’s no big deal,” as Mark O’Brien I resort at the outset to the modern con- writes in his poem, “Walkers” (1997, 36). vention of the bullet point to introduce the • It is better to be dead than disabled. ideology of ability as simply as possible. The • Nondisabled people have the right to bullet points follow without the thought of choose when to be able-bodied. Disabled being exhaustive or avoiding contradiction people must try to be as able-bodied as and without the full commentary that they possible all the time. deserve. Some of the bullets are intended • Overcoming a disability is an event to be to look like definitions; others describe celebrated. It is an ability in itself to be ability or disability as operators; others able to overcome disability. still gather stereotypes and prejudices. The • The value of a human life arises as a point is to begin the accumulation of ideas, question only when a person is disabled. narratives, myths, and stereotypes about Disabled people are worth less than disability whose theory this book seeks to nondisabled people, and the difference advance, to provide a few small descrip- is counted in dollars and cents. tions on which to build further discussion • Disabilities are the gateway to special of ability as an ideology, and to start read- abilities. Turn disability to an advantage. ers questioning their own feelings about • Loss of ability translates into loss of socia- ability and disability: bility. People with disabilities are bitter, angry, self-pitying, or selfish. Because • Ability is the ideological baseline by which they cannot see beyond their own pain, humanness is determined. The lesser the they lose the ability to consider the feel- ability, the lesser the human being. ings of other people. Disability makes • The ideology of ability simultaneously narcissists of us all. banishes disability and turns it into a • People who wish to identify as disabled principle of exclusion. are psychologically damaged. If they • Ability is the supreme indicator of could think of themselves as able-bodied, value when judging human actions, they would be healthier and happier. DISABILITY AND THE THEORY OF COMPLEX EMBODIMENT | 281

To reverse the negative connotations of real reason is that identity is seen as a crutch disability apparent in this list, it will be for the person who needs extra help, who is necessary to claim the value and variety of in pain, who cannot think independently. I disability in ways that may seem strange to use the word “crutch” on purpose because readers who have little experience with dis- the attack on identity is best understood in ability studies. But it is vital to show to what the context of disability. extent the ideology of ability collapses once According to Linda Martin Alcoff’s we “claim disability” as a positive identity extensive and persuasive analysis in Visible (Linton 1998). It is equally vital to under- Identities, the current rejection of identity stand that claiming disability, while a sig- has a particular philosophical lineage, one nificant political act, is not only political but driven, I believe, by the ideology of ability also a practice that improves quality of life (2006, 47–83). The line of descent begins for disabled people. As documented in the with the Enlightenment theory of rational case of other minority identities, individu- autonomy, which represents the inability als who identify positively rather than neg- to reason as the sign of inbuilt inferiority. atively with their disability status lead more Usually, the defense of reason attacked productive and happier lives. Feminism, the non-Europeans as intellectually defective, black and red power movements, as well as but because these racist theories relied on gay and disability pride—to name only a the idea of biological inferiority, they nec- few positive identity formations—win tan- essarily based themselves from the start gible benefits for their members, freeing on the exclusion of disability. “The norm them not only from the violence, hatred, of rational maturity,” Alcoff makes clear, and prejudice directed toward them but “required a core self stripped of its iden- also providing them with both shared expe- tity. Groups too immature to practice this riences to guide life choices and a commu- kind of abstract thought or to transcend nity in which to prosper. their ascribed cultural identities were Some readers with a heightened sense of deemed incapable of full autonomy, and paradox may object that claiming disabil- their lack of maturity was often ‘explained’ ity as a positive identity merely turns dis- via racist theories of the innate inferior- ability into ability and so remains within its ity of non-European peoples” (2006, 22). ideological horizon. But disability identity The Enlightenment view then descends to does not flounder on this paradox. Rather, two modern theories, each of which sees the paradox demonstrates how difficult it dependence on others as a form of weak- is to think beyond the ideological horizon ness that leads to oppressive rather than of ability and how crucial it is to make the cooperative behavior. The first theory attempt. For thinking of disability as abil- belongs to Freud, for whom strong iden- ity, we will see, changes the meaning and tity attachments relate to pathological usage of ability. psychology and figure as symptoms of ego dysfunction. In psychoanalysis, in effect, a lack lies at the heart of identity (2006, MINORITY IDENTITY AS THEORY 74), and those unable to overcome this Identity is out of fashion as a category in lack fall into patterns of dependence and critical and cultural theory. While it has aggression. Second, in Sartre’s existential been associated by the Right and Left with ontology, identity is alienated from the real self-victimization, group think, and politi- self. Identity represents for Sartre a social cal correctness, these associations are not role, linked to bad faith and motivated by the real reason for its fall from grace. The moral failing and intellectual weakness, 282 | TOBIN SIEBERS

that tempts the self with inauthentic exis- in the analysis of minority identity—only tence, that is, an existence insufficiently people of color, Jews, Muslims, gay, les- free from the influence of others (2006, bian, bisexual, and transgendered people, 68). women, and people with disabilities seem to possess unhealthy identities. It is as if identity itself occupied a minority position Dossier No. 1 The Nation November 6, 2006 in present critical and cultural theory—for Show Him the Money those who reject identity appear to do so By Katha Pollitt only because of its minority status, a status I wanted to admire The Trouble with Diversity, linked again and again to disability. Walter Benn Michaels’s much-discussed Moreover, the rejection of minority polemic against identity politics and eco- identity repeats in nearly every case the nomic inequality. Like him, I’m bothered same psychological scenario. The minor- by the extent to which symbolic politics has ity identity, a product of damage inflicted replaced class grievances on campus, and off systematically on a people by a dominant it too: the obsessive cultivation of one’s roots, culture, is rearticulated by the suffering the fetishizing of difference, the nitpicky group as self-affirming, but because the moral one-upmanship over language. Call an identity was born of suffering, it is suppos- argument “lame” on one academic-feminist edly unable to shed its pain, and this pain list I’m on and you’ll get—still!—an electronic soon comes to justify feelings of selfishness, earful about your insensitivity to the disabled . . . . resentment, bitterness, and self-pity—all of which combine to justify the oppression of other people. Thus, J. C. Lester (2006) These two strains of thinking, despite their complains that “the disabled are in danger differences, support the contemporary dis- of being changed,” because of disability trust of identity. Thus, for Michel Foucault studies, “from the proper object of decent and Judith Butler—to name two of the most voluntary help, where there is genuine influential theorists on the scene today— need, into a privileged and growing inter- identity represents a “social necessity that est group of oppressors of more ordinary is also a social pathology” (Alcoff 2006, 66); people.” Nancy Fraser also points out that there supposedly exists no form of iden- identity politics “encourages the reification tity not linked ultimately to subjugation by of group identities” and promotes “con- others. In short, contemporary theorists formism, intolerance, and patriarchalism” banish identity when they associate it with (2000, 113, 112). Even if this tired scenario lack, pathology, dependence, and intellec- were credible—and it is not because it tual weakness. Identity in their eyes is not derives from false ideas about disability—it merely a liability but a disability. is amazing that so-called politically minded Notice, however, that identity is thought people are worried that a few minority defective only in the case of minorities, groups might somehow, some day, gain the whereas it plays no role in the critique of power to retaliate for injustice, when the majority identifications, even among theo- wealthy, powerful, and wicked are actively rists who assail them. For example, no one plundering the globe in every conceivable attacks Americanness specifically because manner: the decimation of nonindustrial it is an identity. It may be criticized as countries by the industrial nations, arms- an example of nationalism, but identity trafficking, enforcement of poverty to receives little or no mention in the cri- maintain the circuit between cheap labor tique. Identity is attacked most frequently and robust consumerism, global warming, DISABILITY AND THE THEORY OF COMPLEX EMBODIMENT | 283 sexual trafficking of women, industrial that they will grow stranger and stranger as pollution by the chemical and oil compa- the reader progresses, until they begin to nies, inflation of costs for drugs necessary invoke feelings of horror and disgust at the to fight epidemics, and the cynical failure blatant and persistent prejudices directed by the wealthiest nations to feed their own against disabled people. The dossier rep- poor, not to mention starving people out- resents a deliberate act of identity poli- side their borders. tics, and I offer no apology for it because My argument here takes issue with those identity politics remains in my view the who believe that identity politics either most practical course of action by which to springs from disability or disables people address social injustices against minority for viable political action. I offer a defense peoples and to apply the new ideas, narra- of identity politics and a counterargument tives, and experiences discovered by them to the idea, embraced by the Right and to the future of progressive, democratic Left, that identity politics cannot be justi- society. fied because it is linked to pain and suffer- Identity is neither a liability nor a dis- ing. The idea that suffering produces weak ability. Nor is it an ontological property or a identities both enforces the ideology of state of being. Identity is, properly defined, ability and demonstrates a profound mis- an epistemological construction that understanding of disability: disability is contains a broad array of theories about not a pathological condition, only analyz- navigating social environments. Manuel able via individual psychology, but a social Castells calls identity a collective mean- location complexly embodied. Identities, ing, necessarily internalized by individuals narratives, and experiences based on dis- for the purpose of social action (1997, 7), ability have the status of theory because while Charles Taylor argues, “My identity is they represent locations and forms of defined by the commitments and identifi- embodiment from which the dominant cations which provide the frame or horizon ideologies of society become visible and within which I can try to determine from open to criticism. One of my specific case to case what is good, or valuable, or tactics throughout this book is to tap this what ought to be done, or what I endorse theoretical power by juxtaposing my argu- or oppose” (1987, 27). Alcoff explains that ment with dossier entries detailing dis- “identity is not merely that which is given ability identities, narratives, images, and to an individual or group, but is also a way experiences. The dossier is compiled for of inhabiting, interpreting, and working the most part from news stories of the kind through, both collectively and individu- that appear in major newspapers across ally, an objective social location and group the country every day, although I have history” (2006, 42). We do well to follow avoided the feel-good human-interest sto- these writers and to consider identity a ries dominating the news that recount how theory-laden construction, rather than a their disabled protagonists overcome their mere social construction, in which knowl- disabilities to lead “normal” lives. Rather, edge for social living adheres—though not the dossier tends to contain testimony always and necessarily the best knowledge. about the oppression of disabled people, Thus, identity is not the structure that cre- sometimes framed in their own language, ates a person’s pristine individuality or sometimes framed in the language of their inner essence but the structure by which oppressors. At first, the dossier entries may that person identifies and becomes iden- have no particular meaning to those untu- tified with a set of social narratives, ideas, tored in disability studies, but my hope is myths, values, and types of knowledge of 284 | TOBIN SIEBERS

varying reliability, usefulness, and verifi- one hopes, to an accumulation of knowl- ability. It represents the means by which edge about how oppression works. the person, qua individual, comes to join Minority identity discovers its theoreti- a particular social body. It also represents cal force by representing the experiences the capacity to belong to a collective on the of oppression and struggle lived by minor- basis not merely of biological tendencies ity peoples separately but also precisely as but symbolic ones—the very capacity that minorities, for attention to the similari- distinguishes human beings from other ties between different minority identities animals. exposes their relation to oppression as well While all identities contain social as increases the chance of political solidar- knowledge, mainstream identities are less ity. According to the definition of Gary and critical, though not less effective for being Rosalind Dworkin, minority identity has so, because they are normative. Minority recognizable features that repeat across the identities acquire the ability to make epis- spectrum of oppressed people. “We pro- temological claims about the society in pose,” Dworkin and Dworkin write, “that which they hold liminal positions, owing a minority group is a group characterized precisely to their liminality. The early work by four qualities: identifiability, differential of Abdul JanMohamed and David Lloyd, power, differential and pejorative treat- for example, privileges the power of the ment, and group awareness” (1976, 17). minor as critique: “The study—and pro- These four features form the basis of my duction—of minority discourse requires, argument about minority identity as well, as an inevitable consequence of its mode with one notable addition—that minority of existence, the transgression of the very status also meet an ethical test judged both disciplinary boundaries by which culture relative to society and universally. These appears as a sublimated form with univer- features require, each one in turn, a brief sal validity. This makes it virtually the privi- discussion to grasp their collective simplic- leged domain of cultural critique” (1987, 9). ity and power and to arrive at a precise and The critique offered by minority identity is universal definition of minority identity on necessarily historical because it relies on which to base the elaboration of disability the temporal contingency of its marginal identity, to describe its relation to minority position. Different groups occupy minority identity in general, and to defend identity positions at different times, but this does politics as crucial to the future of minority not mean that their social location is any peoples and their quest for social justice less objective relative to their times. Nor and inclusion. does it suggest that structures of oppres- 1. Identifiability as a quality exists at sion differ in the case of every minority the heart of identity itself because we must identity. If history has taught us anything, be able to distinguish a group before we it is that those in power have the ability to can begin to imagine an identity. Often manipulate the same oppressive structures, we conceive of identifiability as involving dependent upon the same prejudicial rep- visible differences connected to the body, resentations, for the exclusion of different such as skin color, gender traits, gestures, groups. The experiences of contemporary affect, voice, and body shapes. These phys- minority people, once brought to light, ical traits, however, are not universal with resound backward in history, like a reverse respect to different cultures, and there may echo effect, to comment on the experiences be actions or cultural differences that also of past minority peoples, while at the same figure as the basis of identifiability. Note time these past experiences contribute, as well that identifiability exists in time, DISABILITY AND THE THEORY OF COMPLEX EMBODIMENT | 285 and time shifts its meaning. As a group is in society would be incomprehensible and identified, it acquires certain representa- ineffective for these purposes. tions, and the growth of representations Of course, people may identify them- connected to the group may then change selves. Especially in societies where groups how identifiability works. For example, are identified for differential and pejorative the existence of a group called disabled treatment, individuals belonging to these people produces a general idea of the peo- groups may internalize prejudices against ple in the group—although the existence themselves and do on their own the work of of the group does not depend on every making themselves identifiable. Jim Crow disabled person fitting into it—and it then laws in the American South counted on becomes easier, first, to identify people with people policing themselves—not drinking it and, second, to shift the meaning of the at a white water fountain if they were black, group definition. Fat people are not gener- for example. But the way in which individually considered disabled at this moment, als claim identifiability also changes as the but there are signs that they may be in the history of the group changes. A group may not too distant future (Kirkland 2006). Deaf be singled out for persecution, but as it and intersex people have resisted being grows more rebellious, it may work to pre- described as disabled; their future relation serve its identity, while transforming simul- to the identity of disabled people is not taneously the political values attached to it. clear. The American military’s policy, “Don’t ask, Two other obvious characteristics of don’t tell” in the case of gay soldiers, tries identifiability need to be stressed. First, to stymie the tendency of individuals to identifiability is tied powerfully to the rep- claim a positive minority identity for politi- resentation of difference. In cases where an cal reasons. existing minority group is not easily iden- 2. Differential power is a strong indi- tified and those in power want to isolate cator of the difference between majority the group, techniques will be used to pro- and minority identity; in fact, it may be the duce identifiability. For example, the Nazis most important indicator because minor- required that Jews wear yellow armbands ity status relies on differential power rather because they were not, despite Nazi rac- than on numbers. The numerical majority ist mythology, identifiably different from is not necessarily the most powerful group. Germans. Second, identity is social, and There are more women than men, and men so is the quality of identifiability. There are hold more political power and have higher many physical differences among human salaries for the same jobs. Numerical beings that simply do not count for identifi- advantage is significant, but a better indi- ability. It is not the fact of physical difference cator is the presence of social power in one that matters, then, but the representation group over another. Dworkin and Dworkin attached to difference—what makes the mention the American South in the 1950s difference identifiable. Representation is and South Africa under apartheid as good the difference that makes a difference. We examples of differential power located in might contend that there is no such thing a nonnumerical majority (12). Minorities as private identity in the same way that hold less power than majority groups. Wittgenstein claimed that private language 3. A central question is whether the does not exist. Identity must be represent- existence of differential treatment already able and communicable to qualify as iden- implies pejorative treatment. Allowing that tifiable. Identity serves social purposes, differential treatment may exist for legiti- and a form of identity not representable mate reasons—and it is not at all certain 286 | TOBIN SIEBERS

that we should make this allowance—the by actual qualities of the minority group, addition of pejorative treatment as a qual- and to the conviction that majority society ity of minority identity stresses the defin- is a disabling environment that must be ing connection between oppression and transformed by recourse to social justice. minority status. Differential and pejorative In other words, awareness is not merely treatment is what minority group mem- self-consciousness but an epistemology bers experience as a consequence of their that adheres in group identity status. It is minority position. It affects their economic the identity that brings down injustice ini- standing, cultural prestige, educational tially on the individual’s head. This iden- opportunities, and civil rights, among tity is constructed in such a way that it can other things. Discrimination as pejora- be supported only by certain false claims tive treatment often becomes the focus of and stereotypes. Resistance to these false identity politics, those concerted attempts claims is pursued and shared by members by minorities to protest their inferior and of the minority identity through coun- unjust status by forming political action terarguments about, and criticism of, the groups. existing state of knowledge. Thus, minority The emergence of identity politics, then, identity linked to group awareness achieves relies on a new epistemological claim. the status of a theoretical claim in itself, While it is not necessarily the case that a one in conflict with the mainstream and group will protest against discrimination, a valuable source of meaningful diversity. since there is a history of groups that accept Opponents of identity politics often argue inferior status and even fight to maintain that identity politics preserves the identi- it, the shift to a protest stance must involve ties created by oppression: these identities claims different from those supporting the are born of suffering, and embracing them discriminatory behavior. A sense of ineq- supposedly represents a form of self-vic- uity comes to pervade the consciousness of timization. This argument does not under- the minority identity, and individuals can stand that new epistemological claims are find no reasonable justification for their dif- central to identity politics. For example, ferential treatment. Individuals in protest societies that oppress women often assert against unjust treatment begin to develop that they are irrational, morally depraved, theories that oppose majority opinion not and physically weak. The minority iden- only about themselves but about the nature tity “woman,” embraced by feminist iden- of the society that supports the pejorative tity politics, disputes these assertions and behavior. They develop ways to represent presents alternative, positive theories the actions used to perpetuate the injustice about women. Identity politics do not pre- against them, attacking stereotypes, use of serve the persecuted identities created by violence and physical attack, and discrimi- oppressors because the knowledge claims nation. Individuals begin to constitute adhering in the new identities are com- themselves as a minority identity, mov- pletely different from those embraced by ing from the form of consciousness called the persecuting groups. internal colonization to one characterized Opponents of identity politics are not by a new group awareness. wrong, however, when they associate 4. Group awareness does not refer to minority identity with suffering. They are group identifiability but to the perception wrong because they do not accept that of common goals pursued through coop- pain and suffering may sometimes be eration, to the realization that differential resources for the epistemological insights and pejorative treatment is not justified of minority identity. This issue will arise DISABILITY AND THE THEORY OF COMPLEX EMBODIMENT | 287 whenever we consider disability identity, By suggesting that suffering is theory- since it is the identity most associated laden—that is, a sensation evaluative of with pain, and a great deal of discrimina- states of reality—I am trying to track how tion against people with disabilities derives and why minority identity makes episte- from the irrational fear of pain. It is not mological claims about society. All identity uncommon for disabled people to be told is social theory. Identities are the theories by complete strangers that they would kill that we use to fit into and travel through themselves if they had such a disability. the social world. Our identities have a con- Doctors often withhold treatment of minor tent that makes knowledge claims about illnesses from disabled people because the society in which they have evolved, and they believe they are better off dead—the we adjust our identities, when we can, to doctors want to end the suffering of their different situations to improve our chances patients, but these disabled people do not of success. But because mainstream iden- necessarily think of themselves as in pain, tities so robustly mimic existing social although they must suffer discriminatory norms, it is difficult to abstract their claims attitudes (Gill 2000; Longmore 2003, 149– about society. Identities in conflict with 203). Nevertheless, people with disabilities society, however, have the ability to expose are not the only people who suffer from its norms. Minority identity gains the sta- prejudice. The epistemological claims of tus of social critique once its content has minority identity in general are often based been sufficiently developed by groups that on feelings of injustice that are painful. unite to protest their unjust treatment by Wounds received in physical attacks may the society in which they live. pale against the suffering experienced in 5. In addition to the four qualities pro- the idea that one is being attacked because posed by Dworkin and Dworkin, groups one is unjustly thought inferior—and yet claiming minority identity need to meet an suffering may have theoretical value for ethical test. Minority identities make epis- the person in pain. While there is a long temological claims about the societies in history of describing pain and suffering which they hold liminal positions, but not as leading to egotism and narcissism—a all theories are equal in ethical content, metapsychology that plays an ancillary especially relative to minority identity, role in the evolution of the ideology of since it begins as a product of oppression ability—we might consider that the strong and acquires the status of social critique. focus given to the self in pain has episte- While matters ethical are notoriously dif- mological value.1 Suffering is a signal to the ficult to sort out, it is nevertheless worth self at risk, and this signal applies equally pausing briefly over how ethics relates to to physical and social situations. The body minority identity because ethical content signals with pain when a person is engaged may serve to check fraudulent claims of in an activity that may do that person phys- minority status. For example, in South ical harm. Similarly, consciousness feels Africa of recent date, the ideology of apart- pain when the individual is in social dan- heid represented the majority position ger. Suffering has a theoretical component because it held power, identified the nature because it draws attention to situations of minority identity, and dictated differen- that jeopardize the future of the individ- tial and pejorative treatment of those in ual, and when individuals who suffer from the minority. Today in South Africa, how- oppression gather together to share their ever, the apartheidists are no longer in the experiences, this theoretical component majority. Applying the theory of Dworkin may be directed toward political ends. and Dworkin, they might be construed as 288 | TOBIN SIEBERS

having a minority identity: they are iden- law minority political action groups merely tifiable, they have differential power, they because they encourage politicized identi- are treated pejoratively, and they possess ties would have to abolish other political group awareness—that is, they present a groups as well. set of claims that actively and consciously criticize majority society. They also believe DISABILITY AND THE THEORY OF themselves to be persecuted, and no doubt COMPLEX EMBODIMENT they feel suffering about their marginal position. Feminist philosophers have long argued Why are the apartheidists not deserving that all knowledge is situated, that it adheres of minority status? The answer is that the in social locations, that it is embodied, with theories contained in apartheidist iden- the consequence that they have been able tity do not pass an ethical test. The con- to claim that people in marginal social trast between its ethical claims and those positions enjoy an epistemological privi- of the majority are sufficiently striking to lege that allows them to theorize society recognize. The apartheidists propose a rac- differently from those in dominant social ist society as the norm to which all South locations (Haraway 1991, 183–201; Harding African citizens should adhere. Relative 1986). Knowledge is situated, first of all, to South African social beliefs and those because it is based on perspective. There is of many other countries, apartheid ideol- a difference between the knowledge pres- ogy is unacceptable on ethical grounds ent in a view of the earth from the moon because it is biased, violent, and oppres- and a view of the earth from the perspec- sive. Consequently, the apartheidists fail tive of an ant. We speak blandly of finding to persuade us with their claims, and we different perspectives on things, but dif- judge them not a minority group subject ferent perspectives do in fact give varying to oppression but a fringe group trying to conceptions of objects, especially social gain unlawful advantage over others. objects. Nevertheless, situated knowl- To summarize, the definition embraced edge does not rely only on changing per- here—and used to theorize disability spectives. Situated knowledge adheres in identity—does not understand minor- embodiment. The disposition of the body ity identity as statistical, fixed in time, or determines perspectives, but it also spices exclusively biological but as a politicized these perspectives with phenomenological identity possessing the ability to offer knowledge—lifeworld experience—that social critiques. There are those who attack affects the interpretation of perspective. minority identities precisely because they To take a famous example from Iris Young, are politicized, as if only minorities made the fact that many women “throw like a political arguments based on identity and girl” is not based on a physical difference. politicized identity in itself were a species The female arm is as capable of throwing a of defective attachment. But many other baseball as the male arm. It is the represen- examples of politicized identity exist on the tation of femininity in a given society that current scene—Democrats, Republicans, disables women, pressuring them to move Socialists, the Christian Coalition, the their bodies in certain, similar ways, and American Nazi Party, and so on. In fact, once they become accustomed to moving any group that forms a coalition to make in these certain, similar ways, it is difficult arguments on its own behalf and on the to retrain the body. “Women in sexist soci- behalf of others in the public forum takes ety are physically handicapped,” Young on a politicized identity. Arguments to out- explains. “Insofar as we learn to live out our DISABILITY AND THE THEORY OF COMPLEX EMBODIMENT | 289 existence in accordance with the definition environment and human ability. The young that patriarchal culture assigns to us, we are deaf woman who tries to pass for hearing physically inhibited, confined, positioned, will succeed only if she possesses signifi- and objectified” (2005, 171). It is possible cant knowledge about the informational to read the differential and pejorative treat- potential, manners, physical gestures, con- ment of women, as if it were a disability, on versational rituals, and cultural activities the surface of their skin, in muscle mass, in that define hearing in her society. Disabled corporeal agility. This form of embodiment people who pass for able-bodied are neither is also, however, a form of situated knowl- cowards, cheats, nor con artists but skillful edge about the claims being made about interpreters of the world from whom we all and by women in a given society. To con- might learn. sider some positive examples, the particular embodiment of a woman means that Dossier No. 2 New York Times Online she might, after experiencing childbirth, November 15, 2006 have a new and useful perception of physi- Officials Clash over Mentally Ill in Florida Jails cal pain. Women may also have, because By Abby Goodnough of menstruation, a different knowledge of blood. Female gender identity is differ- MIAMI, Nov. 14—For years, circuit judges ently embodied because of women’s role here have ordered state officials to obey Florida law and promptly transfer severely in reproductive labor. The presence of the mentally ill inmates from jails to state hos- body does not boil down only to perspec- pitals. But with few hospital beds available, tive but to profound ideas and significant Gov. Jeb Bush’s administration began flouting theories about the world. those court orders in August. . . . Embodiment is, of course, central to the “This type of arrogant activity cannot be field of disability studies. In fact, a focus on tolerated in an orderly society,” Judge Crockett disability makes it easier to understand that Farnell of Pinellas-Pasco Circuit Court wrote embodiment and social location are one in an Oct. 11 ruling. and the same. Arguments for the specific- State law requires that inmates found ity of disability identity tend to stress the incompetent to stand trial be moved from critical nature of embodiment, and the tacit county jails to psychiatric hospitals within 15 days of the state’s receiving the commitment or embodied knowledge associated with orders. Florida has broken that law for years, particular disabilities often justifies their provoking some public defenders to seek value to larger society. For example, George court orders forcing swift compliance. . . . Lane’s body incorporates a set of theoretical Two mentally ill inmates in the Escambia claims about architecture that the Supreme County Jail in Pensacola died over the last Court interprets in its ruling against the State year and a half after being subdued by guards, of Tennessee, finding that Lane’s inability to according to news reports. And in the Pinellas enter the Polk County Courthouse reveals County Jail in Clearwater, a schizophrenic a pattern of discrimination against peo- inmate gouged out his eye after waiting weeks ple with disabilities found throughout the for a hospital bed, his lawyer said. . . . American court system. Chapter 5 [in the The problem is not unique to Florida, although it is especially severe in Miami- original volume] explores disability pass- Dade County, which has one of the nation’s ing not as avoidance of social responsibil- largest percentages of mentally ill residents, ity or manipulation for selfish interests but according to the National Alliance for the as a form of embodied knowledge—forced Mentally Ill, an advocacy group. . . . into usage by prejudices against disability— In Miami, an average of 25 to 40 acutely about the relationship between the social psychotic people live in a unit of the main 290 | TOBIN SIEBERS

county jail that a lawyer for Human Rights and they need to be considered in tandem Watch, Jennifer Daskal, described as squalid with social forces affecting disability.2 The after visiting last month. . . . Ms. Daskal said theory of complex embodiment views the that some of the unit’s 14 “suicide cells”— economy between social representations dim, bare and designed for one inmate—were and the body not as unidirectional as in holding two or three at a time, and that the the social model, or nonexistent as in the inmates were kept in their cells 24 hours a day medical model, but as reciprocal. Complex except to shower. . . . embodiment theorizes the body and its representations as mutually transforma- But embodiment also appears as a bone of tive. Social representations obviously affect contention in disability studies because it the experience of the body, as Young makes seems caught between competing mod- clear in her seminal essay, but the body els of disability. Briefly, the medical model possesses the ability to determine its social defines disability as a property of the indi- representation as well, and some situa- vidual body that requires medical interventions exist where representation exerts no tion. The medical model has a biological control over the life of the body. orientation, focusing almost exclusively As a living entity, the body is vital and on disability as embodiment. The social chaotic, possessing complexity in equal model opposes the medical model by share to that claimed today by critical and defining disability relative to the social and cultural theorists for linguistic systems. built environment, arguing that disabling The association of the body with human environments produce disability in bod- mortality and fragility, however, forces a ies and require interventions at the level general distrust of the knowledge embod- of social justice. Some scholars complain ied in it. It is easier to imagine the body as a that the medical model pays too much garment, vehicle, or burden than as a com- attention to embodiment, while the social plex system that defines our humanity, any model leaves it out of the picture. Without knowledge that we might possess, and our returning to a medical model, which labels individual and collective futures. Disability individuals as defective, the next step for gives even greater urgency to the fears disability studies is to develop a theory of and limitations associated with the body, complex embodiment that values disabil- tempting us to believe that the body can be ity as a form of human variation. changed as easily as changing clothes. The The theory of complex embodiment ideology of ability stands ready to attack raises awareness of the effects of disabling any desire to know and to accept the dis- environments on people’s lived experi- abled body in its current state. The more ence of the body, but it emphasizes as well likely response to disability is to try to erase that some factors affecting disability, such any signs of change, to wish to return the as chronic pain, secondary health effects, body magically to a past era of supposed and aging, derive from the body. These last perfection, to insist that the body has disabilities are neither less significant than no value as human variation if it is not disabilities caused by the environment flawless. nor to be considered defects or devia- Ideology and prejudice, of course, tions merely because they are resistant to abound in all circles of human existence, change. Rather, they belong to the spec- labeling some groups and individuals as trum of human variation, conceived both inferior or less than human: people of as variability between individuals and as color, women, the poor, people with differ- variability within an individual’s life cycle, ent sexual orientations, and the disabled DISABILITY AND THE THEORY OF COMPLEX EMBODIMENT | 291 confront the intolerance of society on a other human being. Some disabilities can daily basis. In nearly no other sphere of be approached by demanding changes in existence, however, do people risk wak- how people with disabilities are perceived, ing up one morning having become the others- by changes in the built environment. persons whom they hated the day before. Some can be treated through medical care. Imagine the white racist suddenly trans- Other disabilities cannot be approached by formed into a black man, the anti-Semite changes in either the environment or the into a Jew, the misogynist into a woman, body. In almost every case, however, peo- and one might begin to approach the ple with disabilities have a better chance of change in mental landscape demanded by future happiness and health if they accept the onset of disability. We require the stuff their disability as a positive identity and of science fiction to describe these sce- benefit from the knowledge embodied in narios, most often for comic effect or pal- it. The value of people with disabilities to try moralizing. But no recourse to fiction is themselves does not lie in finding a way to required to imagine an able-bodied person return through medical intervention to a becoming disabled. It happens every min- former physical perfection, since that per- ute of every day. fection is a myth, nor in trying to conceal The young soldier who loses his arm on from others and themselves that they are an Iraqi battlefield wakes up in bed having disabled. Rather, embodiment seen com- become the kind of person whom he has plexly understands disability as an episte- always feared and whom society names as mology that rejects the temptation to value contemptible (Corbett 2004). Given these the body as anything other than what it circumstances, how might we expect him was and that embraces what the body has to embrace and to value his new identity? become and will become relative to the He is living his worst nightmare. He cannot demands on it, whether environmental, sleep. He hates what he has become. He dis- representational, or corporeal. tances himself from his wife and family. He begins to drink too much. He tries to use a INTERSECTIONAL IDENTITY functional prosthetic, but he loathes being COMPLEXLY EMBODIED seen with a hook. The natural prosthetic offered to him by Army doctors does not The ultimate purpose of complex embodi- really work, and he prefers to master tasks ment as theory is to give disabled people with his one good arm. He cannot stand greater knowledge of and control over their the stares of those around him, the looks bodies in situations where increased knowl- of pity and contempt as he tries to perform edge and control are possible. But the the- simple tasks in public, and he begins to ory has side benefits for at least two crucial look upon himself with disdain. debates raging on the current scene as well. The soldier has little chance, despite the First, complex embodiment makes a con- promise of prosthetic science, to return to tribution to influential arguments about his former state. What he is going through intersectionality—the idea that analyses of is completely understandable, but he needs social oppression take account of overlap- to come to a different conception of him- ping identities based on race, gender, sexu- self, one based not on the past but on the ality, class, and disability.3 While theorists present and the future. His body will con- of intersectionality have never argued for a tinue to change with age, and he may have simple additive model in which oppressed greater disabling conditions in the future. identities are stacked one upon another, a He is no different in this regard from any notion of disability embodiment helps to 292 | TOBIN SIEBERS

resist the temptation of seeing some iden- usually resulting in emotions of loss, shock, tities as more pathological than others, and pity at how dreadful it is to be disabled. and it offers valuable advice about how to Students experience their body relative to conceive the standpoint of others for the their usual embodiment, and they become purpose of understanding the prejudices so preoccupied with sensations of bodily against them. This is not to suggest that inadequacy that they cannot perceive the the intersection of various identities pro- extent to which their “disability” results duces the same results for all oppressed from social rather than physical causes. groups, since differences in the hierarchi- Notice that such games focus almost cal organization of race, gender, sexuality, entirely on the phenomenology of the indi- class, and disability do exist (Collins 2003, vidual body. The pretender asks how his or 212). Rather, it is to emphasize, first, that her body would be changed, how his or her intersectionality as a theory references personhood would be changed, by disabil- the tendency of identities to construct ity. It is an act of individual imagination, one another reciprocally (Collins 2003, then, not an act of cultural imagination. 208); second, that identities are not merely Moreover, simulations tempt students to standpoints where one may stand or try play the game of “What is Worse?” as they to stand but also complex embodiments; experiment with different simulations. Is and, third, that the ideology of ability uses it worse to be blind or deaf, worse to lose the language of pathology to justify label- a leg or an arm, worse to be paralyzed or ing some identities as inferior to others.4 deaf, mute, and blind? The result is a thor- For example, theorists of intersectional oughly negative and unrealistic impression identity might find useful the arguments in of disability. disability studies against disability simula- The critique of disability simulation has tion because they offer a view of complex applications in several areas of intersec- embodiment that enlarges standpoint the- tional theory. First, the practice of peeling ory. The applied fields of occupational ther- off minority identities from people to deter- apy and rehabilitation science sometimes mine their place in the hierarchy of oppres- recommend the use of disability simula- sion is revealed to degrade all minority tions to raise the consciousness of thera- identities by giving a one-dimensional view pists who treat people with disabilities. of them. It also fails to understand the ways Instructors ask students to spend a day in in which different identities constitute one a wheelchair or to try navigating classroom another. Identities may trump one another buildings blindfolded to get a better sense in the hierarchy of oppression, but inter- of the challenges faced by their patients. sectional identity, because embodied com- The idea is that students may stand for a plexly, produces not competition between time in the places occupied by disabled minority identities but “outsider” theories people and come to grasp their perspec- about the lived experience of oppression tives. Disability theorists have attacked the (see Collins 1998). Additionally, coming to use of simulations for a variety of reasons, an understanding of intersecting minority the most important being that they fail to identities demands that one imagine social give the student pretenders a sense of the location not only as perspective but also embodied knowledge contained in disas complex embodiment, and complex ability identities. Disability simulations of embodiment combines social and corpo- this kind fail because they place students real factors. Rather than blindfolding stu- in a time-one position of disability, before dents for a hour, then, it is preferable to send knowledge about disability is acquired, them off wearing sunglasses and carrying a DISABILITY AND THE THEORY OF COMPLEX EMBODIMENT | 293 white cane, in the company of a friend, to experiences of disabled people, the goal is restaurants and department stores, where to advance questions in identity and body they may observe firsthand the spectacle theory unresponsive to the social construc- of discrimination against blind people as tion model. Chapters 3, 4, and 6 [original passersby avoid and gawk at them, clerks volume] make an explicit adjustment in refuse to wait on them or condescend to social construction theory by focusing on ask the friend what the student is looking the realism of identities and bodies. By for, and waiters request, usually at the top “realism” I understand neither a positivistic of their lungs and very slowly (since blind claim about reality unmediated by social people must also be deaf and cognitively representations, nor a linguistic claim disabled), what the student would like about reality unmediated by objects of to eat.5 representation, but a theory that describes It is crucial to resist playing the game of reality as a mediation, no less real for being “What Is Worse?” when conceiving of inter- such, between representation and its social sectional identity, just as it is when imagin- objects.6 Rather than viewing representa- ing different disabilities. Asking whether it tion as a pale shadow of the world or the is worse to be a woman or a Latina, worse world as a shadow world of representation, to be black or blind, worse to be gay or poor my claim is that both sides push back in registers each identity as a form of ability the construction of reality. The hope is to that has greater or lesser powers to over- advance discourse theory to the next stage come social intolerance and prejudice. by defining construction in a radical way, Although one may try to keep the focus one that reveals constructions as possess- on society and the question of whether it ing both social and physical form. While oppresses one identity more than another, identities are socially constructed, they the debate devolves all too soon and often are nevertheless meaningful and real pre- to discussions of the comparative costs of cisely because they are complexly embod- changing society and making accommo- ied. The complex embodiment apparent in dations, comparisons about quality of life, disability is an especially strong example and speculations about whether social dis- to contemplate because the disabled body advantages are intrinsic or extrinsic to the compels one to give concrete form to the group. The compelling issue for minority theory of social construction and to take its identity does not turn on the question of metaphors literally. whether one group has the more arduous Consider an introductory example of the existence but on the fact that every minor- way in which disability complexly embodied ity group faces social discrimination, vio- extends the social construction argument lence, and intolerance that exert toxic and in the direction of realism. In August 2000 unfair influence on the ability to live life to a controversy about access at the Galehead the fullest (see Asch 2001, 406–7). hut in the Appalachian Mountains came to a climax (Goldberg 2000). The Appalachian Mountain Club of New Hampshire had just SOCIAL CONSTRUCTION constructed a rustic thirty-eight bed lodge COMPLEXLY EMBODIED at an elevation of thirty-eight hundred feet. Second, the theory of complex embodi- The United States Forest Service required ment makes it possible to move forward that the hut comply with the Americans arguments raging currently about social with Disabilities Act (ADA) and be acces- construction, identity, and the body. Aside sible to people with disabilities, that it have from proposing a theory better suited to the a wheelchair ramp and grab bars in larger 294 | TOBIN SIEBERS

toilet stalls. The Appalachian Mountain to relax physical standards for performing Club had to pay an extra $30,000 to $50,000 certain tasks. These tools are nevertheless for a building already costing $400,000 viewed as natural extensions of the body, because the accessible features were late and no one thinks twice about using them. design changes. Its members ridiculed The moment that individuals are marked as the idea that the building, which could be disabled or diseased, however, the expecta- reached only by a super-rugged 4.6 mile trail, tion is that they will maintain the maximum would ever be visited by wheelchair users, standard of physical performance at every and the media tended to take their side. moment, and the technologies designed to At this point a group from Northeast make their life easier are viewed as expen- Passage, a program at the University of New sive additions, unnecessary accommoda- Hampshire that works with people with tions, and a burden on society. disabilities, decided to make a visit to the The example of the Galehead hut Galehead hut. Jill Gravink, the director of exposes the ideology of ability—the ideol- Northeast Passage, led a group of three hik- ogy that uses ability to determine human ers in wheelchairs and two on crutches on status, demands that people with disabili- a twelve-hour climb to the lodge, at the end ties always present as able-bodied as pos- of which they rolled happily up the ramp sible, and measures the value of disabled to its front door. A local television reporter people in dollars and cents. It reveals how on the scene asked why, if people in wheel- constructed are our attitudes about iden- chairs could drag themselves up the trail, tity and the body. This is a familiar point, they could not drag themselves up the steps and usually social analysis comes to a into the hut, implying that the ramp was a conclusion here, no doubt because the waste of money. Gravink responded, “Why idea of construction is more metaphori- bother putting steps on the hut at all? Why cal than real. The implication seems to not drag yourself in through a window?” be that knowledge of an object as socially The design environment, Gravink constructed is sufficient to undo any of suggests pointedly, determines who is its negative effects. How many books and able-bodied at the Galehead lodge. The essays have been written in the last ten distinction between the disabled and non- years, whose authors are content with the disabled is socially constructed, and it is a conclusion that x, y, or z is socially con- rather fine distinction at that. Those who structed, as if the conclusion itself were a are willing and able to climb stairs are con- victory over oppression? sidered able-bodied, while those who are Far from being satisfied with this con- not willing and able to climb stairs are dis- clusion, my analysis here will always take it abled. However, those who do climb stairs as a point of departure from which to move but are not willing and able to enter the directly to the elucidation of embodied building through a window are not consid- causes and effects. Oppression is driven not ered disabled. It is taken for granted that by individual, unconscious syndromes but nondisabled people may choose when to be by social ideologies that are embodied, and able-bodied. In fact, the built environment precisely because ideologies are embodied, is full of technologies that make life easier their effects are readable, and must be read, for those people who possess the physi- in the construction and history of societ- cal power to perform tasks without these ies. When a Down syndrome citizen tries technologies. Stairs, elevators, escalators, to enter a polling place and is turned away, washing machines, leaf and snow blowers, a social construction is revealed and must eggbeaters, chainsaws, and other tools help be read. When wheelchair users are called DISABILITY AND THE THEORY OF COMPLEX EMBODIMENT | 295 selfish if they complain about the inaccessi- social ideologies—which means that bility of public toilets, a social construction these bodies display the workings of ide- is revealed and must be read (Shapiro 1994, ology and expose it to critique and the 126–27). When handicapped entrances to demand for political change. buildings are located in the rear, next to garbage cans, a social construction is revealed NOTES and must be read. When a cosmetic surgeon removes the thumb on a little boy’s 1. The nature of pain and the methodology of its right hand because he was born with no study are diverse because they involve the definition of emotion and consciousness. Aydede col- thumb on his left hand, a social construc- lects a strong sampling of contemporary views tion is revealed and must be read (Marks about pain; one of which, the perceptual theory, 1999, 67). What if we were to embrace the appeals to the idea that pain has the capacity to metaphor implied by social construction, if signal changes in states of reality (59–98). we required that the “construction” in social 2. Snyder and Mitchell express this view powerfully throughout Cultural Locations of Disability. For construction be understood as a building, example: “As Darwin insisted in On the Origin of as the Galehead hut for example, and that Species, variation serves the good of the species. its blueprint be made available? Not only The more variable a species is, the more flex- would this requirement stipulate that we ible it is with respect to shifting environmental elaborate claims about social construction forces. Within this formulation, one that is central to disability studies, variations are features in concrete terms, it would insist that we of biological elasticity rather than a discordant locate the construction in time and place expression of a ‘natural’ process gone awry” as a form of complex embodiment. (2006, 70). Whenever anyone mentions the idea of 3. The literature on intersectionality is now vast. social construction, we should ask on prin- Some key texts relating to disability include Barbee and Little; Beale; Butler and Parr; Fawcett; ciple to see the blueprint—not to challenge Hayman and Levit; Ikemoto; Jackson-Braboy and the value of the idea but to put it to practi- Williams; Martin; O’Toole (2004); and Tyjewski. cal use—to map as many details about the 4. While not aware of disability studies per se, construction as possible and to track its Johnny Williams provides an excellent inter- political, epistemological, and real effects sectional analysis of stereotypical conflations of race and class, arguing that American soci- in the world of human beings. To encour- ety explains the social and economic failures of age this new requirement, I cite three minority groups in terms of personal “inabili- familiar ideas about social construction, ties,” while maintaining the belief that “social as currently theorized, from which flow— arrangements are fundamentally just” (221). or at least should—three methodological 5. Catherine Kudlick proposed, on the DS-HUM listserve, an exercise similar to this one to principles. These three principles underlie replace traditional and biased disability simula- the arguments to follow, suggesting how to tions often used by classroom instructors. I am look for blueprints and how to begin read- indebted to her discussion. ing them: 6. Philosophical realism has a number of varieties. The particular lineage of interest to me focuses on Hilary Putnam in philosophy and Richard • Knowledge is socially situated—which Boyd in the philosophy of science. Satya P. means that knowledge has an objective Mohanty imports Boyd’s ideas into the humani- and verifiable relation to its social loca- ties in general and critical theory in particular, tion. putting the concept of realism in the service of • Identities are socially constructed— minority studies in novel and convincing ways. Other important figures in philosophical realism which means that identities contain working in the humanities include Linda Martin complex theories about social reality. Alcoff, Michael Hames-Garcia, Paula M. L. Moya, • Some bodies are excluded by dominant and Sean Teuton. 296 | TOBIN SIEBERS

REFERENCES Goodheart, Eugene. The Reign of Ideology. New York: Columbia University Press, 1996. Alcoff, Linda Martin. Real Knowing: New Versions of Haraway, Donna J. Simians, Cyborgs, and Women: Coherence Theory. Ithaca, N.Y.: Cornell University The Reinvention of Nature. New York: Routledge, Press, 1996. 1991. ——. “Who’s Afraid of Identity Politics?” Reclaiming Harding, Sandra. The Science Question in Feminism. Identity: Realist Theory and the Predicament of Ithaca, N.Y.: Cornell University Press, 1986. Postmodernism. Ed. Paula M. L. Moya and Michael JanMohamed, Abdul, and David Lloyd. “Introduction: R. Hames-Garcia. Berkeley and Los Angeles: Minority Discourse—What Is to Be Done?” Cultural University of California Press, 2000. Pp. 312–44. Critique 7 (1987): 5–17. ——. Visible Identities: Race, Gender and the Self. New Kirkland, Anna. “What’s at Stake in Fatness as a York: Oxford University Press, 2006. Disability?” Disability Studies Quarterly 26.1, (2006). Alcoff, Linda Martin, Michael Hames-Garcia, Satya P. Available at www.dsq-sds.org/_articles_htmlJ2006/ Mohanty, and Paula M. L. Moya, eds. Identity Politics winter/kirkland.asp (accessed November 17, Reconsidered. New York: Palgrave Macmillan, 2006. 2006). Asch, Adrienne, and Harilyn Rousso. “Therapists Lester, J. C. “The Disability Studies Industry.” with Disabilities: Theoretical and Clinical Issues.” Libertarian Alliance, September 26, 2002. Available Psychiatry 48 (1985): 1–12. at www.la-articles.org.uk/dsi.htm (accessed Asch, Adrienne, and Michelle Fine. Women with November 11, 2006). Disabilities: Essays in Psychology, Culture, and Linton, Simi. Claiming Disability: Knowledge and Politics. Philadelphia: Temple University Press, 1988. Identity. New York: New York University Press, Asch, Adrienne. “Critical Race Theory, Feminism, 1998. and Disability: Reflections on Social Justice and Linton, Simi, Susan Mello, and John O’Neill. “Disability Personal Identity.” Ohio State Law Journal 62.1 Studies: Expanding the Parameters of Diversity.” (2001): 391–423. Radical Teacher 47 (1995): 4–10. Castells, Manuel. The Power of Identity. 2nd ed. Longmore, Paul. Why I Burned My Book and Other Oxford: Blackwell, 1997 (2004). Essays on Disability. Philadelphia: Temple Collins, Patricia Hill. “Some Group Matters: University Press, 2003. Intersectionality, Situated Standpoints, and Black Marks, Deborah. Disability: Controversial Debates Feminist Thought.” A Companion to African- and Psychosocial Perspectives. London: Routledge, American Philosophy. Ed. Tommy L. Lott and John 1999. P. Pittman. Malden: Blackwell, 2003. Pp. 205–29. O’Brien, Mark. “On Seeing a Sex Surrogate.” The Sun ——. “Learning from the Outsider within Revisited.” 174 (May), 1990. Available at www.pacificnews. Fighting Words: Black Women and the Search for org/marko/sex-surrogate.html (accessed April 29, Justice. Minneapolis: University of Minnesota 2005). Press, 1998. Pp. 3–10. ——. The Man in the Iron Lung. Berkeley, Calif.: Corbett Sara. “The Permanent Scars of Iraq.” New Lemonade Factory, 1997. York Times Magazine, 15 February 2004: 34–41, 58, ——. N.d. “Questions I Feared the Journalist Would 60, 66. Ask.” Mark O’Brien Papers, BANC MSS 99/247 Dworkin, Anthony Gary, and Rosalind J. Dworkin, eds. c. Bancroft Library, University of California, The Minority Report: An Introduction to Racial, Berkeley. Ethnic, and Gender Relations. New York: Praeger, O’Brien, Mark, with Gillian Kendall. How I Became 1976. a Human Being: A Disabled Man’s Quest for Fraser, Nancy. “Rethinking Recognition.” New Left Independence. Madison: University of Wisconsin Review 3 (May–June 2000): 107–20. Press, 2003. Gill, Carol J. “Health Professionals, Disability, and Shapiro, Joseph. No Pity: People with Disabilities Assisted Suicide: An Examination of Relevant Forging a New Civil Rights Movement. New York: Empirical Evidence and Reply to Batavia.” Three Rivers Press, 1993. Psychology, Public Policy, and Law 6.2 (2000): 526– ——. “Disability Policy and the Media: A Stealth Civil 45. Rights Movement Bypasses the Press and Defies Goldberg, Carey. “For These Trailblazers, Wheelchairs Conventional Wisdom.” Policy Studies Journal Matter. New York Times Online, August 17, 2000. 22.1 (1994): 123–32. Available at http://query.nytimes.com/gst/fullpage. Siebers, Tobin. Morals and Stories. New York: Columbia html.res9EoCE3DA173EF934A2575BCoA9669C8B University Press, 1992. 63&sec=health&spon=&pagewanted=all (accessed ——. “Kant and the Politics of Beauty.” Philosophy and December 22, 2006). Literature 22.1 (1998): 31–50. DISABILITY AND THE THEORY OF COMPLEX EMBODIMENT | 297

——. “My Withered Limb.” Michigan Quarterly Review ——. “What Can Disability Studies Learn from the 37.2 (1998): 196–205. Culture Wars?” Cultural Critique 55 (2003): 182– ——. The Subject and Other Subjects: On Ethical, 216. Aesthetic, and Political Identity. Ann Arbor: Taylor, Charles. Sources of the Self: The Making of University of Michigan Press, 1998. Modern Identity. Cambridge, Mass.: Harvard ——.”The Reign of Ideology by Eugene Goodheart.” University Press, 1987. Modern Philology 96.4 (1999): 560–63. Young, Iris. On Female Body Experience: “Throwing ——. The Mirror of Medusa. Rev. ed. Christchurch, New Like a Girl” and Other Essays. Cambridge, Mass.: Zealand: Cybereditions, 2000. Oxford University Press, 2005. CHAPTER 22

Defining Mental Disability Margaret Price

NAMING AND DEFINITION operates as inclusively as possible, inviting coalition, while also attending to the spe- Who am I talking about? So far I’ve used cific texture of individual experiences. In a variety of terms to denote impairments doing so, I follow the urging of Tanya Titch- of the mind, and I haven’t yet exhausted kosky, who argues that the aim of analyz- the list. Contemporary language available ing language about disability should not be includes psychiatric disability, mental ill- to mandate particular terms but rather “to ness, cognitive disability, intellectual dis- examine what our current articulations of ability, mental health service user (or con- disability are saying in the here and now” sumer), neurodiversity, neuroatypical, psy- (“Disability” 138). The problem of nam- chiatric system survivor, crazy, and mad. ing has always preoccupied DS scholars,1 “No term in the history of madness is neu- but acquires a particular urgency when tral,” Geoffrey Reaume argues, “not mental considered in the context of disabilities of illness, madness, or any other term” (182). the mind, for often the very terms used to Moreover, as Ian Hacking has pointed out, name persons with mental disability have particular names may thrive in a particular explicitly foreclosed our status as persons. “ecological niche”—for instance, the inter- Aristotle’s famous declaration that man is section of the diagnosis “neurasthenia” a rational animal (1253a; 1098a) gave rise with nineteenth-century French stories of to centuries of insistence that to be named the “Wandering Jew” (2, 120) or the diag- mad was to lose one’s personhood. nosis “drapetomania,” applied to African Mad is a term generally used in non-U.S. American slaves who attempted to escape contexts, and has a long history of positive (Jackson 4). Keeping this dynamism in and person-centered discourses. Mind- mind, the following analysis does not aim Freedom International, a coalition of grass- to accept some terms and discard others. roots organizations, traces the beginning Rather, I want to clarify the different areas of the “Mad Movement” to the early 1970s, they map and show that each does par- and reports on “Mad Pride” events that ticular kinds of cultural work in particular continue to take place in countries includ- contexts. Although I use mental disability ing Australia, Ghana, Canada, England, and as my own term of choice, I continue to use the United States. MindFreedom and other others as needed, and my overall argument groups organize activist campaigns, spon- is for deployment of language in a way that sor exhibits and performances, and act DEFINING MENTAL DISABILITY | 299 as forums and support networks for their among people with diverse identification” thousands of members. Mad is less recog- while also indicating that the relationship nizable in the United States, which can be between the three positions is neither to its advantage, since its infrequency helps exclusive nor linear (157). Lewis goes on to detach it from implication in medical and suggest that we might add patient as well, psychiatric industries. In addition, mad making the abbreviation into a quatrad achieves a broad historical sweep. Psychia- (p/c/s/x), to represent the fact that some try, with its interest in brains, chemistry, persons within the psychiatric system are and drugs, arose only in the last couple of forced into this objectified and passive role centuries; however, writings on madness (157). can be found in pre-Socratic discourse, When I first encountered the term sur- and their historical progression through vivor, I felt hesitant. It seemed to have centuries spans medicine, philosophy, and unsettling similarities to “cure”: a survivor, literature, as Allen Thiher shows in Rev- I thought, implicitly had had a traumatic els in Madness: Insanity in Medicine and experience and come out the other side. Literature. This doesn’t describe my experience. I make regular use of the psychiatric system, The center of our discourses on madness and I consider myself the agent and direc- has had many names: thymos, anima, soul, tor of my treatments; for example, I inter- spirit, self, the unconscious, the subject, the viewed and discarded psychiatrists until I person. Whatever be the accent given by the found one who agrees with my approach central concept, access to the entity afflicted to my bodymind.2 However, there is no with madness is obtained through a language avoiding the fact that he, not I, wields the game in which these concepts or names play a role, organizing our experience of the world power of the prescription pad. In addition, even as the world vouchsafes criteria for cor- I possess the economic and cultural privi- rect use of these notions. lege that permits me to try out and reject (3) various caregivers, a privilege not open to many in the c/s/x group. And finally, like Thiher does not discuss at length his choice any “patient,” I am subject to my caregiv- of mad, but it is evident from the far- ers’ power over information. For example, reaching scope of his study that this term when my psychiatrist and my therapist achieves a flexibility that mental illness and conferred and arrived at one of my diag- cognitive disability do not: it unites notions noses, they chose not to share that diagno- of that “central concept” through time and sis with me until some months later (their across cultures. As with queer, the broad stared reason being that I had been in the scope of mad carries the drawback of gen- midst of a crisis and was not ready to proc- erality but also the power of mass. ess the information). As it happens, I think Many persons in the mad movement they made an appropriate decision, but identify as psychiatric system survivors. the fact remains that regardless of what I According to MindFreedom, psychiat- thought, the outcome would have been the ric system survivors are “individuals who same; I had no say in the matter. have personally experienced human rights In her ethnographic study Talking Back violations in the mental health system.” to Psychiatry, Linda J. Morrison interviewed A more inclusive term is consumer/survi- activists in the c/s/x movement, which she vor/ex-patient (c/s/x). Drawing upon the defines as “people who have been diag- work of Linda J. Morrison, Bradley Lewis nosed as mentally ill and are engaged in dif- argues that this term “allows a coalition ferent forms of ‘talking back’ to psychiatry 300 | MARGARET PRICE

and the mental health system,” as well as rial consequence of this view is that men- allies including “dissident mental health tal health insurance operates on a “cure” professionals, lawyers, advocates, and basis, demanding “progress” reports from family members” (ix). Morrison found that therapists and social workers, and cutting they made use of the term survivor in vari- off coverage when the patient is deemed ous ways, and that a “heroic survivor narra- to have achieved a sufficiently “well” tive” is deeply influential in the movement, state. For instance, although the Ameri- both through published accounts (such as can Psychiatric Association recommends Kate Millett’s The Loony-Bin Trip) and in that persons with my diagnoses remain individuals’ processes of identity forma- in long-term talk therapy, my insurance tion vis-à-vis psychiatric discourse (101). company (CIGNA) determined in 2006 that Participants’ survivor narratives “exist in I was “well enough” and terminated my a range of intensity, from high drama to mental-health coverage, except for brief muted skeptical observations” (129), but pharmaceutical consultations with my the narrative as a whole, Morrison argues, psychiatrist. During a months-long battle plays a crucial role in the movement, help- with the “physician reviewer” employed by ing to build solidarity and empower resist- CIGNA, my therapist’s and psychiatrist’s ant voices. Significantly, this narrative, and requests for continued coverage (which, the term survivor, have also been singled according to ClGNA’s rules, I was not per- out for denigration by critics (Morrison mitted to make directly) were repeatedly 152–53). turned down. Ultimately, my therapist My own thinking on psychiatric system was informed that the decision would survivor was deepened when I discussed stand unless I “actually attempt[ed] sui- it with my colleague Petra Kuppers. One cide,” at which point I would be deemed evening at a conference, sitting on the bed unwell enough to resume therapy. This in her hotel room and chewing over my “well/unwell” paradigm reflects the larger thoughts, I said that I didn’t feel I “sur- tendency of American medical systems to vived” the psychiatric system so much as intervene in “problems” rather than prac- worked within it, negotiating and resisting tice a more holistic form of care. as I went. “But,” Petra said simply, “that However, an advantage of mental illness is survival.” Her insight has shifted my is that it can be allied with the substantial— view of the term: rather than thinking of and sometimes contentious—conversation a survivor as one who has undergone and within DS on the intersections between ill- emerged from some traumatic experience ness and disability. In a 2001 Hypatia arti- (such as incarceration in a mental institu- cle, “Unhealthy Disabled: Treating Chronic tion), it can also denote one who is actively Illnesses as Disabilities,” Susan Wendell and resistantly involved with the psychiat- points out that activists in the disability ric system on an ongoing basis. rights movement in the United States have Mental illness introduces a discourse often sought to “distinguish themselves of wellness/unwellness into the notion of from those who are ill” (18). This has led madness; its complement is mental health, to a schism between those she calls the the term of choice for the medical commu- “healthy disabled,” whose impairments nity as well as insurance companies and “are relatively stable and predictable for social support services. This well/unwell the foreseeable future” (19), and those paradigm has many problems, particularly who are chronically ill. Because those with its implication that a mad person needs chronic illnesses are often exhausted, in to be “cured” by some means. One mate- pain, or experiencing mental confusion, DEFINING MENTAL DISABILITY | 301 their very identities as activists come into because in some cases—for a person with question: depression, for example—this would involve not just an attitude toward his ill- Fluctuating abilities and limitations can ness but a direct erasure of his illness (94). make people with chronic illnesses seem Like Wendell, Nicki calls for redesign of our like unreliable activists, given the ways that social and work environments, emphasiz- political activity in both disability and femi- ing the importance of interdependence as nist movements are structured. . . . Commit- ment to a cause is usually equated to energy a means to achieve this goal. Anne Wilson expended, even to pushing one’s body and and Peter Beresford have argued that the mind excessively, if not cruelly. project will be difficult, and will involve (25) not just surface-level changes, but a full reworking of the social model of disability Wendell acknowledges that “healthy disa- (145). bled” and “unhealthy disabled” are blurry One part of this reworking will be the categories: a person with cerebral palsy, for acknowledgment that, although discursive example, may also experience exhaustion, alliances can be drawn between physical pain, or mental confusion; indeed, a person and mental illness, important differences with a physical impairment may also have exist as well. For example, while members a chronic illness. Usually, however, “disa- of the disability rights movement, includ- bled” implicitly means “healthy disabled,” ing myself, proudly call ourselves “disa- and full inclusion of the unhealthy disabled bled,” many members of the c/s/x move- must involve “changes in the structure, ment view the term disabled with more culture, and traditions of political activ- suspicion. In the view of the c/s/x move- ism,” with new attitudes toward “energy ment, when psychiatry assigns a diagnosis and commitment, pace and cooperation” of “mental illness” to a person, that person (Wendell 26). As yet, such changes are is marked as permanently damaged, and largely unrealized. Consider the last con- as one whose rights may be taken away— ference you attended: did events run from unless, of course, she complies with psy- 9:00 a.m. until late at night? Consider the chiatry’s requirements for “care,” which “tenure clock,” or activist efforts that call may include medication, incarceration, or for attendance in public places for hours electroshock. Morrison makes this point at a time: do such occasions assume each by contrasting psychiatric diagnosis with participant will have the ability to meet the diagnosis of a cold: people, interact, and function for hours on end? Consider the persons who did not In modern psychiatry, a person who has attend. Do you know who they are? been diagnosed with a serious and persist- Andrea Nicki’s theory of psychiatric ent mental illness (SPMI) is rarely consid- disability picks up Wendell’s point about ered “cured” or completely free of illness. energy and health, but reshapes it to cri- The implied expectation is that mental ill- tique the implicitly rational mind of the nesses are chronic. They may remit but they “good” disabled person—or, as Quintil- are likely to recur. Compare, for example the yearly cold symptoms with congestion ian might have put it, the “good disabled and cough that many people experience, person speaking well” (see Brueggemann, followed by recovery to a “normal” state. In Lend). Not only must this person be of psychiatric illness, recovery from the symp- rational mind, Nicki argues; he must also toms would not be considered the end of adhere to a “cultural demand of cheer- the problem. The likelihood of a return to a fulness,” which is particularly insidious symptomatic state, with resultant need for 302 | MARGARET PRICE

medical intervention, would be assumed “mind” philosophically and socially as well . . . [A] former patient is always expected to as biologically. become a future patient and the sick role is Postpsychiatrist medical philosophers ongoing. In fact, if a patient believes other- Patrick Bracken and Philip Thomas argue wise, this can be considered a symptom of that, once Descartes had established the exacerbated illness. now-conventional body/mind split (as well (5) as valorization of the individual subject), This paradox, in which belief of one’s own subsequent theories of mind continued to wellness may in itself be considered evi- perpetuate this belief, extending into nine- dence of unwellness, lies at the heart of teenth- and twentieth-century psychiatry, psychiatric diagnosis. To accept the psy- which expanded its effects still further. chiatric profession’s definition of oneself Bracken and Thomas identify three out- as sick is considered a key move toward get- comes of this philosophy: the beliefs that ting well; the technical term for acceptance “madness is internal”; that madness can of a psychiatric label is “insight.” Although be explained neurologically and treated members of the c/s/x movement occupy a (solely) with pharmaceuticals; and that range of perspectives, generally the move- psychiatrists have the “right and respon- ment resists psychiatry’s efforts to place its sibility” to coerce their patients (“Postpsy- “patients” into the “sick role.” Like Deaf chiatry” 725). Postpsychiatry offers an alter- activists, c/s/x activists have much in com- native path, Bracken and Thomas suggest, mon with disability activists, but strong not by replacing old techniques with new differences as well—one of which is the ones, but rather by “open[ing] up spaces issue of whether or not to self-identify as in which other perspectives can assume a disabled. validity previously denied them”—espe- One thing c/s/x and disability activ- cially the perspectives of those labeled ists agree upon, however, is the deeply “mentally ill” (“Postpsychiatry” 727). In problematic nature of modern psychi- addition to centering the agency of mad atric discourse. Working in concert with people, Bracken and Thomas argue for the gigantic forces of for-profit insur- replacing the conventional separation ance companies and the pharmaceutical of body and mind with an emphasis on industry, mainstream psychiatry places social context, ethical as well as techni- ever-increasing emphasis on a biological cal (chemical) modes of care, and an end and positivist definition of mental illness, to the claim that coercive “treatments” all while claiming to remain “theory-neu- are applied for “objective” or “scientific” tral” (Lewis 97). However, dissident voices reasons. In a later, briefer article, Bracken can be heard within psychiatry as well. As and Thomas clarify the relationship of Car- Morrison shows, some medical profes- tesian dualism to postpsychiatry: human sionals are members of the c/s/x move- mental life, they argue, is not “some sort of ment. Groups that bring together critical enclosed world residing inside the skull,” psychologists and psychiatrists and the c/ but is constructed “by our very presence s/x movement have proliferated since the and through our physical bodies” (“Time 1990s, and include the Critical Psychiatry to Move” 1434). Network; Psychology, Politics and Resist- Bradley Lewis offers an in-depth account ance; the Mental Health Alliance; and of postpsychiatry in Moving Beyond Pro- Radical Psychology Network. This resist- zac, DSM, & the New Psychiatry: The Birth ant strain of psychiatry is sometimes called of Postpsychiatry. Describing himself as a postpsychiatry, a theory/practice that views “hybrid academic,” Lewis holds both an DEFINING MENTAL DISABILITY | 303

M.D. in psychiatry and a Ph.D. in inter- A potential problem with the rheto- disciplinary humanities (ix). From this ric of neurodiversity is that it can read as unusual position, Lewis makes a call for overly chipper (like a “Celebrate Diversity!” postpsychiatry that is both pragmatic and bumper sticker); its optimism can flatten theoretical: cyborg theory, neurophysiol- individual difference. However, it also car- ogy, and the governing structure of the APA ries a complement, neurotypical (or NT), all occupy significant parts of his attention. which destabilizes assumptions about Moving Beyond Prozac describes “a theo- “normal” minds and can be used to trans- rized postpsychiatry,” which would “take gressive effect (Brownlow). For example, seriously the role of language and power” Aspies For Freedom has used NT to parody as well as “work without the pseudo-foun- the rhetoric of “cure” propagated by the dations and pseudo-certainties of modern- organization Fighting Autism. Until very ist science and reason” (17). Lewis does not recently, Fighting Autism published and wish to do away with psychiatrists and clin- maintained a graphic called the “autism ics, but rather to reform them. The reformed clock” which purported to record the “inci- “clinical encounter,” for example, would dence” of autism for persons aged three to include “not only the modernist values of twenty-two and the supposed economic empirical diagnosis and rational thera- “cost” of this incidence.3 In response, peutics but also additional clinical values Aspies For Freedom published a parody of like ethics, aesthetics, humor, empathy, the autism clock, which pathologizes neu- kindness and justice” (17; see also Lewis, rotypicals and suggests that for the onrush “Narrative Psychiatry”). While pragmatic, of diagnoses (“I every minute”), there will Lewis’s argument is not individualistic, be “2 to take them.” but aimed at discourses and structures of While Fighting Autism viewed autism as power. Individual psychiatrists and prac- a disease that must be battled and cured, tices do need to change, Lewis suggests, Aspies For Freedom takes the stance that but the core project is revision of the psy- autism is a form of neurodiversity, that is, chiatric profession to become more demo- of difference, not something that should cratic, less positivist, less capitalistic, and be eradicated. Although public opinion of to include the voices and concerns of all its autism tends to be dominated by the dis- stakeholders, including the c/s/x group. ease/cure model, resistant voices of neu- Neuroatypical and neurodiverse mark rodiversity have proliferated, especially a broader territory than psychiatric dis- through web-based communities, blogs, course: these terms include all whose and webtexts (see, for example, Yergeau, brains position them as being somehow “Aut(hored)ism”). different from the neurotypical run of the Some DS scholars, including Cynthia mill. Neuroatypical is most often used to Lewiecki-Wilson, have called for a coali- indicate persons on the autism spectrum, tion of those with psychiatric and cogni- including those with Asperger’s syndrome tive disabilities; she suggests that the term (AS), but has also been used to refer to per- mental disability can be used to denote the sons with bipolar disorder (Antonetta) and rhetorical position of both groups: traumatic brain injuries (Vidali). In her “bipolar book” (13) A Mind Apart, Susanne For the purposes of this paper, I group mental Antonetta argues that neurodiversity acts a illness and severe mental retardation under positive force in human evolution, enabling the category mental disabilities. Despite the alternative and creative ways of thinking, varieties of and differences among men- knowing, and apprehending the world. tal impairments, this collective category 304 | MARGARET PRICE

focuses attention on the problem of gaining in narrow ways that comply with a medi- rhetoricity to the mentally disabled: that is, cal model of disability, it also has consid- rhetoric’s received tradition of emphasis on erable traction within disability studies. the individual rhetor who produces speech/ In her introduction to a 2002 special issue writing, which in turn confirms the existence of Disability Studies Quarterly, Deborah of a fixed, core self, imagined to be located in Marks argues that a psychosocial perspec- the mind. (157) tive can “challenge the disciplinary boundary between psychological and social paradigms.” Taking up her point, Patrick In other words, according to Lewiecki- Durgin has amplified the term’s radical Wilson, the notion that one’s disability is possibilities: located in one’s mind unites this category, not because such a thing is inherently true, A “psycho-social formulation” is, in short, the but because persons labeled with these none-of-the-above option in the diagnostic kinds of disabilities share common experi- pantheon. It is the excluded middle or limi- ences of disempowerment as rhetors. My nal space where impairment meets world to own struggles for adequate terminology become disability. To use clinical language, it does not “present” clinically because it follow Lewiecki-Wilson’s call for coalition resists being given diagnostic surmise; and politics. Although it is important to note the yet it won’t “pass” as normal. differences between specific experiences, (138) in general I believe we need both local specificity and broad coalitions for maxi- Durgin goes on to argue that, although mum advantage. Persons with impaired psychosocial may seem a kind of “golden bodyminds have been segregated from one mean” between medical and social para- another enough. digms, it too must undergo critical exami- For a while, I used the term psychosocial nation; not least, I would add, because this disability. I like its etymology, the fact that it term can and has been used in medicalized bumps psych (soul) against social context; and positivist projects. For example, in the I like its ability to reach toward both mind third and fourth editions of the Diagnostic and world. Its emphasis on social context and Statistical Manual of Mental Disor- calls attention to the fact that psychosocial ders, the authors have made a great show disabilities can be vividly, and sometimes of considering social factors in their new unpredictably, apparent in social con- classification of “mental disorders,” and texts. Although it’s common to describe also of having involved a broad base of psychosocial disabilities as “invisible,” or patients and clinicians in developing the “hidden,” this is a misnomer. In fact, such manual. Yet, as Lewis points out, that show disabilities may become vividly manifest in is largely illusory; the central developers of forms ranging from “odd” remarks to lack the landmark DSM-III (and inventors of of eye contact to repetitious stimming.4 Like its categories) numbered just five persons, queerness, psychosocial disability is not so and the overarching rationale for the man- much invisible as it is apparitional, and ual is increasingly positivist and biological. its “disclosure” has everything to do with Despite this history, I value the potential the environment in which it dis/appears.5 of psychosocial for reappropriation. In a Psychosocial disability announces that it sense, Durgin is saying to the authors of is deeply intertwined with social context, the DSM, “You want social? We’ll give you rather than buried in an individual’s brain. social.” Although psychosocial has been used My appreciation of psychosocial has DEFINING MENTAL DISABILITY | 305 been affirmed by philosopher Cal Mont- person who spent a lot of time in hospitals, gomery, who pointed out its usefulness in who was prescribed medications and prod- terms of sensory as well as cognitive disa- ded by doctors, to a person who inhabits a bilities, saying, “I do think we need a way of richly diverse, contentious, and affection- talking inclusively about people for whom ate disability community. Let me tell a story access to human interaction is problem- to explain this migration: On a December atic.” However, having spent the last couple day in 2008, I arrived in a fluorescent-lit of years trying this term out—on the page, hotel room in San Francisco to listen to a in conference presentations, at dinner with panel of scholars talk about disability. I had friends—I’ve become increasingly uncom- recently made a long airplane journey and fortable with it, because in most cases if felt off-balance, frightened, and confused. seems to provoke puzzlement rather than I sat beside disability activist and writer connection. Explaining my experiences Neil Marcus, and when he saw my face, he to Cal, I wrote: “I’ve been using the term opened his arms and offered me a long, ‘psychosocial disability’ in various settings hard-muscled hug. That hug, with arms set for over a year—at conferences, in casual at awkward angles so we could fit within conversations, in my writing, etc.—and his wheelchair, with chin digging info scalp it seems that, unless I’m writing an article and warm skin meeting skin—that, to me, where I can fully explain what I’m getting is disability community. Neil may or may at, people just kind of go blank when I use not know what it is like to wake with night the term. I have started to feel like, what’s terrors at age forty, I may or may not know the point of using a term that no one gets what it feels like to struggle to form words, but me?” Put simply, in most social con- but the reaching across those spaces is what texts, psychosocial failed to mean. defines disability for me. We write, we ques- So I have taken another tack. Follow- tion and disagree, we are disabled. Simi Lin- ing Lewiecki-Wilson, these days I’m using ton has said of the term disability that “We mental disability. As Lewiecki-Wilson have decided to reassign meaning rather argues, this term can include not only than choose a new name” (31). madness, but also cognitive and intellec- And so, in naming myself a crazy girl, tual dis/abilities of various kinds. I would neuroatypical, mentally disabled, psy- add that it might also include “physical” ill- chosocially disabled—in acknowledging nesses accompanied by mental effects (for that I appear (as a colleague once told me) example, the “brain fog” that attends many “healthy as a horse” yet walk with a mind autoimmune diseases, chronic pain, and that whispers in many voices—I am try- chronic fatigue). And, as Cal suggests, we ing to reassign meaning. In the best of all should keep in mind its potential congru- possible worlds I would refuse to discard ence with sensory and other kinds of dis- terms, refuse to say which is best. I believe abilities—that is, its commonalities with in learning the terms, listening to others’ “people for whom access to human inter- voices, and naming myself pragmatically action is problematic.” according to what the context requires. I Finally, while I respect the concerns of believe that this is language. those who reject the label disabled, I have chosen to use a term that includes disability explicitly. In my own experience, NOTES claiming disability has been a journey of 1. See Christensen; Dajani; Linton, chap. 2; Titch- community, power, and love. Over the last kosky, “Disability”; Trent, introduction; and twenty years, I have migrated from being a Zola. 306 | MARGARET PRICE

2. I use the term bodymind to emphasize that Brownlow, Charlotte. “Re-presenting Autism: The although “body” and “mind” usually occupy Construction of ‘NT Syndrome.’” Journal of separate conceptual and linguistic territories, Medical Humanities 31 (2010): 243–55. they are deeply intertwined. This theory is drawn Brueggemann, Brenda Jo. Lend Me Your Ear: Rhetorical in part from Babette Rothschild’s The Body Constructions of Deafness. Washington, DC: Remembers. Although Rothschild’s usage refers to Gallaudet P, 1999. persons who have experienced trauma, I believe Christensen, Carol. “Disabled, Handicapped or it can be usefully applied to persons with mental Disordered: What’s in a Name?” Disability and disabilities of all kinds, for—as I argue through- the Dilemmas of Education and Justice. Ed. Carol out this book—our problems are in no sense “all Christensen and Fazal Rizvi. Buckingham: Open in our minds.” If it weren’t so unwieldy, I would be UP. 63–77. tempted to use something like psychobiosocial- Dajani, Karen Finlon. “What’s in a Name? Terms Used politicalbodymind. to Refer to People with Disabilities.” Disability 3. Just as this book was going to press, the autism Studies Quarterly 21.3 (2001). clock was removed from the website. When I Durgin, Patrick F. “Psychosocial Disability and Post- wrote to inquire, I received a notice that it has Ableist Poetics: The ‘Case’ of Hannah Weiner’s “been brought to our attention that the autism Clairvoyant Journals.” Contemporary Women’s clock was offensive to some members of the Writing 2:2 (2008): 131–54. autism community.” In addition, the domain Hacking, Ian. Mad Travelers: Reflections on the Reality name of the website was changed from fightin- of Transient Mental Illness. Cambridge, MA: gautism.org to thoughtfulhouse.org. While lim- Harvard UP, 1998. ited, these measures indicate that the hard work Jackson, Vanessa. “In Our Own Voice: African-American of neurodiverse activists is being noticed. Stories of Oppression, Survival and Recovery in 4. Stimming, short for “self-stimulating,” is a self- Mental Health Systems.” MFI Portal. April 4, 2009. soothing repetitive activity that may be practiced http://www.mindfreedom.org/kb/mental-health- by persons with a variety of disabilities, including abuse/Racism/InOurOwn-Voice/vie. autism, obsessive-compulsive disorder, or anxi- Lewiecki-Wilson, Cynthia. “Rethinking Rhetoric ety. through Mental Disabilities.” Rhetoric Review 22.2 5. For more on the apparitional nature of men- (2003): 156–67. tal disabilities, see Montgomery, “Critic of the Lewis, Bradley. Moving Beyond Prozac, DSM, & the Dawn” and “A Hard Look at Invisible Disability,” New Psychiatry. Ann Arbor: U of Michigan P, and Samuels. For more on the apparitional 2006. nature of disability and illness generally, see Lewis, Bradley. “Narrative Psychiatry.” Comprehensive Myers, “Coming Out” and Siebers, “Disability as Textbook of Psychiatry, 9th ed. Ed. Benjamin J. Masquerade.” Saddock and Virginia A. Sadock. Philadelphia: Lippincott, 2009. 2934–39. Linton, S. Claiming Disability: Knowledge and Identity. WORKS CITED New York: New York UP, 1998. Marks, Deborah. “Introduction: Counselling, Therapy American Psychiatric Association. Diagnostic and and Emancipatory Praxis.” Disability Studies Statistical Manual of Mental Disorders. Text revi- Quarterly 22.3 (2002). sion. 4th ed. Arlington, VA: APA, 2000. Millet, Kate. The Loony-Bin Trip. New York: Simon and Antonetta, Susanne. A Mind Apart: Travels in a Schuster, 1990. Neurodiverse World. New York: Penguin, 2005. Montgomery, Cal. “Critic of the Dawn.” Ragged Edge Aristotle. The Complete Works of Aristotle. Jonathan Online 22.3 (May 2001). http://www.ragged-edge- Barnes, ed. and trans. Bollingen Series LXXI: 1–2. mag.com/0501/0501cov.htm. Princeton, NJ: Princeton UP, 1984. Montgomery, Cal. “A Hard Look at Invisible Disability.” Aristotle. The Nicomachean Ethics. Trans. J. A. K. Ragged Edge Online 22.2 (March 2001). http:// Thomson. Rev. Hugh Tredennick. Intro. Jonathan www.ragged-edge-mag.com/0301/0301ft1. Barnes. New York: Penguin, 2004. htm. Bracken, Patrick, and Philip Thomas. “Postpsychiatry: Morrison, Linda J. Talking Back to Psychiatry: A New Direction for Mental Health.” British Medical The Psychiatric Consumer/Survivor/Ex-Patient Journal 322 (2001): 724–27. Movement. New York: Routledge, 2005. Bracken, Patrick, and Philip Thomas. “Time to Move Myers, Kimberly R. “Coming Out: Considering the Beyond the Mind-Body Split.” British Medical Closet of Illness.” Journal of Medical Humanities Journal 325 (2002): 1433–34. 25.4 (2004): 255–70. DEFINING MENTAL DISABILITY | 307

Nicki, Andrea. “The Abused Mind: Feminist Theory, Name? ‘People-First’ Language in Canadian Psychiatric Disability, and Trauma.” Hypatia 16.4 Society.” Canadian Review of Sociology and (2001): 80–104. Anthropology 38.2 (2001): 125–40. Reaume, Geoffrey. “Mad People’s History.” Radical Trent, James W. Jr. Inventing the Feeble Mind: A His- History Review 94 (2006): 170–82. tory of Mental Retardation in the United States. Rothschild, Babette. The Body Remembers: The Berkeley: U of California P, 1994. Psychophysiology of Trauma and Trauma Vidali, Amy. “Rhetorical Hiccups: Disability Disclosure Treatment. New York: Norton, 2000. in Letters of Recommendation.” Rhetoric Review Samuels, Ellen. “My Body, My Closet: Invisible Dis- 28.2 (2009): 185–204. ability and the Limits of Coming-out Discourse.” Wendell, Susan. “Unhealthy Disabled: Treating GLQ 9.1 (2003): 233–55. Chronic Illnesses as Disabilities.” Hypatia 16.4 Siebers, Tobin. “Disability as Masquerade.” Literature (2001): 17–33. and Medicine 23.1 (2004): 1–22. Zola, Irving Kenneth. “Self, Identity and the Naming Thiher, Allen. Revels in Madness: Insanity in Medicine Question: Reflections on the Language of and Literature. Ann Arbor: U of Michigan P, 2004. Disability.” Social Science and Medicine 36.2 (1993): Titchkosky, Tanya. “Disability: A Rose by Any Other 167–73. CHAPTER 23

Disability and Blackness Josh Lukin

In 2005 the Modern Language Association’s the MLA have been working in the field Committee on Disability Issues in the Pro- since the early 1990s. Rosemarie Garland- fesssion wrote, “The future of Disability Thomson’s 1996 Extraordinary Bodies, a Studies is Black indeed.” Their prophecy pioneering study of disability in literature, expressed a determination to begin a long- addressed depiction of disability in the overdue discussion of black issues and art- work of black writers such as Audre Lorde, ists in the context of Disability Studies, and Ann Petry, and Toni Morrison. Although vice-versa. Committee member Robert African Americans constitute twelve per- McRuer, of George Washington Univer- cent of the population in general, they sity, noted that, with few exceptions, Dis- make up eighteen percent of Americans ability Studies silently assumes whiteness with disabilities; so one might reasonably in its practitioners and subjects. McRuer ask why the appearance of Black Disability recalled how, twenty-four years earlier, the Studies has taken so long considering that a endless repetition of the phrase “blacks and greater percentage of black people appear women,” as though the two were mutually to be disabled? And what role can literary exclusive categories, had provoked the scholars have in developing black disabil- creation of the volume, All the Women Are ity studies? The answers to those two ques- White, All the Blacks Are Men, but Some of tions are connected, and relate to the ten- Us Are Brave: Black Women’s Studies. That sions between black activism and disability emphasis on where identities intersect, and advocacy going back to the earlier days of the need to create more complex concepts the disability movement. of identity that could accommodate that intersectionality, transformed feminism: I. ACTIVISM McRuer and his allies hoped for a similarly deep transformation in Disability Studies. Black disabled activist Johnnie Lacy, in a To understand this state of affairs, we 1998 interview for UC Berkeley’s oral his- need to look back. The disability rights tory archive, recounted several decades of movement gained widespread recognition experience trying to negotiate her minor- in the 1970s; the academic field of Disabil- ity identities. As early as 1960, Lacy was ity Studies is associated with the founding exquisitely conscious of the power that of the Society for Disability Studies [SDS] even those who might oppose race and in the 1980s; and humanities scholars at sex discrimination felt they could wield in DISABILITY AND BLACKNESS | 309 oppressing people with disabilities. She identify with disability as a disability but recalls the San Francisco State University just as one other kind of inequity that black professor who successfully organized a people had to deal with.” movement to stop her from studying in his With the late Seventies came the “504 department because he saw no place in his Demonstration,” the Stonewall Inn of the profession for wheelchair-users: disability rights movement. The Rehabili- tation Act of 1973 had contained a pro- . . . my final and departing shot to him was vision making it illegal for any federally that if I were just a woman, he could not do funded institution or activity to discrimi- this to me; if I were only a person of color, nate against the disabled; but this passage, he would not be able to do this to me; and like the lines in the 1964 Civil Rights Act . . . the only reason that—the only way that prohibiting sex discrimination, was not you [are] able to take this unfair advantage is taken seriously by the federal government. because I have a disability. Like the women’s movement of a decade Although the analogy between racist earlier, and the desegregation movement and ableist discrimination is evident in before that, the disability movement took Lacy’s protest, she did not see that analogy to direct action to compel the state to keep being widely understood. At the time, and its promise. For twenty-five days, disabil- well into the early Seventies, her interac- ity activists occupied the San Francisco tion with her fellow black activists led her offices of the Department of Health, Edu- to believe that the black community shared cation, and Welfare, ultimately prompting the larger society’s prejudices against the HEW to grant their demands that the anti- disabled: discrimination law be enforced with no exceptions. I believe that African Americans see dis- Johnnie Lacy was among the many disability in the same way that everybody else abled citizens who gained a new under- sees it—[perceiving people with disabilities standing of the position of the disabled in as] worthless, mindless—without realizing society, realizing that a newly self-aware that this is the same attitude held by oth- minority was no longer going to ask meekly ers toward African Americans. This belief for the favor of equal opportunity: in effect cancels out the black identity they share with a disabled black person, both I saw disabled people demanding things . . . socially and culturally, because the disability that should have been theirs . . . and I imme- experience is not viewed in the same context diately made the connection . . . I had worked as if one were only black, and not disabled. in the anti-poverty program before, and poor Because of this myopic view, I as a black [Black and Latino] people were given the same disabled person could not share in the intel- kinds of lack of respect and the same kinds of lectual dialogue viewed as exclusive to black treatment. folk. In other words, I could be one or the other but not both. At this point, Lacy did not feel she had to deny or disavow her other identities to Although the black community acknowl- accept her newly affirmed status as a mem- edged the existence of disability, Lacy felt ber of the disability community: the edu- that it did not recognize the possibility of cation she received in and around the 504 people with disabilities having a group Demonstrations gave her, identity. “I also discovered . . . that many African-Americans consider being black as a sense of pride as a disabled person, not having a disability, and so they didn’t really as a black person and not as a woman. But 310 | JOSH LUKIN

it . . . brought the three together for the first by blind black activist Donald Galloway time to me. And sort of made me feel like a in the Berkeley oral history archive. Work- whole person . . . I could identify myself with ing at the Center for Independent Living a whole group of people that I never identi- in 1973, he was punished for advocating a fied and that I didn’t really know existed. It larger minority presence: was like sharing my experiences as a disabled person for the first time, sharing my I was the only black, and I started bringing insights . . . It was like being with a group of black people into the center as drivers and people who saw themselves as people, not attendants, and bringing in professional as objects of pity . . . people, like I say, were types . . . I went to the board of directors at being empowered and they were not blam- the center, and said, we’re going to start a ing themselves. black caucus to make sure we get our voice heard. That went over like a lead balloon . . . As an activist in the new movement, work- because the attitude was that we were all ing at Berkeley’s Center for Independent one, and there’s no need for it . . . I got kicked Living and similar institutions, Lacy found off the board because of my position. herself on the other side of the divide: But while the disability movement took instead of feeling frustrated with the black some time to perceive the need for community’s limited understanding of attention to race, Galloway recalls Bay disability culture, she became a kind of Area black leaders who were responsive ethnographic guide to the largely white to the needs of the disabled in the Seven- disability community, trying to educate ties. He was among those who brought the its members who had no clue as to how to Black Panther Party into an alliance with approach the black community. Although the 504 demonstrators and persuaded she quickly taught her white colleagues to the black elected officials of Berkeley to avoid openly condescending behavior, she support the Center for Independent Liv- had more difficulty with their ignorance of ing (see Schweik for a detailed account cultural difference: of the other individuals involved in that It’s just that they came from backgrounds alliance). where . . . they just didn’t have that much Yet, despite his personal successes exposure to people of color, and they truly did in connecting with black organizations not know how to outreach with these folks. on specific issues, Galloway ultimately They just felt that if you’re disabled, that’s shared Lacy’s feeling that there was a gap the only thing, you know, that’s important. in mutual understanding between the movements: She struggled to explain how many minority cultures had different attitudes toward To be realistic about it, the black commu- community and family than did the inde- nity, even now, the organized black commu- pendence-minded white professional class, nity did not really identify with the struggle and how those differences were relevant to of people with disabilities in the same way. the Independent Living Movement. Ulti- I think that we, as disabled people, identify with the black movement. But the black mately the movement’s minority outreach movement . . . did not want to include people resources improved with the recruitment with disabilities in the movement . . . In fact, of more activists of color who had received Senator Humphrey, during the 1973 debate and given training in the “504 group.” . . . when the Civil Rights Act of 1964 came up The obstacles to recognition and under- to be voted on, he wanted to include people standing between the two movements, with disabilities, and the black organized black and disabled, are discussed further community said, “No . . .” DISABILITY AND BLACKNESS | 311

Only in the Nineties, when a broad coali- reduced to a metaphor still occurs in situ- tion was required to save the Civil Rights ations where people with disabilities seek Act, did Galloway see a mutually respect- representation alongside racial and ethnic ful alliance forming. His description of it is minorities. telling: The manager whose analogy elicited Lacy’s objection was using rhetoric We came in and basically helped to bail— familiar to students of disability. Charac- not to bail—to help them, to help us to—it’s ters with disabilities in novels are always hard to call them and us, because I’m a part of both groups, so I’m bouncing back and symbols of something or other. Very rarely forth, so you understand when I said them do we see what a person with a disability and us. We had to go in and help support interacting with the world experiences—a the reauthorization of it. It was successful. descriptive goal that is taken for granted in And now they are beginning to understand stories about characters from other histori- that we needed to support each other . . . It’s cally marginalized groups. Readers now are that kind of awareness that’s beginning to sensitive to racial and gender metaphors. happen between the different groups. The But, as critic Michael Bérubé has observed, women’s movement went through the same it still takes a rare sensibility to notice that thing. the lawyer in Native Son presents disability as a moral failing when he shouts, “Your II. SCHOLARSHIP philanthropy was as tragically blind as your sightless eyes!” (569). The issues behind Galloway’s struggle over Hence, in its rhetorical use of disability, which group to call “them” and “us” are the manager’s claim that he feels just like a illuminated by a recollection Johnnie Lacy disabled person because he is black comes has of a Community Action agency meet- as no surprise. But in historical terms, it is ing in the Sixties: a novel connection—traditionally, African Americans have been extremely averse to I can remember one manager standing up and declaring very loudly that he didn’t see race/disability analogies; when scholars a difference between disabled people and seek to include disability alongside race black people, because he was black, and he and ethnicity in a multicultural curricu- felt just as disabled as a disabled person. And lum, objections still arise from representa- I think he got a big support for that state- tives of racial minorities who take offense ment. And I think it clearly was a dividing at the suggestion that they could have any- point, between the way blacks saw disability thing in common with the disabled. Jen- and the way that black disabled people saw nifer James, a literary scholar at George disability. There was a difference. Washington University, has researched the That “difference” is central to the conflict historical reasons for this aversion. between the two movements—whenever Simply put, from the beginnings of the one group said “We are the same,” the United States, the claim that “Blackness is other group said, with some insight, “No. like disability” was not used as an expres- You are exploiting my group’s experience sion of how black Americans suffered but just so that you can have a metaphor for as a tool of their oppression. During the your own.” And individuals who occu- American Revolution, James explains, “the pied both groups at once were caught in Continental Congress decided not to enlist the crossfire. The tension created by one ‘Negroes, Boys unable to bear Arms nor group feeling that its experience was being Old men unfit to endure the Fatigues of the Campaign,’ . . . New Hampshire refused 312 | JOSH LUKIN

to accept ‘lunatics, idiots and Negros,’ silences and distortions on the subject of implying blackness was a similar mental disabled black veterans. It was in this con- deficiency.” The very fact of blackness was text, James says, that John Oliver Killens regarded as a deformity or disability, even censured his fellow black novelist Ralph by white Americans sympathetic to the Ellison for depicting psychologically disa- cause of civic equality. In the 1860s, “Aboli- bled black veterans. tionist Thomas Wentworth Higginson, who James finds tools for understanding this commanded . . . the first African American problem in recent disability scholarship, regiment officially raised for the Civil War, especially that of Henri-Jacques Stiker. Peo- issued this progress report on his black ple disabled by wartime injury or by work- subordinates: they ‘were growing more like related accidents, Stiker explains, have for white men—less grotesque.’” These asso- the past century or more been the object of ciations naturally influenced black writers’ attempts to reintegrate them into society. priorities: James argues that in Such efforts assume that “integration” is desirable and “society” is something eve- post-Civil War African American literature ryone wants to be part of. To James, John particularly, it was imperative that the black Oliver Killens’ complaint is part of a “black body and the black mind be portrayed as politics of rehabilitation” that requires uninjured . . . in order to disprove one of the black bodies to prove their “sameness” main anti-black arguments that surfaced after emancipation—that slavery had made before Black people can be fully integrated blacks ‘unfit’ for citizenship. into the national community. For people with disabilities, “readjustment must be to The same rhetorical issues were at work society as society is presently constituted.” in the integration struggles that followed Society promises the benefits of sameness, World War II: as postwar civil rights agita- luring the “other” to accept rehabilitation. tions grew, the stakes surrounding public The idea that “society” requires radical portrayals of blackness also increased. To change, and the idea that the forces cre- aid the struggle, image brokers sought cul- ating marginalized groups and minorities tural products that highlighted the trag- outside the norm must be fought, form no edy of white oppression and the reliability part of this rehabilitative model. of black dignity. In practice, this meant The argument that demanding to be “like excluding portrayals of black Americans everybody else” attributes a greater value that would suggest sexuality, childishness, to “everybody else” than “everybody else” or disability, all of which were associated may possess is of course a commonplace with the history of anti-black stereotypes. of black activism from the Sixties onward, The ironies are painful here—black sol- beginning with James Baldwin’s asking, diers were disproportionately punished in the context of his demand for immense for infractions of discipline during the war, transformations in Western societies, “Do I and those with war-derived physical and really want to be integrated into a burning mental disabilities were often denied dis- house?” But Jennifer James finds that even charge, and sometimes subjected to beat- in the Fifties, there was one literary voice ings and torture in the guise of “therapy.” consistently and repeatedly defying the But the pressure to convey the public mes- pressure to engage in “damage control,” sage that “The Negro is just like you,” with and possessing none of the “hesitance to “you” being an imagined able-bodied, offer graphic descriptions of a black body empowered, white audience who could wounded by warfare” that she sees inform- aid in the liberation struggle, led to strange ing most postwar black literature. This DISABILITY AND BLACKNESS | 313 author, who presented unashamed depic- ship, encompassing social and politi- tions of unrehabilitated black male bod- cal self-determination. ies, was the poet and novelist Gwendolyn • The insistence, exemplified in the slo- Brooks. In her 1944 “Soldier Sonnets” (reti- gan “Nothing about us without us,” tled “gay chaps at the bar”), her 1949 vol- that people with disabilities and their ume Annie Allen, and her 1953 novel Maud perspectives be included in accounts Martha, Brooks breaks with a tradition of of disability and the formation of dis- black American war writers who evaded ability policy. the issue of bodily injury; she seeks to give voice to various “non-heroic” bodies using These dogmas have been powerful tools for prose and verse structures that mirror their uniting people with similar goals, values, broken forms. The argument that “we are and experiences. But some of them suffer like other people” does appear in such son- from the problems inherent in any attempt nets as “the white troops had their orders to make broad generalizations that define but the Negroes looked like men,” but these a culture or an identity. “men” are not idealized figures of empow- While Jennifer James’s work shows how erment: they lose their limbs, faces, blood, black voices and Disability Studies cri- and lives in a war that offers little glory. tiques converge, Anna Mollow, another Brooks’ project, James believes, is to force participant in the Black Disability Studies socially produced disability into view and panel, focuses on how black perspectives to show that society, rather than the indi- can shake up and complicate the conven- vidual, is in dire need of rehabilitation. tional wisdom of the Disability Studies The head of Temple University’s Insti- world. She urges that, tute on Disabilities, Diane Bryen, in 1996 summarized the central precepts of Disa- in examining intersections of forms of bility Studies and the movements that gave oppression, we guard against the dangers of rise to it. They include a ‘disability essentialism,’ in which the experiences, needs, desires, and aims of all disabled people are assumed to be the same and • An opposition to “cureism,” the belief those with ‘different’ experiences are accom- that the goal of people with disabilities modated only if they do not make claims that should be focused on eliminating their undermine the movement’s foundational disability. arguments. • An opposition to the depiction of people with disabilities as helpless, Mollow’s work on Meri Nana-Ama Dan- pitiful, and powerless victims of their quah shows how a narrative in many ways impairments. at odds with the standards of the approach • An opposition to the “Supercrip” myth Bryen outlined: for Danquah, the fight of the disabled person who pulls him- is not to get out of a system that unjustly self up by his bootstraps to become an stigmatizes her as ill, or to combat stere- Inspiration to Us All. otypes about triumph and inspiration, but • Perception of the “problem of disabil- to get into a system that unjustly denies the ity” as a social (not a medical) problem reality of her illness and the resources she that can be minimized by eliminating needs to recover. barriers in the environment. There have been several positive devel- • The belief that people with disabilities opments both in intersectional activism have shared histories, cultures, and and in academic analysis since the pre- interests, and a desire for full citizen- diction opening this essay, including the 314 | JOSH LUKIN

rise of the National Black Disability Coa- people—remake us as full citizens whose lition and the publication of Chris Bell’s rights and privileges are intact, whose his- Blackness and Disability anthology. In the tory and contributions are recorded, and Bay Area, still a disability activism mecca, whose often distorted representations black performance artist Leroy Moore is a in art, literature, film, theater, and other leader both in social justice organizing and forms of artistic expression are fully ana- in the arts, with such projects as Krip Hop lyzed” (522). It is imperative that those Nation, which supports and raises public threads and theories, and that “fabric of awareness of musicians with disabilities. society,” not be imagined as all white. The University of Michigan Press has published Terry Rowden’s The Songs of Blind WORKS CITED Folk: African American Musicians and the Cultures of Blindness as part of its dis- Bell, Christopher M., ed. Blackness and Disability: ability studies series; the journal MELUS Critical Examinations and Cultural Interventions. East Lansing: Michigan State University Press, has published an issue on “Race, Ethnic- 2011. Print. ity, Disability, and Literature.” Education Bérubé, Michael. “Disability and Narrative.” PMLA scholar Nirmala Erevelles has been writing 120.2 (2005). 518–522. Print. groundbreaking work at the intersection of Bryen, Diane N. and Sieglinde A. Shapiro. “Disability disability studies and critical race theory, Studies: What Is It and Why Is It Needed?” Temple University Faculty Herald February 1996. Temple analyzing the creation of disability in peo- University Institute on Disabilities. Web. 3 March ple disadvantaged by class and race, the 2012. oppression of disabled people of color, and Danquah, Meri Nana-Ama. Willow Weep for Me: A he ideological use disability to justify racial, Black Woman’s Journey Through Depression. New gender, ethnic, and national oppression. York: Norton, 1998. Erevelles, Nirmala, Anne Kanga, and Renee Middle- There is a growing body of work of activ- ton. “How Does It Feel to Be a Problem? Race, Dis- ist women of color in the blogosphere and ability, and Exclusion in Educational Policy.” In on the academic conference circuit that is Brantlinger, Ellen, ed. Who Benefits from Special increasing awareness of disability move- Education? Remediating [Fixing] Other People’s ment struggles and insights. Children. London: Routledge, 2005. Print. Erevelles, Nirmala, and Andrea Minear. “Unspeak- The theme running through the work able Offenses: Untangling Race and Disability in of all of these writers is the need to listen Discourses of Intersectionality.” Journal of Liter- to black voices and consider distinctively ary & Cultural Disability Studies 4.2 (2010). 127– black experiences when tracing the his- 145. Print. tory of disability and its artistic represen- Erevelles, Nirmala, and Ivan Eugene Watts. “These Deadly Times: Reconceptualizing School Violence tation. Their insights can help us make by Using Critical Race Theory and Disability Stud- sense of the dilemmas and obstacles ies.” American Educational Research Journal 41.2 described by African Americans with dis- (2004). 271–299. Print. abilities and indeed could help to reduce Fiedler, Leslie. Freaks: Myths and Images of the Secret the misunderstandings and ignorance Self. New York: Simon and Schuster, 1978. ——. Tyranny of the Normal: Essays on Bioethics, The- encountered by Lacy, Galloway, and oth- ology, & Myth. Boston: Godine, 1996. ers in their position. Simi Linton has writ- Galloway, Donald. “Blind Services and Advocacy and ten that the “Disability Studies’ project is the Independent Living Movement in Berkeley.” to weave disabled people back into the Interviews conducted by Sharon Bonney and fabric of society, thread by thread, theory Fred Pelka. 2000–2002. Disability Rights and Inde- pendent Living Movement Oral History Series. UC by theory. It aims to expose the ways in Berkeley, 2004. Web. 3 March 2012. which disability has been made excep- Garland-Thomson, Rosemarie. Extraordinary Bodies: tional and to work to naturalize disabled Figuring Physical Disability in American Culture DISABILITY AND BLACKNESS | 315

and Literature. New York: Columbia UP, 1996. History Series. UC Berkeley, 2000. Web. 3 March Print. 2012. Hull, Gloria T., Patricia Bell-Scott, and Barbara Smith. Linton, Simi. “What Is Disability Studies?” PMLA 120.2 All the Women Are White, All the Blacks Are Men, (2005). 518–522. Print. but Some of Us Are Brave. Old Westbury, NY: Femi- Lukin, Josh. “The Black Panther Party.” In Encyclo- nist Press, 1982. Print. pedia of American Disability History, ed. Susan James, Jennifer C. A Freedom Bought with Blood: Burch. New York: Facts on File, 2009. Print. African American War Literature from the Civil Rowden, Terry. The Songs of Blind Folk: African War to World War II. Chapel Hill: UNC Press, 2007. American Musicians and the Cultures of Blind- Print. ness. Ann Arbor: University of Michigan Press, Lacy, Johnnie. “Director, Community Resources 2009. Print. For Independent Living: An African-American Schweik, Susan. “Lomax’s Matrix: Disability, Solidar- Woman’s Perspective on The Independent Liv- ity, and the Black Power of 504.” Disability Studies ing Movement in The Bay Area, 1960s–1980s.” Quarterly 31.1 (2011). Web. 3 March 2012. Interview conducted by David Landes. 1998. Dis- Stiker, Henri-Jacques. A History of Disability. 1982 (as ability Rights and Independent Living Movement Corps infirmes et societés). Trans. William Sayres. Oral History Series. UC Berkeley, 2000. Web. 3 Ann Arbor: University of Michigan Press, 1999. March 2012. Wu, Cynthia and Jennifer C. James, eds. Melus 31.3 ——. “Minority vs. Disability Identity.” Disabil- (2006): Race, Ethnicity, Disability, and Literature. ity Rights and Independent Living Movement Oral Print. CHAPTER 24

My Body, My Closet: Invisible Disability and the Limits of Coming Out Ellen Samuels

THE LIMITS OF ANALOGY tension between appearance and identity; the social scrutiny that refuses to accept A story: On a breezy afternoon one April statements of identity without “proof”; I met with “Samantha,” a student in an and, finally, the discursive and practical undergraduate course on literature and disconnections between coming out—in all ability, to talk about her paper on cultural the meanings of the term—as queer and images of burn survivors. After showing me as disabled. Thus I begin with Samantha’s her draft, she remained, eager to talk about story to frame a discussion not only of anal- issues of disability and visibility, about her ogies between queerness and disability but own experience as a person who appears of the specifics of coming out in each con- “normal” until one looks closely enough text as a person whose bodily appearance to see the scars on her jaw and neck, the does not immediately signal one’s own puckered skin that disappears under the sense of identity. In the first section of this neck of her T-shirt and reappears on her essay I consider the complicated dynamics arm and wrist. Since I almost always look inherent in the analogizing of social iden- “normal” despite my disabling chronic ill- tities, with specific reference to feminist, ness, I sympathized with her struggle over queer, and disability studies. In the second how and when to come out about her dissection I turn to the politics of visibility and ability identity. “My parents don’t under- invisibility, drawing on autobiographical stand why I would call myself disabled,” narratives as well as social theory to explore Samantha said matter-of-factly; then she constructions of coming out or passing in a added with a mischievous grin, “In fact, number of social contexts. In the third sec- there are two basic things my family just tion I further explore these issues through a doesn’t want to accept: that my cousin is focus on two “invisible” identities: lesbian- gay and that I’m disabled. So we’re going femme and nonvisible disability.1 Thus to take a picture of ourselves at a gay pride each section seeks to “queer” disability in march next month and send it to them.” order to develop new paradigms of iden- The moral: I admire Samantha’s wit and tity, representation, and social interaction. intelligence. I am also struck by the con- A number of disability theorists suggest vergence of many themes in her story: the that disability has more in common with shifting and contested meanings of dis- sexual orientation than with race, ethnicity, ability; the uneasy, often self-destroying or gender—other categories often invoked MY BODY, MY CLOSET | 317 analogically to support the social model of sex, whether construed as gender or as sexu- disability.2 One argument for this connec- ality. Third, implicit in the setting together of tion is that most people with disabilities, the two is a fantasy of coalition . . . [which] like most queers, do not share their identity sidesteps the processes and practices that 4 with immediate family members and often would make such coalition possible. have difficulty accessing queer or crip culture.3 The history of an oppressive medical Despite the validity of this critique, Hoge- model for homosexuality and the nature- land observes that the sex-race analogy nurture and assimilation-transformation continues to function in feminist theory debates in the modern LGBT civil rights and has also emerged strongly in queer movement offer additional areas of poten- theory (45). tial common ground with disability activ- My own investigation of the analogies ism. Haunting such arguments, however, regarding disability, however, suggests that is the vexed issue of analogy itself, which their use has transformed from a compari- cannot be extracted from the tangled his- son between similar oppressions to a stra- tory of the use and misuse of such identity tegic contrasting of identities to elucidate analogies in past liberation movements. a particular aspect of the primary identity In particular, most current analogies under discussion. Such a transformation between oppressed social identities draw accords with the classic definition of anal- in some fashion on the sex-race analogy ogy as based on “a similarity or resem- that emerged from the women’s liberation blance of relations, in which the resem- movement of the 1970s. This analogy was blance lies in the qualities of two or more 5 used primarily by white women to claim objects that are essentially dissimilar.” In legitimacy for feminist political struggle practice, such analogies often both cre- by analogizing it to the struggle of African ate and rely on artificial dichotomies that Americans for civil rights. The sex-race not only produce inequality between the analogy has been extensively critiqued, terms of comparison but exclude or elide most importantly by feminists of color, and anomalous experiences that do not fit eas- has by now been renounced by most white ily within their terms. feminists. The gist of such a critique is sug- For John Swain and Colin Cameron, gested by the title of Tina Grillo and Steph- strategic contrasting supports the claim anie M. Wildman’s article “Obscuring the that disability and sexual “preference” are Importance of Race: The Implications of both social labels that are “usually self-ref- Making Comparisons between Racism and erent from only one side,” so that, unlike Sexism (or Other Isms),” and is summa- dual or multiple labels such as male and rized by Lisa Maria Hogeland: female, and black, Asian, Latina, and white, the labels of nondisabled and heterosexu- First, in its use of race, it represents a fantas- ality are always already presumed “unless tic vision of African-American identity, com- otherwise stated.” Swain and Cameron munity, and politics—uncontested, uncon- conclude: “There is a coming out process tradictory, unproblematic—that is shaped for gay men and lesbian women which by a simultaneous nostalgia for and forget- has no real equivalent in gender and race ting of the Civil Rights Movement, as if iden- categorizations,” and “there is a similar tity, community, and politics had never been coming out process for disabled people.”6 the subjects of struggle. Second, the analogy In this argument, the identities of gayness attempts to forge out of that nostalgia and and disability are stabilized and opposed to forgetting an equally fantastic vision of a self- those of gender and race. Such an analogy evident identity, community, and politics of 318 | ELLEN SAMUELS

not only relies on an overly restrictive, uni- the endemic flaws of the mapping analogy lateral view of gender and race but implies itself, yet all language functions in a sense false equations between the two identi- through analogy, and so it remains an ines- ties on each side of the opposition (gay = capable part of the communicative realm. disabled; gender = race), thereby invoking Certainly, the tendency to make analogies the original sex-race analogy in a renewed between identities and liberation move- form. While this analogy claims for sexual ments is pervasive and often persuasive, oppression the same legitimacy as that and so I suggest not that we attempt to (supposedly) achieved for racial oppres- escape from analogy but that we seek to sion—my experience is like your experi- employ it more critically than in the past. ence—contrasting analogies such as that Bannet examines a particular means of employed by Swain and Cameron claim destabilizing and evolving mapping analo- for gay or disabled oppression a different gies through her discussion of Wittgen- valence than that of gender or race: my stein, for whom experience is different from yours. Yet both analogies have the same goal—to persuade analogy is not just an image, an extended the listener of the validity and urgency of simile, or the juxtaposition of objects of com- the speaker’s original experience—and parison. . . . analogy in Wittgenstein’s sense thus both implicitly devalue the other term is a traditional method of reasoning from the of comparison. known to the unknown, and from the visible to the speculative, by carrying familiar terms, An important difference between the paradigms, and images across into unfamil- analogies of sex-race and sexual orienta- iar territory.8 tion-disability is that the former relates to oppressions, while the latter describes I find this model of analogy especially use- processes of liberation and self-actualiza- ful, both because of its acknowledgment of tion, in this case, “coming out.” Perhaps the instability of its terms and because of analogies between liberatory practices its foregrounding of the issue of visibility as are less problematic than those between a key component of analogical language. oppressions, since they claim a sameness Indeed, when we consider that “theories not of experience but of resistance. This and practices of identity and subject for- argument has a certain logic; however, it mation in Western culture are largely struc- does not address the deeper issue of the tured around the logic of visibility, whether presumption of sameness that produces in the service of science (Victorian physi- oversimplified “mapping analogies.” As ognomy), psychoanalysis (Lacan’s mirror Eve Tavor Bannet explains, the mapping stage), or philosophy (Foucault’s reading analogy represents a historical mutation of the Panopticon),” it becomes appar- of analogy that, by “stressing resemblance ent that the speculative or “invisible” has over difference to make different entities generally functioned as the subordinate more or less alike[,] transformed analogy term in analogical equations to this date.9 into an equivalence—a rule of presumed Thus a central premise of this essay is that resemblance, structural isomorphism, or it behooves us to refocus our endeavors homology between domains. The moment from the visible signs of these identities to of essential difference which distinguishes their invisible manifestations. The focus analogy from identity, and different enti- on specularity and visible difference that ties from each other, was flattened into a permeates much disability theory creates 7 moment of proportional representation.” a dilemma not only for nonvisibly disabled Clearly, the sex-race analogy suffers from MY BODY, MY CLOSET | 319 people who wish to enter the conversa- to the observation that “people with hidden tion but for the overarching concepts of impairments are sometimes less likely to disability and normalization themselves.10 ‘come out’ as disabled, and move to a posi- Passing, closeting, and coming out become tive acceptance of difference and a politi- vexed issues that strain at the limitations of cal identity, because it is easier to maintain the discourse meant to describe them. a ‘normal’ identity.”11 However, when we add the preposition to to the phrase, the above statement becomes almost an oxy- THE LIMITS OF VISIBILITY moron: the narratives of people with “hid- Coming out, then, for disabled people, is den impairments,” like those of people a process of redefinition of one’s personal with other nonvisible social identities, are identity through rejecting the tyranny of the suffused with themes of coming out, pass- normate, positive recognition of impairment ing, and the imperatives of identity. and embracing disability as a valid social Nor is coming out a static and singular identity. Having come out, the disabled per- event, as Swain and Cameron imply, an son no longer regards disability as a reason for self-disgust, or as something to be denied over-the-rainbow shift that divides one’s or hidden, but rather as an imposed oppres- life before and after the event. Certainly, sive social category to be challenged and there must be some people who experi- broken down. . . . Coming out, in our analy- ence such momentous comings out, but sis, involves a political commitment. Accept- I believe that the majority of us find that, ance of a medical model of disability and even after our own internal shift, and even being categorized by others as disabled does after a dozen gay pride marches, we must not constitute coming out as disabled. still make decisions about coming out on —Swain and Cameron, “Unless Otherwise a daily basis, in personal, professional, and Stated” political contexts. In Dress Codes, Noelle Howey’s memoir about her father’s tran- One of the limitations of Swain and Cam- sition from male to female, she describes eron’s analogy between coming out as gay four separate moments of her father’s or lesbian and coming out as disabled is coming out: when he told her mother, their one-sided definition of coming out when her mother told her, when the fam- itself. For these writers, coming out refers ily threw a party for Noelle’s father to come specifically to accepting one’s “true” iden- out as female to friends and coworkers, tity and must entail identification with and when Noelle’s father came out to her the political analysis of the marginalized years later as a lesbian.12 Eli Clare writes group. In both queer and disabled contexts, of coming out as a complex convergence however, coming out can entail a variety of of identities and desires: “My coming out meanings, acts, and commitments. The wasn’t as much about discovering sexual dual meanings most crucial to my argu- desire and knowledge as it was about deal- ment can be signified grammatically: to ing with gender identity. Simply put, the “come out to” a person or group usually disabled, mixed-class tomboy who asked refers to a specific revelatory event, while her mother, ‘am I feminine?’ didn’t dis- to “come out” (without an object) usually cover a sexuality among dykes but rather refers to the time that one first realized and a definition of woman large enough to be came to terms with one’s own identity. comfortable for many years.”13 When coming out is considered as a self- When we look at narratives of disabled contained phrase, as in Swain and Cam- people about their own coming-out proc- eron’s article, we may grant some validity esses, we see that the language of coming 320 | ELLEN SAMUELS

out is used liberally but often carries very “disability.” Rather, it required her to con- different meanings. While many of these struct a specific narrative explaining her stories emphasize connections with a dis- body to a skeptical, ignorant, and some- ability community, much as Swain and what hostile audience. Susan Wendell, Cameron suggest, they also demonstrate who also has CFIDS, speaks of the difficulty the various methods and implications that of convincing people to take her word for it coming out entails for different individuals. regarding her abilities: “Some people offer Rosemarie Garland-Thomson, who calls such acceptance readily, others greet every her book Extraordinary Bodies “the conse- statement of limitation with skepticism, quence of a coming-out process,” describes and most need to be reminded from time how she had long thought of her congeni- to time.”17 tal disability as a “private matter” and did What is notable in Gage’s and Wen- not identify with disability culture or disa- dell’s accounts is that coming out is pri- bled people, although she did feel a special marily portrayed as the process of reveal- connection with disabled characters in the ing or explaining one’s disability to others, literature she studied.14 Deciding to focus rather than as an act of self-acceptance her scholarly work on disability was both facilitated by a disability community. I a cause and a consequence of her coming would suggest that the nonvisible nature to identify with the disability community. of Gage’s and Wendell’s disabilities means Similarly, Nomy Lamm, born with one leg, that, for them, the primary meaning of did not come out as disabled until late in coming out includes the term to and con- her teens, when, through her involvement notes the daily challenge of negotiating in queer and feminist activism, she met two assumptions about bodily appearance and other “freaky crip girls” and transitioned function. This dynamic is not limited to fairly quickly from “I’m not really disabled, those with chronic illnesses but can also and even if I am, nobody notices” to “I am be found in narratives by people with a a foxy one-legged dyke, and you will love it, range of nonvisible disabilities, especially or else.”15 sensory disabilities.18 Megan Jones, a deaf- Not all coming-out processes are so blind woman, writes of her response to the straightforward. Carolyn Gage writes: “Did ubiquitous question “So, how bad is your I come out? Not at first. I told my friends vision and hearing anyway? I mean, you I had CFIDS [chronic fatigue immune dys- seem to get around pretty good as far as I function syndrome], but I did not really tell can tell.”19 Jones admits that she once felt them what that meant. . . . When I did go obliged to respond with an extended nar- places with friends, I passed for able-bod- rative explaining exactly the permeability ied as much as I could.”16 For Gage, com- of her cornea and the sound frequencies ing out did not take place until nearly a she could detect. Georgina Kleege writes decade after she first fell ill, and it took the about her need “to identify [her] blindness form of a letter to her friends that explicitly in public,” particularly in the classroom, spelled out her disability, her limitations, so that her students will understand why and what she needed in terms of accom- she cannot see them raising their hands. modation and support. Perhaps because Kleege also writes of situations in which of the nonvisible, contingent, and fluctuat- she chooses not to mention her blindness, ing nature of chronic illness, as opposed to such as social settings and a previous job, the disabilities of Garland-Thomson and largely to avoid patronizing reactions or the Lamm, Gage’s coming-out process was not suspicion of fraud but also simply because primarily focused on claiming the label of her “blindness was an irrelevant fact that MY BODY, MY CLOSET | 321 they did not need to know about me, like the disability community and working my religion or political affiliation.”20 for disability rights. Thus she complicates Kleege’s account points to the flip side of the assumption of a direct relationship having to come out to be recognized as dis- between visible impairment and political abled: the ability to pass. Like racial, gen- identification with disability rights, as well der, and queer passing, the option of pass- as crucially undermining the related claim ing as nondisabled provides both a certain that passing as “normal” is by definition a level of privilege and a profound sense of form of negative disability identity.23 misrecognition and internal dissonance. Nevertheless, the perception persists Kleege reflects ruefully on a circumstance that nonvisibly disabled people prefer to in which, during a flight on which nondisa- pass and that passing is a sign and prod- bled passengers and flight attendants were uct of assimilationist longings: “By pass- ignoring or complaining about a wheeling as non-disabled, by minimizing the chair-using passenger, she did not come significance of their impairments within out: “Because my disability was invisible their own personal and social lives . . . peo- to them, it allowed them to assume I felt ple with hidden impairments often make about the disabled as they did, that I would an effort to avoid the perceived stigma have behaved as they had.”21 Even though attached to a disabled identity.” Even when Kleege and her husband were the only passing is acknowledged as a valid strat- passengers who assisted the wheelchair egy for negotiating certain situations, it is user, and Kleege came out to her as blind, portrayed as an undesirable response: “If she still expresses profound guilt that she . . . disabled people pursue normalization failed to identify herself as a member of too much, they risk denying limitations the woman’s community to the airline staff and pain for the comfort of others and may and other passengers. edge into the self-betrayal associated with This dilemma can be even more com- ‘passing.’”24 I do not deny that some non- plicated for those with a disability whose visibly disabled people may wish to assimi- symptoms and severity fluctuate widely. late or choose to pass; however, I believe Wendell writes: that such an overall negative perception of passing exceeds the reality and must be Because my disability is no longer readily interpreted in the context of other forms of apparent, and because it is an illness whose bodily passing in Euro-American culture. symptoms vary greatly from day to day, I As Lisa Walker observes: “Traditionally, live between the world of the disabled and passing (for straight, for white) has been the non-disabled. I am often very aware of read as a conservative form of self-repre- my differences from healthy, non-disabled sentation that the subject chooses in order people, and I often feel a great need to have my differences acknowledged when they are to assume the privileges of the dominant ignored. . . . On the other hand, I am very identity. Passing is the sign of the sell out” aware of how my social, economic, and per- and of the victim.25 sonal resources, and the fact that I can “pass” Such condemnations of passing often as non-disabled among strangers, allow me conflate two dynamics: passing deliber- to live a highly assimilated life among the ately (as implied by the term hidden) and non-disabled.22 passing by default, as it were. I certainly do not make any effort to appear “het- Wendell then emphasizes that, even when erosexual” or “nondisabled” when I leave she herself passes as nondisabled, she the house in the morning; those are sim- makes a point of identifying herself with ply the identities usually derived from my 322 | ELLEN SAMUELS

appearance by onlookers. While there are dignified response to the world’s interro- a number of queer accoutrements, such as gations.”27 In this case, coming out as disa- buttons, stickers, jewelry, and T-shirts, that bled appears to have more in common with I could (and often do) choose to wear to racial discourses of coming out or passing signal my lesbian identity, a very different than with queer discourse, since the con- cultural weight is placed on any attempt to tingent (non)visibility of queer identity has signal a disabled identity, as suspicions of produced a variety of nonverbal and/or fraud attach to any visible sign of disabil- spoken means to signal that identity, while ity that is not functionally essential. The the assumed visibility of race and disabil- analogy between coming out as queer and ity has produced an absence of nonverbal coming out as disabled breaks down as the signs and a distrust of spoken claims to different meanings and consequences of those identities. such acts come into consideration. In the absence of recognized nonverbal My quandary is not unique, nor is my signs, we often resort to the “less digni- search for a nonverbal sign. Deborah Peifer fied” response of claiming identity through observes that “I don’t look blind, so stran- speech. The complex longing, fear of dis- gers, sisters, don’t realize that I’m not see- belief, and internal dissonance caused by ing them. After so many years of being defi- coming out in this form resound through antly out of the closet as a lesbian, I am, in the narratives of all people who pass by some ways, passing as sighted. Other than default. Passing subjects must cope with wearing a ‘Yes, I am legally blind’ sign, a variety of external social contexts, few of I don’t know of any way to provide that which welcome or acknowledge spontane- information to strangers.” Jones became ous declarations of invisible identity. Der- so frustrated with strangers not believing ricotte writes that “for several years I wore in her visual and hearing impairments, and my identity like a banner. ‘Hello, I’m Toi so oppressed by their refusal to respect her Derricotte, I’m black.’” The awkwardness assistance dog’s status, that she began to of such revelations is amplified in Peifer’s use a white cane she did not need: “I find account of how she chose to voice her les- that when I use a cane people leave me bian identity after blindness prevented alone. . . . people go right into their Blind- her from participating in the subtle visual Person-With-A-Cane-And-Guide-Dog Red signals with which queer people in public Alert mode.” Kleege also mentions that “I often acknowledge each other: “They now now carry a white cane as a nonverbal sign know at the grocery store (‘As a lesbian, I that I don’t see as much as I seem to. But wish to buy these peaches’) and the drug- like a lot of blind people who carry canes store (‘As a lesbian, I wish to explain that the and employ guide dogs, these signs are yeast infection for which I am purchasing not always understood, and the word still this ointment was the result of taking anti- needs to be spoken.”26 These writers each biotics, not heterosexual intercourse’).”28 contend with cultural assumptions that Clearly, simply voicing one’s identity in the identity they wish to signal exists only any and all situations is a far-from-per- as visible physical difference. Since race, in fect solution to the dilemmas presented by Euro-American culture, is also assumed to invisibility. In addition, the general cultural be immediately visible and intelligible, Toi prejudice against such statements means Derricotte, a light-skinned African Ameri- that embarrassment may be the least dis- can woman, writes of wishing for “a cross, turbing negative response they evoke. a star, some sign of gold to wear so that, Suspicions of fraud often greet decla- before they wonder or ask, I can present a rations of nonvisible identity. As Amanda MY BODY, MY CLOSET | 323

Hamilton writes, people with nonvisible She said, “There aren’t any black people disabilities “are in a sense forced to pass, here. I haven’t seen any.” “Yes there are,” I and the same time assumed to be liars.” said, smiling. Adrian Piper, a light-skinned African Amer- “Who?” ican, also writes of the catch-22 of remain- “You’re looking at one.” “You’re not really black. Just an eighth or ing silent versus speaking up: “For most of something.” . . . my life I did not understand that I needed to A woman at the table said, “Did you read identify my racial identity publicly and that that article in The New York Times that said if if I did not I would be inevitably mistaken they were strict about genetics, sixty percent for white. I simply didn’t think about it. But of the people in the United States would be since I also made no special effort to hide classified as black?” my racial identity, I often experienced the I looked around the table; I was laugh- shocked and/or hostile reactions of whites ing. The others were not. They were worried who discovered it after the fact.” Piper about how black I was and they should have adds that “some whites simply can’t take been worrying about how black they were. my avowed racial affiliation at face value, (145) and react to what they see rather than what I say.”29 It takes tremendous chutzpah for Derricotte’s story can be read as a narra- nonvisibly disabled people to assert our tive enactment of Elaine Ginsberg’s obser- disabilities in public settings or to ask for vation that “passing forces reconsidera- tion of the cultural logic that the physical accommodation; denial, mockery, and 32 silent disapproval are some of the cultural body is the site of identic intelligibility.” mechanisms used to inhibit us. While non- Derricotte reverses the terms of the racial visibly disabled people are usually required dichotomy black/white to refocus racial to produce medical documentation of our anxiety onto whiteness as an artificial impairments, people who pass racially, like cultural construct, in a move that reflects Derricotte and Piper, face semantic battles, Wittgenstein’s reversal of analogy to lead interrogations about their ancestry, and us “from what we suppose is the case everywhere to what might happen otherwise challenges to their dedication to the Afri- 33 can American community.30 in particular cases.” While Derricotte’s Derricotte’s memoir, The Black Note- coming out was necessary for the scene to books, is an expanded meditation on race, unfold, her passing provided the founda- passing, and the self. In the chapter “Dia- tional meaning of the exchange. Thus we ries at an Artist’s Colony” she describes see how passing can become a subversive hearing a racist comment on her first night practice and how the passing subject may at the colony and not confronting the be read not as an assimilationist victim but as a defiant figure who, by crossing the bor- speaker. Later, in a section of that chapter 34 called “Coming Out,” she concedes that ders of identities, reveals their instability. “I [was] afraid to come out as a black person, to bear that solitude, that hatred, that THE LIMITS OF SUBVERSION invisibility.”31 Here Derricotte locates invisibility not as equivalent to passing but as A story: When a friend of mine read the the alienating consequence of coming out story of Samantha with which this essay in a hostile context. When she does come opens, she asked why Samantha would out later to a white woman, the woman’s identify as disabled. I did not have a con- resistance ironically foregrounds the white crete answer for her. Faced with that ques- colonists’ own anxiety about race: tion, many of us might point to our Social 324 | ELLEN SAMUELS

Security status, our medical records, our Both femme lesbians and people with neurological test results, or the signs of nonvisible disabilities present what Mar- difference on our bodies. I cannot tell you jorie Garber calls a “category crisis.”37 In where Samantha would point. I can only the dominant cultural discourse, as well observe the pride with which she claims as in lesbian and disability subcultures, her identity, the eagerness with which she certain assumptions about the correlation seeks to communicate it to others. I can between appearance and identity have only conclude that, for Samantha, “being resulted in an often exclusive focus on vis- disabled” means being not a victim, not a ibility as both the basis of community and special case, but a member of a proud and the means of enacting social change. Dis- fierce community. courses of coming out and passing are cen- Her attitude is refreshing. It demon- tral to visibility politics, in which coming strates the usefulness of analogizing con- out is generally valorized while passing is cepts of pride between queer and disabil- seen as assimilationist. Thus vigilant resist- ity contexts. As I continue in this section ance to external stereotypes of disability to investigate the complex dynamics of and lesbianism has not kept our subcul- passing and visibility by examining two tures from enacting dynamics of exclusion contemporary identities—lesbian-femme and surveillance over their members. Nor and nonvisible disability—issues of pride, does a challenge to those dynamics neces- resistance, and subversion come to the sarily imply a wish on my part to discard fore. While I myself claim both identities, visibility politics or a rejection of the value that is not the main reason I chose them. and importance of visibility for marginal- When reading about coming out and ized communities. As Walker observes: queer identity, I found that writings that questioned the politics of visibility largely The impulse to privilege the visible often focused on the controversial category of arises out of the need to reclaim signifiers of difference which dominant ideologies have lesbian-femme. Similarly, in both the dis- used to define minority identities negatively. ability community and the field of disabil- But while this strategy of reclamation is often ity studies, the question of nonvisible dis- affirming, it can also replicate the practices ability is emerging as a highly vexed, proof the dominant ideologies which use visibil- foundly challenging concern. Embodying ity to create social categories on the basis of both identities as I do, I naturally notice exclusion. The paradigm of visibility is total- connections between the experiences they izing when a signifier of difference becomes produce; at the same time, I am also aware synonymous with the identity it signifies. of the significant differences and contra- In this situation, members of a given popu- dictions between those experiences.35 To lation who do not bear that signifier of dif- begin with, we may briefly examine some ference or who bear visible signs of another identity are rendered invisible and are mar- of the interesting correspondences and ginalized within an already marginalized contrasts between these identities. Con- community.38 sidering Joan Nestle’s suggestion that “if the butch deconstructs gender, the femme Moreover, people with nonvisible dis- constructs gender,” what useful trains of abilities not only are marginalized in dis- thought can we set into motion by analo- ability communities but walk an uneasy gizing butch/femme and gender to vis- line between those communities and the ibly/nonvisibly disabled and ability, and dominant culture, often facing significant what are the inherent problems of such an discrimination because our identities are analogy?36 unrecognized or disbelieved. MY BODY, MY CLOSET | 325

The history of femme identity in Euro- daily struggle for accommodation and ben- American culture, much like that of non- efits that reflects the dominant culture’s visible disabilities, is one of indetermi- insistence on visible signs to legitimate nacy and ambiguity: “The femme woman impairment. The very diversity of non- has been the most ambiguous figure in visible disabilities, which include a wide lesbian history; she is often described as range of impairments, such as chronic the nonlesbian lesbian, the duped wife of and terminal illness, sensory impairment, the passing woman, the lesbian who mar- learning and cognitive differences, men- ries.”39 Extending Terry Castle’s analysis tal illness, and repetitive strain injuries, of the “apparitional lesbian,” Walker sug- presents a category crisis. While I do not gests that “the feminine lesbian . . . per- claim to present a comprehensive range haps more than any other figure for same- of impairments among the authors I cite, sex desire, ‘haunts the edges of the field of a reading of numerous narratives across vision.’” The sexologists who first named impairments suggests a common experi- lesbianism in the early twentieth century ence structured by the disbelieving gaze had difficulty describing femmes except of the normate (much as theorists such as as dupes of the masculine “inverts” on Garland-Thomson and Lennard J. Davis whom their theories centered, since “the argue that disability is constructed via the feminine lesbian produces a collapse at normate’s stare confronted by people with the intersection of the systems of mark- visible disability).42 ing and visibility that underpin the theory In an intriguing twist, Cal Montgomery of inversion.”40 During the rise of lesbian rejects the distinction between visible and feminism in the 1970s and 1980s, femme nonvisible disabilities and instead points lesbians were shunned for supposedly to contradictions between “tools,” behav- copying heterosexual roles and buying iors, and social expectations: into misogynist beauty standards. In the early 1990s, with the publication of Nes- The person who uses a white cane when get- tle’s groundbreaking anthology, The Per- ting on the bus, but then pulls out a book sistent Desire, many femme writers and to read while riding; the person who uses a activists began to speak out in defense of wheelchair to get into the library stacks, but their identities and to protest “the penal- then stands up to reach a book on a high ties we have had to pay because we look shelf; the person who uses a picture-board to discuss philosophy; the person who chal- like ‘women’—from straight men, from lenges the particular expectations of disabil- so-called radical feminists, and from some ity that other people have is suspect. “I can’t lesbian separatists who, because of their see what’s wrong with him,” people say, anger at the social construction of femi- meaning, “He’s not acting the way I think ninity, cannot allow us to even exist.” Yet he should.” “She’s invisibly disabled,” they Rebecca Ann Rugg, a member of the gen- say, meaning, “I can’t see what barriers she eration following Nestle’s, still describes faces.”43 facing “two constant problems for a nineties femme: invisibility as a dyke and how Montgomery’s examples illustrate the cat- to authenticate herself as one despite egory crisis evoked by invisible and non- doubt and rudeness from others.”41 visible disabilities. These contradictions Rugg’s comment also rings true for the among appearance, behavior, and social experiences of many people with nonvis- expectations are, of course, embodied as ible disabilities, who face not only uneasy well in the figure of the femme: “Women inclusion in the disability community but a who look and act like girls and who 326 | ELLEN SAMUELS

desire girls. We’re just the queerest of the gers.48 Recently, a sympathetic nondisabled queers.”44 friend of mine told me that a colleague of Yet there are significant differences hers had reported triumphantly her detec- between nonvisible disability and femme tion of someone using a disabled parking identity. Nestle writes of the “bitter irony” permit illegally. The colleague’s conclusion that while “in the straight world, butches was based on the fact that the woman she bear the brunt of the physical and ver- saw getting out of the car was young and bal abuse for their difference, in the les- “well-groomed” and had no sign of a limp. bian-feminist world, femmes have had to In addition, the colleague continued, she endure a deeper attack on their sense of had followed the woman closely as they self-worth.”45 This remark highlights an entered the building and had ascertained important distinction, for it appears that that she was breathing “normally” and so femme lesbians are marginalized primarily could have no respiratory impairments. in lesbian subculture, while people with Such constant and invasive surveillance nonvisible disabilities write more often of non-visibly disabled bodies is the result of the frustration and discrimination they of a convergence of complicated cultural face in the dominant culture. Thus passing discourses regarding independence, fraud, and coming out take on different valences malingering, and entitlement; the form it with regard to these different identities. takes almost always involves a perceived However, as we have seen, these differ- discontinuity between appearance, behav- ent valences are translated into the theo- ior, and identity. retical fields based on those identities, that It is useful here to consider Foucault’s is, queer theory and disability studies, in interpretation of the Panopticon as a cul- intriguingly similar fashions. tural mechanism that, among its other The difficulty of circulating in the domi- uses, functions to “distinguish ‘laziness nant culture as a femme is largely pro- and stubbornness’” and “to put beggars duced by unwanted attention from men and idlers to work.” Foucault invokes the and by the general assumption that one is Panopticon, a nineteenth-century prison heterosexual. Combined with denigration design in which a central watchtower is and misrecognition in the lesbian com- surrounded by individual windowed cells, munity, these dynamics can cause signifi- as the metaphoric basis for contemporary cant frustration and alienation for femmes: surveillance of and by individual members “Femme is loquería [‘the crazies’]. Having of society. The Panopticon’s power is to your identity constantly under question, “induce in the inmate a state of conscious who wouldn’t risk losing their mind, and and permanent visibility that assures the their identity along the way?”46 Never- automatic functioning of power.”49 Thus theless, there appears to be a wide differ- the Panopticon-like surveillance promoted ence between that alienation and the har- by cultural myths of fraud ensures that, just assment, discrimination, and economic as “the Other named as invisible is unseen repercussions experienced by non-visibly as an individual, while simultaneously [it disabled people in the culture at large. is] hyper-visible as a stereotype,” the non- Many write of being denied benefits and visibly disabled subject is rendered hyper- accommodations because their nonvis- visible through social scrutiny and surveil- ible disabilities are perceived as minor or lance.50 Thus many nonvisibly disabled imaginary.47 Nonvisibly disabled people people may feel that our choice is between who use disabled parking permits are rou- passing and performing the dominant cul- tinely challenged and harassed by stran- ture’s stereotypes of disability: MY BODY, MY CLOSET | 327

Many people are more comfortable relating Instead, its focus on the visual continues to me and accommodating me if they can to render nonvisible disabilities invis- be absolutely certain that I am who I say I ible while reinforcing the exact cultural am, a deaf-blind person. And they are not reliance on visibility that oppresses all of absolutely certain that I am that person until us. I bump into a wall or shape my hands into Walker suggests that “the femme can be what is to them an incomprehensible language. In other words, I must make myself read as the ‘blind spot’ in [Judith] Butler’s 54 completely alien to these people in order for notion of gender as a performance.” I have them to feel that they understand me.51 often felt a similar gap in disability studies texts, even as I have benefited hugely from In contrast to this general cultural reac- many of their insights. Their focus on visu- tion to nonvisible disability, the disability ality and the “gaze” sometimes leads me community, while still largely structured to question if my extremely limiting and around visible disabilities, is increas- life-changing health condition really quali- ingly cognizant and welcoming of nonvis- fies as a disability according to the social ibly disabled people. There are certainly model. Such anxieties open up larger ques- exceptions, which often seem to arise in tions regarding the shifting definition of connection with questions of access to disability and the need to resist hierarchies disability-centered events, such as con- of oppression. ferences.52 Nevertheless, a large body of In a phrase that echoes the experiences writing criticizing the disability commu- of people with nonvisible disabilities, Rugg nity for excluding those with non-visible observes that “daily lives lived femme disabilities simply does not exist. In con- constantly require negotiating problems trast, the vast majority of twentieth-cen- of visibility,” but she subverts the victim- tury American writings on femme identity izing potential of this observation with its make some reference to feeling excluded, conclusion: “Thus, there are innumerable ignored, or belittled in the larger lesbian examples of radical and subversive per- community. I have already discussed formances of femme in every imaginable the history of the lesbian feminist move- context.”55 Mykel Johnson also argues for ment’s rejection of femme identity, as well an interpretation of femme as subversive as the contemporary response. Both Rugg performance: and Walker suggest that queer theory, which challenges categories of gender and It seems to me that femme dykes, as well as desire, may have indirectly contributed an butch dykes, fuck with gender. We are not epistemological basis for the latest deval- passing as straight women. Lesbian femme is uing of femme identity: Rugg writes that not the same as “feminine.” . . . a femme dyke is not trying to be discreet. There is some- “femme circulates as a term of derision” thing in femme, in fact, that is about creating in many dyke spaces, particularly in the a display. A femme dyke displays the erotic “pomo dyke scene,” which emphasizes power of her beauty. She is bold enough to 53 gender bending and androgyny. Simi- claim that power in a culture that has main- larly, I would suggest that, while disabil- tained a tyranny of “beauty norms” that may ity studies has presented profound chal- or may not include her. . . . A femme dyke is lenges to dominant cultural conceptions not domesticated but wild.56 of the body, social identity, and independence, it has not provided the theoretical It is challenging, however, to imagine non- basis on which to critique and transform visible disability as a subversive display. the equation of appearance with ability. While many markers of femme identity 328 | ELLEN SAMUELS

carry erotic significance and are linked to a ing in being femme if I’m absent from the fundamental discourse of desire, markers of queer women’s community and have lost nonvisible disability tend to carry medical the markers of femme identity? significance and be linked to fundamental discourses of illness. However, it is possible Since becoming disabled, Wachsler has for nonvisibly disabled people, like femme learned to value aspects of herself that lesbians, to choose to ally ourselves with she once considered “too femme,” such individuals visibly marked by their shared as accepting help from others. By creating identity; as Rugg insists, “Those of us per- accessible spaces in which to enact her new ceived as acceptable by an assimilationist femme identity, Wachsler has reconnected politics must constantly show our alliance with its meaning: “I carry my femme- to people marked as stereotypical.”57 ness inside me like a red satin cushion. It Furthermore, some clues may be given comforts me. It gives me a place to rest. It for the possibility of such subversive per- sets me aglow with color. And I know that formance from the narratives of people when it can, my femme flare will emerge 59 with multiple identities, including femme glittering.” and disabled. Mary Frances Platt writes of Platt’s and Wachsler’s transformations her struggle to reclaim femme identity after indicate a merging of femme and disabil- becoming disabled as an adult: ity identities that produces a third identity, “disabled femme,” one intriguing example The more disabled I became, the more I of “disability queered.” This identity can be mourned the ways my sexual femme self understood as well through Gloria Anzal- had manifested through the nondisabled dúa’s concept of “mestiza consciousness”: me. . . . It’s been five years now since I began “The work of mestiza consciousness is to using a wheelchair. I am just awakening to break down the subject-object duality that a new reclamation of femme. . . . An outra- keeps her [the mestiza] a prisoner and to geous, loud-mouthed femme who’s learn- show in the flesh and through the images ing to dress, dance, cook, and seduce on in her work how duality is transcended.”60 wheels; finding new ways to be gloriously fucked by handsome butches and aggres- Gaby Sandoval, a Chicana nondisabled sive femmes. I hang out more with the sexual femme, draws on Anzaldúa’s work when outlaws now—you know, the motorcycle les- she revises passing into a positive strat- bians who see wheels and chrome between egy by suggesting that her experience as a your legs as something exciting, the leather Chicana who grew up “passing the border” women whose vision of passion and sexual- between the United States and Mexico gave ity doesn’t exclude fat, disabled me.58 her the skills to negotiate the ambiguities of mixed-race and femme identity: Like Platt, Sharon Wachsler found a new source of “femmeness” in herself after I am at home in my discomfort. I am a queer being forced to relinquish many external child; never quite fitting in, but always pass- signifiers and behaviors of femme: ing. I am a femme who exploits the confines of gender perceptions. . . . These abilities are def- Because of my chemical sensitivities, I had initely telling of a life lived on the border, with 61 to throw out all my personal-care products, all of its contradictions and confusions. including perfume, hair-styling aids and cos- metics. . . . Now that I could no longer attend Similarly, Willy Wilkinson, a disabled Asian those [queer] events or wear the clothing, American transperson, writes of a merg- makeup and accessories that went with ing of border identities that inform and them, was I still femme? Where is the mean- empower one another: MY BODY, MY CLOSET | 329

The thing about mixed [race] people is that, ary between us, can be our homeland, our like transgendered people, we are stealth. shared definition. You don’t always see us coming, and you can’t be so sure about what you’re dealing with. . . . I’m accustomed to cultural conflict NOTES and surprise with the same intimacy that I For feedback and support through several versions know the terrain of my features and the of this essay, I am grateful to Alison Kafer, Robert hues of my skin. . . . How fitting to become McRuer, Meagan Rosser, Susan Schweik, Stefanie disabled with an illness [CFIDS] rife with Stroup, and Abby L. Wilkerson. ambiguity and complexity, one whose very realness is questioned. It’s the story of my 1. In current disability discourse, the terms invisible life.62 disability and nonvisible disability are often used interchangeably. Yet while the term invisible may be used in a literal sense to signify an unmarked In each of these cases, mestiza conscious- social identity, the metaphor of invisibility has ness emerges not simply as a combina- long been used to indicate the marginality or tion of factors but as a praxis of embod- oppression of a social group. Thus disability ied identities that occupies the border discourse (like queer theory and other liberatory as homeland. Femme identity and movements) also employs metaphorics of visibility that are unmoored from any question nonvisible disability can both benefit of marked or unmarked bodies. To minimize from such examples, which urge us to find confusion in this essay, I employ nonvisible to subversion at the meeting points between indicate the condition of unmarked identity our bodies and our chosen communi- and invisible to indicate social oppression and ties, between our voices and the resistant marginality. However, I also seek to investigate how the two meanings and conditions intersect, audiences of power. In addition, by queer- since nonvisible disabilities remain largely ing disability in these ways, we offer the invisible, both in disability discourse and in the larger fields of queer and disability studies culture at large. new possibilities beyond simple analogiz- 2. For a prominent example of the disability/sexual ing as we explore “unfamiliar territory” orientation analogy see John Swain and Colin Cameron, “Unless Otherwise Stated: Discourses together. of Labelling and Identity in Coming Out,” in The moral: Recently, I met with Saman- Disability Discourse, ed. Mairian Corker and tha to show her a draft of this essay, to see Sally French (Philadelphia: Open University if my memory and representation of our Press, 1999), 68–78. Tom Shakespeare analogizes encounter matched her own recollection. disability to gender, sexual orientation, and race in “Disability, Identity, and Difference,” in After reading my words, she showed me Exploring the Divide: Illness and Disability, ed. prints of the photo-essay she is construct- Colin Barnes and Geof Mercer (Leeds: Disability, ing for her senior thesis: black-and-white 1996), 94–113. Rosemarie Garland-Thomson and shots of the gnarled skin of her hands jux- Susan Wendell both make frequent analogies taposed against other landscapes: cypress between disability and gender. See Garland- Thomson, Extraordinary Bodies: Figuring bark, deep-sea sponges, the surface of Physical Disability in American Culture and San Francisco Bay. These images will be Literature (New York: Columbia University juxtaposed with head shots of disabled Press, 1997); and Wendell, The Rejected Body: and nondisabled people covering their Feminist Philosophical Reflections on Disability faces with their hands, hiding their iden- (New York: Routledge, 1996). Garland-Thomson also argues for a view of disability as ethnicity, tities behind their smooth skin. In a way, but she invokes sexual orientation only with Samantha is my opposite: her disability regard to nonvisible disability, which, “much lives on the skin, while mine hides beneath like a homosexual identity, always presents the it. But as we work toward one another, I dilemma of whether or when to come out or to begin to believe that the skin, the bound- pass” (14). Lennard J. Davis, however, defines 330 | ELLEN SAMUELS

disability both in analogies to race, gender, and Liberation (Cambridge, Mass.: South End, and class and in contrast to them in Enforcing 1999), 133. Normalcy: Disability, Deafness, and the Body 14. Garland-Thomson, Extraordinary Bodies, ix. (London: Verso, 1995), xvi, 2. 15. Nomy Lamm, “Private Dancer: Evolution 3. See Shakespeare, “Disability, Identity, and of a Freak,” in Restricted Access: Lesbians on Difference,” 105; and Wendell, Rejected Body, Disability, ed. Victoria A. Brownworth and Susan 82. Raffo (Seattle: Seal, 1999), 160–61. 4. Tina Grillo and Stephanie M. Wildman, 16. Carolyn Gage, “Hidden Disability: A Coming “Obscuring the Importance of Race: The Out Story,” in Brownworth and Russo, Restricted Implications of Making Comparisons between Access, 203. CFIDS is a debilitating systemic Racism and Sexism (or Other Isms),” in Critical illness that primarily affects the neurological, White Studies: Looking behind the Mirror, immune, and muscular systems. It is also known ed. Richard Delgado and Jean Stefancic as myalgic encephalomyelitis. For more detail (Philadelphia: Temple University Press, 1997), see Peggy Munson, ed., Stricken: Voices from the 619–26; Lisa Maria Hogeland, “Invisible Man and Hidden Epidemic of Chronic Fatigue Syndrome Invisible Women: The Sex/Race Analogy of the (New York: Haworth, 2000). 1970s,” Women’s History Review 5 (1996): 46. 17. Wendell, Rejected Body, 4. 5. Nilli Diengott, “Analogy As a Critical Term: A 18. This dynamic can be found as well in the writings Survey and Some Comments,” Style 19 (1985): of people with visible disabilities who ponder 228. whether to “come out” textually, thus revealing 6. Swain and Cameron, “Unless Otherwise Stated,” their absent bodies much as nonvisibly disabled 68. The example of “black, Asian, Latina, and people who come out are revealing some aspect white” is one that I have extrapolated from Swain of their health or mental status. As Nancy Mairs and Cameron’s article rather than one that they reflects in Waist-High in the World: A Life among themselves offer. the Nondisabled (Boston: Beacon, 1996), “I might 7. Eve Tavor Bannet, “Analogy As Translation: have chosen to write in such a way as to disregard Wittgenstein, Derrida, and the Law of Language,” or deny or disguise the fact that I have MS” (10). New Literary History 28 (1997): 658. 19. Megan Jones, “‘Gee, You Don’t Look Handi- 8. Ibid., 655. capped . . . ’: Why I Use a White Cane to Tell 9. Linda Schlossberg, introduction to Passing: People That I’m Deaf,” Electric Edge, July–August Identity and Interpretation in Sexuality, Race, 1997, accessed on 10 July 2002 at www.ragged- and Religion, ed. María Carla Sánchez and Linda edge-mag.com/archive/look.htm. Schlossberg (New York: New York University 20. Georgina Kleege, Sight Unseen (New Haven: Yale Press, 2001), 1. University Press, 1999), 11–12. 10. Davis writes that “disability is a specular 21. Ibid., 38–39. moment” and argues that all disability, even 22. Wendell, Rejected Body, 76. mental illness, “shows up as a disruption in the 23. See Shakespeare, “Disability, Identity, and visual field” (Enforcing Normalcy, xvi, 11–15, Difference,” 100. 129–42). Garland-Thomson also focuses on the 24. Swain and Cameron, “Unless Otherwise Stated,” “stare” that constructs the category of disability 76; Garland-Thomson, Extraordinary Bodies, 13. (Extraordinary Bodies, 26); Kenny Fries uses 25. Lisa Walker, Looking Like What You Are: Sexual a similar focus (Staring Back: The Disability Style, Race, and Lesbian Identity (New York: New Experience from the Inside Out [New York: Plume, York University Press, 2001), 8. 1997], 1). 26. Deborah Peifer, “Seeing Is Be(liev)ing,” in 11. Tom Shakespeare, Kath Gillespie-Sells, and Brownworth and Russo, Restricted Access, 34; Dominic Davies, The Sexual Politics of Disability: Jones, “‘Gee, You Don’t Look Handicapped . . .’”; Untold Desires (New York: Cassell, 1996), Kleege, Sight Unseen, 39. 55. These authors clearly share Swain and 27. Toi Derricotte, The Black Notebooks: An Interior Cameron’s definition of coming out, as seen in Journey (New York: Norton, 1997), 112. their summary on page 58. 28. Ibid., 111; Peifer, “Seeing Is Be(live)ing,” 34. 12. From a private conversation with Noelle 29. Amanda Hamilton, “Oh the Joys of Invisibility!” Howey, July 2001. Howey further discusses her letter to the editor, Electric Edge, July–August experiences in Dress Codes: Of Three Girlhoods— 1997, accessed on 10 July 2002 at www.ragged- My Mother’s, My Father’s, and Mine (New York: edge-mag.com/archive/look.htm; Adrian Piper, Picador, 2002). “Passing for White, Passing for Black,” in Passing 13. Eli Clare, Exile and Pride: Disability, Queerness, and the Fictions of Identity, ed. Elaine K. Ginsberg MY BODY, MY CLOSET | 331

(Durham: Duke University Press, 1996), 256–57, in the office the other day you seemed to function 266. just fine’” (“‘Gee, You Don’t Look Handicapped 30. Derricotte, Black Notebooks, 145, 160, 182; Piper, . . .’”). It took Jones a year of procuring letters “Passing for White, Passing for Black,” 234–38, from every authority imaginable to receive the 256–57, 262–64. necessary funding. This dynamic is not unusual, 31. Derricotte, Black Notebooks, 142. but it is brought up frequently in conversations 32. Ginsberg, Passing, 4. among people with nonvisible disabilities. As 33. Bannet, “Analogy As Translation,” 663. Hamilton observes, responding to Jones’s story, 34. This dynamic may also be observed from the many students with nonvisible disabilities are role of passing in transgender contexts, in which forced to “‘pass’ as ‘normal’ students, making the ability to pass for a new or different gender, sophisticated compensation strategies in order or to present an ambiguous gender, is often to complete our requirements and research, experienced as a validation of radical identity at which point, when we hit barriers . . . sure rather than as assimilation or misrecognition. enough, we aren’t disabled enough—thanks to 35. To locate myself in my analysis, I refer to both the success of previous compensation efforts” femmes and people with nonvisible disabilities (“Oh the Joys of Invisibility!”). with the pronoun we throughout this section; 48. I have experienced this harassment many times, however, I do not mean to imply that I speak for as has every nonvisibly disabled person with a all femmes or all nonvisibly disabled people or parking permit I have asked about it. that all people who share these identities think 49. Michel Foucault, Discipline and Punish: The alike. Birth of the Prison, trans. Alan Sheridan (New 36. Joan Nestle, ed., The Persistent Desire: A Femme- York: Vintage, 1995), 203–5, 201. Butch Reader (Boston: Alyson, 1992), 16. 50. Hogeland, “Invisible Man and Invisible Women,” 37. Cited in Ginsberg, Passing, 8. 36. 38. Walker, Looking Like What You Are, 209–10. 51. Jones, “‘Gee, You Don’t Look Handicapped . . .’” 39. Nestle, Persistent Desire, 15–16. 52. Montgomery observes that “although [the 40. Walker, Looking Like What You Are, 11, 5. disability community] may understand disability 41. Nestle, Persistent Desire, 18; Rebecca Ann Rugg, differently than others do, we have not, as a group, “How Does She Look?” in Femme: Feminists, abandoned the suspicion of people who may not Lesbians, and Bad Girls, ed. Laura Harris and be ‘really’ disabled, who may be ‘slacking’ or Elizabeth Crocker (New York: Routledge, 1997), ‘faking’ or encroaching on ‘our’ movement and 175. ‘our’ successes. And we respond to people who 42. See the pages referenced in note 10 for a challenge our ideas of what disabled people are discussion of this argument. One further ‘really like’ just as nondisabled people do: with distinction to be made here, however, is that suspicion” (“Hard Look at Invisible Disability,” the disbelieving gaze structuring the experience 16). of the nonvisibly disabled subject may come 53. Rugg, “How Does She Look?” 176. not only from the normate but also from other 54. Walker, Looking Like What You Are, 203. disabled subjects. See Cal Montgomery, “A Hard Furthermore, “Butler’s genealogy rests on Look at Invisible Disability,” Ragged Edge, no. 2 deconstructing the normative paradigm (2001): 16. that figures a correspondence between sex, 43. Ibid., 16. gender, and sexuality. In turn, this rests on an 44. Madeline Davis, “Epilogue: Nine Years Later,” in inner/outer distinction that ‘stabilizes and Nestle, Persistent Desire, 270. consolidates the coherent subject.’ This binary 45. Nestle, Persistent Desire, 15. locates the ‘self’ within the body and reads the 46. Gaby Sandoval, “Passing Loquería,” in Harris body as reflection of the ‘truth’ of that self. . . . In and Crocker, Femme, 173. Sandoval adapts a strategy of destabilization which relies on Gloria Anzaldúa’s description of being a lesbian the visual performance of difference, the fact of color as making for “loquería, the crazies” that no distinction between ‘inner’ and ‘outer’ (Borderlands, 2d ed. [San Francisco: Aunt Lute, identities is made visible on the surface of the 1999], 19). femme’s body as it is on the drag queen’s and the 47. Jones, a graduate student, once received a letter butch’s bodies marginalizes the femme” (204–5). from her university, responding to her request For more on Butler’s original claims see Judith for funds for assistance, “which essentially said, Butler, Bodies That Matter: On the Discursive ‘We do not understand what you mean when you Limits of “Sex” (New York: Routledge, 1993). refer to yourself as “deaf-blind.” When you were 55. Rugg, “How Does She Look?” 176. 332 | ELLEN SAMUELS

56. Mykel Johnson, “Butchy Femme,” in Nestle, are white or Anglo, Anzaldúa’s term appears to Persistent Desire, 397–98. be an appropriate and accurate description of the 57. Rugg, “How Does She Look?” 180. consciousness that they reveal, and the application 58. Mary Frances Platt, “Reclaiming Femme of her theoretical terms to disability seems a . . . Again,” in Nestle, Persistent Desire, 388–89. logical extension of her own compelling interest 59. Sharon Wachsler, “Still Femme,” in Brownworth in the “magical,” boundary-crossing potential of and Russo, Restricted Access, 111–12, 114. “abnormality and so-called deformity” (41). 60. Anzaldúa, Borderlands, 102. I use the term mestiza 61. Sandoval, “Passing Loquería,” 170–71. with acute awareness of its racial and cultural 62. Willy Wilkinson, “Stealth,” in Munson, Stricken, references. While many of the authors I refer to 81. CHAPTER 25

Integrating Disability, Transforming Feminist Theory Rosemarie Garland-Thomson

DISABILITY STUDIES AND FEMINIST due to the fact that many disability studies STUDIES scholars simply don’t know either feminist theory or the institutional history of wom- Over the last several years, disability stud- en’s studies. All too often the pronounce- ies has moved out of the applied fields of ments in disability studies of what we need medicine, social work, and rehabilitation to start addressing are precisely issues that to become a vibrant new field of inquiry feminist theory has been grappling with for within the critical genre of identity stud- years. This is not to say that feminist theory ies that has developed so productively in can be transferred wholly and intact over the humanities over the last twenty or so to the study of disability studies, but it is to years. Charged with the residual fervor of suggest that feminist theory can offer pro- the civil rights movement, women’s stud- found insights, methods, and perspectives ies and race studies established a model that would deepen disability studies. in the academy for identity-based critical Conversely, feminist theories all too enterprises that followed, such as gender often do not recognize disability in their studies, queer studies, disability studies, litanies of identities that inflect the cate- and a proliferation of ethnic studies, all of gory of woman. Repeatedly, feminist issues which have enriched and complicated our that are intricately entangled with disabil- understandings of social justice, subject ity—such as reproductive technology, the formation, subjugated knowledges, and place of bodily differences, the particulari- collective action. ties of oppression, the ethics of care, the Even though disability studies is now construction of the subject—are discussed flourishing in disciplines such as history, without any reference to disability. Like literature, religion, theater, and philoso- disability studies practitioners unaware of phy in precisely the same way feminist feminism, feminist scholars are often sim- studies did twenty-five years ago, many of ply unacquainted with disability studies its practitioners do not recognize that dis- perspectives. The most sophisticated and ability studies is part of this larger under- nuanced analyses of disability, in my view, taking that can be called identity studies. come from scholars conversant with femi- Indeed, I must wearily conclude that much nist theory. And the most compelling and of current disability studies does a great complex analyses of gender intersectional- deal of wheel reinventing. This is largely ity take into consideration what I call the 334 | ROSEMARIE GARLAND-THOMSON

ability/disability system—along with race, more fully into our society. As such, both ethnicity, sexuality, and class. are insurgencies that are becoming institu- I want to give the omissions I am de- tionalized underpinning inquiries outside scribing here the most generous inter- and inside the academy. A feminist disabil- pretation I can. The archive, Foucault has ity theory builds on the strengths of both. shown us, determines what we can know. There has been no archive, no template for FEMINIST DISABILITY THEORY understanding disability as a category of analysis and knowledge, as a cultural trope My title here, “Integrating Disability, Trans- and an historical community. So just as the forming Feminist Theory,” invokes and now widely recognized centrality of gender links two notions, integration and transfor- and race analyses to all knowledge was un- mation, both of which are fundamental to thinkable thirty years ago, disability is still the feminist project and to the larger civil not an icon on many critical desktops now. rights movement that informed it. Integra- I think, however, that feminist theory’s tion suggests achieving parity by fully in- omission of disability differs from disability cluding that which has been excluded and studies’ ignorance of feminist theory. I find subordinated. Transformation suggests re- feminist theory and those familiar with it imagining established knowledge and the quick to grasp the broad outlines of disabil- order of things. By alluding to integration ity theory and eager to consider its impli- and transformation, I set my own modest cations. This, of course, is because feminist project of integrating disability into femi- theory itself has undertaken internal cri- nist theory in the politicized context of the tiques and proved to be porous and flex- civil rights movement in order to gesture ible. Disability studies is news, but feminist toward the explicit relation that feminism theory is not. Nevertheless, feminist theory supposes between intellectual work and a is still resisted for exactly the same reasons commitment to creating a more just, equi- that scholars might resist disability studies: table, and integrated society. the assumption that it is narrow, particular, This essay aims to amplify feminist the- and has little to do with the mainstream of ory by articulating and fostering feminist academic practice and knowledge (or with disability theory. In naming feminist dis- themselves). This reductive notion that ability studies here as an academic field of identity studies are intellectual ghettos inquiry, I am sometimes describing work limited to a narrow constituency demand- that is already underway, some of which ing special pleading is the persistent obsta- explicitly addresses disability and some cle that both feminist theory and disability which gestures implicitly to the topic. At studies must surmount. other times, I am calling for study that Disability studies can benefit from femi- needs to be done to better illuminate feminist theory and feminist theory can benefit nist thought. In other words, this essay in from disability studies. Both feminism and part sets an agenda for future work in femi- disability studies are comparative and con- nist disability theory. Most fundamentally, current academic enterprises. Just as femi- though, the goal of feminist disability theo- nism has expanded the lexicon of what we ry, as I lay it out in this essay, is to augment imagine as womanly, has sought to under- the terms and confront the limits of the stand and destigmatize what we call the ways we understand human diversity, the subject position of woman, so has disability materiality of the body, multiculturalism, studies examined the identity disability in and the social formations that interpret the service of integrating disabled people bodily differences. The fundamental point INTEGRATING DISABILITY, TRANSFORMING FEMINIST THEORY | 335

I will make here is that integrating disability too is a pervasive, often unarticulated, ity as a category of analysis and a system ideology informing our cultural notions of representation deepens, expands, and of self and other (Playing in the Dark 19). challenges feminist theory. Disability—like gender—is a concept that Academic feminism is a complex and pervades all aspects of culture: its structur- contradictory matrix of theories, strate- ing institutions, social identities, cultural gies, pedagogies and practices. One way to practices, political positions, historical think about feminist theory is to say that it communities, and the shared human ex- investigates how culture saturates the par- perience of embodiment. ticularities of bodies with meanings and Integrating disability into feminist theo- probes the consequences of those mean- ry is generative, broadening our collective ings. Feminist theory is a collaborative, inquires, questioning our assumptions, and interdisciplinary inquiry and a self-con- contributing to feminism’s multicultural- scious cultural critique that interrogates ism. Introducing a disability analysis does how subjects are multiply interpellated: in not narrow the inquiry, limit the focus to other words, how the representational sys- only women with disabilities, or preclude tems of gender, race, ethnicity, ability, sex- engaging other manifestations of femi- uality, and class mutually produce, inflect, nisms. Indeed, the multiplicity of foci we and contradict one another. These systems now call feminisms is not a group of frag- intersect to produce and sustain ascribed, mented, competing subfields, but rather a achieved, and acquired identities, both vibrant, complex conversation. In talking those that claim us and those that we claim about “feminist disability theory,” I am not for ourselves. A feminist disability theory proposing yet another discrete “feminism,” introduces the ability/disability system as but suggesting instead some ways that a category of analysis into this diverse and thinking about disability transforms femi- diffuse enterprise. It aims to extend current nist theory. Integrating disability does not notions of cultural diversity and to more obscure our critical focus on the registers fully integrate the academy and the larger of race, sexuality, ethnicity, or gender, nor world it helps shape. is it additive (to use Gerda Lerner’s famous A feminist disability approach fosters idea). Rather, considering disability shifts more complex understandings of the cul- the conceptual framework to strengthen tural history of the body. By considering our understanding of how these multiple the ability/disability system, feminist dis- systems intertwine, redefine, and mutually ability theory goes beyond explicit disabil- constitute one another. Integrating disability topics such as illness, health, beauty, ity clarifies how this aggregate of systems genetics, eugenics, aging, reproductive operate together, yet distinctly, to support technologies, prosthetics, and access is- an imaginary norm and structure the rela- sues. Feminist disability theory addresses tions that grant power, privilege, and status such broad feminist concerns as the unity to that norm. Indeed, the cultural function of the category “woman,” the status of the of the disabled figure is to act as a synecdo- lived body, the politics of appearance, the che for all forms that culture deems non- medicalization of the body, the privilege normative. of normalcy, multiculturalism, sexuality, We need to study disability in a feminist the social construction of identity, and the context to direct our highly honed criti- commitment to integration. To borrow Toni cal skills toward the dual scholarly tasks Morrison’s notion that blackness is an idea of unmasking and reimagining disability, that permeates American culture, disabil- not only for people with disabilities but for 336 | ROSEMARIE GARLAND-THOMSON

everyone. As Simi Linton puts it, studying marking bodies. Although this comparison disability is “a prism through which one of bodies is ideological rather than biologi- can gain a broader understanding of soci- cal, it nevertheless penetrates into the for- ety and human experience” (1998, 118). It mation of culture, legitimating an unequal deepens the understanding of gender and distribution of resources, status, and pow- sexuality, individualism and equality, mi- er within a biased social and architectural nority group definitions, autonomy, whole- environment. As such, disability has four ness, independence, dependence, health, aspects: first, it is a system for interpreting physical appearance, aesthetics, the in- and disciplining bodily variations; second, tegrity of the body, community, and ideas it is a relationship between bodies and their of progress and perfection in every aspect environments; third, it is a set of practices of culture. A feminist disability theory in- that produce both the able-bodied and the troduces what Eve Sedgwick has called a disabled; fourth, it is a way of describing the “universalizing view” of disability that will inherent instability of the embodied self. replace an often persisting “minoritizing The disability system excludes the kinds view.” Such a view will cast disability as of bodily forms, functions, impairments, “an issue of continuing, determinative im- changes, or ambiguities that call into ques- portance in the lives of people across the tion our cultural fantasy of the body as a spectrum” (1990, 1). In other words, un- neutral, compliant instrument of some derstanding how disability operates as an transcendent will. Moreover, disability is a identity category and cultural concept will broad term within which cluster ideologi- enhance how we understand what it is to cal categories as varied as sick, deformed, be human, our relationships with one an- abnormal, crazy, ugly, old, feebleminded, other, and the experience of embodiment. maimed, afflicted, mad, or debilitated—all The constituency for a feminist disability of which disadvantage people by devaluing theory is all of us, not only women with bodies that do not conform to cultural stan- disabilities: disability is the most human of dards. Thus the disability system functions experiences, touching every family and—if to preserve and validate such privileged we live long enough—touching us all. designations as beautiful, healthy, normal, fit, competent, intelligent—all of which provide cultural capital to those who can THE ABILITY/DISABILITY SYSTEM claim such status, who can reside within Feminist disability theory’s radical critique these subject positions. It is, then, the vari- hinges on a broad understanding of dis- ous interactions between bodies and world ability as a pervasive cultural system that that materialize disability from the stuff of stigmatizes certain kinds of bodily varia- human variation and precariousness. tions. At the same time, this system has the A feminist disability theory denaturaliz- potential to incite a critical politics. The es disability by unseating the dominant as- informing premise of feminist disability sumption that disability is something that theory is that disability, like femaleness, is is wrong with someone. By this I mean, of not a natural state of corporeal inferiority, course, that it mobilizes feminism’s highly inadequacy, excess, or a stroke of misfor- developed and complex critique of gender, tune. Rather, disability is a culturally fab- class, race, ethnicity, and sexuality as ex- ricated narrative of the body, similar to clusionary and oppressive systems rather what we understand as the fictions of race than as the natural and appropriate order and gender. The disability/ability system of things. To do this, feminist disability produces subjects by differentiating and theory engages several of the fundamental INTEGRATING DISABILITY, TRANSFORMING FEMINIST THEORY | 337 premises of critical theory: 1) that represen- in a sexist society are physically handi- tation structures reality; 2) that the margins capped” (1990b, 153). Even the general define the center; 3) that gender (or disabil- American public associates femininity and ity) is a way of signifying relationships of disability. A recent study on stereotyping power; 4) that human identity is multiple showed that housewives, disabled people, and unstable; 5) that all analysis and evalu- blind people, so-called retarded people, ation have political implications. and the elderly were judged as being simi- In order to elaborate on these premises, larly incompetent. Such a study suggests I discuss here four fundamental and inter- that intensely normatively feminine posi- penetrating domains of feminist theory tions—such as a housewife—are aligned and suggest some of the kinds of critical with negative attitudes about people with inquiries that considering disability can disabilities (Fiske 2001).1 generate within these theoretical arenas. Recognizing how the concept of disabil- These domains are: 1) representation; 2) ity has been used to cast the form and func- the body; 3) identity; 4) activism. While I tioning of female bodies as non-normative have disentangled these domains here for can extend feminist critiques. Take, for the purposes of setting up a schematic or- example, the exploitation of Saartje Bart- ganization for my analysis, these domains mann, the African woman exhibited as a are, of course, not discrete in either con- freak in nineteenth-century Europe (Faus- cept or practice, but rather tend to be syn- to Sterling 1995; Gilman 1985). Known as chronous. the Hottentot Venus, Bartmann’s treatment has come to represent the most egregious form of racial and gendered degradation. REPRESENTATION What goes unremarked in studies of Bart- The first domain of feminist theory that mann’s display, however, is the ways that can be deepened by a disability analysis the language and assumptions of the abil- is representation. Western thought has ity/disability system were implemented to long conflated femaleness and disability, pathologize and exoticize Bartmann. Her understanding both as defective depar- display invoked disability by presenting as tures from a valued standard. Aristotle, for deformities or abnormalities the charac- example, defined women as “mutilated teristics that marked her as raced and gen- males.” Women, for Aristotle, have “im- dered. I am not suggesting that Bartmann proper form;” we are “monstrosit[ies]” was disabled, but rather that the concepts (1944, 27–8; 8–9). As what Nancy Tuana of disability discourse framed her presen- calls “misbegotten men,” women thus be- tation to the western eye. Using disability come the primal freaks in western history, as a category of analysis allows us to see envisioned as what we might now call con- that what was normative embodiment in genitally deformed as a result of their what her native context became abnormal to we might now term a genetic disability the western mind. More important, rather (1993, 18). More recently, feminist theo- than simply supposing that being labeled rists have argued that female embodiment as a freak is a slander, a disability analysis is a disabling condition in sexist culture. presses our critique further by challenging Iris Marion Young, for instance, examines the premise that unusual embodiment is how enforced feminine comportment de- inherently inferior. The feminist interroga- limits women’s sense of embodied agency, tion of gender since Simone de Beauvoir restricting them to “throwing like a girl” has revealed how women are assigned a (1990b, 141). Young asserts that, “Women cluster of ascriptions, like Aristotle’s, that 338 | ROSEMARIE GARLAND-THOMSON

mark us as Other. What is less widely rec- This illustration shows the language of defi- ognized, however, is that this collection of ciency and abnormality used to simultane- interrelated characterizations is precisely ously devalue women who depart from the the same set of supposed attributes affixed mandates of femininity by equating them to people with disabilities. with disabled bodies. Such an interpretive The gender, race, and ability systems move economically invokes the subjugating intertwine further in representing sub- effect of one oppressive system to deprecate jugated people as being pure body, unre- people marked by another system of repre- deemed by mind or spirit. This sentence sentation. of embodiment is conceived of as either Subjugated bodies are pictured as ei- a lack or an excess. Women, for example, ther deficient or as profligate. For instance, are considered castrated,—or to use Marge what Susan Bordo describes as the too- Piercy’s wonderful term—“penis-poor” muchness of women also haunts disability (1969). They are thought to be hysterical, or and racial discourses, marking subjugated to have overactive hormones. Women have bodies as ungovernable, intemperate, or been cast as alternately having insatiable threatening (1993). The historical figure of appetite in some eras and as pathologi- the monster, as well, invokes disability, of- cally self-denying in other times. Similarly, ten to serve racism and sexism. Although the disabled people supposedly have extra term has expanded to encompass all forms chromosomes or limb deficiencies. The of social and corporeal aberration, monster differences of disability are cast as atrophy, originally described people with congenital meaning degeneration, or hypertrophy, impairments. As departures from the nor- meaning enlargement. People with dis- matively human, monsters were seen as abilities are described as having aplasia, category violations or grotesque hybrids. meaning absence or failure of formation, or The semantics of monstrosity are recruited hypoplasia, meaning underdevelopment. to explain gender violations such as Julia All these terms police variation and refer- Pastrana, for example, the Mexican Indian ence a hidden norm from which the bodies “bearded woman,” whose body was dis- of people with disabilities and women are played in nineteenth-century freak shows imagined to depart. both during her lifetime and after her Female, disabled, and dark bodies are death. Pastrana’s live and later embalmed supposed to be dependent, incomplete, body spectacularly confused and trans- vulnerable, and incompetent bodies. gressed established cultural categories. Femininity and race are the performance Race, gender, disability, and sexuality aug- of disability. Women and the disabled are mented one another in Pastrana’s display portrayed as helpless, dependent, weak, to produce a spectacle of embodied oth- vulnerable, and incapable bodies. Women, erness that is simultaneously sensational, the disabled, and people of color are always sentimental, and pathological (Thomson ready occasions for the aggrandizement of 1999). Furthermore much current femi- benevolent rescuers, whether strong males, nist work theorizes figures of hybridity and distinguished doctors, abolitionists, or Jerry excess such as monsters, grotesques, and Lewis hosting his Telethons. For example, an cyborgs to suggest their transgressive po- 1885 medical illustration of a pathologically tential for a feminist politics (Haraway 1991; “love deficient” woman who fits the cultural Braidotti 1994; Russo 1994). However, this stereotype of the ugly woman or perhaps metaphorical invocation seldom acknowl- the lesbian suggests how sexuality and ap- edges that these figures often refer to the pearance slide into the terms of disability. actual bodies of people with disabilities. INTEGRATING DISABILITY, TRANSFORMING FEMINIST THEORY | 339

Erasing real disabled bodies from the his- involving the lived body. Perhaps because tory of these terms compromises the very women and the disabled are cultural signi- critique they intend to launch and misses fiers for the body, their actual bodies have an opportunity to use disability as a femi- been subjected relentlessly to what Michel nist critical category. Foucault calls “discipline” (1979). Together, Such representations ultimately portray the gender, race, ethnicity, sexuality, class, subjugated bodies not only as inadequate and ability systems exert tremendous social or unrestrained but at the same time as re- pressures to shape, regulate, and normal- dundant and expendable. Bodies marked ize subjugated bodies. Such disciplining is and selected by such systems are targeted enacted primarily through the two interre- for elimination by varying historical and lated cultural discourses of medicine and cross-cultural practices. Women, people appearance. with disabilities or appearance impair- Feminist disability theory offers a par- ments, ethnic others, gays and lesbians, ticularly trenchant analysis of the ways and people of color are variously the ob- that the female body has been medicalized jects of infanticide, selective abortion, eu- in modernity. As I have already suggested, genic programs, hate crimes, mercy killing, both women and the disabled have been assisted suicide, lynching, bride burning, imagined as medically abnormal—as the honor killings, forced conversion, coercive quintessential “sick” ones. Sickness is gen- rehabilitation, domestic violence, geno- dered feminine. This gendering of illness cide, normalizing surgical procedures, has entailed distinct consequences in ev- racial profiling, and neglect. All these dis- erything from epidemiology and diagnosis criminatory practices are legitimated by to prophylaxis and therapeutics. systems of representation, by collective Perhaps feminist disability theory’s most cultural stories that shape the material incisive critique is revealing the intersec- world, underwrite exclusionary attitudes, tions between the politics of appearance inform human relations, and mold our and the medicalization of subjugated bod- senses of who we are. Understanding how ies. Appearance norms have a long history disability functions along with other sys- in western culture, as is witnessed by the tems of representation clarifies how all the anthropometric composite figures of ideal systems intersect and mutually constitute male and female bodies made by Dudley one another. Sargent in 1893. The classical ideal was to be worshiped rather than imitated, but increasingly in modernity the ideal has mi- THE BODY grated to become the paradigm which is to The second domain of feminist theory that be attained. As many feminist critics have a disability analysis can illuminate is the pointed out, the standardization of the investigation of the body: its materiality, its female body that the beauty system man- politics, its lived experience, and its rela- dates has become a goal to be achieved tion to subjectivity and identity. Confront- through self-regulation and consumerism ing issues of representation is certainly (Wolf 1991; Haiken 1997). Feminist disabil- crucial to the cultural critique of feminist ity theory suggests that appearance and disability theory. But we should not focus health norms often have similar disciplin- exclusively on the discursive realm. What ary goals. For example, the body braces distinguishes a feminist disability theory developed in the 1930s to “correct” scolio- from other critical paradigms is that it scru- sis, discipline the body to conform to the tinizes a wide range of material practices dictates of both the gender and the ability 340 | ROSEMARIE GARLAND-THOMSON

systems by enforcing standardized female surgically erased to produce an unmarked form similarly to the nineteenth-century body. This visually unobtrusive body may corset, which, ironically, often disabled then pass unnoticed within the milieu of female bodies. Although both devices nor- anonymity that is the hallmark of social malize bodies, the brace is part of medical relations beyond the personal in moder- discourse while the corset is cast as a fash- nity. The point of aesthetic surgery, as well ion practice. as the costuming of power, is not to ap- Similarly, a feminist disability theory pear unique—or to “be yourself,” as the calls into question the separation of recon- ads endlessly promise—but rather not to structive and cosmetic surgery, recogniz- be conspicuous, not to look different. This ing their essentially normalizing function flight from the nonconforming body trans- as what Sander L. Gilman calls “aesthetic lates into individual efforts to look normal, surgery” (1998). Cosmetic surgery, driven neutral, unmarked, to not look disabled, by gender ideology and market forces, now queer, ugly, fat, ethnic, or raced. For ex- enforces feminine body standards and ample, beauty is set out comparatively and standardizes female bodies toward what supposedly self-evidently in an 1889 trea- I have called the “normate”—the corpo- tise called The New Physiogomy which jux- real incarnation of culture’s collective, un- taposed a white, upper-class English face marked, normative characteristics (1997, called “Princess Alexandra” with a stereo- 8). Cosmetic surgery’s twin, reconstructive typical face of an Irish immigrant, called surgery, eliminates disability and enforces “Sally Muggins” in a class and ethnic-based the ideals of what might be thought of as binary of apparently self-evident beauty the normalcy system. Both cosmetic and and ugliness. Beauty, then, dictates cor- reconstructive procedures commodify the poreal standards that create not distinc- body and parade mutilations as enhance- tion but utter conformity to a bland look ments that correct flaws so as to improve that is at the same time unachievable so the psychological well being of the patient. as to leash us to consumer practices that The conception of the body as what Susan promise to deliver such sameness. In the Bordo terms “cultural plastic” increasingly language of contemporary cosmetic sur- through surgical and medical interven- gery, the unreconstructed female body is tions pressures people with disabilities persistently cast as having abnormalities or appearance impairments to become that can be corrected by surgical proce- what Michel Foucault calls “docile bodies.” dures which supposedly improve one’s ap- (1993, 246; 1979, 135). The twin ideologies pearance by producing ostensibly natur al of normalcy and beauty posit female and looking noses, thighs, breasts, chins, and disabled bodies, particularly, as not only so on. Thus, our unmodified bodies are spectacles to be looked at, but as pliable presented as unnatural and abnormal bodies to be shaped infinitely so as to con- while the surgically altered bodies are por- form to a set of standards called “normal” trayed as normal and natural. The beautiful and “beautiful.” woman of the twenty-first century is Normal has inflected beautiful in mo- sculpted surgically from top to bottom, dernity. What is imagined as excess body generically neutral, all irregularities regu- fat, the effects of aging, marks of ethnicity larized, all particularities expunged. She such as “jewish” noses, bodily particulari- is thus non-disabled, deracialized, and ties thought of as blemishes or deformi- de-ethnicized. ties, and marks of history such as scarring In addition, the politics of prosthet- and impairments are now expected to be ics enters the purview of feminism when INTEGRATING DISABILITY, TRANSFORMING FEMINIST THEORY | 341 we consider the contested use of breast as well as the oppressive representational implants and prostheses for breast can- practices that make everyday erotic spec- cer survivors. The famous 1993 New York tacles of women’s breasts while erasing the Times cover photo of the fashion model, fact of the amputated breast. Matushka, baring her mastectomy scar or Feminist disability theory can press far Audre Lorde’s account of breast cancer in its critique of the pervasive will-to-normal- The Cancer Journals challenge the sexist as- ize the nonstandard body. Take two related sumption that the amputated breast must examples: first, the surgical separation of always pass for the normative, sexualized conjoined twins and, second, the surgical one either through concealment or pros- assignment of gender for the intersexed, thetics (1980). A vibrant feminist conversa- people with ambiguous genitalia and gen- tion has emerged about the politics of the der characteristics. Both these forms of surgically altered, the disabled, breast. Di- embodiment are regularly—if infrequent- ane Price Herndl challenges Audre Lorde’s ly—occurring, congenital bodily variations refusal of a breast prosthesis after mastec- that spectacularly violate sacred ideolo- tomy and Iris Marion Young’s classic essay gies of western culture. Conjoined twins “Breasted Experience” queries the cultural contradict our notion of the individual as meanings of breasts under the knife (2002; discrete and autonomous—actually, quite 1990a). similarly to the way pregnancy does. Inter- Another entanglement of appearance sexed infants challenge our insistence that and medicine involves the spectacle of biological gender is unequivocally binary. the female breast, both normative and So threatening to the order of things is the disabled. In January 2000, the San Fran- natural embodiment of conjoined twins cisco-based Breast Cancer Fund mounted and intersexed people that they are almost “Obsessed with Breasts,” a public aware- always surgically normalized through am- ness poster campaign showing women putation and mutilation immediately after boldly displaying mastectomy scars. The birth (Clark and Myser 1996; Dreger 1998a; posters parodied familiar commercial Kessler 1990; Fausto-Sterling 2000). Not in- media sites—a Calvin Klein perfume ad, a frequently, one conjoined twin is sacrificed Cosmopolitan magazine cover, and a Victo- to save the other from the supposed abnor- ria Secret catalog cover—that routinely pa- mality of their embodiment. Such mutila- rade women’s breasts as upscale soft porn. tions are justified as preventing suffering The posters replace the now unremarkable and creating well adjusted individuals. eroticized breast with the forbidden im- So intolerable is their insult to dominant age of the amputated breast. In doing so, ideologies about who patriarchal culture they disrupt the visual convention of the insists that we are that the testimonies of female breast as sexualized object for male adults with these forms of embodiment appropriation and pleasure. The posters who say that they do not want to be sep- thus produce a powerful visual violation by arated is routinely ignored in establish- exchanging the spectacle of the eroticized ing the rationale for “medical treatment.” breast, which has been desensationalized (Dreger 1998b). In truth, these procedures by its endless circulation, with the medi- benefit not the affected individuals, but calized image of the scarred breast, which rather they expunge the kinds of corporeal has been concealed from public view. The human variations that contradict the ide- Breast Cancer Fund used these remarkable ologies the dominant order depends upon images to challenge both sexism in medical to anchor truths it insists are unequivocally research and treatment for breast cancer encoded in bodies. 342 | ROSEMARIE GARLAND-THOMSON

I do not want to oversimplify here by cards. A 1950 card, for instance, urges its suggesting that women and disabled peo- recipient to “snap out of it.” Fusing racist, ple should not use modern medicine to sexist, and ablist discourses, the card re- improve their lives or help their bodies cruits the Mammy figure to insist on cure. function more fully. But the critical issues The stereotypical racist figure asks, “ Is you are complex and provocative. A feminist sick, Honey?” and then exhorts the recipi- disability theory should illuminate and ex- ent of her care to “jes hoodoo all dat illness plain, not become ideological policing or out o you.” set orthodoxy. The kinds of critical analyses The ideology of cure directed at dis- I’m discussing here offer a counter logic to abled people focuses on changing bodies the overdetermined cultural mandates to imagined as abnormal and dysfunctional comply with normal and beautiful at any rather than on exclusionary attitudinal, cost. The medical commitment to heal- environmental and economic barriers. ing, when coupled with modernity’s faith The emphasis on cure reduces the cultural in technology and interventions that con- tolerance for human variation and vul- trol outcomes, has increasingly shifted to- nerability by locating disability in bodies ward an aggressive intent to fix, regulate, or imagined as flawed rather than social sys- eradicate ostensibly deviant bodies. Such a tems in need of fixing. A feminist disability program of elimination has often been at studies would draw an important distinc- the expense of creating a more accessible tion between prevention and elimination. environment or providing better support Preventing illness, suffering, and injury is services for people with disabilities. The a humane social objective. Eliminating the privileging of medical technology over less range of unacceptable and devalued bodily ambitious programs such as rehabilitation forms and functions the dominant order has encouraged the cultural conviction calls disability is, on the other hand, a eu- that disability can be extirpated, inviting genic undertaking. The ostensibly progres- the belief that life with a disability is in- sive socio-medical project of eradicating tolerable. As charity campaigns and tele- disability all too often is enacted as a pro- thons repeatedly affirm, cure rather than gram to eliminate people with disabilities adjustment or accommodation is the over- through such practices as forced steriliza- determined cultural response to disabil- tion, so-called physician-assisted suicide ity (Longmore 1997). For instance, a 1949 and mercy killing, selective abortion, insti- March of Dimes poster shows an appealing tutionization, and segregation policies. little girl stepping out of her wheelchair A feminist disability theory extends its into the supposed redemption of walk- critique of the normalization of bodies ing: “Look, I Can Walk Again!” the text pro- and the medicalization of appearance to claims while at once charging the viewers challenge some widely held assumptions with the responsibility of assuring her fu- about reproductive issues as well. The culture ambulation. Nowhere do we find post- tural mandate to eliminate the variations ers suggesting that life as a wheelchair user in form and function that we think of as might be full and satisfying, as many peo- disabilities has undergirded the reproduc- ple who actually use them find their lives to tive practices of genetic testing and selec- be. This ideology of cure is not isolated in tive abortion (Saxton 1998; Parens and medical texts or charity campaigns, but in Asch 2000; Rapp 1999). Some disability fact permeates the entire cultural conver- activists argue that the “choice” to abort sation about disability and illness. Take, for fetuses with disabilities is a coercive form example, the discourse of cure in get well of genocide against the disabled (Hubbard INTEGRATING DISABILITY, TRANSFORMING FEMINIST THEORY | 343

1990). A more nuanced argument against physician-assisted suicide, as well, by ar- selective abortion comes from Adrienne guing that oppressive attitudes toward Asch and Gail Geller, who wish to preserve disability distort the possibility of unbi- a woman’s right to choose whether to bear ased free choice (Battin et al. 1998). The a child, but who at the same time object to practices of genetic and prenatal testing the ethics of selectively aborting a wanted as well as physician-administered eutha- fetus because it will become a person with nasia, then, become potentially eugenic a disability (1996). Asch and Geller coun- practices within the context of a culture ter the quality-of-life and prevention-of- deeply intolerant of disability. Both the suffering arguments so readily invoked to rhetoric and the enactment of this kind of justify selective abortion, as well as physi- disability discrimination create a hostile cian-assisted suicide, by pointing out that and exclusionary environment for people we cannot predict or—more precisely— with disabilities that perhaps exceeds the control in advance such equivocal human less virulent architectural barriers that states as happiness, suffering, or success. keep them out of the workforce and the Neither is any amount of prenatal engi- public sphere. neering going to produce the life that any Integrating disability into feminism’s of us desire and value. Indeed, both hu- conversation about the place of the body bris and a lack of imagination characterize in the equality and difference debates pro- the prejudicial and reductive assumption duces fresh insights as well. Whereas liber- that having a disability ruins lives. A vague al feminism emphasizes sameness, choice, notion of suffering and its potential de- and autonomy, cultural feminism critiques terrence drives much of the logic of elimi- the premises of liberalism. Out of cultural nation that rationalizes selective abortion feminism’s insistence on difference and its (Kittay 2000). Life chances and quality are positive interpretation of feminine culture simply far too contingent to justify prena- comes the affirmation of a feminist ethic of tal prediction. care. This ethic of care contends that care Similarly, genetic testing and applica- giving is a moral benefit for its practitioners tions of the Human Genome Project as and for humankind. A feminist disability the key to expunging disability are often studies complicates both the feminist eth- critiqued as enactments of eugenic ideol- ic of care and liberal feminism in regard to ogy, what the feminist biologist Evelyn Fox the politics of care and dependency. Keller calls a “eugenics of normalcy” (1992). A disability perspective nuances femi- The popular utopian notion that all forms nist theory’s consideration of the ethics of of disability can be eliminated through care by examining the power relations be- prophylactic manipulation of genetics tween the givers and receivers of care. Ani- will only serve to intensify the prejudice ta Silvers has argued strongly that being the against those who inevitably will acquire object of care precludes the equality that disabilities through aging and encounters a liberal democracy depends upon and with the environment. In the popular cel- undermines the claim to justice as equal- ebrations of the Human Genome Project ity that undergirds a civil rights approach as the quixotic pinnacle of technological used to counter discrimination (1995). progress, seldom do we hear a cautionary Eva Kittay, on the other hand, formulates logic about the eugenic implications of a “dependency critique of equality” (1999, this drive toward what Priscilla Wald calls 4), which asserts that the ideal of equal- “Future Perfect” (2000, 1). Disability schol- ity under liberalism repudiates the fact of ars have entered the debate over so-called human dependency, the need for mutual 344 | ROSEMARIE GARLAND-THOMSON

care, and the asymmetries of care relations. males who are young and meet the criteria Similarly, Barbara Hillyer has called atten- for attracting men. Depression, anorexia, tion to dependency in order to critique a and agoraphobia are female-dominant, liberal tendency in the rhetoric of disability psycho-physical disabilities that exagger- rights (1993). Disability itself demands that ate normative gendered roles. Feminine human interdependence and the universal cultural practices such as foot binding, cli- need for assistance be figured into our dia- torectomies, and corsetting, as well as their logues about rights and subjectivity. less hyperbolic costuming rituals such as stiletto high heels, girdles, and chastity belts—impair women’s bodies and restrict IDENTITY their physical agency, imposing disability The third domain of feminist theory that a on them. disability analysis complicates is identity. Banishment from femininity can be both Feminist theory has productively and rig- a liability and a benefit. Let me offer—with orously critiqued the identity category of some irony—an instructive example from woman, on which the entire feminist en- popular culture. Barbie, that cultural icon terprise seemed to rest. Feminism increas- of femininity, offers a disability analysis ingly recognizes that no woman is ever that clarifies both how multiple identity only a woman, that she occupies multiple and diversity are commodified and how subject positions and is claimed by several the commercial realm might offer politi- cultural identity categories (Spelman 1988). cally useful feminist counterimages. Per- This complication of woman compelled haps the measure of a group’s arrival into feminist theory to turn from an exclusively the mainstream of multiculturalism is to male/female focus to look more fully at the be represented in the Barbie pantheon. exclusionary, essentialist, oppressive, and While Barbie herself still identifies as able- binary aspects of the category woman it- bodied—despite her severely deformed self. Disability is one such identity vector body—we now have several incarnations that disrupts the unity of the classification of Barbie’s “friend,” Share-A-Smile Becky. woman and challenges the primacy of gen- One Becky uses a cool hot pink wheelchair; der as a monolithic category. another is Paralympic Champion Becky, Disabled women are, of course, a marked brought out for the 2000 Sydney Olympics and excluded—albeit quite varied—group in a chic red-white-and-blue warm-up within the larger social class of women. suit with matching chair. Most interesting The relative privileges of normative femi- however is Becky, the school photogra- ninity are often denied to disabled women pher, clad in a preppy outfit, complete with (Fine and Asch 1988). Cultural stereotypes camera and red high-top sneakers. As she imagine disabled women as asexual, unfit perkily gazes at an alluring Barbie in her to reproduce, overly dependent, unattract- camera’s viewfinder, this Becky may be the ive—as generally removed from the sphere incarnation of what one scholar has called of true womanhood and feminine beauty. “Barbie’s queer assessories” (Rand 1995). Women with disabilities must often strug- A disabled, queer Becky is certainly a gle to have their sexuality and rights to bear provocative and subversive fusion of stig- children recognized (Finger 1990). Disabil- matized identities, but more important is ity thus both intensifies and attenuates that Becky challenges notions of normal- the cultural scripts of femininity. Aging is a cy in feminist ways. The disabled Becky, form of disablement that disqualifies older for example, wears comfortable clothes: women from the limited power allotted fe- pants with elastic-waists no doubt, sensi- INTEGRATING DISABILITY, TRANSFORMING FEMINIST THEORY | 345 ble shoes, and roomy shirts. Becky is also out sexuality. This confirmation of norma- one of the few dolls who has flat feet and tive heterosexuality was then for Stohl no legs that bend at the knee. The disabled Butlerian parody, but rather was the affir- Becky is dressed and poised for agency, mation she needed as a disabled woman to action, and creative engagement with the be sexual at all. world. In contrast, the prototypical Bar- Ellen Stohl’s presentation by way of the bie performs excessive femininity in her sexist conventions of the porn magazine restrictive sequined gowns, crowns, and illuminates the relation between identity push-up bras. So while Becky implies on and the body, an aspect of subject for- the one hand that disabled girls are purged mation that disability analysis can offer. from the feminine economy, on the other Although binary identities are conferred hand Becky also suggests that disabled from outside through social relations, these girls might be liberated from those oppres- identities are nevertheless inscribed on the sive and debilitating scripts. The last word body as either manifest or incipient visual on Barbies comes from a disability activist traces. Identity’s social meaning turns on who quipped that he’d like to outfit a dis- this play of visibility. The photos of Stohl in abled doll with a power wheelchair chair Playboy both refuse and insist on marking and a briefcase to make her a civil rights her impairment. The centerfold spread—so lawyer who enforces the Americans with to speak—of Stohl nude and masturbating Disabilities Act. He wants to call her “Sue- erases her impairment to conform to the Your-Ass-Becky.”2 I think she’d make a very sexualized conventions of the centerfold. good role model. This photo expunges her wheelchair and The paradox of Barbie and Becky, of any other visual clues to her impairment. course, is that the ultra-feminized Barbie In other words, to avoid the cultural con- is a target for sexual appropriation both tradiction of a sexual disabled woman, the by men and beauty practices while the pornographic photos must offer up Stohl disabled Becky escapes such sexual ob- as visually nondisabled. But to appeal to jectification at the potential cost of losing the cultural narrative of overcoming dis- her sense of identity as a feminine sexual ability that sells so well, seems novel, and being. Some disabled women negotiate capitalizes on sentimental interest, Stohl this possible identity crisis by developing must be visually dramatized as disabled at alternate sexualities, such as lesbianism the same time. So Playboy includes several (Brownsworth and Raffo 1999). However, shots of Stohl that mark her as disabled by what Harlan Hahn calls the “asexual objec- picturing her in her wheelchair, entirely tification” of people with disabilities com- without the typical porn conventions. In plicates the feminist critique of normative fact, the photos of her using her wheelchair sexual objectification (1988). Consider the invoke the asexual poster child. Thus, the 1987 Playboy magazine photos of the para- affirmation of Stohl’s sexuality she sought plegic actress Ellen Stohl. After becoming by posing nude in the porn magazine came disabled, Stohl wrote to editor Hugh Hef- at the expense of denying through the pow- ner that she wanted to pose nude for Play- erful visual register her identity as a woman boy because “sexuality is the hardest thing with a disability, even while she attempted for disabled persons to hold onto.” (“Meet to claim that identity textually. Ellen Stohl,” 68.) For Stohl, it would seem Another aspect of subject formation that the performance of excessive feminine that disability confirms is that identity is sexuality was necessary to counter the so- always in transition. Disability reminds us cial interpretation that disability cancels that the body is, as Denise Riley asserts, 346 | ROSEMARIE GARLAND-THOMSON

“an unsteady mark, scarred in its long de- of knowledge might be produced through cay” (Riley 1999, 224). As Caroline Walker having a body radically marked by its own Bynum’s intriguing work on werewolf nar- particularity, a body that materializes at ratives suggests, the body is in a perpetual the ends of the curve of human variation. state of transformation (1999). Caring for For example, an alternative epistemol- her father for over twenty years of Alzheim- ogy that emerges from the lived experi- er’s disease prompted Bynum to investigate ence of disability is nicely summed up in how we can understand individual identity Nancy Mairs’ book title, Waist High in the as continuous even though both body and World, which she irreverently considered mind can and do change dramatically, cer- calling “cock high in the world.” What per- tainly over a lifetime and sometimes quite spectives or politics arise from encoun- suddenly. Disability invites us to query tering the world from such an atypical what the continuity of the self might de- position? Perhaps Mairs’ epistemology can pend upon if the body perpetually meta- offer us a critical positionality called sit- morphoses. We envision our racial, gender, point theory, a neologism I can offer that or ethnic identities as tethered to bodily interrogates the ableist assumptions un- traits that are relatively secure. Disability derlying the notion of standpoint theory and sexual identity, however, seem more (Harstock 1983). fluid, although sexual mutability is imag- Our collective cultural consciousness ined as elective where disability is seldom emphatically denies the knowledge of bodi- conceived of as a choice. Disability is an ly vulnerability, contingency, and mortality. identity category that anyone can enter Disability insists otherwise, contradicting at any time, and we will all join it if we live such phallic ideology. I would argue that long enough. As such, disability reveals the disability is perhaps the essential charac- essential dynamism of identity. Thus, dis- teristic of being human. The body is dy- ability attenuates the cherished cultural namic, constantly interactive with history belief that the body is the unchanging an- and environment. We evolve into disability. chor of identity. Moreover, it undermines Our bodies need care; we all need assis- our fantasies of stable, enduring identities tance to live. An equality model of feminist in ways that may illuminate the fluidity of theory sometimes prizes individualistic all identity. autonomy as the key to women’s libera- Disability’s clarification of the body’s tion. A feminist disability theory, however, corporeal truths suggests as well that the suggests that we are better off learning to body/self materializes—in Judith Butler’s individually and collectively accommodate sense—not so much through discourse, the body’s limits and evolutions than trying but through history (1993). The self ma- to eliminate or deny them. terializes in response to an embodied Identity formation is at the center of engagement with its environment, both feminist theory. Disability can complicate social and concrete. The disabled body is feminist theory often quite succinctly by in- a body whose variations or transforma- voking established theoretical paradigms. tions have rendered it out of sync with its This kind of theoretical intertextuality in- environment, both the physical and the flects familiar feminist concepts with new attitudinal environments. In other words, resonance. Let me offer several examples: the body becomes disabled when it is in- the idea of “compulsory ablebodiedness,” congruent both in space and the milieu of which Robert McRuer has coined, extends expectations. Furthermore, a feminist dis- Adrienne Rich’s famous analysis of “com- ability theory presses us to ask what kinds pulsory heterosexuality” (2001, 1986). Joan INTEGRATING DISABILITY, TRANSFORMING FEMINIST THEORY | 347

Wallach Scott’s germinal work on gender is aides, guide dogs, white canes, or empty recruited when we discuss disability as “a sleeves could ever have been closeted. useful category of analysis” (1988, 1). The Passing as nondisabled complicates feminist elaboration of the gender system ethnic and queer studies’ analyses of how informs my use of the disability system. this seductive but psychically estranging Lennard Davis suggests that the term nor- access to privilege operates. Some of my malcy studies supplant the name disabil- friends, for example, have measured their ity studies, in the way that gender studies regard for me by saying, “But I don’t think sometimes succeeds feminism (1995). The of you as disabled.” What they point to in oft invoked distinction between sex and such a compliment is the contradiction gender clarifies a differentiation between they find between their perception of me impairment and disability, even though as a valuable, capable, lovable person and both binaries are fraught. The concept the cultural figure of the disabled person of performing disability, cites (as it were) whom they take to be precisely my oppo- Judith Butler’s vigorous critique of essen- site: worthless, incapable, and unlovable. tialism (1990). Reading disabled bodies as People with disabilities themselves rou- exemplary instances of “docile bodies” in- tinely announce that they don’t consider vokes Foucault (1979). To suggest that iden- themselves as disabled. Although they are tity is lodged in the body, I propose that the often repudiating the literal meaning of the body haunts the subject, alluding to Susan word disabled, their words nevertheless Bordo’s notion regarding masculinity that serve to disassociate them from the identi- “the penis haunts the phallus” (1994, 1). ty group of the disabled. Our culture offers My own work has complicated the famil- profound disincentives and few rewards iar discourse of the gaze to theorize what to identifying as disabled. The trouble, of I call the stare, which I argue produces discourse, with such statements is that they ability identity. Such theoretical shorthand leave intact without challenge the oppres- impels us to reconsider the ways that iden- sive stereotypes that permit, among other tity categories cut across and redefine one things, the unexamined use of disability another, pressuring both the terms woman terms such as crippled, lame, dumb, idiot, and disabled. moron as verbal gestures of derision. The A feminist disability theory can also refusal to claim disability identity is in part highlight intersections and convergences due to a lack of ways to understand or talk with other identity-based critical perspec- about disability that are not oppressive. tives such as queer and ethnic studies. People with disabilities and those who Disability coming-out stories, for exam- care about them flee from the language ple, borrow from gay and lesbian identity of crippled or deformed and have no other narratives to expose what previously was alternatives. Yet, the civil rights movement hidden, privatized, medicalized in order and the accompanying Black-is-beauti- to enter into a political community. The ful identity politics have generally shown politicized sphere into which many schol- white culture what is problematic with ars come out is feminist disability studies, saying to Black friends, “I don’t think of you which enables critique, claims disabil- as Black.” Nonetheless, by disavowing dis- ity identity, and creates affirming counter ability identity, many of us learned to save narratives. Disability coming-out narra- ourselves from devaluation by a complicity tives raise questions about the body’s role that perpetuates oppressive notions about in identity by asking how markers so con- ostensibly “real” disabled people. Thus, spicuous as crutches, wheelchairs, hearing together we help make the alternately 348 | ROSEMARIE GARLAND-THOMSON

menacing and pathetic cultural figures sphere, introducing some interesting com- who rattle tin cups or rave on street cor- plications into her notion of resymboliza- ners, ones we with impairments often flee tion. from more surely than those who imagine Images of disabled fashion models in the themselves as nondisabled. media can shake up established categories and expectations. Because commercial visual media are the most widespread and ACTIVISM commanding source of images in modern, The final domain of feminist theory that image-saturated culture, they have great a disability analysis expands is activism. potential for shaping public conscious- There are many arenas of what can be seen ness—as feminist cultural critics are well as feminist disability activism: marches, aware. Fashion imagery is the visual dis- protests, the Breast Cancer Fund poster tillation of the normative, gilded with the campaign I discussed above, action groups chic and the luxurious to render it desir- such as the Intersex Society of North Amer- able. The commercial sphere is completely ica (ISNA), and Not Dead Yet, who oppose amoral, driven as it is by the single logic physician-assisted suicide, or the Ameri- of the bottom line. As we know, it sweeps can Disabled for Accessible Public Transit through culture seizing with alarming (ADAPT). What counts as activism cuts a neutrality anything it senses will sell. This wide swath through U.S. society and the value-free aspect of advertising produces a academy. I want to suggest here two un- kind of pliable potency that sometimes can likely, even quirky, cultural practices that yield unexpected results. function in activist ways but are seldom Take, for example, a shot from the considered as potentially transformative. monthly fashion feature in WE Magazine, One practice is disabled fashion modeling a Cosmopolitan knock-off targeted toward and the other is academic tolerance. Both the disabled consumer market. In this con- are different genres of activism from the ventional, stylized, high fashion shot, a typ- more traditional marching-on-Washington ical female model—slender, white, blond, or chaining-yourself-to-a-bus modes. Both clad in a black evening gown—is accom- are less theatrical, but perhaps fresher and panied by her service dog. My argument more interestingly controversial ways to is that public images such as this are radi- change the social landscape and to pro- cal because they fuse two previously anti- mote equality, which I take to be the goal thetical visual discourses—the chic high of activism. fashion shot and the earnest charity cam- The theologian and sociologist, Nancy paign. Public representations of disability Eiesland, has argued that in addition to have traditionally been contained within legislative, economic, and social changes, the conventions of sentimental charity im- achieving equality for people with disabili- ages, exotic freak show portraits, medical ties depends upon cultural “resymboliza- illustrations, or sensational and forbidden tion” (1994, 98). Eiesland asserts that the pictures. Indeed, people with disabilities way we imagine disability and disabled have been excluded most fully from the people must shift in order for real social dominant, public world of the marketplace. change to occur. Whereas Eiesland’s work Before the civil rights initiatives of the mid- resymbolizes our conceptions of dis- twentieth century began to transform the ability in religious iconography, my own public architectural and institutional envi- examinations of disabled fashion models ronment, disabled people were segregated do similar cultural work in the popular to the private and the medical spheres. INTEGRATING DISABILITY, TRANSFORMING FEMINIST THEORY | 349

Until recently, the only available public to the level of gesture, subordinated to image of a woman with a service dog that the overall normativity of the models’ ap- shaped the public imagination was street- pearance. Thus, commercial visual media corner beggar or a charity poster. By juxta- cast disabled consumers as simply one of posing the elite body of a visually normative many variations that compose the market fashion model with the mark of disabil- to which they appeal. Such routinization ity, this image shakes up our assumptions of disability imagery—however stylized about the normal and the abnormal, the and unrealistic it may be—nevertheless public and the private, the chic and the brings disability as a human experience desolate, the compelling and the repelling. out of the closet and into the normative Introducing a service dog—a standard prop public sphere. Images of disabled fashion of indigents and poster children—into the models enable people with disabilities, es- conventional composition of an upscale pecially those who acquire impairments fashion photo forces the viewer to recon- as adults, to imagine themselves as a part figure assumptions about what constitutes of the ordinary, albeit consumerist, world the attractive and the desirable. rather than as in a special class of excluded I am arguing that the emergence of dis- untouchables and unviewables. Images of abled fashion models is inadvertent ac- impairment as a familiar, even mundane, tivism without any legitimate agent for experience in the lives of seemingly suc- positive social change. Their appearance is cessful, happy, well-adjusted people can simply a result of market forces. This both reduce the identifying against oneself that troubling and empowering form of entry is the overwhelming effect of oppressive into democratic capitalism produces a and discriminatory attitudes toward peo- kind of instrumental form of equality: the ple with disabilities. Such images, then, freedom to be appropriated by consumer are at once liberatory and oppressive. They culture. In a democracy, to reject this para- do the cultural work of integrating a previ- doxical liberty is one thing; not to be grant- ously excluded group into the dominant ed it is another. Ever straining for novelty order—for better or worse—much like the and capitalizing on titillation, the fashion inclusion of women in the military. advertising world promptly appropriated This form of popular resymbolization the power of disabled figures to provoke produces counterimages that have activ- responses. Diversity appeals to an up- ist potential. A clearer example of disabil- scale liberal sensibility these days, making ity activism might be Aimee Mullins, who consumers feel good about buying from is a fashion model, celebrity, champion companies that are charitable toward the runner, a Georgetown University student, traditionally disadvantaged. More impor- and double amputee. Mullins was also one tant, the disability market is burgeoning. At of People Magazine’s 50 Most Beautiful 54 million people and growing fast as the people of 1999. An icon of disability pride baby boomers age, their spending power and equality, Mullins exposes—in fact calls was estimated to have reached the trillion- attention to—the mark of her disability in dollar mark in 2000 (Williams 1999). most photos, refusing to normalize or hide For the most part, commercial advertis- her disability in order to pass for nondis- ing that features disabled models are pre- abled. Indeed, her public version of her ca- sented the same as nondisabled models, reer is that her disability has been a benefit: simply because all models look essentially she has several sets of legs, both cosmetic the same. The physical markings of gender, and functional, and so is able to choose race, ethnicity, and disability are muted how tall she wants to be. Photographed in 350 | ROSEMARIE GARLAND-THOMSON

her prosthetic legs, she embodies the sexu- for male gratification. On the other hand, alized jock look that demands women be these images imply that the same capitalist both slender and fit. In her cosmetic legs, system in its drive to harvest new markets she captures the look of the high fashion can produce politically progressive coun- beauty in the controversial shoot by Nick ter images and counternarratives, however Knight called “Accessible,” showcasing out- fraught they may be in their entanglement fits created by designers such as Alexander with consumer culture. Images of disabled McQueen. But this is high fashion with a fashion models are both complicit and difference. In the jock shot her functional critical of the beauty system that oppresses legs are brazenly displayed, and even in the all women. Nevertheless, they suggest that voguishly costumed shot, the knee joints of consumer culture can provide the raw ma- her artificial legs are exposed. Never is there terial for its own critique. an attempt to disguise her prosthetic legs; The concluding version of activism I rather the entire photos thematically echo offer is less controversial and more subtle her prostheses and render the whole im- than glitzy fashion spreads. It is what I age chic. Mullins’ prosthetic legs—wheth- call academic activism—the activism of er cosmetic or functional—parody, indeed integrating education—in the very broad- proudly mock, the fantasy of the perfect est sense of that term. The academy is no body that is the mark of fashion, even while ivory tower but rather it is the grass roots the rest of her body conforms precisely to of the educational enterprise. Scholars and fashion’s impossible standards. So rather teachers shape the communal knowledge than concealing, normalizing, or erasing and the archive that is disseminated from disability, these photos use the hyperbole kindergarten to the university. Academic and stigmata traditionally associated with activism is most self-consciously vibrant disability to quench postmodernity’s per- in the aggregate of interdisciplinary iden- petual search for the new and arresting im- tity studies—of which women’s studies is age. Such a narrative of advantage works exemplary—that strive to expose the work- against oppressive narratives and practic- ings of oppression, examine subject for- es usually invoked about disabilities. First, mation, and offer counter-narratives for Mullins counters the insistent narrative subjugated groups. Their cultural work is that one must overcome an impairment building an archive through historical and rather than incorporating it into one’s life textual retrieval, canon reformation, role and self, even perhaps as a benefit. Second, modeling, mentoring, curricular reform, Mullins counters the practice of passing and course and program development. for non-disabled that people with disabili- A specific form of feminist academic ties are often obliged to enact in the pub- activism I elaborate here can be deepened lic sphere. So Mullins uses her conformity through the complication of a disability with beauty standards to assert her disabil- analysis. I call it the methodology of intel- ity’s violation of those very standards. As lectual tolerance. By this I don’t mean toler- legless and beautiful, she is an embodied ance in the more usual sense of tolerating paradox, asserting an inherently disruptive each other—although that would be useful potential. as well. What I mean is the intellectual posi- What my analysis of these images re- tion of tolerating what has previously been veals is that feminist cultural critiques are thought of as incoherence. As feminism complex. On the one hand, feminists have has embraced the paradoxes that have rightly unmasked consumer capitalism’s emerged from its challenge to the gender appropriation of women as sexual objects system, it has not collapsed into chaos, but INTEGRATING DISABILITY, TRANSFORMING FEMINIST THEORY | 351 rather it developed a methodology that tol- sexuality, and class: to understand how dis- erates internal conflict and contradiction. ability operates is to understand what it is This method asks difficult questions, but to be fully human. accepts provisional answers. This method recognizes the power of identity at the same NOTES time that it reveals identity as a fiction. This method both seeks equality, and it claims 1. Interestingly, in Fiske’s study, feminists, busi- nesswomen, Asians, Northerners, and Black difference. This method allows us to teach professionals were stereotyped as highly with authority at the same time that we re- competent, thus envied. In addition to having ject notions of pedagogical mastery. This very low competence, housewives, disabled method establishes institutional presences people, blind people, so-called retarded even while it acknowledges the limitations people, and the elderly were rated as warm, thus pitied. of institutions. This method validates the 2. Personal conversation with Paul Longmore, San personal but implements disinterested in- Francisco, CA, June 2000. quiry. This method both writes new stories and recovers traditional ones. Considering WORKS CITED disability as a vector of identity that intersects gender is one more internal challenge Americans with Disabilities Act of 1990. Retrieved 15 that threatens the coherence of woman, of August 2002, from http://www.usdoj.gov/crt/ada/ pubs/ada.txt. course. But feminism can accommodate Aristotle. 1944. Generation of Animals. Trans. A.L. such complication and the contradictions Peck. Cambridge: Harvard UP. it cultivates. 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Unspeakable Offenses: Untangling Race and Disability in Discourses of Intersectionality Nirmala Erevelles and Andrea Minear

The Literature of Critical Race Feminist was shot to death while resisting eviction Theory approaches disability as an expres- from her apartment in the Bronx. She was sion of intersectional identity wherein $98.85, or one month, behind in her rent. devalued social characteristics compound New York City mayor Ed Koch and police stigma resulting in so-called spirit murder. commissioner Benjamin Ward described the struggle preceding her demise as involving Three diverging practices of intersection- two officers with plastic shields, one officer ality are identified as guiding scholarship with a restraining hook, another officer with a on the constitutive features of multiply shotgun, and at least one supervising officer. minoritizing identities: (1) anticategorical All the officers also carried service revolvers. frameworks that insist on race, class, and According to Commissioner Ward, during gender as social constructs/fictions; (2) the course of the attempted eviction Eleanor intracategorical frameworks that critique Bumpurs escaped from the restraining hook merely additive approaches to differences twice and wielded a knife that Commissioner as layered stigmas; and (3) constitutive Ward said was “bent” on one of the plastic frameworks that describe the structural shields. At some point, Officer Stephen Sul- conditions within which social categories livan, the officer positioned furthest away from her aimed and fired his shotgun. It is in the above models are constructed by alleged that the blast removed half of her (and intermesh with) each other in specific hand so that, according to the Bronx district historical contexts. In being true to Critical attorney’s office, “it was anatomically impos- Race Feminist Theory approaches, the arti- sible for her to hold the knife.” The officer cle draws on two other narratives, one his- pumped his gun and shot again, making his torical and one contemporary, to describe mark completely the second time around. how individuals located perilously at the (Williams, 271) intersections of race, class, gender, and disability are constituted as non-citizens and In her essay, “Spirit Murdering the Mes- (no)bodies by the very social institutions senger,” Critical Race Feminist (CRF) Patri- (legal, educational, and rehabilitational) cia Williams describes the brutal murder of that are designed to protect, nurture, and a poor, elderly, overweight, disabled, black empower them. woman by several heavily armed police officers. Trapped at the intersections of On October 29, 1984, Eleanor Bumpurs, a 270 multiple oppressive contexts, Eleanor pound, arthritic, sixty-seven year old woman Bumpurs’s tattered body was quite literally UNSPEAKABLE OFFENSES | 355 torn apart by her multiple selves—being ter of eviction (class) was murderous rage? raced, classed, gendered, and disabled. And did our socially sanctioned fears of the In the essay, Williams reads this murder mentally ill and our social devaluation of as an unambiguous example of “racism disabled (arthritic and elderly) bodies of [experienced] as . . . an offense so painful color justify the volley of shots fired almost and assaultive as to constitute . . . ‘spirit instinctively to protect the public from the murder’” (230). Toward the end of the deviant, the dangerous, and the disposa- essay Williams struggles to fathom why the ble? We, therefore, argue that in the violent officer who fired the fatal shots saw such annihilation of Eleanor Bumpurs’s being, an “‘immediate threat and endangerment disability as it intersects with race, class, to life’. . . . [that he] could not allay his need and gender served more than just a “con- to kill a sick old lady fighting off halluci- text” or “magnifier” to analyze the oppres- nations with a knife” (234). In this quote, sive conditions that caused this murder. Williams recognizes Eleanor Bumpurs’s In this article, we demonstrate how the disability when invoking her arthritis and omission of disability as a critical category possible mental illness. However, Williams in discussions of intersectionality has disas- deploys disability merely as a descriptor, a trous and sometimes deadly consequences difference that is a matter of “magnitude” for disabled people of color caught at the or “context,” what another CRF scholar, violent interstices of multiple differences. Angela Harris, has described as “nuance In the first section, we will theorize inter- theory” (14). According to Harris, “nuance sectionality as first proposed by Crenshaw theory constitutes black women’s oppres- and explore the different ways in which it sion as only an intensified example of can be utilized by both Critical Race The- (white) women’s oppression” and is there- ory and Disability Studies to analyze the fore used as the “ultimate example of how experiences of people located at the inter- bad things [really] are” for all women (15). stices of multiple differences. Next, true to While we agree with the critique of CRT tradition, we draw on two other nar- nuance theory in feminist analyses that ratives, one historical and one contempo- ignore the real experiences of black women, rary, to describe how individuals located we argue that CRF scholars deploy a simi- perilously at the interstices of race, class, lar analytical tactic through their uncon- gender, and disability are constituted as scious non-analysis of disability as it inter- non-citizens and (no) bodies by the very sects with race, class, and gender oppres- social institutions (legal, educational, and sion. Disability, like race, offers not just a rehabilitational) that are designed to pro- “nuance” to any analysis of difference. For tect, nurture, and empower them. example, one could argue that the outrage emanating from a heaving, black body INTERSECTIONALITY AT THE wielding a knife sent a nervous (and racist) CROSSROADS: THEORIZING police officer into panic when confronted MULTIPLICATIVE DIFFERENCES by his own racialized terror of otherness. But what about the other ideological ter- With the deconstruction of essentialism, rors that loomed large in this encounter? the challenge of how to theorize identity Could the perception of Eleanor Bumpurs in all its complex multiplicity has preoccu- as a dangerous, obese, irrational, black pied feminist scholars of color.1 Kimberle woman also have contributed to her con- Crenshaw, one of the key proponents of the struction as criminally “insane” (disability) theory of intersectionality, has argued that because her reaction to a “mere” legal mat- “many of the experiences black women face 356 | NIRMALA EREVELLES AND ANDREA MINEAR

are not subsumed within the traditional one another . . .” (63). CRF Adrien Wing boundaries of race or gender oppression writes: as these boundaries are currently understood” (358). Part of the problem of “rely- We, as black women, can no longer afford to think of ourselves as merely the sum of sepa- ing on a static and singular notion of being rate parts that can be added together or sub- or of identity” (Pastrana, 75) is that the sin- tracted from, until a white male or female gle characteristic that is foregrounded (e.g. stands before you. The actuality of our expe- female or black) is expected to explain all rience is multiplicative. Multiply each of my of the other life experiences of the individ- parts together, WE X WE X WE X WE X I, and ual or the group. Additionally, Crenshaw you have one indivisible being. If you divide points out that social movements based on one of these parts from one you still have one. a single identity politics (e.g. the Feminist (31) Movement, Black Power Movement, GLBT and the Disability Rights Movement) have But this is all much easier said than done. historically conflated or ignored intra- Attempts to deploy intersectionality as an group differences and this has sometimes analytical tool in academic research have resulted in growing tensions between the taken on different forms with varying ana- social movements themselves. lytical outcomes—some more useful than Feminists of color have, therefore, had others. McCall, in an overview of how inter- the difficult task of attempting to theorize sectionality has been utilized in women oppression faced at the multiple fronts of studies’ scholarship, has identified three race, class, gender, sexuality, and disabil- different modes of theorizing intersection- ity.2 Thus, if one is poor, black, elderly, dis- ality. The first mode uses an anticategorical abled, and lesbian, must these differences framework based on the poststructuralist be organized into a hierarchy such that argument that social categories like race, some differences gain prominence over gender, sexuality, and disability are merely others? What if some differences coalesce social constructions/fictions. CRF scholars to create a more abject form of oppres- are, however, unwilling to completely do sion (e.g. being poor, black, and disabled) away with the social categories that consti- or if some differences support both privi- tute identity in the first place. As Crenshaw lege/invisibility within the same oppressed explains: community (e.g. being black, wealthy, and gay)? What happens if we use “race” as a To say that a category such as race and gender stable register of oppression against which is socially constructed is not to say that the category has no significance in our world. On other discriminations gain validity through the contrary, a large and continuing project their similarity and difference from that for subordinated people . . . is thinking about register? (Arondekar). the way in which power is clustered around In the face of this theoretical challenge, certain categories and is exercised against intersectionality has been set up as the others. most appropriate analytical intervention (375) expected to accomplish the formidable task of mediating multiple differences. As a result, feminists of color are more apt For example, Patricia Hill Collins writes to use an intracategorical framework that that “[a]s opposed to examining gender, focuses on “particular social groups at race, class, and nation as separate systems neglected points of intersection of multi- of oppression, intersectionality explores ple master categories” (McCall, 1780). As how these systems mutually construct Crenshaw explains: UNSPEAKABLE OFFENSES | 357

[I]ntersectionality provides a basis for recon- the intercategorical framework. Yuval- ceptualizing race as a coalition between Davis explains: men and women of color . . . Intersectional- ity may provide the means for dealing with The point of intersectional analysis is not to other marginalizations as well. For example, find “several identities under one”. . . . This race can also be a coalition of straight and would reinscribe the fragmented, additive gay people of color, and thus serve as a basis model of oppression and essentialize spe- for critique of churches and other cultural cific social identities. Instead the point is to institutions that reproduce heterosexism. analyse the differential ways by which social (377) divisions are concretely enmeshed and constructed by each other and how they relate The intracategorical framework is espe- to political and subjective constructions of cially promising to CRF scholars because it identities. validates the reality of racism as it intersects (205) with sexism and other social categories of difference (e.g. heterosexism; classism) in Therefore, rather than merely adding disa- the everyday lives of women of color. How- bility to nuance an intersectional analysis, ever, Yuval-Davis, while producing a list of we will foreground the historical contexts possible differences (potentially incom- and structural conditions within which the plete) that includes “‘race’/skin color; eth- identity categories of race and disability nicity; nation/state; class, culture; ability; intersect. age; sedentariness/origin; wealth; North- South; religion, stage of social develop- POINTS OF CONTACT: AT THE ment” (202), asks if it is even conceivable INTERSECTION OF CRT AND DIS- to address all these possible social catego- ABILITY STUDIES ries intersecting with a common master category (e.g. race or gender) at any given In educational contexts, the association time? Do some differences acquire greater of race with disability has resulted in large prominence than others (e.g. sexuality)? numbers of students of color (particularly Are some “other” differences just added African American and Latino males) being on to merely complicate and “nuance” this subjected to segregation in so-called spe- intersectional analysis (e.g. disability)? cial-education classrooms through sorting If the intracategorical framework rejects practices such as tracking and/or through merely tacking on another difference to labels such as mild mental retardation its litany of categories (e.g. disability), it and/or emotional disturbance.3 The PBS would have to, in effect, reject the addi- film, Beyond Brown: Pursuing the Prom- tive approach to multiple differences ise (Haddad, Readdean, & Valadez) sub- and instead utilize what Yuval-Davis has stantiates these claims with the following described as the constitutive approach to statistics. multiple differences. This approach, while foregrounding the actual experiences of • Black children constitute 17 percent women of color at the intersection of mul- of the total school enrollment, but 33 tiple social categories, also describes the percent of those labeled “mentally structural conditions within which these retarded.” social categories are constructed by, and • During the 1998–1999 school year intermeshed with each other in specific more than 2.2 million children of color historical contexts. McCall calls this third in U.S. schools were served by special approach to theorizing intersectionality education. Post-high school outcomes 358 | NIRMALA EREVELLES AND ANDREA MINEAR

for these students were striking. Among disability and have described disability as high school youth with disabilities, a socially constructed category that derives about 75 percent of African Americans, meaning and social (in)significance from compared to 39 percent of whites, are the historical, cultural, political, and eco- still not employed three to five years nomic structures that frame social life. out of school. In this same time period, Thus, at the first point of contact, both the arrest rate for African Americans CRT and disability scholars begin with with disabilities is 40 percent, com- the critical assumption that race and dis- pared to 27 percent for whites. ability are, in fact, social constructs. Thus, • States with a history of legal school seg- Haney Lopez explains “Biological race is regation account for five of the seven an illusion. . . . Social race, however, is not. states with the highest overrepresen- . . . Race has its genesis and maintains its tation of African Americans labeled vigorous strength in the realm of social mentally retarded. They are Missis- beliefs” (172). Similarly, Garland-Thomson sippi, South Carolina, North Carolina, describes disability as “the attribution of Florida, and Alabama. corporeal deviance—not so much a prop- • Among Latino students, identification erty of bodies [but rather] . . . a product of for special education varies signifi- cultural rules about what bodies should cantly from state to state. Large urban be or do” (6). At their second point of con- schools districts in California exhibit tact, race and disability are both theorized disproportionately large numbers of as relational concepts. Thus, CRT scholars Latino English-language learners rep- argue that “[r]aces are constructed rela- resented in special education classes tionally against one another, rather than in secondary schools. in isolation” (Haney Lopez, 168) such that • Some 20 percent of Latino students the privileges that Whites enjoy are linked in grades 7 through 12 had been sus- to the subordination of people of color pended from school according to sta- (Harris). Similarly, Lennard Davis points tistics from 1999 compared with 15 out that “our construction of the normal percent of white students and 35 per- world is based on a radical repression of cent of African American students. disability” (22) because “without the monstrous body to demarcate the borders of The association of race with disability has the generic . . . and without the pathologi- been extremely detrimental to people of cal to give form to the normal, the taxono- color in the U.S.—not just in education, but mies of bodily value that underlie political, also historically where associations of race social and economic arrangements would with disability have been used to justify the collapse” (Garland-Thomson, 20). Finally, brutality of slavery, colonialism, and neo- at the third point of contact, both perspec- colonialism. Unfortunately, rather than tives use stories and first-person accounts nurturing an alliance between race and to foreground the perspectives of those disability, CRT scholars (like other radi- who have experienced victimization by cal scholars) have mistakenly conceived racism and ableism first-hand (Espinoza of disability as a biological category, as an and Harris; Angela Harris; Ladson-Billings immutable and pathological abnormality and Tate IV; Parker, Deyhle, and Villenas; rooted in the “medical language of symp- Linton; Connor). toms and diagnostic categories” (Linton, In building on these alliance possibili- 8). Disability studies scholars, on the other ties, disability-studies scholars have argued hand, have critiqued this “deficit” model of that disability is, in fact, constitutive of UNSPEAKABLE OFFENSES | 359 most social differences, particularly race It is easy to dismiss eugenics as a relic of a (Baynton; Erevelles; James and Wu). One bygone era, but the continued association example to support the above claim lies in of race and disability in debilitating ways the historical narrative of eugenics as a pro- necessitates that we examine how eugenic gram of selective breeding to prevent the practices continue to reconstitute social degeneration of the human species. Colo- hierarchies in contemporary contexts via nial ideologies conceiving of the colonized the deployment of a hegemonic ideology of races as intrinsically degenerate sought to disability that have real material effects on bring these “bodies” under control via seg- people located at the intersections of dif- regation and/or destruction. Such control ference. To illustrate the argument, we will was regarded as necessary for the public now draw on the narratives of two protago- good. The association of degeneracy and nists, Junius Wilson and Cassie Smith. disease with racial difference also translated into an attribution of diminished cog- THE “UNSPEAKABLE” LIFE nitive and rational capacities of non-white OF JUNIUS WILSON populations. Disability related labels such as feeble-mindedness and mental illness The first narrative, the story of Junius Wil- were often seen as synonymous with bod- son, poignantly told in Susan Burch and ies marked oppressively by race (Baynton; Hannah Joyner’s book, Unspeakable: The Gould). Fearing that such characteristics Life of Junius Wilson, occurred at the inter- could be passed down from generation to section of disability, race, gender, and class. generation and further pose a threat to the Born in 1908 to Sidney and Mary Wilson in dominant white race, “protective” prac- the predominantly African American com- tices such as forced sterilizations, rigid mis- munity of Castle Hayne on the outskirts cegenation laws, residential segregation in of Wilmington, North Carolina, Junius ghettoes, barrios, reservations and other Wilson became deaf as a toddler. The ten- state institutions and sometimes even gen- sions of raising a deaf child in poverty con- ocide (e.g. the Holocaust) were brought to ditions within a political context of racial bear on non-white populations under the violence caused Sidney Wilson to desert protected guise of eugenics. However, con- his family, forcing his wife Mary to send structing the degenerate “other” was not the young Wilson to the residential North just an ideological intervention to support Carolina School for the Colored Blind and colonialism. In the more contemporary Deaf in Raleigh. In the segregated school in context of transnational capitalism, Erev- Raleigh, Wilson was initiated into a “black elles argues that: deaf community” and “Raleigh signs” that were specific to the school and that had the ‘ideology’ of disability is essential to the almost no currency elsewhere—a fact that capitalist enterprise because it is able to reg- would later contribute to Wilson’s social ulate and control the unequal distribution of isolation in both the deaf and the black surplus through invoking biological differ- communities. Additionally, in line with ence as the ‘natural’ cause of all inequality, racist ideologies of African American stu- thereby successfully justifying the social and dents’ low mental capacities, the school economic inequality that maintains social encouraged vocational work over tradi- hierarchies . . . [D]isability . . . is [therefore] the organizing grounding principle in the tional classroom work, so while Wilson construction of the categories of gender, could write his name out, he was unable race, class, and sexual orientation. to read and write anything else. Then, in (526) 1924, Wilson was expelled from the school 360 | NIRMALA EREVELLES AND ANDREA MINEAR

because of a minor infraction and forced to Rights of Institutionalized Persons Act, return home. Carolina Legal Assistance (CLA), a group of Returning home from Raleigh, Wil- attorneys in Raleigh, found scores of Afri- son’s habits of “touching or holding peo- can American men and women “dumped ple, stamping feet and waving arms” (33) in hospitals, abandoned by communities, constructed him as a threatening figure in and otherwise mislabeled as feeblem- a society ruled by Jim Crow laws—habits inded” (124), one of whom was Junius Wil- that could compromise the safety of him- son. After several years of lawsuits and the self, his familiy, and his community. It was involvement of advocates and family mem- perhaps for all these reasons and in an bers, Wilson was moved out to a cottage on effort to protect his family and his commu- the grounds of the hospital on February 4, nity that Arthur Smith, the family friend, 1994. He died on March 17, 2001. Hover- accused the 17-year-old Junius Wilson ing precipitously at the boundaries of race, of assaulting and attempting to rape his class, gender, and disability, Wilson had young wife, Lizzie. Thus, in August, 1925, been held in the isolating confines of the Junius Wilson was arrested and taken to institution for more than three quarters of New Hanover County jail. Unable to com- his life. Overwhelmed by the enormity of municate with Wilson, the court held a the crime committed against Wilson, Burch lunacy hearing where it was concluded and Joyner (2007) ask, “How should a soci- that Wilson was both “feeble-minded” and ety—indeed, how can a society—make dangerous, and was therefore committed amends for past misdeeds?” (3). to the criminal ward of the North Carolina But society seldom makes amends for State Hospital for the Colored Insane in past misdeeds. On the contrary, it is often Goldsboro that housed epileptics, “idiots,” apt to repeat them. Junius Wilson’s story and other “mental defectives” and exerted took place in the early twentieth century. institutional control rather than practices Our second narrative, Cassie Smith’s story, of healing. takes place in the present, almost a century With eugenics ideologies dominant in later. The terrifying aspect of Cassie’s story the early twentieth century, one means of is that it continues Wilson’s narrative, in social control was castration, the surgi- effect becoming its sequel by once again cal removal of the testicles. Thus, in 1932, foregrounding the violence that lies at the Wilson was castrated and henceforth was intersection of race, class, gender, and no longer perceived as a danger because disability. he became “a submissive black man . . . [with] eyes downcast, silent, and reserved HER TIME IS UP! CASSIE . . . a gentle childlike patient” (49). Seen GOTTA GO! EXCLUSION now as a potentially useful worker, Wil- AT THE INTERSECTIONS son was sent to work in the Farm Colony (the farm attached to the hospital) and was One of the authors of this article, Andrea, leased to private farmers till his retirement had met Cassie two years ago at the home in 1970, where he was transferred to a geri- school cooperative, DAWN, which she ran atric ward. Even though all charges against for students like Cassie who did not seem him were dropped by then, he continued to “fit” in public school. Cassie’s mother, to be incarcerated for another twenty years Aliya Smith, a single mother on disability because it was conceived of as “the most for the last 15 years, lives in public housing benevolent course of action” (1). with her daughter Cassie and her six-year- In the 1970s, in response to the Civil old son Charles in a small southern town. UNSPEAKABLE OFFENSES | 361

Cassie’s father lives close by but has been started out in a private preschool pro- mostly absent from her life. She had been gram at the Holy Trinity Baptist School. very close to her grandmother who passed Without the benefit of records or first- away a year ago. hand knowledge, we wonder whether On her first day at DAWN, Cassie tried the fact that Cassie was an economically desperately to fit in with the other eight disadvantaged black child in an all-white adolescent girls at the school. She was school caused her to appear “behind” and dressed neatly. But she had severe eczema uncontrollable. Aliya recalls, “She used to on her skin and was eyed suspiciously by get temper tantrums and they told me if I the other girls as if her rash was conta- couldn’t get her straightened up, she gotta gious. Her hair was braided stylishly, but go!” Aliya moved Cassie to the Head Start her braids were already loosening and program and then to her neighborhood falling out because she picked at her head school for kindergarten: continuously. Her big toothy grin gave way to raucous laughter, much louder than the And then they [the school personnel] said children in the small school were used to. that she needed help (Cassie interjects: “No, She tried so hard to be friendly, but she was I don’t!”). So we had to go through evalua- met with wariness. tions, meetings, and stuff. They tried to say After barely less than a day of observa- that she was mentally retarded. (Cassie inter- tion and evaluation, Andrea realized that jects, “I am not MR!”) . . . [Aliya continues in Cassie could not read—a fact that she had response to Cassie] But she was then. So they successfully hidden from even her clos- sent her to “Sally’s Corner.” est friends. When asked to write a journal entry, her sentences contained a string of In this small southern town, “Sally’s Cor- three letter words that made little sense ner” was touted as the haven for kids with such as “pig as you as zoo cat by as no as severe emotional and behavioral problems. dog pig as zoo no by you as zoo as cat red.” In its mission statement the school claimed Cassie “pretended” very well, opening to offer treatment based on “an interdisci- her book, following along and even read- plinary approach with psychology, educa- ing “along with” someone, saying a word tion, nursing, psychiatry, social work and immediately after the other person began counseling comprising the professions the word. Because she did not read, she that impact each client’s treatment.” The had limited knowledge of other subject website also included several testimonials areas. She could barely add and could not from parents and one child that described subtract. She recognized some coins, but “Sally’s Corner” very positively. Cassie’s could not figure money. Andrea realized memories of “Sally’s Corner,” however, with dismay that twelve-year-old Cassie were very dark: was functionally illiterate. When we interviewed Cassie and her mother, her turbulent and tragic educa- Cassie: [“Sally’s Corner”] is like a bad place. tional history was slowly revealed. We They put you there when you get learned to our horror that Cassie had been in trouble. They restrain you. They put your arms like this . . . sit on you bounced around to a different school kinda and put you in a room where every year of her school life; two schools no windows at and a little time out in some years. As a toddler, Cassie spent a room by yourself. . . . And they come lot of time with her grandmother because and look at you. And I say, “Let me of Aliya’s poor health. At age four, Cassie out” and kick the door. . . . 362 | NIRMALA EREVELLES AND ANDREA MINEAR

NE: What is it that that gets you really a small, angry five-year-old African Ameri- angry? can girl with anger-management issues Cassie: When somebody tries to fight with than being thrown into a “jail cell”? What me and pull my hair was it about that tiny enraged black body NE: But the teachers don’t try to fight that terrified the staff so much that they with you, do they? threw all their knowledge out of the win- Cassie: Oh I’ll still fight you the big ole fat ole . . . sit on me . . . Half ton white dow, opting instead for the behavioral folks. strategy of “imprisonment”? This was the educational legacy that By Cassie’s own admission, we can under- Cassie would carry forward with her as stand that she was no easy client, and it is she moved into the first grade at her new reasonable to assume that Cassie was in elementary school, Woodberry Gardens. need of some kind of program that would After two good years she was inexplicably help manage her fits of rage so she could moved to Spartan Elementary and once also learn. And surely, they had all that again to Nottingham. Each time, as Aliya expertise from the multi-disciplinary team put it, they told her that “It was time for her to do something for her. But again, we do not to leave there . . . Her time was up.” really know what happened there except for Apparently, at this time, Cassie no longer this explanation from Aliya about why she held the label “mental retardation.” Still, wanted Cassie to leave “Sally’s Corner” after when asked, her mother just says, “She only a couple of months there: acted crazy!” She was now thrown into a regular program at Nottingham Elementary They locked you up all the time. They had with no supports. Once again her academic this jail cell. She had spit on the wall while and behavioral problems were exacerbated. she was in there. They called my mama [Cas- Once again she was teased and called names sie’s grandmother]. I was sick at that time. by her peers. Once again she fought back— My mama and my sister-in-law went. My she cut a classmate’s hair. And once again mama was so mad when she went out there. she suffered the consequences of her nega- She told them, “Open the door. Let that child tive behavior. Less than two months before outta there!” My mama did not understand. her graduation from elementary school, Actually she did not care. Like she [Cassie] Cassie was transferred to her eighth school, was being treated like a dog or something . . . Athena Elementary. Aliya was livid: And then they said that before she left she had to scrub the room. My mama said, “Get You talking about somebody was mad. No! that child outta there!” And they said she I could never understand why they sent her could not leave before she did that. So my to Athena. I went over there and met with mom told Cassie what were the spots that she spit at. And to clean just them. They wanted the teacher. . . . It had something to do with her to clean the whole room! Then she got her learning. There was a month and half to graduate and they sent her to Athena. Then to get ready to go. . . . It was time for her to that teacher was up there ill-treating her. . . . go. . . . Kept on trying to get her out. . . . They They wanted her to graduate with her Ath- finally agreed and I got her to go to Wood- ena [special education] class. And I said, “I berry Gardens. didn’t spend all that money and time at Not- tingham for this. I was so mad. I told them Once again, while we acknowledge that we that I would have her out of school if they have only one side of the story, there are would not let me take her out [of Athena]. aspects that still puzzle us. Surely “a model Then they listened. When they figured out treatment program” had more options for that I was not playing with them, they got UNSPEAKABLE OFFENSES | 363

those papers. Like they couldn’t get them or three weeks. According to the Assistant fast enough. They just moved them in the Principal, there was an ongoing investiga- office. And I took her to Nottingham and she tion and then a meeting was called with was there was for three days so that she could the Building Based Special Team (BBST) graduate with her class. And they did it [the and the parent to discuss what they called a graduation ceremony] in such a way, that she “manifestation determination.” The ques- had to be escorted. Like she was such a bad child. Like she was coming from prison. Her tion of the day: Was it Cassie’s “learning last two teachers had to walk with her side by disability” that caused her to have oral sex side. She was the last one to walk. with a boy in her class or was this done on her own volition? Following “procedure” Thus, after being in eight schools in eight each member concurred that her “learn- years, Cassie came to DAWN, the home- ing disability” could not have caused her to school cooperative, as a sixth grader with perform oral sex. She knew what she was a plethora of problems. In this supportive doing. Therefore she was GUILTY. Under context, Cassie made great leaps in her the zero-tolerance policy, this called for social behavior and even made some aca- expulsion. demic headway. However, Andrea was Not once did the committee even bother forced to close DAWN at the end of the to look at Cassie’s painful history of exclu- year for financial reasons, and so Cassie sion, segregation, incarceration, and nega- prepared to re-enter public school in the tion. It was lucky that Andrea was there. next fall. Aliya was a poor advocate for her child. Eager to learn, but receiving very little Intimidated, angry, confused, and defen- help in school, Cassie soon got frustrated sive, she often ended up blaming her and into fights again. She was sent to the daughter for the “stupid thing she did.” It Alternative School which ironically she was Andrea who saved the day. Drawing on actually liked because of the structure and her experiences as a former special educa- individual attention. But then, even this tion teacher, Andrea brought up Cassie’s realm of contentment vanished one day— educational history of social isolation and the day of the “incident.” One spring day, low self-esteem that were the by-products six students (four boys and two girls) were of her “learning disability” and that may left without supervision in a classroom for have influenced her decision to perform a few minutes while one of the teachers a sexual act that garnered her some form walked a student to his car to speak to his of warped recognition/respect/visibility mother. The boys teased and taunted the among her peers. In addition, Andrea had to girls making rude, sometimes vulgar, sug- spell out the possible legal ramifications of gestions and then laughing them off. One leaving students unsupervised in a locked of the boys told Cassie, “So-and-so thinks and isolated classroom for even a short you’re pretty. He wants you to suck his period of time. We believe that it was the dick.” And so she went behind the cubbies last statement that sealed the deal. It was and obliged. not the history of educational abuse, but By the next day, word spread all over the the threat of legal ramifications that made school. As the rumor gathered momentum, the committee decide that they would not more and more people became aware, recommend expulsion. Cassie would have including the school counselor and the another chance at school. But whether she assistant principal. However, neither the would have the support that she needed to classroom teacher, nor the parents of the make it through another school year was perpetrators were notified for nearly two still an open question. 364 | NIRMALA EREVELLES AND ANDREA MINEAR

The process of narrating Cassie’s edu- political context of racial terror and abject cational history during the interviews poverty in the Jim Crow South that consti- inadvertently produced an unpredict- tuted his deafness as “dangerous” differ- able benefit for Aliya. In a marked difference that could only be contained within ence from the “professionals” who were the institutional confines of a segregated reviewing Cassie’s case, it was Aliya, con- residential school for the “Colored” deaf. fused, angry, troubled, and yet still hope- Ironically, this confinement provided Wil- ful, who was able to see how the differ- son with a cultural community of other deaf ent disruptive, demeaning, and punitive students of color while it at the same time experiences that began early in Cassie’s alienated him from his community outside life were now responsible for the risky, the school. Additionally, unlike white deaf sullen, and disorderly behaviors of her students, being black and deaf located him teenage daughter. Now with the gift of at the lowest rungs of the social hierarchy hindsight, and therefore conscious of her of the time, providing him with an inferior own disempowerment in the process, education that would also play a part in his Aliya poignantly reflected: continued social isolation. On returning home, his disability cast a shadow on his If I had known the system better, I would race and gender and contributed to his con- not have put her there [“Sally’s Corner”]. struction as the dangerously virile young But at that time I did not know the system. black male—images that led to the false It seemed that they were trying to hurt me, accusation of sexual assault, his incarcera- rather than help me. tion, and ultimately to the final violent act of his castration. During that time, he was put “UNSPEAKABLE OFFENSES”: AN to work in the farm colony as part of the sur- INTERCATEGORICAL ANALYSIS OF plus population being utilized to produce INTERSECTIONALITY profits for the institution. Without financial resources and other social supports, Just like Junius Wilson, Cassie is also his family could do little to intervene on his located at the boundaries of race, class, behalf, which resulted in him languishing in gender, and disability. Each of their stories an institution for 76 years. The institution’s brings to the forefront several questions: refusal to release him even after all charges How does racism in its interaction with the were dropped against him was justified inauspicious combination of class, gender, under a mantle of benevolence. It was this and disability oppression cohere to locate same benevolence that allowed the institu- Wilson and the Smiths beyond the pale of tion to justify the unequal and oppressive appropriate interventions by the very insti- conditions in the institution by arguing that tutions (legal, rehabilitative, and educa- “the lack of facilities are not due to racial tional) that were designed to nurture and biases but the fact [that] Negro patients are empower them? At which point did dis- willing to accept what is provided to them, ability trump race? When did class become ‘which is more than they have at home’” the critical influential factor? At what point (Burch & Joyner, 74). did gender become the only perceivable In an earlier section of this article, we threat? In each of the stories, it is very diffi- wrote that Cassie Smith provided Junius cult to unravel and isolate the strands that Wilson’s story with its unwelcome sequel. played an integral part in weaving the vio- At first glance, this assertion may seem lent tapestry of their broken lives. far-fetched in the contemporary historical For Junius Wilson, it was the socio- context of the New South where Jim Crow UNSPEAKABLE OFFENSES | 365

(re)appears as only a distant and shameful with an allegedly undisciplined, economi- memory. Yet, Cassie’s story foregrounds cally disadvantaged, African American girl, an interesting twist to the continuing saga fearfully sought the protection of the label of racial segregation in the New South. In “mental retardation”—a label that would place of Jim Crow, Cassie’s ever-changing justify her incarceration at the tender age labels of MR, LD, and ADHD were used as of five years old and continue to support the justification for her continued segrega- her social isolation as it made its punitive tion in an effort to protect the mainstream march on the successive legs of her young from a dangerous racialized Other—the educational career? economically disadvantaged disabled Afri- We argue here that an intercategorical can American girl. Here, class and race also analysis of intersectionality enables us to played a significant role in maintaining this foreground the structural context where segregation. As educators, we have known the social categories of race, class, gender, privileged white students with similar and disability are (re) constituted within behavioral problems whose parents were the two narratives of Junius Wilson and able to corral the school’s best resources, Cassie Smith. First, we identify disability were able to access professional help out- as the organizing ideological force that is side the school, and, in the worst case sce- deployed in both narratives as the means nario, were able to transfer their child to a to organize the social hierarchies in their private school. Aliya Smith’s economic and respective historical contexts. Here, we social disadvantages did not permit her describe disability as the very embodiment these luxuries. Instead, her disadvantages of the disruption of normativity that is, in proved to be a further liability, a signal to turn, symbolic of efficient and profitable the school professionals that there was individualism and the efficient economic really no need to “fight” for her daughter appropriation of those profits produced Cassie. As a result, even though Cassie had within capitalist societies. In the early an IEP replete with individualized goals to twentieth century, Jim Crow and eugenics improve both her behavior and her learn- served as the two principal mechanisms ing, she never met most of those goals, and that patrolled the boundaries of society in nobody cared. This was apparent in her order to identify those individuals/com- seventh grade report card that listed her munities who were seen as a threat to the as earning As and Bs, even though she was normative social order (the status quo) still functionally illiterate and still had little within an incipient capitalist society. The behavior control. New South replaced those outmoded Finally, perhaps most telling is how dis- mechanisms of segregation with more ability as a “social” not a “clinical” condi- modern systems that were more appropri- tion was used to establish the benevolence ately in keeping with the times. Thus, for of the special education bureaucracy and in example, in educational contexts the spe- doing so masked the violence that became cial education bureaucracy with its com- an inextricable part of Cassie’s educa- plex machinery of pseudo-medical evalu- tional career. Cassie was first MR, then ations, confusing legal discourses, and ADHD, and then LD—labels that ebbed overwhelming paperwork administered and flowed with the passing tides in differ- by a body of intimidating professionals ent contexts. Clearly, given its temporality, now performs tasks that are not very dif- “mental retardation” cannot be a robust ferent from Jim Crow and eugenic ideolo- category. So, could it then be that the edu- gies. To put it more simply, special educa- cational gatekeepers, when confronted tion, instead of being used to individualize 366 | NIRMALA EREVELLES AND ANDREA MINEAR

education programs to meet the special that its product is a system of formalized needs of students, is instead used to seg- distortions of thought. It produces social regate students who disrupt the “normal” structures centered around fear and hate, functioning of schools. Moreover, on it provides a timorous outlet for feelings the few occasions when Cassie’s mother elsewhere unexpressed . . . We need to see it as a cultural cancer; we need to open our sought to confront them, they invoked eyes to the spiritual genocide it is wreaking their complicated bureaucracy (e.g. using on blacks, whites, and the abandoned and phrases like manifestation determination) abused of all races and ages. We need to to further confuse and intimidate her. eradicate its numbing pathology before it While we do not deny that Cassie did have wipes out what precious little humanity we significant problems, we argue that the have left. only intervention that was sought by the (234) special education bureaucracy as the most effective was segregation and ultimately Clearly, in our educational institutions incarceration (alternative school and later there are millions of students of color, a very real possibility of prison). Cassie is, mostly economically disadvantaged and no doubt, difficult to manage and perhaps disabled, for whom spirit murder is the even challenging to care about enough to most significant experience in their edu- help her conquer her barriers. But it is her cational lives. In fact, it is this recogni- right that she not be made dispensable. tion of spirit murder in the everyday lives of disabled students of color that forges a “SPIRIT MURDER” AND THE critical link between disability studies and “NEW” EUGENICS: CRITICAL CRT/F through the intercategorical analy- RACE THEORY MEETS DISABILITY sis of intersectionality. In other words, STUDIES utilizing an intercategorical analysis from the critical standpoint of disability stud- The three stories of Eleanor Bumpurs, Jun- ies will foreground the structural forces in ius Wilson, and Cassie and Aliya Smith, place that constitute certain students as a however poignant they may appear to surplus population that is of little value in be, are not unique. Police brutality, false both social and economic terms. That most imprisonment, and educational negligence of these students are poor, disabled, and of are commonplace in the lives of people of color is critical to recognize from within a color—especially those who are located at CRT/F perspective. By failing to undertake the margins of multiple identity catego- such an analysis, we could miss several ries. So common are these practices that political opportunities for transformative CRF scholar Patricia Williams has argued action. that these kinds of assaults should not be dismissed as the “odd mistake” but rather be given a name that associates them with NOTES criminality. Her term for such assaults on 1. See e.g. bell hooks; Angela Davis; Audre Lorde; an individual’s personhood is “spirit mur- Gloria Anzaldúa; Gloria Hull, Patricia Bell Scott, der,” which she describes as the equivalent and Barbara Smith. of body murder. 2. For examples, consult Gloria Anzaldúa; Kimberlé Crenshaw; Angela Harris; Adrien Wing; and Audre Lorde. One of the reasons I fear what I call spirit 3. Artiles; Artiles, Harry, Reschly, and Chinn; murder, or disregard for others whose Connor and Ferri; Reid and Knight; Watts and lives qualitatively depend on our regard, is Erevelles. UNSPEAKABLE OFFENSES | 367

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Compulsory Able-Bodiedness and Queer/Disabled Existence Robert McRuer

CONTEXTUALIZING DISABILITY existence. Indeed, I would extract from her suspicion of mere “toleration” confirmation In her famous critique of compulsory het- for the idea that one of the ways in which erosexuality Adrienne Rich opens with the heterosexuality is currently constituted or suggestion that lesbian existence has often founded, established as the foundational been “simply rendered invisible” (178), but sexual identity for women, is precisely the bulk of her analysis belies that render- through the deployment of lesbian exis- ing. In fact, throughout “Compulsory Het- tence as always and everywhere supple- erosexuality and Lesbian Existence,” one of mentary—the margin to heterosexuality’s Rich’s points seems to be that compulsory center, the mere reflection of (straight and heterosexuality depends as much on the gay) patriarchal realities. Compulsory het- ways in which lesbian identities are made erosexuality’s casting of some identities as visible (or, we might say, comprehensible) alternatives ironically buttresses the ideo- as on the ways in which they are made in- logical notion that dominant identities are visible or incomprehensible. She writes: not really alternatives but rather the natu- 1 Any theory of cultural/political creation that ral order of things. treats lesbian existence as a marginal or less More than twenty years after it was ini- “natural” phenomenon, as mere “sexual tially published, Rich’s critique of com- preference,” or as the mirror image of either pulsory heterosexuality is indispensable, heterosexual or male homosexual relations the criticisms of her ahistorical notion of is profoundly weakened thereby, whatever a “lesbian continuum” notwithstanding. 2 its other contributions. Feminist theory can Despite its continued relevance, however, no longer afford merely to voice a toleration the realm of compulsory heterosexuality of “lesbianism” as an “alternative life-style,” might seem to be an unlikely place to begin or make token allusion to lesbians. A femi- 3 nist critique of compulsory heterosexual ori- contextualizing disability. I want to chal- entation for women is long overdue. (178) lenge that by considering what might be gained by understanding “compulsory het- The critique that Rich calls for proceeds erosexuality” as a key concept in disability not through a simple recognition or even studies. Through a reading of compulsory valuation of “lesbian existence” but rather heterosexuality, I want to put forward a through an interrogation of how the system theory of what I call compulsory able-bod- of compulsory heterosexuality utilizes that iedness. The Latin root for contextualize 370 | ROBERT MCRUER

denotes the act of weaving together, inter- and lesbian liberation, the processes he de- weaving, joining together, or composing. scribes should be recognizable to feminists This chapter thus contextualizes disability and queer theorists, as well as to scholars in the root sense of the word, because I argue and activists in other contemporary move- that the system of compulsory able-bodied- ments, such as African American studies ness that produces disability is thoroughly or critical race theory. As these movements interwoven with the system of compulsory have developed, increasing numbers of heterosexuality that produces queerness, words have indeed forced themselves on that—in fact—compulsory heterosexuality our attention, so that an inquiry into not is contingent on compulsory able-bodied- just the marginalized identity but also the ness and vice versa. And, although I reiter- dominant identity has become necessary. ate it in my conclusion, I want to make it The problem of the meaning of masculinity clear at the outset that this particular con- (or even maleness), of whiteness, of hetero- textualizing of disability is offered as part of sexuality has increasingly been understood a much larger and collective project of un- as inextricably bound up with the problems raveling and decomposing both systems.4 the term is being used to discuss. The idea of imbricated systems is, of One need go no further than the Oxford course, not new—Rich’s own analysis re- English Dictionary to locate problems with peatedly stresses the imbrication of com- the meaning of heterosexuality. In 1971 pulsory heterosexuality and patriarchy. I the OED Supplement defined heterosexual would argue, however, as others have, that as “pertaining to or characterized by the feminist and queer theories (and cultural normal relations of the sexes; opp. to ho- theories generally) are not yet accustomed mosexual.” At this point, of course, a few to figuring ability/disability into the equa- decades of critical work by feminists and tion, and thus this theory of compulsory queer theorists have made it possible to able-bodiedness is offered as a preliminary acknowledge quite readily that heterosex- contribution to that much-needed conver- ual and homosexual are in fact not equal sation.5 and opposite identities. Rather, the ongoing subordination of homosexuality (and ABLE-BODIED HETEROSEXUALITY bisexuality) to heterosexuality allows for heterosexuality to be institutionalized as In his introduction to Keywords: A Vocabu- “the normal relations of the sexes,” while lary of Culture and Society, Raymond Wil- the institutionalization of heterosexuality liams describes his project as as the “normal relations of the sexes” al- the record of an inquiry into a vocabulary: a lows for homosexuality (and bisexuality) to shared body of words and meanings in our be subordinated. And, as queer theory con- most general discussions, in English, of the tinues to demonstrate, it is precisely the practices and institutions which we group as introduction of normalcy into the system culture and society. Every word which I have that introduces compulsion: “Nearly every- included has at some time, in the course of one,” Michael Warner writes in The Trouble some argument, virtually forced itself on my with Normal: Sex, Politics, and the Ethics of attention because the problems of its mean- Queer Life, “wants to be normal. And who ing seemed to me inextricably bound up can blame them, if the alternative is be- with the problems it was being used to discuss. (15) ing abnormal, or deviant, or not being one of the rest of us? Put in those terms, there Although Williams is not particularly con- doesn’t seem to be a choice at all. Especially cerned in Keywords with feminism or gay in America where [being] normal probably COMPULSORY ABLE-BODIEDNESS AND QUEER/DISABLED EXISTENCE | 371 outranks all other social aspirations” (53). OED defines able-bodied redundantly and Compulsion is here produced and covered negatively as “having an able body, i.e. one over, with the appearance of choice (sexual free from physical disability, and capable preference) mystifying a system in which of the physical exertions required of it; in there actually is no choice. bodily health; robust.” Able-bodiedness, A critique of normalcy has similarly been in turn, is defined vaguely as “soundness central to the disability rights movement of health; ability to work; robustness.” The and to disability studies, with—for exam- parallel structure of the definitions of abil- ple—Lennard Davis’s overview and critique ity and sexuality is quite striking: first, to of the historical emergence of normalcy or be able-bodied is to be “free from physical Rosemarie Garland-Thomson’s introduc- disability,” just as to be heterosexual is to tion of the concept of the “normate” (Da- be “the opposite of homosexual.” Second, vis, 23–49; Thomson, 8–9). Such scholarly even though the language of “the normal and activist work positions us to locate the relations” expected of human beings is not problems of able-bodied identity, to see present in the definition of able-bodied, the problem of the meaning of able-bod- the sense of “normal relations” is, especial- iedness as bound up with the problems it is ly with the emphasis on work: being able- being used to discuss. Arguably, able-bod- bodied means being capable of the normal ied identity is at this juncture even more physical exertions required in a particular naturalized than heterosexual identity. At system of labor. It is here, in fact, that both the very least, many people not sympathet- able-bodied identity and the Oxford Eng- ic to queer theory will concede that ways of lish Dictionary betray their origins in the being heterosexual are culturally produced nineteenth century and the rise of indus- and culturally variable, even if and even as trial capitalism. It is here as well that we they understood heterosexual identity it- can begin to understand the compulsory self to be entirely natural. The same cannot nature of able-bodiedness: in the emer- be said, on the whole, for able-bodied iden- gent industrial capitalist system, free to sell tity. An extreme example that nonetheless one’s labor but not free to do anything else encapsulates currently hegemonic thought effectively meant free to have an able body on ability and disability is a notorious Sa- but not particularly free to have anything lon article by Norah Vincent attacking dis- else. ability studies that appeared online in the Like compulsory heterosexuality, then, summer of 1999. Vincent writes, “It’s hard compulsory able-bodiedness functions to deny that something called normalcy by covering over, with the appearance of exists. The human body is a machine, af- choice, a system in which there actually is ter all—one that has evolved functional no choice. I would not locate this compul- parts: lungs for breathing, legs for walking, sion, moreover, solely in the past, with the eyes for seeing, ears for hearing, a tongue rise of industrial capitalism. Just as the ori- for speaking and most crucially for all the gins of heterosexual/homosexual identity academics concerned, a brain for thinking. are now obscured for most people so that This is science, not culture.”6 In a nutshell, compulsory heterosexuality functions as a you either have an able body, or you don’t. disciplinary formation seemingly emanat- Yet the desire for definitional clarity ing from everywhere and nowhere, so too might unleash more problems than it con- are the origins of able-bodied/disabled tains; if it’s hard to deny that something identity obscured, allowing what Susan called normalcy exists, it’s even harder Wendell calls “the disciplines of normality” to pinpoint what that something is. The (87) to cohere in a system of compulsory 372 | ROBERT MCRUER

able-bodiedness that similarly emanates identities, able-bodied perspectives are from everywhere and nowhere. Able-bod- preferable and what we all, collectively, ied dilutions and misunderstandings of the are aiming for. A system of compulsory minority thesis put forward in the disabil- able-bodiedness repeatedly demands that ity rights movement and disability studies people with disabilities embody for oth- have even, in some ways, strengthened the ers an affirmative answer to the unspoken system: the dutiful (or docile) able-bodied question, Yes, but in the end, wouldn’t you subject now recognizes that some groups rather be more like me? of people have chosen to adjust to or even It is with this repetition that we can begin take pride in their “condition,” but that rec- to locate both the ways in which compul- ognition, and the tolerance that undergirds sory able-bodiedness and compulsory het- it, covers over the compulsory nature of the erosexuality are interwoven and the ways able-bodied subject’s own identity.7 in which they might be contested. In queer Michael Bérubé’s memoir about his son theory, Judith Butler is most famous for Jamie, who has Down syndrome, helps identifying the repetitions required to exemplify some of the ideological de- maintain heterosexual hegemony: mands currently sustaining compulsory able-bodiedness. Bérubé writes of how The “reality” of heterosexual identities is he “sometimes feel[s] cornered by talking performatively constituted through an imi- about Jamie’s intelligence, as if the burden tation that sets itself up as the origin and of proof is on me, official spokesman on his the ground of all imitations. In other words, behalf.” The subtext of these encounters heterosexuality is always in the process of imitating and approximating its own phan- always seems to be the same: “In the end, tasmatic idealization of itself—and failing. aren’t you disappointed to have a retarded Precisely because it is bound to fail, and yet child? [. . .] Do we really have to give this endeavors to succeed, the project of hetero- person our full attention?” (180). Bérubé’s sexual identity is propelled into an endless excavation of this subtext pinpoints an repetition of itself. (“Imitation,” 21) important common experience that links all people with disabilities under a system If anything, the emphasis on identities that of compulsory able-bodiedness—the ex- are constituted through repetitive perfor- perience of the able-bodied need for an mances is even more central to compul- agreed-on common ground. I can imagine sory able-bodiedness—think, after all, of that answers might be incredibly varied to how many institutions in our culture are similar questions—“In the end, wouldn’t showcases for able-bodied performance. you rather be hearing?” and “In the end, Moreover, as with heterosexuality, this rep- wouldn’t you rather not be HIV positive?” etition is bound to fail, as the ideal able- would seem, after all, to be very different bodied identity can never, once and for questions, the first (with its thinly veiled all, be achieved. Able-bodied identity and desire for Deafness not to exist) more obvi- heterosexual identity are linked in their ously genocidal than the second. But they mutual impossibility and in their mutual are not really different questions, in that incomprehensibility—they are incompre- their constant repetition (or their presence hensible in that each is an identity that as ongoing subtexts) reveals more about is simultaneously the ground on which the able-bodied culture doing the asking all identities supposedly rest and an than about the bodies being interrogated. impressive achievement that is always The culture asking such questions assumes deferred and thus never really guaranteed. in advance that we all agree: able-bodied Hence Butler’s queer theories of gender COMPULSORY ABLE-BODIEDNESS AND QUEER/DISABLED EXISTENCE | 373 performativity could be easily extended ongoing medicalization of identity, simi- to disability studies, as this slightly para- lar to what people with disabilities more phrased excerpt from Gender Trouble might generally encounter, would suggest). Once suggest (I substitute, by bracketing, terms these conflations are available in the popu- having to do literally with embodiment for lar imagination, queer/disabled figures can Butler’s terms of gender and sexuality): be tolerated and, in fact, utilized in order to maintain the fiction that able-bodied [Able-bodiedness] offers normative . . . po- heterosexuality is not in crisis. As lesbian sitions that are intrinsically impossible to existence is deployed, in Rich’s analysis, to embody, and the persistent failure to iden- reflect back heterosexual and patriarchal tify fully and without incoherence with these “realities,” queer/disabled existence can positions reveals [able-bodiedness] itself be deployed to buttress compulsory able- not only as a compulsory law, but as an in- bodiedness. Since queerness and disability evitable comedy. Indeed, I would offer this insight into [able-bodied identity] as both a both have the potential to disrupt the per- compulsory system and an intrinsic comedy, formance of able-bodied heterosexuality, a constant parody of itself, as an alternative both must be safely contained—embod- [disabled] perspective. (122) ied—in such figures. In the 1997 film As Good As It Gets, for In short, Butler’s theory of gender trou- example, although Melvin Udall (Jack ble might be resignified in the context of Nicholson), who is diagnosed in the film as queer/disability studies to highlight what obsessive-compulsive, is represented visu- we could call “ability trouble”—meaning ally in many ways that initally position him not the so-called problem of disability in what Martin F. Norden calls “the cinema but the inevitable impossibility, even as of isolation” (i.e., Melvin is represented in it is made compulsory, of an able-bodied ways that link him to other representations identity. of people with disabilities), the trajectory of the film is toward able-bodied heterosexuality. To effect the consolidation of hetero- QUEER/DISABLED EXISTENCE sexual and able-bodied norms, disability The cultural management of the endemic and queerness in the film are visibly locat- crises surrounding the performance of het- ed elsewhere, in the gay character Simon erosexual and able-bodied identity effects Bishop (Greg Kinnear). Over the course a panicked consolidation of hegemonic of the film, Melvin progressively sheds his identities. The most successful hetero- own sense of inhabiting an anomalous sexual subject is the one whose sexuality body, and disability is firmly located in the is not compromised by disability (meta- non-heterosexual character, who is ini- phorized as queerness); the most success- tially represented as able-bodied, but who ful able-bodied subject is the one whose ends up, after he is attacked and beaten ability is not compromised by queerness by a group of burglars, using a wheelchair (metaphorized as disability). This consoli- and cane for most of the film. More impor- dation occurs through complex processes tant, the disabled/queer figure, as in many of conflation and stereotype: people with other contemporary cultural representa- disabilities are often understood as some- tions, facilitates the heterosexual romance: how queer (as paradoxical stereotypes of Melvin first learns to accept the differences the asexual or oversexual person with dis- Simon comes to embody, and Simon then abilities would suggest), while queers are encourages Melvin to reconcile with his often understood as somehow disabled (as girlfriend, Carol Connelly (Helen Hunt). 374 | ROBERT MCRUER

Having served their purpose, Simon, dis- ity studies. Everyone is virtually disabled, ability, and queerness are all hustled off- both in the sense that able-bodied norms stage together. The film concludes with are “intrinsically impossible to embody” a fairly traditional romantic reunion be- fully, and in the sense that able-bodied tween the (able-bodied) male and female status is always temporary, disability being leads.8 the one identity category that all people will embody if they live long enough. What we might call a critically disabled position, CRITICALLY QUEER, SEVERELY however, would differ from such a virtually DISABLED disabled position; it would call attention The crisis surrounding heterosexual iden- to the ways in which the disability rights tity and able-bodied identity does not au- movement and disability studies have re- tomatically lead to their undoing. Indeed, sisted the demands of compulsory able- as this brief consideration of As Good As bodiedness and have demanded access to It Gets should suggest, this crisis and the a newly imagined and newly configured anxieties that accompany it can be invoked public sphere where full participation is in a wide range of cultural texts precisely not contingent on an able body. to be (temporarily) resolved or alleviated. We might, in fact, extend the concept Neither gender trouble nor ability trouble and see such a perspective not as critically is sufficient in and of itself to unravel com- disabled but rather as severely disabled, pulsory heterosexuality or compulsory with severe performing work similar to able-bodiedness. Butler acknowledges this the critically queer work of fabulous. Tony problem: “This failure to approximate the Kushner writes: norm [. . .] is not the same as the subversion of the norm. There is no promise that Fabulous became a popular word in the subversion will follow from the reiteration queer community—well, it was never un- of constitutive norms; there is no guaran- popular, but for a while it became a battle cry tee that exposing the naturalized status of of a new queer politics, carnival and camp, aggressively fruity, celebratory and tough like heterosexuality will lead to its subversion” a streetwise drag queen: “FAAAAABULOUS!” (“Critically Queer,” 22; quoted in Warner, [. . .] Fabulous is one of those words that “Normal and Normaller” 168–169, n. 87). provide a measure of the degree to which a For Warner, this acknowledgment in Butler person or event manifests a particular, usu- locates a potential gap in her theory, “let us ally oppressed, subculture’s most distinctive, say, between virtually queer and critically invigorating features. (vii) queer” (Warner, “Normal and Normaller,” 168–169, n. 87). In contrast to a virtually Severe, though less common than fabulous, queer identity, which would be experi- has a similar queer history: a severe cri- enced by anyone who failed to perform tique is a fierce critique, a defiant critique, heterosexuality without contradiction and one that thoroughly and carefully reads a incoherence (i.e., everyone), a critically situation—and I mean reading in the street queer perspective could presumably mo- sense of loudly calling out the inadequacies bilize the inevitable failure to approximate of a given situation, person, text, or ideolo- the norm, collectively “working the weak- gy. “Severely disabled,” according to such a ness in the norm,” to use Butler’s phrase queer conception, would reverse the able- (“Critically Queer,” 26).9 bodied understanding of severely disabled A similar gap could be located if we bodies as the most marginalized, the most appropriate Butler’s theories for disabil- excluded from a privileged and always COMPULSORY ABLE-BODIEDNESS AND QUEER/DISABLED EXISTENCE | 375 elusive normalcy, and would instead sug- And in contrast to an able-bodied culture gest that it is precisely those bodies that that holds out the promise of a substantive are best positioned to refuse “mere tolera- (but paradoxically always elusive) ideal, a tion” and to call out the inadequacies of queer/disabled perspective would resist compulsory able-bodiedness. Whether it is delimiting the kinds of bodies and abili- the “army of one-breasted women” Audre ties that are acceptable or that will bring Lorde imagines descending on the Capi- about change. Ideally, a queer/disability tol; the Rolling Quads, whose resistance studies—like the term queer itself—might sparked the independent living movement function “oppositionally and relationally in Berkeley, California; Deaf students shut- but not necessarily substantively, not as ting down Gallaudet University in the Deaf a positivity but as a positionality, not as President Now action; or ACT UP storm- a thing, but as a resistance to the norm” ing the National Institutes of Health or the (Halperin, 66). Of course, in calling for a Food and Drug Administration, severely queer/disability studies without a neces- disabled/critically queer bodies have al- sary substance, I hope it is clear that I do ready generated ability trouble that remaps not mean to deny the materiality of queer/ the public sphere and reimagines and re- disabled bodies, as it is precisely those shapes the limited forms of embodiment material bodies that have populated the and desire proffered by the systems that movements and brought about the chang- would contain us all.10 es detailed above. Rather, I mean to argue Compulsory heterosexuality is inter- that critical queerness and severe disabil- twined with compulsory able-bodiedness; ity are about collectively transforming (in both systems work to (re)produce the able ways that cannot necessarily be predicted body and heterosexuality. But precisely in advance) the substantive uses to which because these systems depend on a queer/ queer/disabled existence has been put by disabled existence that can never quite be a system of compulsory able-bodiedness, contained, able-bodied heterosexuality’s about insisting that such a system is nev- hegemony is always in danger of being dis- er as good as it gets, and about imagining rupted. I draw attention to critically queer, bodies and desires otherwise. severely disabled possibilities to further an incorporation of the two fields, queer NOTES theory and disability studies, in the hope that such a collaboration (which in some 1. In 1976, the Brussels Tribunal on Crimes against cases is already occurring, even when it is Women identified “compulsory heterosexuality” as one such crime (Katz, 26). A year earlier, not acknowledged or explicitly named as in her important article “The Traffic in Women: such) will exacerbate, in more productive Notes on the ‘Political Economy’ of Sex,” Gayle ways, the crisis of authority that currently Rubin examined the ways in which “obligatory besets heterosexual/able-bodied norms. heterosexuality” and “compulsory heterosexu- Instead of invoking the crisis in order to ality” function in what she theorized as a larger sex/gender system (179, 198; cited in Katz, 132). resolve it (as in a film like As Good As It Rich’s 1980 article, which has been widely cited Gets), I would argue that a queer/disability and reproduced since its initial publication, was studies (in productive conversations with one of the most extensive analyses of compul- disabled/queer movements outside the sory heterosexuality in feminism. I agree with academy) can continuously invoke, in or- Jonathan Ned Katz’s insistence that the concept is redundant because “any society split between der to further the crisis, the inadequate res- heterosexual and homosexual is compulsory” olutions that compulsory heterosexuality (164), but I also acknowledge the historical and and compulsory able-bodiedness offer us. critical usefulness of the phrase. It is easier to 376 | ROBERT MCRUER

understand the ways in which a society split be- Orthodoxy,” which mocks academic queer tween heterosexual and homosexual is compul- theory. Neither being disabled nor being gay sory precisely because of feminist deployments or lesbian in and of itself guarantees the criti- of the redundancy of compulsory heterosexu- cal consciousness generated in the disability ality. I would also suggest that popular queer rights or queer movements, or in queer theory theorizing outside of the academy (from drag or disability studies: Vincent herself is a lesbian performances to activist street theater) has often journalist, but her writing clearly supports both employed redundancy performatively to make a able-bodied and heterosexual norms. Instead of critical point. a stigmaphilic response to queer/disabled exis- 2. In an effort to forge a political connection be- tence, finding “a commonality with those who tween all women, Rich uses the terms “lesbian” suffer from stigma, and in this alternative realm and “lesbian continuum” to describe a vast array [learning] to value the very things the rest of the of sexual and affectional connections through- world despises” (Warner, Trouble, 43), Vincent out history, many of which emerge from histori- reproduces the dominant culture’s stigmapho- cal and cultural conditions quite different from bic response. See Warner’s discussion of Erving those that have made possible the identity of Goffman’s concepts of stigmaphobe and stigma- lesbian (192–199). Moreover, by using “lesbian phile (41–45). continuum” to affirm the connection between 7. Michel Foucault’s discussion of “docile bodies” lesbian and heterosexual women, Rich effaces and his theories of disciplinary practices are in the cultural and sexual specificity of contempo- the background of much of my analysis here rary lesbian existence. (135–169). 3. The incorporation of queer theory and disability 8. The consolidation of able-bodied and hetero- studies that I argue for here is still in its infancy. It sexuality identity is probably most common in is in cultural activism and cultural theory about mainstream films and television movies about AIDS (such as John Nguyet Erni’s Unstable Fron- AIDS, even—or perhaps especially—when tiers or Cindy Patton’s Fatal Advice) that a col- those films are marketed as new and daring.” laboration between queer theory and disability The 1997 Christopher Reeve-directed HBO film studies is already proceeding and has been for In the Gloaming is an example. In the film, the some time, even though it is not yet acknowl- disabled/queer character (yet again, in a tradi- edged or explicitly named as such. Michael tion that reaches back to An Early Frost [1985]), Davidson’s “Strange Blood: Hemophobia and the is eliminated at the end but not before effect- Unexplored Boundaries of Queer Nation” is one ing a healing of the heteronormative family. As of the finest analyses to date of the connections Simon Watney writes about An Early Frost, “The between disability studies and queer theory. closing shot [. . .] shows a ‘family album’ picture. 4. The collective projects that I refer to are, of [. . .] A traumatic episode is over. The family clos- course, the projects of gay liberation and queer es ranks, with the problem son conveniently dis- studies in the academy and the disability rights patched, and life getting back to normal” (114). movement and disability studies in the academy. I am focusing on a non-AIDS-related film about This chapter is part of my own contribution to disability and homosexuality, because I think the these projects and is part of my longer work in processes I theorize here have a much wider cur- progress, titled Crip Theory: Cultural Signs of rency and can be found in many cultural texts Queerness and Disability. that attempt to represent queerness or disability. 5. David Mitchell and Sharon Snyder are in line There is not space here to analyze As Good As It with many scholars working in disability stud- Gets fully; for a more comprehensive close read- ies when they point out the “ominous silence in ing of how heterosexual/able-bodied consolida- the humanities” on the subject of disability (1). tion works in the film and other cultural texts, See, for other examples, Simi Linton’s discussion see my article “As Good As It Gets: Queer Theory of the “divided curriculum” (71–116), and asser- and Critical Disability.” I do not, incidentally, tions by Rosemarie Garland-Thomson and by think that these processes are unique to fictional Lennard Davis about the necessity of examining texts: the MLA’s annual Job Information List, for disability alongside other categories of differ- instance, provides evidence of other locations ence such as race, class, gender, and sexuality where heterosexual and able-bodied norms (Garland-Thomson, 5; Davis, xi). support each other while ostensibly allowing 6. Disability studies is not the only field Vincent for tolerance of queerness and disability. The re- has attacked in the mainstream media; see cent high visibility of queer studies and disabil- her article “The Future of Queer: Wedded to ity studies on university press lists, conference COMPULSORY ABLE-BODIEDNESS AND QUEER/DISABLED EXISTENCE | 377

proceedings, and even syllabi has not necessar- Timothy Powell (39–60). New Brunswick: Rutgers ily translated into more jobs for disabled/queer UP, 1999. scholars. Davis, Lennard J. Enforcing Normalcy: Disability, 9. See my discussion of Butler, Gloria Anzaldua, Deafness, and the Body. London: Verso, 1995. and critical queerness in The Queer Renaissance: Erni, John Nguyet. Unstable Frontiers: Technomedi- Contemporary American Literature and the cine and the Cultural Politics of “Curing” AIDS. Reinvention of Lesbian and Gay Identities (149– Minneapolis: U of Minnesota P, 1994. 153). In the Gloaming. Dir. Christopher Reeve. Perf. Glenn 10. On the history of the AIDS Coalition to Unleash Close, Robert Sean Leonard, and David Strathairn. Power (ACT UP), see Douglas Crimp and Adam HBO, 1997. Rolston’s AIDS DemoGraphics. Lorde recounts Foucault, Michel. Discipline and Punish: The Birth of her experiences with breast cancer and imagines the Prison. Translated by Alan Sheridan. New York: a movement of one-breasted women in The Can- Vintage-Random House, 1977. cer Journals. Joseph P. Shapiro recounts both the Garland-Thomson, Rosemarie. Extraordinary Bodies: history of the Rolling Quads and the Indepen- Figuring Physical Disability in American Culture dent Living Movement and the Deaf President and Literature. New York: Columbia UP, 1997. Now action in No Pity: People with Disabilities Halperin, David, Saint Foucault: Toward a Gay Histo- Forging a New Civil Rights Movement (41–58; riography, Oxford: Oxford UP, 1995. 74–85). Deaf activists have insisted for some Katz, Jonathan Ned. The Invention of Heterosexuality. time that deafness should not be understood as New York: Dutton, 1995. a disability and that people living with deafness, Kushner, Tony. “Foreword: Notes Toward a Theater instead, should be seen as having a distinct lan- of the Fabulous.” In Staging Lives: An Anthology guage and culture. As the disability rights move- of Contemporary Gay Theater, edited by John M. ment has matured, however, some Deaf activists Clum, vii–ix. Boulder: Westview Press, 1996. and scholars in Deaf studies have rethought this Linton, Simi. Claiming Disability: Knowledge and position and have claimed disability (that is, dis- Identity. New York: NYU Press, 1998. ability revalued by a disability rights movement Lorde, Audre. The Cancer Journals. San Francisco: and disability studies) in an attempt to affirm a Aunt Lute Books, 1980. coalition with other people with disabilities. It McRuer, Robert. “As Good As It Gets: Queer Theory is precisely such a reclaiming of disability that I and Critical Disability.” GLQ: A Journal of Lesbian want to stress here with my emphasis on severe and Gay Studies 9.1–2 (2003): 79–105. disability. ———. Crip Theory: Cultural Signs of Queerness and Disability. New York: NYU Press, 2006. ———. The Queer Renaissance: Contemporary Ameri- WORKS CITED can Literature and the Reinvention of Lesbian and Gay Identities. New York: NYU Press, 1997. As Good As It Gets. Dir. James L. Brooks. Perf. Jack Mitchell, David T., and Sharon L. Snyder. “Introduc- Nicholson, Helen Hunt, and Greg Kinnear. TriStar, tion: Disability Studies and the Double Bind of 1997. Representation.” In The Body and Physical Dif- Berube, Michael. Life As We Know It: A Father, a Family, ference: Discourses of Disability, edited by Mitch- and an Exceptional Child. New York: Vintage-Ran- ell and Snyder, 1–31. Ann Arbor: U of Michigan P, dom House, 1996. 1997. Butler, Judith. “Critically Queer.” GLQ: A Journal of Norden, Martin F. The Cinema of Isolation: A History of Lesbian and Gay Studies 1.1 (1993): 17–32 Physical Disability in the Movies. New Brunswick: ———. Gender Trouble: Feminism and the Subversion Rutgers UP, 1994. of Identity. New York: Routledge, 1990. Patton, Cindy. Fatal Advice: How Safe-Sex Education ———. “Imitation and Gender Insubordination.” In Went Wrong. Durham: Duke UP, 1997. Inside/Out: Lesbian Theories, Gay Theories, ed- Rich, Adrienne. “Compulsory Heterosexuality and ited by Diana Fuss, (13–31). New York: Routledge, Lesbian Existence.” In Powers of Desire: The Poli- 1991. tics of Sexuality, edited by Ann Snitow, Christine Crimp, Douglas, and Adam Rolston. AIDS Demo- Stansell, and Sharon Thompson, 177–205. New Graphics. Seattle: Bay Press, 1990. York: Monthly Review Press, 1983. Davidson, Michael. “Strange Blood: Hemophobia Rubin, Gayle. “The Traffic in Women: Notes on the and the Unexplored Boundaries of Queer Na- ‘Political Economy’ of Sex.” In Toward an Anthro- tion.” In Beyond the Binary: Reconstructing Cul- pology of Women, edited by Rayna R. Reiter, 157– tural Identity in a Multicultural Context, edited by 210. New York: Monthly Review Press, 1975. . 378 | ROBERT MCRUER

Shapiro, Joseph P. No Pity: People with Disabilities ———. The Trouble with Normal: Sex, Politics, and Forging a New Civil Rights Movement. New York: the Ethics of Queer Life. New York: The Free Press, Times Books-Random House, 1993. 1999. Vincent, Norah. “Enabling Disabled Scholarship.” Watney, Simon. Policing Desire: Pornography, AIDS, Salon. Aug. 18, 1999. Available at http://www. and the Media. 2nd ed. Minneapolis: U of Minne- salon.com/books/it/1999/08/18/disability sota P, 1989. ———. “The Future of Queer: Wedded to Orthodoxy.” Wendell, Susan. The Rejected Body: Feminist Philo- The Village Voice 22 Feb. 2000: 16. sophical Reflections on Disability. New York: Rout- Warner, Michael. “Normal and Normaller: Beyond ledge, 1996. Gay Marriage.” GLQ: A Journal of Lesbian and Gay Williams, Raymond. Keywords: A Vocabulary of Culture Studies 5.2 (1999): 119–171. and Society. Rev. ed. New York: Oxford UP, 1983. PART VI

Disability and Culture CHAPTER 28

Cripping Heterosexuality, Queering Able-Bodiedness: Murderball, Brokeback Mountain and the Contested Masculine Body Cynthia Barounis

INTRODUCTION disability and homosexuality distance themselves from one another, each identity At the 2006 Academy Awards, Brokeback to some extent disciplining the other. Such Mountain took home three Oscars and mutual regulation, however, is not arbi- the independent film Murderball, which trary and I will argue that it is precisely the chronicled the lives of a group of quadriple- various historical linkages between queer- gic rugby players, was nominated for best ness and disability—their continual status documentary feature. The aesthetic eleva- as uneasy bedfellows—that bring us to this tion of these two particular films reveals reactionary cultural moment where able- much about how contemporary cultural bodiedness is queered and heterosexuality anxieties regarding queerness and physi- is defiantly “cripped.” cal disability are negotiated through visual Recently, critics have begun to explore culture. It’s not uncommon, of course, the ways in which a queer theoretical to see films that deal with disability and approach might deepen our engagement homosexuality at the Oscars. What was out with disability studies.1 Robert McRuer’s of the ordinary, however, was the extent to recent book Crip Theory: Cultural Signs of which Murderball and Brokeback Mountain Queerness and Disability opens up some each harnessed the normalizing powers of exciting possibilities for this dialogue. masculinity, presenting a narrative of gen- McRuer examines queerness and disability der that helped to generate mainstream as parallel sites of oppression; the homo- appeal in the box office and, more impor- sexual body and the disabled body are tantly, mainstream approval of a stigma- each regulated by a system of compulsory tized social identity. In these narratives, identity that privilege, respectively, hetero- disability and queer sexuality are not just sexuality and able-bodiedness. Thus dis- shown to be compatible with masculinity; ability studies, McRuer suggests, has much they are, more fundamentally, celebrated to gain by borrowing from the vocabulary as the logical extension of masculinity’s and framework of queer theory. “Cripping” excess. But the emphasis on masculinity a text, for example, may begin to serve the that these two films share is also the source same function for disability studies that of their antagonism. Indeed, a close read- “queering” did for gay and lesbian studies. ing of these two films exposes masculinity McRuer makes clear, however, that systems as the visual mechanism through which of heterosexual and able-bodied privilege 382 | CYNTHIA BAROUNIS

share more than just a family resemblance; both films, carrying the characters through not merely parallel, they are deeply inter- an apparent transition that turns out to be twined. Thus “compulsory heterosexual- no transition at all. ity” and “compulsory able-bodiedness” are If these films turn McRuer’s formula- often wedded together in a mutual effort tion inside out, however, it is only because to both conflate and regulate disability and they are reacting against the representa- homosexuality. McRuer’s analyses pro- tional history that he has so thoroughly ceed from this assumption, and through a exposed—one in which queerness and set of diverse cultural readings, he locates disability are made to appear as two com- the places where able-bodied and hetero- ponents of the same identity. Cinematic sexual privilege join forces. While McRuer history had been permeated with such details several rich sites of cultural resis- figures: medicalized images of the homo- tance, most of his mainstream examples sexual who is either psychologically or suggest that “heteronormative epiphanies physically diseased, spiritualized idealiza- are repeatedly, and often necessarily, able- tions of the desexualized disabled person, bodied ones” (McRuer, 2006: 13).2 What and nightmares of the injured heterosexual such epiphanic moments of able-bodied man whose acquired disability castrates heteronormativity require, he suggests, are him. Thus it is films like Born on the Fourth bodies that are flexible enough to make it of July and Philadelphia that constitute the through a crisis. And more often than not, cultural unconscious of both films. This is it’s the heterosexual and able body that the representational history that both films is brought out of this crisis, usually at the attempt to disavow, even as they structure expense of a disabled character who has themselves around it. But there may be a been queered or a queer character who has folly in too quickly dismissing those histo- been “cripped.” ries in which queerness and disability were In what follows, I will explore how the intertwined. Confronting and critically terms of this struggle have—in a short showcasing that past, I’d like to propose, time—become radically reversed. In may ultimately be what offers us our most Brokeback Mountain and Murderball, sys- effective strategies for cultural critique. tems of heterosexuality and able-bodiedness do not combine in order to produce REHABILITATING a stigmatized disabled/queer subjectiv- HETEROMASCULINITY ity. Instead, these two films set up a world where the mainstreaming of homosexual- To suggest that Murderball (2005), a recent ity stigmatizes disability and where claim- documentary chronicling the lives of a set ing an in-your-face crip subjectivity relies of quadriplegic wheelchair rugby athletes, on successful heterosexual conquest. It is is invested in heteromasculinity more than a universe where heteromasculine epiph- likely states the obvious to anyone who anies are never able-bodied ones, and has seen the film. The key players featured a queer male subjectivity forms in fun- throughout are rugged, athletic—and occa- damental opposition to disability. Here, sionally tattooed—trash-talking men whose bodies are not flexible, but resolute and ultimate goal is to crush the competition resistant to change. It is the very stub- and come home from the Paralympics with bornness of these bodies—their resistance a gold medal. The documentary eschews to a traditional narrative arc of character sentimentality in favor of a more hard- growth—that enables the visual rhetoric of edged realism that foregrounds its subjects masculinity to do the work that it does in as ordinary specimens of a male sports CRIPPING HETEROSEXUALITY, QUEERING ABLE-BODIEDNESS | 383 world. When they’re not giving (or getting) his best friend’s truck; his friend, unaware a beating on the court, they’re drinking and of Zupan’s presence in the vehicle, drove having sex with women, or bragging about home drunk and had an accident in which drinking and having sex with women. Zupan was thrown into nearby canal where Indeed, the film’s emphasis on the hetero- he held onto a branch for fourteen hours sexual potency of quadriplegic men is one before anyone discovered him. It’s a story of its most provocative features, and one that mixes ordinary masculinity with that has received widespread praise from extraordinary toughness and endurance. reviewers.3 Explaining the origins of their disabili- On a basic level, then, the film’s popu- ties, the rugby players relate similar tales larity can be considered a success for dis- of risky behavior associated with conven- ability cultural activism. It is an authentic tions of “tough guy,” “daredevil,” or even portrayal of a disabled subculture that just normative “frat boy” modes of mas- avoids the traditional narrative traps of culinity. Scott Hogsett was thrown off of a many mainstream disability films.4 The balcony during a fistfight; Keith Cavill was viewer is immediately directed to check his injured while attempting a set of dangerous or her well-intentioned sympathies at the motorcycle stunts; and while Bob Lubjano door, along with any preconceived notions explains that his amputated limbs are the about the fragility of the disabled body. And effect of a “rare blood disease,” the back of disabled sexuality, a taboo and uncom- the DVD release puts on a slightly differ- fortable territory for many non-disabled ent spin, characterizing his impairment viewers, is reclaimed with a vengeance.5 as the result of an encounter with “rogue Indeed, one of the difficulties in analyzing bacteria.” This act of anthropomorphosis Murderball is that its most radical features endows the simple act of getting sick with are simultaneously its most conventional. a quality of combat, aggressivity, and risk Thus, while non-disabled viewers may find and is characteristic of much of the rheto- their assumptions and stereotypes chal- ric surrounding the film and the sport in lenged by the masculine sexual bravado of general.6 Murderball’s quadriplegic rugby players, This is not the first time that the language there may be a simultaneous sense of relief of combat has been used to redescribe dis- at ironclad endurance of male heterosexual ability through a lens of masculinity. In privilege. Heterosexuality no longer func- “Fighting Polio Like a Man,” Daniel Wilson tions as evidence that a disabled masculin- analyzes a set of interviews that were done ity has finally been “cured”; instead, it’s the with male polio survivors during the Cold masculinization of disability that holds the War Era. Their narratives of rehabilitation power to rehabilitate heteronormativity were highly gendered: from its own gender trouble. Far from the typical narrative arc of Ironically, the very cultural values that a heteromasculinity lost through injury initially emasculated the paralyzed polio and reclaimed through rehabilitation, the survivor also provided the means by which documentary figures disability as not only a young male could construct a sense of masculinity consistent with society’s values reflecting but, in fact, amplifying a deeply and expectations . . . Recovery from polio constant heterosexual masculine selfhood. could be easily construed as a battle or Revisiting the night of his injury, for exam- contest against the virus, against the doctors ple, Mark Zupan explains doing “shots with and therapists, even against one’s damaged the girls” at a local bar to celebrate a soc- body and sense of self . . . This new sense of cer win before passing out in the back of manhood was constructed, or reconstructed, 384 | CYNTHIA BAROUNIS

not on school athletic fields or on fields of out shorts, removes his shirt, and wheels battle but in the rehabilitation facilities. out of the room. In the DVD director com- (Wilson, 2004: 121) mentary that accompanies this moment, Rubin and Shapiro discuss the “Clark Kent” In this narrative, the illness provides the logic underlying the scene: “He’s about to opportunity for the reassertion of mascu- transform into the rugby guy. There will be linity, but only insofar as illness is made the phone booth moment coming—you’ll into the obstacle which the subject must see when the garage door opens.” But while overcome in order to access normative cat- Clark Kent’s transformation always seemed egories of gender and sexuality. But while to involve a stripping down—his nylon suit these earlier accounts framed disability as showing through his bourgeois dress shirt, the foe to be vanquished, Murderball to the his glasses always a discardable acces- contrary claims disability as a weapon to sory—Zupan’s transformation is shown as be wielded against one’s foe. While Wilson a welding on of new parts.7 observes that the polio survivor’s narra- The moment that the camera zooms in tives “perform masculinity by demonstrat- on Zupan’s tattoo is the moment that the ing how these men . . . became men by the man becomes more than mere flesh. And it way they fought polio” (Wilson, 2004: 131), is precisely at that point that the intimacy we find here that the Murderball athletes and vulnerability of the scene’s opening is became men not by fighting their injuries eclipsed by a prosthetic remaking of the but, to the contrary, by acquiring an injury body—an elaborate new technology of that enabled them to fight. gender.8 We hear and see the rip of duct Indeed, if honorable combat is posi- tape, the whirring of the wheel, and the tioned as that which put the players in the clanging of metal. Later, we will watch an wheelchair, then it’s the chair itself that animated clip in which metal screws are that opens up larger, more mythic oppor- incorporated into the skeletal drawing of a tunities to accumulate battle scars. One spine; the image gradually fades into a shot reviewer admires the fact the rugby chairs of the actual scars that mark one player’s resemble “chariots of war”—a point that neck. Thus both man and chair are visually is in no subtle way driven home by one constructed as the product of custom-built interviewee who explains how the chairs state-of-the-art manufacturing. If, accord- are made: “What we do is we take these ing to the logic of the film, it was the ampli- wheelchairs and turn them into a gladia- fication of ordinary masculinity that led tor, a battling machine, a Mad Max wheel- to Zupan’s injury, then this extraordinarily chair that can stand knocking the living refashioned machinic masculinity is noth- daylights out of each other.” In this respect, ing less than mythic. the film’s opening sequence, characterized In a recent issue of Narrative, Rosemarie by Zupan himself as “preparing for battle,” Garland-Thomson has described the is worth examining. As the film begins, an players featured in Murderball as “[c]yborgs uncomfortable silence accompanies our composed of steel fused with flesh,” arguing only glimpse of Zupan’s vulnerability as that that, in the documentary, “[d]isability he slowly and painstakingly pulls his pants provides an unanticipated opportunity for down and off of his immobile legs. The boys to come into themselves as athletes camera sweeps erotically across his bare and men” (Garland-Thomson, 2007: 115).9 chest and limbs, eventually settling on the Garland-Thomson generously concludes, black tattoo that takes up the greater part however, that rather than reconstructing of his shin. Zupan pulls on a pair of work- heteronormative masculinity, Murderball CRIPPING HETEROSEXUALITY, QUEERING ABLE-BODIEDNESS | 385 provides us with “what Judith Halberstam gonna be, how much function I was gonna calls an alternative masculinity,” one have when I came out of my coma that I was which is “non-phallic” (Garland-Thomson, in, and I was about ready to wake up, and the 2007: 116). But to redefine disability nurses decided to give me a bed-bath in the through masculinity, as the documentary bed, and the one nurse got so excited that I got a woody, she ran outside and got my certainly does, is not necessarily to mom and showed her my, uh, erection. redefine masculinity itself. Though the film does present us with multiple images What is significant about this exchange is of the male cyborg, these images seem the swiftness with which the image of the to fall short of approximating Haraway’s impotent quadriplegic is replaced by the feminist technoscience or Halberstam’s image of the quadriplegic whose erection technotopic body.10 Indeed, Haraway’s is being celebrated by the community cyborg myth contests both the legitimacy of women surrounding him. While the of the masculinist cyborg and the overall woman’s question might well have opened male monopoly on technoculture. up a conversation about alternative sexual Repudiating narratives of origin, cyborgs practices that don’t privilege phallic and technotopic bodies are not aimed at potency, the response ultimately ends helping “boys to come into themselves as up both creating a heteronormatively athletes and as men” but, rather, at creating functional elite among the disabled while alternative queer temporalities in which simultaneously generalizing the situation boys sometimes become something other of that elite to the entire quadriplegic than men, and girls sometimes become community. something other than women. There is, however, at least one Additionally, Garland-Thomson’s claim “alternative masculinity” present in that Murderball creates an “innova- Murderball. Following an exchange in tive, non-phallic, alternative sexuality,” which an American player accuses former (Garland-Thomson, 2007: 116) focuses U.S. Coach Joe Soares of “betray[ing] his on a single reference to cunnilingus while country” by leaving to coach team Canada, overlooking the dynamic staging that priv- the camera cuts to an evening scene in the ileges heterosexual phallic penetration as hotel room where all four of the featured the measurement of the players’ masculin- U.S. players, along with two or three others, ity. While Mark Zupan certainly mentions play a game of modified poker. The circular that most wheelchair athletes “like to eat movement of the camera and its various pussy,” it is important to point out that this close-ups on individual players’ faces as comment is embedded within a sentence they banter back and forth creates a tightly that begins with Zupan gesturing down- sealed homosocial space within which wards and reassuring the viewer: “That still this “alternative masculinity” is rigidly works.” In another scene, the ability to have disciplined. Within the confusion of a lively an erection is somewhat taken for granted dialogue, we witness a lanky, long-haired as an essential feature of quadriplegia. teammate named Sam defend Soares’s After reassuring an attractive able-bodied decision to coach the Canadian team. The woman that the three players sitting at the dialogue runs as follows: table are all fully functional, Scott Hogsett relates the following story: Sam: On a professional level, I don’t think there’s anything wrong with it. When I first got injured, I was in intensive Andy: That’s number two on the list of care, and, uh, everyone was curious how I was most stupid things I’ve ever heard 386 | CYNTHIA BAROUNIS

at this camp. I heard Sam say that he last word, and Sam—along with his anti- doesn’t like big tits and he’d dump normative desires—are silenced for the a girl with big tits, if everything was remainder of the film. perfect—but, if she has big tits, [imi- I have thus far suggested that in both the tating Sam] “it’s over, they get in the film and its reception, excessive hetero- way” masculinity is celebrated as the originary Sam: I like athletic girls. That’s what I said all along that night when they asked moment out of which disability is gener- me. ated as the inevitable consequence. But Zupan: You knew you weren’t going to live where does this leave disabled women, and that one down. the ideological status of femininity more Sam: I’m okay with my sexuality. I can say generally? By coding disability as a property that. I don’t like big tits. of heterosexual masculinity, Murderball Zupan: You like shoes though. simultaneously codes able-bodiedness as a Sam: I do like shoes. property of heterosexual femininity. Within the logic of the film, it’s the gender-norma- At this point, everyone laughs and the tive able-bodied woman who reinforces camera pans to the mechanical card shuf- heteromasculine potency.13 Such women, fler that happens to be in motion. This is in fact, are central to the film’s network of one of the most revealing scenes in the film associations, serving a specific and limited because it invokes multiple vectors of the purpose—to humanize the disabled play- gender trouble that the film is careful to ers by occupying their traditional role in the guard against. On the one hand, it immedi- narrative of heterosexual conquest. Thus ately solidifies the link between heteromas- we see women in various contexts, but they culinity and patriotism. As I have argued, are always feminine, always heterosexual, physical disability has been positioned and always engaging in activities that sup- within the film as the manly consequence port and reinforce the heterosexual mas- of both heteromasculinity and honorable culinity of the players. They are featured as combat. This is why Sam’s moral defense of friendly nurses, cheering sections at games, a known “traitor” leads the players to move concerned mothers, and most importantly, abruptly into an interrogation of Sam’s proof that whatever other effects the injury heteronormativity. Though there’s noth- has had on their body, the men’s ability to ing homosexual about a man who “like[s] engage in heterosexual, penetrative sex is athletic girls,” there is something queer, not compromised.14 according the film’s logic, about a man But because the film has polarized dis- who lacks desire for the appropriate object ability as a property of athletic heteromas- choice—in this case, “a girl with big tits.” culinity and able-bodiedness as a property “Big tits” are, of course, functioning here of heterosexual, non-athletic femininity, as a metonym of idealized femininity, with there is no longer a viable space for the all of its attendant associations of passivity, physically disabled athletic woman; her nurturance and non-athleticism.11 Sam’s body is not only rendered unintelligible but interest in “athletic girls” thus feminizes becomes a palpable threat to the narrative (and arguably queers) him to the extent glue that holds masculinity, disability, and that it’s framed as a desire for masculinity heteronormativity firmly together. Wendy (albeit a masculinity that is attached to a Seymour has suggested that the same female body).12 While this sequence opens logic that masculinizes the quadriplegic up some fascinating tensions, the soft roar or paraplegic man also functions to both of the mechanical card shuffler has the masculinize and desexualize the quad- CRIPPING HETEROSEXUALITY, QUEERING ABLE-BODIEDNESS | 387 riplegic or paraplegic woman (Seymour, amputees playing volleyball. Significantly, 1998: 120). This brings up a set of thorny they are all low to the ground, and filmed issues involving whether or not disabled (perhaps unavoidably) from above. Not women’s exclusion from the structures of only does the angle diminish their size conventional heterosexual femininity can and power, but also they are absent of any open up other liberatory possibilities, even type of prosthesis or equipment and none as such exclusions simultaneously police of them are using wheelchairs. Given that and regulate their sexuality.15 While a thor- prosthetics and wheelchair technology ough negotiation of these issues is beyond have earlier in the film been powerfully the scope of this paper, the fact remains deployed to signify and naturalize dis- that Murderball explores neither side of the abled masculinity, and given that this clip debate. Disabled women, and particularly is sandwiched between clips of Paralympic disabled female athletes, are not celebrated male sports (all of them requiring varying as having been liberated from oppressive levels of prosthesis), it may be plausible conventions of gender. Nor are they given to argue that the framing of these female access to normative femininity; visually, athletes functions to neutralize any threat they are never made into objects of the voy- to disabled masculinity that their presence euristic male gaze that, after Laura Mulvey’s might pose. classic 1975 article, has become common The only other scene in which disabled currency in discussions of cinematic spec- women are presented in an athletic capac- tatorship. Neither, interestingly, are they ity is during the documentary’s final scene, victims of “the stare,” a visual dynamic as the players teach a group of newly dis- coined by Garland-Thomson to encapsu- abled Iraq War veterans how to play the late the revulsion of the able-bodied viewer game. Between clips, we see two young whose lengthy hostile gaze at a “freakishly” women, though very briefly and in a lim- embodied other is emptied of sexual desire ited context. Early in the scene, the camera (Garland-Thomson, 1997: 26). Indeed the abruptly cuts to a young woman standing few images of disabled women that the doc- with a basketball under one arm—her other umentary presents function more as a set arm visibly absent. The shot—lasting for no of fleeting and brief snapshots that, while more than two seconds—catches her from easy to miss, do momentarily interrupt the the neck down; in fact we are only able to temporal, and often verbal, logic through identify her as female because her white which these “boys” become “men.” These sports bra is visible underneath her white more or less static images haunt the film’s t-shirt. Because she is decapitated by the perimeter, a subtle threat to the coherence frame, we are unable to establish any filmic of a narrative that celebrates quadriplegia identification with her. Simultaneously, her as the natural outcome of the hypermascu- disability and her desexualized wardrobe line male body. prevent the viewer from establishing her as Indeed, even the most attentive viewer an object of desire via conventional modes might, on a first viewing, miss the few of cinematic spectatorship. Unlike the glimpses that are to be had of disabled able-bodied girlfriends of the quad rugby female athletics. The first opportunity isn’t players, or even the Paralympic volleyball until just before the final dramatic show- players, this female body becomes visually down between the U.S. and Canada at the unintelligible within the logic of the film.16 2004 Paralympics. In a brief montage that Later in the scene, the camera pans showcases a variety of Paralympic sports, upwards from the feet of an individual wear- there is a two-second clip of female leg ing one prosthetic leg. As the frame reaches 388 | CYNTHIA BAROUNIS

her chest, and then her face, we realize quad rugby. But interestingly, the chair that that it is a young, female veteran. Her shirt she’s using, though present by implication, showcases the American flag and her gaze is rendered invisible in these clips—we is intently fixed on something outside the see her only from the elbows up. If the frame. She’s attractive and her demeanor logic of the film has transformed the rugby exudes fortitude. In a sense, we have finally chair into a metonym for a heteronorma- met the “athletic girl” whose specter was tive masculinity that is reserved only for both invoked and repressed during the male bodies, then her temporary use of earlier poker scene.17 This one, however, it becomes an appropriation that cannot is not quite so quick to be dispelled. The be accommodated by the documenta- camera quickly cuts to two male amputees ry’s visual economy. The deconstructive who are wearing similar leg prostheses. potential of her participation is ultimately While the purpose of this moment was no contained as the scene’s primary drama doubt to establish the effect that the Iraq resumes. The young male veteran finally War continues to have on American bod- throws a successful pass, establishing that ies, it serves simultaneously to establish a masculinity has ultimately been returned solid identification between the disabled to a male body. But while most of the docu- woman and her male counterparts. The mentary functions to contain the presence entire progression lasts only eight seconds, of the disabled female athlete, the film’s so it’s easy to miss. But, I want to suggest, epilogue ultimately lays bare some of this these eight seconds are what the rest of the tension when it features Bob Lubjano kiss- documentary labors to repress. While most ing (albeit chastely) his girlfriend, who is of the documentary features women only identified as a Paralympic swimmer. We in conventional, able-bodied roles that would do well to take this moment, as well reify masculinity by performing its oppo- as the others that preceded it, as an oppor- site, this moment confronts the viewer tunity to reflect on and draw out the gender with an unapologetic assertion of another trouble that complicates not only the film, type of “alternative masculinity,” one that but also the cultural past that has conflated is attached to a female body. queerness and disability. But, although this moment lasts longer than any other depiction of a disabled “GETTIN’ OUT WHILE I STILL woman in the film, it too is quickly redi- CAN WALK” rected and contained by the dominant narrative of male heteromasculinity at work in In some ways, the only thing that Murder- the film. From here, the film dives quickly ball (2005) and Brokeback Mountain into the central tension of the scene. (2005) have in common is their release Masculine athleticism has once more date. Murderball is about traveling the found its proper object as a young man in world to represent one’s country; Brokeback a wheelchair expresses doubt in his abil- Mountain is about spending a lifetime in the ity to throw the ball. This first throw fails country. Murderball embraces the urban to reach its intended target, but after some technologized body; Brokeback Mountain’s hearty encouragement from the old pros, rural naturalism makes even the telephone his second attempt is a success. The girl we look like technological excess. What the have just seen is cut sporadically into this films do share, however, is a strategic narrative, and in these brief half-second deployment of masculinity that normalizes clips she appears to be actively involved in a historically marginalized population. But (and indeed taking delight from) a game of if Murderball’s celebration of quadriplegia CRIPPING HETEROSEXUALITY, QUEERING ABLE-BODIEDNESS | 389 is rooted in a narrative of heteronormative strip off their clothes and jump from a peak masculinity that disciplines and represses into the stream below. But on Brokeback queerness, then Brokeback Mountain is Mountain, the water is never too shallow conversely invested in particularly able- and getting thrown from a horse leaves bodied masculinity that normalizes homo- only some minor bruising.20 sexuality by simultaneously disciplining Part of Jack and Ennis’s talent for remain- disability. ing able-bodied, however, is tied directly to It would be difficult to dispute the fact gay male sexuality. In several scenes, Ennis that Jack and Ennis emblematize a particu- is presented with what ultimately becomes lar brand of frontier masculinity, one that a choice between either facing harsh (and has been until now historically off-limits potentially debilitating) natural condi- in mainstream cinematic representations tions or putting himself in a position that of homosexuality. But what Brokeback could lead to a homosexual encounter. Mountain did was more than simply sug- Indeed on several occasions, the desire to gest that cowboys can be gay too; it implied remain able-bodied sends Ennis directly that cowboys are gay precisely because into Jack’s arms. Thus the first sex scene they’re cowboys.18 Gay male sexuality in unfolds out of Jack’s concern for Ennis’s the film seems to spring directly from health. Having had too much to drink, an inborn aggression and competitive Ennis decides to sleep outdoors despite instinct. It is figured as a natural corollary Jack’s warning, “Freeze your ass off when to male horseplay—the violent, almost that fire dies down. Better off sleepin’ in the primitive, crashing together of two male tent.” But it is only when Jack’s prediction bodies. And above all else, it is organic.19 comes true and Ennis seems on the verge Thus in the original story, we find Ennis in of frostbite that he finally acquiesces; the his first sexual encounter with Jack draw- two men share a blanket and their physi- ing upon what appears to be a physically cal proximity quickly leads to their first innate drive: this was “nothing he’d done sexual encounter. On another occasion, a before, but no instruction manual needed” storm breaks out, and Jack and Ennis can (Proulx, 1999: 259). Unlike the machinic be observed shouting to one another in heteromasculinity glorified in Murderball, the entry flap of the tent. “Them sheep will this homosexual manliness is born directly drift if I don’t get back up there tonight!” out of the earth. yells Ennis. Jack replies, “You’ll get pitched This organicism partially explains the off your mount in a storm like this. You’ll able-bodied ideologies that underpin Jack wish you hadn’t tried it! It’s too cold! Close and Ennis’s masculinity. The stubbornness it up!” Thus Ennis’s masculinity lies in his of their genders becomes to some extent frontier brand of self-discipline, expressed the stubbornness of their physical bodies through his avoidance of unnecessary risk themselves. The Darwinian logic of the tra- and his knowledge of his own limitations ditional frontier narrative places the male in the face of nature. If his masculinity is body in harsh conditions; it is the fittest of the earth, then his respect for natural who survive, the ablest bodies that endure. law is what causes him ultimately to listen Thus the same excessive masculinity that to Jack’s advice. Having decided to keep Murderball celebrates as the cause of dis- Ennis’s body out of danger, the two men ability becomes, in Brokeback Mountain, close the tent flap, and presumably spend the skill for keeping one’s spine intact. the night having sex. Thus the rugged Upon their first trip back to the mountain, homosexual masculinity of the expansive the first thing that Jack and Ennis do is outdoors appears to carry sort of curative 390 | CYNTHIA BAROUNIS

power that keeps male bodily integrity to quit this job. She says I’m gettin’ too old firmly intact. to be breakin’ my back shovelin’ asphalt.” But while Jack and Ennis constantly Thus, the “up here” that Jack refers to in encounter and avoid threats from the his conversation with Aguirre is the place wilderness they spend the summer where stubborn gay male bodies contend inhabiting, the real threat of sickness, with the elements and, thanks to the balm contamination, and disability comes from of same-sex desire, emerge from this face- the world of heterosexual domesticity that off intact. “Down there” is the heterosexual lies below the mountain. Thus Joe Aguirre domestic space where male bodies are travels up the mountain to deliver news subject to pneumonia, vulnerable to of Jack’s sick uncle down below, on his the Vietnam draft, stricken with attacks deathbed as a result of pneumonia. “Bad of debilitating grief, responsible for news,” Jack replies, “There ain’t nothin’ I asthmatic children, and exposed to can do about it up here, I guess.” Aguirre literally “back-breaking” labor. Indeed, responds, “There’s not much you can do it becomes impossible to find an able- about it down there, neither. Not unless bodied domesticity anywhere in the film.21 you can cure pneumonia.” Aguirre’s While domesticity is certainly framed as reply is no doubt designed to emphasize heterosexual, it is also a site that is implicated Aguirre’s position as an unsympathetic in the production of both disability and boss and foreground Jack’s exploitation as femininity (Ennis and his wife produce a working-class laborer. But it only daughters) and is thus no place for the simultaneously emphasizes the contagion able body of hypermasculine gay cowboy. that spreads “down there” in the realm of It should, of course, be pointed out that rural domesticity, and the exposure to illness the acts of caring for asthmatic children, that Jack and Ennis avoid in the able-bodied hearing about sick uncles, and working in “up here” of male homosexual freedom. physically taxing occupations never actu- Thus the progression that starts off Jack ally threaten to render Ennis literally dis- and Ennis’s descent from the mountain abled, and neither would any of the women evokes multiple images of Jack and Ennis’s who inhabit Ennis’s heteronormative work- newly vulnerable bodies. Jack mentions ing class household identify themselves as the possibility that the draft will prevent a person with a disability. Indeed, by invok- him from working on the mountain the ing these images of sickness and injury, I am following summer. The expansive sky that gesturing less towards the presence of a con- seemed unlimited on the mountain peak is crete disabled identity within the film and claustrophobically framed by the walls of more towards Jack and Ennis’s construction the alley where Ennis doubles over, retching as able-bodied subjects who are haunted by in grief at his separation from Jack. Ennis’s specters of corporeal fragility, specters that married life consists of a domestic routine originate from the outside—and in their that involves caring for his daughters’ case, the heterosexual landscape. In this runny noses and coughs. In an effort to sense, I am actively following McRuer’s sug- convince Ennis to move the family to gestion that we “attempt to crip disability more densely populated area of the town, studies, which entails taking seriously the Ennis’s wife Alma argues, “I’m scared for critique of identity that has animated other Jenny, scared if she has another one of ’em progressive theoretical projects, notably bad asthma spells.” To top it off, Ennis’s queer theory” (McRuer, 2006: 35). McRuer coworker delivers a monologue in which suggests that, like the “gender trouble” he explains, “My old lady’s tryin’ to get me that underlies heterosexuality, we might CRIPPING HETEROSEXUALITY, QUEERING ABLE-BODIEDNESS | 391 similarly understand “ability trouble” as literary text upon which the film is based. “not so much the problem of disability but However, because of the film’s uncommon the inevitable impossibility, even as it is faithfulness to the short story—almost all made compulsory, of an able-bodied iden- of the dialogue in the film is taken word- tity” (McRuer, 2006: 10). Just as my previous for-word from the story and there’s barely reading of Murderball suggested that it was a single scene left out—such analysis seem not homosexuality but rather the hetero- justified. In a film that runs over two hours, sexual Sam and the disabled female athlete it makes sense that the screenwriters who held the power to queer the film’s het- might have cut some of the dialogue that eromasculine narrative, so too in Brokeback merely extends a point that could be made Mountain it is not disability per se but a more concisely. Thus what becomes clear set of failed performances of health and when we trace this conversation back to physical integrity that mark the hetero- the original source is the extreme threat domestic sphere as a threatening site of that heterosexual domesticity poses to the “ability trouble.” able body of the gay cowboy. The rodeo The threat that heterosexual domesticity to some extent functions as an extension levels against masculine able-bodiedness of heterosexuality. It’s where Jack met his is perhaps most explicit in Jack and Ennis’s wife, and it is, at the beginning at least, the first conversation after having reunited way he has been financially supporting his following a four year separation. After family. But it also might break his back. having sex at a motel, they discuss their The stakes are raised when Jack, explaining new roles as husbands and fathers. Jack that he “don’t got the bones a keep getting explains, “Went down to Texas for rodeoin’. wrecked,” proposes that he and Ennis That’s how I met Lureen.” When Ennis asks, settle down “in a little ranch together” “Army didn’t get you?” Jack replies, “No, too (Proulx, 1999: 268). Indeed, this is where busted up. And rodeoin’ ain’t what it was in the short story sets up an ultimatum much my daddy’s day. Got out while I could still like the ones I outlined earlier; a choice walk.” This process of getting “busted up” must be made between a future of disabled receives an even more elaborate treatment heterosexuality or a future of able-bodied in the original story. In the same scene, homosexuality. when Ennis asks if the “army got [Jack],” At the same time, however, Jack’s sexu- Proulx has Jack reply: ality occasionally complicates the able- bodied queer masculinity that the film They can’t get no use out a me. Got some attempts to naturalize. In particular, when crushed vertebrates. And a stress fracture, Jack travels south of the border to engage the arm bone here, you know how bullridin in what one might consider “risky” anony- you’re always levern it off your thigh?—she mous sex with a male prostitute, the viewer give a little ever time you do it. Even if you might be reminded of one association that tape it good you break it a little goddamn the film labors to repress—the historical bit at a time. Tell you what, hurts like a bitch afterwards. Had a busted leg. Busted in three connections between gay culture and the 22 places . . . Bunch a other things, fuckin busted AIDS epidemic. It is worth noting here ribs, sprains and pains, torn ligaments . . . I’m that AIDS has been culturally constructed gettin out while I still can walk. as a disease originating not only from (Proulx, 1999: 266) homosexual men, but also as an “immigrant infection” that, originating from the When making argument about a film, it outside, threatens to infiltrate and con- can be risky to draw evidence from the taminate the United States population. 392 | CYNTHIA BAROUNIS

Subjected to mandatory HIV testing dur- public health, transformed instead into a ing the Regan era, immigrants joined gay life-affirming practice structured around a men as one of the largest projected men- principle of rural able-bodied masculinity. aces to public health. This scapegoating But because Brokeback seems so powerfully of immigrants and queers functioned to invested in disavowing the political legacy of externalize the threat of HIV infection, AIDS activism, along with the historical pro- making it easy for officials to ignore the cess by which the epidemic has imprinted more important issues of prevention, treat- the queer community with the stigma of ment, and anti-discrimination (Brier, 2001: disability, some of those repressed elements 253–270). While Jack’s illicit encounter with do surface from time to time within the the Mexican prostitute takes place before narrative, particularly through Jack in the the start of the AIDS epidemic, and while moments I have just discussed. the prostitute himself is not attempting to I’d like to conclude this section by ten- emigrate to the United States, the scene on tatively pointing to a verbal/visual divide some level still resonates with the cultural similar to the one that I referenced in my meanings that have conflated the tightly discussion of Murderball’s narrative per- sealed national body with the healthy formances of heteromasculinity and the body—a seal that Jack breaks when he static images of the disabled female body crosses back and forth over the border.23 that momentarily stall those narratives. If we are to read this encounter with racial Though I have largely relied on verbal otherness as metaphoric of the “infected” examples to describe the strategies thor- national body, then this becomes a moment ough which the film constructs its ethos of when the narrative becomes haunted by able-bodiedness, the moments that most its own future. And it is a future in which powerfully “crip” that narrative are gener- the representational linkage between male ally mute, relying instead on the transmis- homosexuality and AIDS—a linkage, in sion of visual cues. When Jack visits Mexico, other words, between queerness and dis- his encounter with the prostitute is mark- ability—will loom large. edly silent; and while Lureen’s monotone In this context, it’s worth noting that rehearsal of the official narrative of Jack’s Brokeback Mountain has been repeatedly death accompanies Ennis’s entirely differ- hailed as the first “mainstream gay movie ent visual reconstruction of the scene, the from Hollywood” since Brian Demme’s images of hate crime violence that confront 1992 film Philadelphia and in numerous the viewer in this clip are entirely absent of reviews the film’s detachment from AIDS sound, and differently filmed, playing like discourse is celebrated (Ehrenstein, 2006: a grainy home video without audio. The 41). Thus Brokeback emerges from a queer intrusion of these brief images gestures filmic tradition in which the associations toward a queer-crip cultural past that can- between homosexuality and AIDS have not, ultimately, be spoken. been largely figured and can, in this But why not take such moments as context, be read as participating in a repre- opportunities to critically consider, and sentational backlash against homosexual- perhaps occasionally even claim, those ity’s place in the AIDS narrative.24 The film histories, both representational and mate- escapes these associations by a feat of geo- rial, in which queerness and disability are graphical and temporal dislocation, as the brought into uneasy proximity? What, ulti- narrative ends just before the AIDS outbreak mately, is to be gained by the current cul- in the United States. In this context, bare- tural impulse to dissolve this complicated, backing loses its association with threats to though albeit troubled, partnership? While CRIPPING HETEROSEXUALITY, QUEERING ABLE-BODIEDNESS | 393 critics of both films are certainly justified for the representations of disabled women and in celebrating the strategies through which the linkages between femininity and illness. newer films are defiantly cutting the ties Indeed, many of the early canonical texts of feminist literary criticism focus on relationship that have historically bound queerness to between femininity, authorship and mental disability, I want to suggest that we remain health, Sandra Gilbert and Susan Gubar’s The wary of accepting discourses that celebrate Mad Woman in the Attic being perhaps the most one marginal identity at the expense of well-known example. More recently, however, another, and that we continue to ask who scholars like Rosemarie Garland-Thomson have prioritized the physical disability, as opposed gets left out of this framework completely. to mental illness, in their analysis as well and While male homosexuality and male dis- brought race to bear on these issues in important ability may be regulating one another in ways. these films, what is perhaps most perplex- 2. McRuer does, however, provide a notable ing is that it is not the able-bodied gay man counterexample in his observations regarding ableist rhetoric in the popular television show whose existence is disavowed Murderball Queer Eye For the Straight Guy. but the physically disabled woman. And 3. Matthew Leyland, for example, offers the it is not entirely the heterosexual man following praise in Sight and Sound: “Dispelling who is linked to a disabling domesticity misconceptions in an unfussy fashion, Shapiro in Brokeback Mountain, but primarily the and Rubin . . . venture into taboo territory with an X-rated debate about quad sex. As well as heterosexual woman. Transgender identity answering questions most disability movies are is meanwhile rendered unthinkable and afraid to ask, the sequence is very funny. ‘The race is dealt with problematically, at best. more pitiful I am, the more [women] like me,’ Of course, there is undoubtedly something one wheelchair user chirps unapologetically’” productive happening when mainstream (Leyland, 2005: 70). 4. In The Cinema of Isolation, Martin Norden films begin to challenge the stereotype of identifies one such narrative trap as the the feminized or asexual male quadriple- tendency for Hollywood to put well-known, able- gic, or when those same films acknowledge bodied actors in disabled roles. Like a straight- that male homosexuality is not intrinsi- identified actor playing a gay role, the casting cally bound up in illness. But these libera- of able-bodied stars in disabled roles becomes an opportunity for the able-bodied actor to tory representations are accompanied by demonstrate superior Oscar-quality acting skills a set of political limitations that demand by successfully impersonating what the public greater scrutiny. Rather than replace one would view as extreme difference or otherness regime of normalcy with another, we would (Norden, 1994: 2). do well to transform this uncomfortable 5. In his comparative reading of the armless Venus de Milo and a quadriplegic woman, Pam representational history into an oppor- Herbert, Lennard Davis draws our attention tunity for continuing the difficult work of to the able-bodied assumptions underlying coalition building. Only then can we really Western standards of physical beauty. Thus achieve the cyborg myth of breaking with Davis explores “how people with disabilities our origins to fashion new and unthinkable are seen and why, by and large, they are de- eroticized” (Davis, 1995: 128). The film’s intense futures. eroticization of quadriplegic men can then be read as a radical reclaiming of that which NOTES has long been denied to disabled people; that this is accomplished through heteronormative My thanks to Lennard Davis for his feedback on as masculinization and at the expense of disabled well as support for this essay. people whom are further “queered” by the logic of the film, however, is a tension that this section 1. While the relationship between disability and explores in greater detail. gender has often been theorized, many of these 6. In her magazine piece “Seat of Power,” Melissa accounts have grown out of a feminist concern Davis Haller quotes James Gumbert (the coach 394 | CYNTHIA BAROUNIS

for Team USA) as pointing out that “Most of successful identification with his father must these guys didn’t get into their chairs because be accompanied by a disavowal of the feminine they were timid . . . They were daredevils.” The within himself, a punishment of effeminacy in player featured in the piece agrees: “ ‘We’re true other men, and a willingness to turn his mother athletes,’ he says. ‘We have the same rivalries into an object of desire (Kimmel, 2005: 34). If and passion about our sport as anyone’” (Haller, Murderball follows the traditional narrative 2005: 22). of masculinity that Kimmel has outlined, the 7. The celebration of the prosthetic dimensions of players’ masculinity ultimately depends on the Zupan’s masculinity also constitutes a subversion sexual acquisition of the girl whose “big tits” of previous stereotypes. Norden points out the prove that she’s everything that he’s not. common villainization of disabled male figures 12. Interestingly, the player commentary not who are “aided by . . . high tech prostheses” and only conflates Sam’s queer object choice with “whose many battle injuries have transformed feminization but also with a lack of sexual him into a walking wonderland of bionic effects . . . potency, and a general inability to engage in more machine than man” (Norden, 1994: 293). phallocentric penetrative sex. While watching 8. Perhaps picking up on the prosthetic dimensions the poker scene with the commentary function of the sport equipment, one reviewer has turned on, one hears the players add: “We tried to remarked upon a quad rugby player who get Sammy laid the whole year, but he’s just not a “handles the ball as if it were a part of his body” closer. He’s had some opportunities but Sammy (Bennett, 2000: 60). cuddles.” Sam’s decision to not be a “closer” 9. My thanks to Megan V. Davis for this reference. simultaneously resists the narrative closure that 10. Examining the work of three different visual protectively bounds heteromasculine sexuality artists, Halberstam defines this technotopic in the film. body as “a body situated in an immediate and 13. This argument is not an entirely new one; in the visceral relation to technologies—guns, scalpel, context of disabled veteran films, Martin Norden cars, paintbrushes—that have marked, hurt, argues that “Movies continue to depend heavily changed, imprinted, and brutally reconstructed on the idea of women acting as remasculinizing it” and notes that “in all three instances, the agents to facilitate the protagonists’ Oedipal impact of technological intervention is to adventures, particularly those featuring disrupt gender stability . . . [suggesting that] we embittered veterans” (322). Other films didn’t should locate femaleness not as the material necessarily rely on woman per se, but resolved with which we begin nor as the end product of similar tensions by situating the character among medical engineering but as a stage and indeed as “advancements in science and technology in fleshly place of production” (Halberstam, 2005: the form of highly potent prosthesis” (322). 116–117). The men of Murderball are certainly Both features, however, appear to be at play in “situated in an immediate and visceral relation Murderball. to technologies that have marked” each of 14. To this effect, one reviewer celebrates the “lusty them. But while for Halberstam the technotopic montage” which illuminates the “intriguing body “disrupts gender stability” and showcases reasons why some women are particularly anatomical sex as neither the “material with attracted to quadriplegic men.” In another which we begin nor as the end product of scene, the viewer is able to appreciate—and medical engineering,” the technologized perhaps envy—Zupan’s ability to attract an masculinity of the quad rugby athletes is visually able-bodied, conventionally feminine woman framed within a narrative of continuity that who is featured in a black bikini on the side privileges the anatomical origin of maleness and of a pool. Her interview portions in the film the technologically enhanced final product of mainly function to emphasize the ways in which heteronormative masculinity. What might have partnership with a quadriplegic man brings out become a radical celebration of technology’s the “mothering instinct” in women, a quality that roles in producing alternative or queer modes of she suggests could be what “attracts a lot of girls embodiment here collapses into a reification of to quadriplegics.” Cut alongside of a clip that gender difference. features her tying Zupan’s shoes, the implication 11. In The Gender of Desire, Michael Kimmel is clear. has argued that hegemonic masculinity is 15. For a more thorough analysis of these issues, fundamentally rooted in a homophobic see Rosemarie Garland-Thomson’s “Integrating impulse to simultaneously deny and desire the Disability, Transforming Feminist Theory.” feminine. If a boy is to access patriarchy, his 16. One analysis that I am omitting here, which is CRIPPING HETEROSEXUALITY, QUEERING ABLE-BODIEDNESS | 395

beyond the scope of this paper, is the similarly 18. In this article, my use of the term “gay” should problematic image of the disabled black man be read as a shorthand for male same-sex desire who shares the frame with this woman. While and homosexual erotic expression. By employing the frame catches her from the neck down, it in this context, I am by no means making an it simultaneously catches only the top right identity claim about Jack and Ennis—indeed, in quadrant of his face in the bottom left corner both the film and the short story, both men make of the frame. The only other exposure that it clear that they don’t self-identify as “queer.” the viewer has to African-American disabled It is important, however, to acknowledge the masculinity are two entirely out-of-context impact that this film has had on members of the interviews in which a disabled black man (whose gay community, many of whom have identified name, team affiliation, and general relationship with and claimed the characters, as well the to the sport we never learn) describes some of effect it has had on mainstream understandings the tensions he encounters when trying to pick of the gay community. Thus by referring to “gay” up girls and elaborates upon the “modified masculinity or “gay” sexuality, I am referring to doggy-style” that he has perfected during sex. the representation of a behavior that has had a The relative absence of African-American male significant impact on the cultural understandings quadriplegics from the film suggests that the of a constructed identity category and the players’ disabled masculinity is not only invested communities that have been formed around that in heterosexuality but in whiteness. The brief category. airtime given to African-American masculinity 19. If Murderball follows a Freudian narrative in functions only to rhetorically infuse the sexuality which a disavowal of the feminine in the self of the featured (white) quadriplegic men with entails the transformation of women into objects the primitive potency stereotypically projected of desire, then in Brokeback Mountain, the onto African-American masculinity. That this disavowal of the feminine in the self involves no particular African-American man happens such transformation; in Brokeback Mountain, to be describing the “doggy-style” position to embody frontier masculinity is to disavow only exaggerates and exploits the dangerous the feminine, period. Reviewer Constantine cultural stereotypes that link African-American Hoffman puts it well when he points out that sexuality to animalism and aggressivity. Thus, “Brokeback forced us to face the fact that the while this moment might be read as a sensitive more ‘manly’ a man is the more he will enjoy the inclusion of a non-white voice in dialogue company of other manly men” (Hoffman, 2006: about male quadriplegia and sexuality, I 26). Indeed, if twenty-five years ago, Adrienne would argue that it ulitmately collapses into Rich argued that lesbianism was the natural merely another rhetorical building block in the expression of “woman-identification”—a state construction and maintenance of the white from which women were coercively exiled by heteromasculinity. a system of “compulsory heterosexuality”— 17. To this effect, it is striking how quickly the then Brokeback Mountain applies the same players, while appearing on Larry King Live, pass logic male same-sex desire. For a feminist over the related inquiry of a female caller. While disability critique of Rich’s article, see Alison all of the other calls lasted several minutes, this Kafer’s “Compulsory Bodies: Reflections on particular seemed over as soon as it began. The Heterosexuality and Able-Bodiedness.” entire dialogue runs as follows: 20. While the rodeo, which I will later discuss in more depth, is linked to both heterosexuality Woman: “Being from Alaska, where is [sic] and disability, the scene where Ennis is thrown the closest teams and how many are from his horse functions as its able-bodied there, and is [sic] there any female queer counterpoint: Ennis is barely injured by teams?” the incident, able even to immediately chase the Bob: “There are women that play rugby, horse and mules who have run off. Additionally, it’s a co-ed sport.” upon their first trip back to the mountain after Larry King: “And so women can be on your their long separation, the first thing we see Jack team?” and Ennis do is strip off their clothes and jump Mark: “Yeah, it’s a co-ed sport.” from a tall cliff into the water below. We might Larry King: “Any in Alaska?” productively compare this scene to the Spanish Scott: “No, the closest team I’d say is in film The Sea Inside where a similar jump off of Seattle.” a similar cliff results in extreme quadriplegic Larry King: “So you have to go to Seattle.” impairment. 396 | CYNTHIA BAROUNIS

21. Robert McRuer’s arguments about hetero- Tomso’s “Bug Chasing, Barebacking, and the sexuality and able-bodied domesticity seem Risks of Care.” Of course, on another level, the worth addressing in this context. McRuer argues film might be said to constitute the realistic that “[t]he ideological reconsolidation of the portrait of queer rural masculinities between home as a site of intimacy and heterosexuality 1960 and 1980. By no means is my intention to was also the reconsolidation of the home as a consolidate a grand narrative that privileges site for the redevelopment of able-bodied urban queer cultures at the exclusion of rural identities, practices, and relations.” Thus an queer manifestations. The film does indeed “inability to imagine a queer domesticity” help us to revise our assumptions about the becomes also the “inability to imagine a disabled proper “time and place” for queer sexualities domesticity” (McRuer, 2006: 89). While McRuer’s (Halberstam, 2005). I would suggest, however, argument is entirely valid within the context of that in its intense disavowal of all things urban his examples, Brokeback Mountain appears to and disabled, Brokeback Mountain in fact lends signal a drastic resignification of these concepts, remarkable authority to those representational forcefully undoing the associational link between histories that tied queerness to urban sex heterosexual domesticity and able-bodied cultures and disability. ideologies. 22. Interestingly, in this respect, Jack emblematizes WORKS CITED both the “cult of ability” that McRuer has identified as “the Good Gays who are capable of Bennett, R. (2000) “Rugby”, WeMedia 4(5): pp. 60. sustaining a marriage, who are not stigmatized Brier, J. (2001) “The Immigrant Infection: Images of by AIDS, and who went to Washington in 2000 Race, Nation and Contagion in Public Debates on for the Millennium March” and the “cultures AIDS and Immigration.” Modern American Queer of disability” that are made up of participants History. Edited by Allida M. Black. Philadelphia: in “AIDS activism and the lesbian feminist Temple University Press. traditions of health care activism that preceded Davis, L. J. (1995) Enforcing Normalcy: Disability, it” (McRuer, 2006: 86). Deafness, and the Body. New York: Verso Books. 23. We might consider this moment alongside of the Edwards, T. (1994) Erotics & Politics: Gay Male Sexuality, scene that occurs directly after Jack convinces Masculinity, and Feminism. London: Routledge. Ennis to spend the night with him in the tent Ehrenstein, D. (2006) “Fun with Harv and George?”, during the hailstorm. What appears to be a Advocate, February, p. 41. decision on the side of able-bodied homo- Garland-Thomson, R. (1997) Extraordinary Bodies: sexuality turns out to result in another racial Figuring Physical Disability in American Culture contamination—without Ennis there to shepherd and Literature. New York: Columbia University them, Aguirre’s flock has gotten mixed together Press. with a flock of South American sheep. It is, of Garland-Thomson, R. (2004) “Integrating Disability, course, not at all my intention here to conflate Transforming Feminist Theory”, in B.G. Smith and Mexico and South America. However, their B. Hutchison (eds) Gendering Disability, pp. 73– geographical proximity and their relationship 104. New Brunswick, NJ: Rutgers University Press. to Hispanic racial identity does function to link Garland-Thomson, R. (2007) “Shape Structures them within the logic of the film. Story: Fresh and Feisty Stories about Disability”, 24. Ironically, these associations were often Narrative, 15(1): pp. 113–123. accompanied by a different understanding of Gilbert, S. and Gubar, S. (1979) The Mad Woman in queer masculinity, one that, according to Tim the Attic: The Woman Writer and the Nineteenth Edwards, saw gay public sex cultures not only as a Century Literary Imagination. New Haven, CT: Yale site of contamination but also as outgrowth of an University Press. aggressive and “unnatural” hypermasculine sex Halberstam, J. (2005) In a Queer Time and Place: drive. If the urban manifestations of gay sexuality Transgender Bodies, Subcultural Lives. New York: appeared to many to link hypermasculinity to New York University Press. sexual excess, indulgence, and disease then Haller, M.D. (2005) “Seat of Power”, Cincinnati Ennis’s rural brand of stoic masculinity, founded Magazine, October, 39(1): pp. 20, 22. on an ethic of discipline and restraint, invests Haraway, D. (1991) Simians, Cyborgs and Women: The his homosexuality with the virtues of health, Reinvention of Nature. New York: Routledge. organicism, and able-bodiedness. Hoffman, C. (2006) “Memo From the Front: It’s 25. For a thorough treatment of cultural Just a Manly Thing”, Brandweek, May, 47(18): understandings of barebacking, see Gregory p. 26. CRIPPING HETEROSEXUALITY, QUEERING ABLE-BODIEDNESS | 397

Kafer, A. (2003) “Compulsory Bodies: Reflections on of Physical Disability in the Movies. New Brunswick, Heterosexuality and Able-Bodiedness”, Journal of NJ: Rutgers University Press. Women’s History, 15(3): pp. 77–89. Proulx, A. (1999) Close Range: Wyoming Stories. New Kimmel, M. S. (2005) The Gender of Desire: Essays on York: Scribners. Male Sexuality. New York: State University of New Seymour, W. (1998) Remaking the Body: Rehabilitation York Press. and Change. London: Routledge. Lee, A. (2006) Brokeback Mountain. Universal Shapiro, D. A., Mandel, J. and Rubin, H. A. (2005) Studios. Murderball. THINKFilm and MTV Films. Leyland, M. (2005) “Murderball”, Sight and Sound, Tomso, G. (2004) “Bug Chasing, Barebacking, and the 15(11): pp. 70–71. Risks of Care”, Literature and Medicine, 23(1): pp. McRuer, R. (2006) Crip Theory: Cultural Signs of 88–111. Queerness and Disability. New York: New York Wilson, D. J. (2004) “Fighting Polio Like a Man: University Press. Intersections of Masculinity, Disability and Aging”, Mulvey, L. (1975) “Visual Pleasure and Narrative in B. G. Smith and B. Hutchison (eds) Gendering Cinema”, Screen 16(3): pp. 6–18. Disability, pp. 119–133. New Brunswick, NJ: Norden, M. F. (1994) The Cinema of Isolation: A History Rutgers University Press. CHAPTER 29

Sculpting Body Ideals: Alison Lapper Pregnant and the Public Display of Disability Ann Millett-Gallant

In 2005, artist Alison Lapper was thrust into social subject and a reproductive sexual fame when her 11.5 foot tall, 13 ton sculp- being and her right to represent others. tural portrait, Alison Lapper Pregnant, was This essay will interrogate the sculp- unveiled on the fourth plinth of Trafalgar ture’s representation of disability within Square [see cover image]. Lapper agreed the contexts of Trafalgar Square, the genre to being cast in the nude by British artist of Public Art, as well as in comparisons Marc Quinn when she was 7 months preg- with Quinn’s previous series of sculp- nant and to be placed on public display; tural amputees, The Complete Marbles many have called the piece a collabo- (2002), and, foremost, with Lapper’s self- ration. The controversial sculpture has representations. I will argue that Alison brought widespread attention to the mod- Lapper Pregnant significantly responds to, el’s body and her life story. Lapper, born as well as transforms, the history of its par- without arms and with shortened legs, is ticular space and interacts with the popu- an alumnus of British institutions for dis- lations who inhabit that space. Rather than abled children and programs for disabled displaying trite political correctness or artists, a now single mother, and an art- simple shock value, as much of its criticism ist who makes work about her embodied wages, the work plays monumental roles in experiences as a disabled woman. Carved the histories of both disability representa- from precious Italian marble and placed tion and art. As a public spectacle, it recy- on a pedestal among statues of naval cap- cles, and I will argue contemporizes, the tains, Lapper has been called a contempo- representation of disability as both heroic rary heroine of cultural diversity, while the and freakish. Further, Lapper’s photogra- work has also been regarded as a tasteless phy and her recently published memoir publicity stunt for Quinn. The exposure are key components of such discussions, as of Lapper’s body transcends the fact that they provide perspectives by and a voice to she is nude, for Lapper grew up in inso- the disabled subject on display. By weaving lated environments of public intuitions together these contexts of and reactions and had limited interactions with public to Quinn’s and Lapper’s works, this essay life; for Lapper, the work is a true coming underscores the necessity of placing the out. Alison Lapper Pregnant makes a pub- works of disabled and non-disabled art- lic statement about this disabled woman’s ists in dialogues with one another and with right to be represented as a productive larger histories of visual culture. SCULPTING BODY IDEALS | 399

Public art raises issues of social and The work functions visually on confu- artistic representation and the visibility sions between the ideal and anti-ideal. and invisibility of certain members of soci- Quinn’s work is specifically a quotation ety. Public space and its monuments have of 18th- and 19th-century Neoclassicism. been gendered male and raced white tra- Neoclassical figurative painting, sculpture, ditionally, and public space is largely able- and architectural programs taught les- ist in attitude, not to mention accessibility sons on heroism and moral virtue, often (or lack thereof). Public art, when the most by depicting the deeds of great and pow- effective, creates dialogues about the role erful men.3 In Western culture from the of art in society and whom is included and Renaissance to today, this Neoclassical excluded in the notion of the “public.” By form is characteristically employed for honoring individuals marginalized and public statues of religious and political erased by dominant values and the struc- heroes. Neoclassicism and its Classical tures which personify them, many more heritage communicate philosophical and contemporary public art projects have political ideals through mathematically explicitly protested the status quo. These constructed aesthetics, specifically, in public art forms, in which I contextualize “whole” bodies. Alison Lapper Pregnant, embody cultural Quinn subverts the signification of battles for and of representation. Neoclassical form as the ideal “whole” The sculpture produces Lapper as a rep- in Alison Lapper Pregnant (2005) and in resentative of the historically under-rep- his series of life size, marble sculptures of resented. Lapper has positioned the work amputees, The Complete Marbles (2002), at the forefront of such initiatives, stating: which adopt particularly Roman quali- ‘I regard it as a modern tribute to femi- ties of portrait likeness. By using many ninity, disability and motherhood . . . The high profile disabled models, such as artist sculpture makes the ultimate statement Peter Hull and the confrontational “freak” about disability—that it can be as beauti- performer and punk rock musician, Matt ful and valid a form of being as any other.” Fraser, Quinn produces depictions of rec- She acknowledges how her body becomes ognizable subjects and celebrities. Titled a monument to bodies and identities that with the subjects’ proper names, these have been socially devalued, shamed, works challenge how the viewer perceives and excluded from public life historically. the body in art, as well as in everyday life, Lapper goes on to note: “It is so rare to see as whole and/or broken.4 Quinn titled this disability in everyday life—let alone naked, series The Complete Marbles strategically. pregnant and proud. The sculpture makes The Elgin Marbles are precious Classical the ultimate statement about disability— sculptures appropriated from the Parthenon that it can be as beautiful and valid a form in Greece (produced c. 438–423 BCE). The of being as any other.”1 Here, she character- Elgin Marbles, many broken and missing izes her body as a form of anti-monument, limbs and heads, were amputated from for it represents the “other” to traditional their architectural base (the Parthenon); subjects of public monuments, as well as they are fragments of profoundly aesthetic an anti-ideal. Positive feedback about the “wholes,” for the Parthenon remains a cul- sculpture also champions it as a liberating tural icon today for its integrated, carefully anti-ideal.2 The work may function to force orchestrated balance and proportion and the viewer to question their perceptions of its intense, methodical control of aesthet- the “ideal,” while also questioning whose ics. Extracted from the Temple to Athena, ideals Lapper is purported to represent. the marbles both fragment and “stand” (or 400 | ANN MILLETT-GALLANT

symbolize) one of the greatest symbols of legless Apollo—that are the staple diet of all power and wealth in Western history—spe- collections of the antique. These are serious cifically one famous for its ideal wholeness. achievements.6 (emphasis mine) Quinn’s title for the series, The Complete My italics here underscore how Januszczak Marbles, places contemporary disabled describes Quinn’s use of amputees in bodies in these historical legacies, and art historical, specifically Classical and they are designated as “whole” by their own Neoclassical images, as confrontational counter-conventional body standards and and revisionist, as if the works are affronts disarming beauty. to these traditions because of the ampu- Quinn’s artistic procedures and mate- tees featured. This comment suggests that rials are central to the significances of his certain social prejudices against ampu- works. Like all of the pieces in The Complete tees function in critical interpretations Marbles, Alison Lapper Pregnant was of Quinn’s work. The form of the Lapper sculpted in Quinn’s studio in Pietrasenta, sculpture has been the target of much criti- Italy, the center for Carrara marble—the cism; however, criticisms against the artis- same marble sought by Michelangelo tic value of Alison Lapper Pregnant (the and many Neoclassical sculptors. Alison work) may suggest simultaneous rejection Lapper Pregnant took 10 months to craft of Alison Lapper pregnant (as an embodi- from the stubborn substance, which con- ment and social subject). Many have tains exalted histories and symbolic sig- charged Quinn with capitalizing on the nificances. Quinn is quite particular about shock value and taboo nature of disabled the material, as he literally goes out of his bodies in public spaces.7 The work func- way to use it, and he prefers this marble tions to make such stereotypes visible and for its “intrinsic and metaphoric content.”5 open to public debate. Carrara marble provides a luminosity that On the other hand (or stump), positive makes his amputees shine and radiate, like evaluations of the Alison Lapper Pregnant works from the Greek Hellenistic period. further complicate how the sculpture rep- Many critics deem Quinn’s art histori- resents disability in the public eye, as they cal references as subversive, specifically purport Lapper to be a hero. This idea because he focuses on disabled bodies. For recalls the stereotype of a disabled hero example, art writer for the Sunday Times, that is premised on sentimentalization of Waldemar Januszczak, states the following and low expectations for disabled people in about Allison Lapper Pregnant: society. What kind of hero is Lapper in these descriptions, one who dismantles notions By carving Allison Lapper out of pristine of appropriate versus shocking bodies? Or marble, Quinn is taking on the Greeks; he is one who rehashes the stereotype of “over- disputing with Phidias, with Michelangelo, coming,” which functions to ignore social with Sir Joshua Reynolds, with every authori- constructs of disability and is based on the tarian with imagination that has ever insisted problematic notion of disability as an indi- upon a standard shape for the human in art; vidual “problem”? Framed as the represen- he is contradicting 2,000 years of creative tation of a hero, the sculpture celebrates misrepresentation of what being human means; and he is giving Allison Lapper Lapper’s impairments and perhaps also the same amount of artistic attention that de-politicizes, or literally aestheticizes dis- Canova gave the Empress Josephine. As if ability, as a marginalizing social construct, that were not enough, Quinn is also cheekily for the public. Or perhaps it redefines our rhyming his sculptures with the broken rem- ideas about heroism and makes a disabled nants of classical art—the armless Venus, the figure a role model, in a positive light. SCULPTING BODY IDEALS | 401

Lapper’s heroism may also be problem- yet one that contrasts with the conventions atically tied to her pregnancy, such that for the sexualized nude, particularly for motherhood becomes a means for Lapper 21st-century eyes. Popular representations to “overcome” disability by conforming to have tended to idealize pregnancy socially, standards for women’s roles in society, a yet they also veil the pregnant female body, point which Kim Q. Hall has interrogated. reinstating its preferred existence within Hall quotes Quinn: “For me, Alison Lapper the proverbial home. Pregnancy is glori- Pregnant is a monument to the future pos- fied and yet stigmatized and indeed often sibilities of the human race as well as the considered a disability. However, images resilience of the human spirit.”8 Hall frames of pregnant women have become trendy this comment within political propaganda lately, particularly among the elite, with that has imposed the duty upon women the celebrity “baby boom” displayed in the historically to reproduce the nation; such aesthetic “bumps” on otherwise perfect dogma is similar to that expressed through- bodies and within the romanticized unions out Trafalgar Square by the national heroes of the Brangelinas and Tom-Kats of the depicted. Hall argues that the sculpture is world; Demi Moore, Melania Trump, and championed by Quinn and many others most recently, Britney Spears have been because it confounds the taboo nature of featured by mainstream women’s maga- disabled bodies in public spaces, as well as zines as so-called liberated covergirls and patriarchal and heterosexual values that centerfolds, revealing their scantily clad assert that reproduction validates women. and fashionable pregnant bodies. Again, Yet, Hall’s persuasive arguments reframe these pregnant bodies are framed specifi- how Lapper’s presence in the square plays cally within dominant social ideals and val- upon traditional gender roles and disabil- ues (with perhaps the exception of Spears ity stereotypes only tangentially, for the and the notorious “Fed-Ex”), values to sculpture’s and Lapper’s own consistent which Alison Lapper could never conform. divergence from convention affirms the Alison Lapper Pregnant confuses percep- work’s adamant non-conformity to “family tions of the body in art history and popu- values.” Mainstream discourses that breed lar culture, ultimately because, for many, women for motherhood suggest that a pro- the work assertively provokes the fear that ductive female member of the society is a the disabled body will reproduce another reproductive one, specifically within the “damaged” child—from a “broken” body institution of marriage. Far from glorify- and a “broken” home. The work advocates ing a nuclear family, Lapper was born to a controversial reproductive rights for dis- single, working class mother and is herself abled women and for single women more an unmarried mother, who has benefited broadly. Further, any attempt on Lapper’s from public programs for disabled artists. part to fulfill her role to reproduce the next Many may view Lapper’s choices as amoral generation may produce a disabled one, and her subsistence as a public burden, which remains a horror rather than a tri- therefore she hardly acts in the legacy of umph, according to mainstream values national heroes. and exclusive social standards for quality Lapper’s maternal situation defies ide- of life. Lapper’s maternal “acts” poignantly als of both society and of art for women’s fail to service social ideals, as the sculp- bodies. Pregnant bodies, seen most often ture becomes pregnant with ambivalent in art history as fertility figures and virginal meanings. Madonnas, occupy a liminal status, as both Viewers’ reactions to the work as shock- an ideal state of the female motherhood, ing and/or inspiring seem polarized, and 402 | ANN MILLETT-GALLANT

yet both connote, to varying degrees, the specifically in binary opposition to the desire to make a lesson out of the disabled strikingly “abnormal” spectacle. body, in order to justify its display. Many The freak show is another relevant com- who critique the work and Quinn’s The parison for considering the role of Lapper’s Complete Marbles series demand explana- body in a public space, particularly one that tion about the cause of the models’ impair- serves as a tourist attraction11: “She is pre- ments and the usefulness of such displays sented “like some 19th-century fairground to society. Januszczak has also stated: exhibit,” one critic stated.12 In the freak “With a subject as serious as the loss of show, the disabled and other extraordinary human limbs, or the birth of a child to a (exotic, minority) bodies were eroticized; deformed mother, it is absolutely incum- the nudity of the sculpture, to which some bent upon the gallery to cease playing take offense, is intrinsic to its unashamed aesthetic games and to make clearer the display of the pregnant disabled body and artist’s intentions.”9 This quote expresses its Neoclassical form; it places the work in viewers’ desire for medical diagnosis to a both a history of art and a history of dis- make the works more palatable and less playing the body as spectacle, in the freak sensationalistic. However, the sculpture show, pornography, and other voyeuristic also provokes some viewers to question venues. This context raises a key question: their own desires to know “what hap- does the sculpture exploit Alison Lapper? pened” to the body and assumptions that Lapper is benefiting from the attention the disabled body necessarily connotes the work has drawn to her own art and her accident or victimization. life, as she recently published a memoir The notion of making the disabled body (2005). In it, she relates Quinn’s sculpture into a lesson is relevant to the realm of to her own self-portrait nude photography, public art specifically, within which the with which she expresses comfort in her body becomes a monument to instruct, own skin and challenges her personal his- for public art has a duty, in the eyes of tory of being considered physically defec- many, to educate and inform. The origin of tive and sexually unattractive. Addressing the word “monument” derives from Latin the controversy regarding the nudity of the monere, meaning “to remind,” “to admon- statue, Lapper has written: ish,” “warn,” “advise,” and “instruct.”10 Poignantly, this word origin emerges also In most societies, even in Britain today, preg- in the word “monster,” as scholars of the nant women are not considered to have a freak show have pointed out, explaining beautiful shape. On top of that, short people, how the disabled body has historically been who are missing both arms, are generally seen as an indicator of either supernatural considered even less beautiful. I was someone who currently combined both disadvan- foreshadowing or scientific mistake. The tages. How could Marc possibly think I was a use of the disabled body as a lesson has suitable subject for a sculpture that people included public exploitation of so-called would want to look at? Statues are created medical anomalies, practices which have and exhibited to give pleasure, to be admired. reinforced medical models, crossed genres Would anybody be able to admire the statue into freak shows, and staged the disabled of a naked, pregnant, disabled woman?13 body as an instructional object for the non-disabled viewers. The 19th- and early She attributes the controversy of the sculp- 20th-century freak show entertained and ture to a society that is prudish to nudity affirmed middle class spectators’ senses in general, as well as to pregnancy and to of “normalcy,” which was constructed disability specifically. Many may deem the SCULPTING BODY IDEALS | 403 work amoral, and therefore in direct oppo- portray political ideals. A monument to sition to Neoclassical, moralistic tradi- Lord Nelson became the central vision of tions, and yet, as Lapper articulates, moral the square. This Neoclassical likeness of judgments are subjective to the eyes of the Nelson stands on a 185 foot tall column, beholders. overseeing the public—a tradition which Lapper does not express feeling continues today. Nelson’s monument, exploited. Describing her decision to pose, modeled after the triumphant Roman Lapper writes: Column of Trajan, and its surroundings place modern Britain in the traditions It was January 1999 when I received a phone of Roman imperialism. Surrounding call from an artist called Marc Quinn. . . . I Nelson are other monuments to British was extremely suspicious. I thought he might military heroes, represented in idealizing be just another one in the long line of people Neoclassical forms.16 Like the design of the who have exploited disability and used it for square, the Neoclassical monuments dis- its curiosity and value. However, when we play a particular side of British history and talked, I realized Marc wasn’t interested in disability in the way most people wanted to society, one whose power depends on the depict it. He wasn’t pitying or moralising—I subordination of those rendered invisible. knew it wasn’t a freak show or some kind of With her marble, feminine curves and weird sexual focus that he was aiming at.14 serene posture, Alison Lapper Pregnant would seem out of place in such a paternal- Lapper here recognizes the problematic istic environment17—the freakish anti-hero. tropes of representing disabled bodies as And yet others see the sculpture as right at sentimentalized heroes or freakish specta- home with the other monuments. She has cles, both of which make the disabled body been compared symbolically and corpo- into a symbol and lesson to be learned by really with Admiral Nelson himself, as the the so-called normal. Poignantly, she ties work reinterprets notions of disabled and these tropes together. Yet by collaborat- non-disabled heroes and spectacles. For ing with Quinn, Lapper makes a statement examples, in letters to the editor, Michael about the need for public education and Gallagher calls Lapper: “A great Briton in exposure of/to disability in contemporary the truest sense of the word. I am sure that society in order to overturn the stereotypes Nelson would have recognised her as a kin- and the status quo. dred spirit,” and Jeanette Hart notes: “. . . Trafalgar Square is an ideal place to raise Nelson only had one arm, and was blind in and interrogate these issues. The modern one eye, and he was just known as a great city, and public squares like Trafalgar espe- man; no one labelled him.”18 Nelson was cially, were built for tourist gazing, urban indeed blinded in one eye during the cap- surveillance, and commercial spectator- ture of Corsica from French troops in 1794 ship.15 Trafalgar Square, designed by John and lost his arm in a 1797 capture of the Nash and built by Sir Charles Barry in the Canary Islands. He continued to lead troops 1820s and 30s to commemorate British with these impairments until his death at naval captain and famous imperialist the Battle of Trafalgar in 1805, an act which Admiral Horatio Nelson (1758–1805), was has augmented his status as a national named after the Spanish Cape Trafalgar hero. The column is topped by a statue of where Nelson’s last battle was won. Nelson posed with his uniform coat sleeve Characteristic of 19th-century Roman draped along his chest and tucked into his revival in Britain, the square’s architecture suitcoat, in a conventional pose for lead- and statuary is specifically Neoclassical to ers, yet his sleeve is empty. This view is not 404 | ANN MILLETT-GALLANT

perceptible for the viewer below. Quinn’s of activism represent multiple and oppos- public display of Alison Lapper and its ing sides of social and political issues since comparisons to Nelson’s Column have illu- the 19th-century, and, significant, most of minated for some that the disabled body is these demonstrations have centered on always already present in an existing vision the base of Nelson’s column, because of of heroism. Viewing Lapper as a hero rein- its physical prominence and its symbolic terprets or expands the image of a heroic significance. The monuments of Nelson body, and perhaps this designation does and Lapper both embody multiple sig- not simply rehash stereotypes of overcom- nificances contextually and over time and ing, but rather describes the meaning of have been witnesses to multiplicities of her body as a public image within a specific perspectives. Both Nelson’s and Lapper’s location and historical context. bodies in Trafalgar Square pay tribute to Alison Lapper Pregnant follows in mul- the necessity of public debate. tiple histories of public art that are cel- The sculpture of Alison Lapper and its ebratory of or in protest to their context—a social and symbolic meanings must be simultaneous monument and anti-monu- considered within its specific context. ment. All of the submissions for the Fourth The work embodies, transforms, and con- Plinth project competition since 1990 have temporizes the history of its space. Alison been consciously critical of the square’s Lapper Pregnant carries on the square’s aristocratic, nationalistic, and paternal- traditions by provoking debate and dis- istic traditions, both in content and form. sent. The controversy and many oppos- As art critic Paul Usherwood describes it, ing opinions expressed publicly about the Lapper carries on this contemporary trend sculpture enact its social work. Lapper’s of mocking the square’s: “macho triumpha- body on display has provoked construc- lism and formality.”19 Lapper’s Neo- or post- tive investigation about the role of art in Classical form embodies also a breaching society and the roles of disabled bodies as of boundaries between convention and heroes and spectacles. It asks us to inter- subversion. And by embodying contra- rogate our assumptions about what forms dictions, Lapper once again fits right into of bodies should or should not appear in Trafalgar Square and translates its history public spaces and how. The dubious repre- to contemporary debates over civil and sentations of disability the work evokes are human rights. The controversial debates both liberating and stereotypical, which is surrounding the work continue a long- necessary to provoke debate. That Lapper standing history of Trafalgar Square, which herself has been so vocal in the discussions has been wrought with conflict historically is key, for her collaboration with Quinn and (as evidenced by the background stories her public mediation of the work shows on the lives of the men honored there). how perspectives of disability, not just Trafalgar Square has served as the city’s about them, are necessary for any produc- most popular rallying point and the site of: tive dialogue. political, economic, and religious protests; Comparisons of Quinn’s work with interventions of military law; class battles; Lapper’s own body art, which self-narrates protests for freedom of speech and rights her experiences as a disabled woman artist, to assemble, for women’s suffrage, and for provide significant dialogues about disabil- civil rights, liberties, and decolonization; ity and visual representation. Born in 1965, and pro and anti-war, pro and anti-Fascism Lapper grew up in institutional settings and Semitism, and pro and anti- commu- and art schools. Although she was always nism rallies.20 Poignantly, all these displays skilled at making art, Lapper remarks SCULPTING BODY IDEALS | 405 on having to prove herself repeatedly to objectified, while posing in the nude, non-disabled people, intellectually, artis- Lapper adopted the Venus de Milo as her tically, and sexually, due to assumptions body image. Lapper’s graduation exhibit about her so-called “lacking” anatomy. featured an installation the viewer had to She moved to London at age 19, where she enter on hands and knees, at the height lived independently for the first time, and of Lapper herself, in order to see photo- later attended the University of Brighton, graphs and sculpted casts of her full body graduated with a degree in fine art at age and body parts. This installation created 28, purchased a home in Southwick, near an environment that removed the viewer Brighton, and began her work as an art- from their own comfort zone physically ist. Lapper has been the focus of the BBC1 and perceptually. Other disabled artists series Child of Our Time program, to which also employ their embodied perspectives she has returned for annual appearances, in their work, such as little person Ricardo and an hour-long documentary by Milton Gil. Gil photographs his wife and daughter, Media for Denmark’s TV2, titled Alison’s both little people, from the perspectives at Baby, which has been broadcast in many which he views them—literally, in terms countries and won the Prix Italia and the of his height, and figuratively, as intimate Prix Leonardo. In 2003, Lapper won the close-ups that establish affectionate, famil- MBE award for service to the arts. Since ial relationships between the subject and graduation from Brighton, she has worked the camera’s gaze. In Johann’s Kiss, 1999, fulltime for the Mouth and Foot Painting Gil features his smiling wife centered in Artists’ Association of England (MFPA). the frame, embraced by an average-sized, Funding for this program comes from the kneeling man, whose head is cropped at artists’ production of decorative images the top of the photograph. Figures in the for card designs, marketed by the MFPA, background are cut off at mid torso; how- and Lapper writes that she still enjoys pro- ever, these are not mistakes of an amateur. ducing such genre scenes and landscapes, Here, “normal” size people don’t fit in the along with her self-portrait work. little woman’s privileged, compositional Lapper’s self-portrait body art, in the space or in Gil’s proud gaze. Lapper’s instal- forms of photography, sculpture, and installation, like Gil’s photographs, explored the lation, marks a continuous process of self relationships between the viewer’s versus discovery. At the University of Brighton, an the artist’s own acts of looking at, judging, opinionated viewer challenged the nature and experiencing the disabled body.21 of Lapper’s figurative work of non-disabled Lapper’s self-portrait work and her per- bodies, by suggesting that perhaps Lapper sonifications specifically of the armless had not fully accepted her own body. Venus de Milo (a cultural icon of artistic and This moment became a turning point for feminine beauty), like Duffy’s, explore the Lapper, as she began envisioning her own complicated interactions of disability and body as a work of art. Inspired by a pho- sexuality, particularly for women. Lapper’s tograph of the armless or “broken” Greek shameless public exposure in a public art statue, the Venus de Milo, in which she display (Alison Lapper Pregnant) takes root saw her own likeness, Lapper began cast- in a longer artistic and personal process of ing her body in plaster and photographing “coming out” as a sexual, and indeed repro- herself in Venus-like poses. Like arm-free ductive woman. In contrast with the main- performance artist Mary Duffy, who deliv- stream vision of Lapper’s often assumed ers impassioned speech about her expe- a-sexuality, a bold and seductive body riences of being medically and socially image emerges in Lapper’s work. Lapper’s 406 | ANN MILLETT-GALLANT

Untitled (2000) features three views of her Brighton, featuring sculptural works and nude body in Venus-like, s-curve poses. photographs of Lapper from childhood to The photographic media articulates her adulthood. The photographic collection musculature, flesh, and curve of the breast, intentionally crossed genres, by includ- while aestheticizing equally her upper-arm ing artistic self-portraits, snapshots taken “stumps.” The strong contrasts of the black by friends at key moments in Lapper’s life, background with the marble whiteness of and early childhood medical photographs, her skin create a photographic sculpture which questioned viewers’ assumptions in the round. The photograph, like Duffy’s about seeing her body in different visual performance and Quinn’s The Complete contexts. The inclusion of medical pho- Marbles series, plays with the viewer’s rec- tographs in particular was meant to dis- ognition of Classical statuary (particularly arm the viewer and incorporate, as well as a goddess of love and fertility) and the intervene on, Lapper’s experiences of feel- disabled flesh, as well as perceptions of ing like a medical spectacle and specimen. “whole” versus “deficient” bodies. Carving Indeed, Lapper’s unique medical history, a sculpture “in the round” refers specifically chronicled in her memoir as a series of to Classical and Neoclassical methods of objectifying and shameful displays of her producing balanced, proportional “wholes.” body by doctors to “instruct” their peers This symbolic practice was quoted also by on deformity and anomaly, connects inti- feminist performance artist Eleanor Antin mately in the process of her work; Lapper in Carving: A Traditional Sculpture (July remarks on her extensive history of being 15, 1972–August 21, 1972), in which Antin measured and cast in plaster particularly, documented her body from all sides daily, in both medical and artistic contexts. Other as it gradually reduced during a crash diet. works in the show featured Lapper’s face in Antin’s photographs are formally clinical in the vintage black-and-white style of clas- their starkness, referring to the “before” and sic Hollywood photographs. These images “after” photographs quite familiar in our were strategically placed in a frame on makeover-obsessed contemporary culture, the floor and covered in salt crystals. The while her body becomes a piece of sculpture viewer had to kneel down and brush aside in characteristic practices of performance the crystals to see Lapper’s face, portrayed art. Particularly to 21st-century eyes, the in a photographic softness reminiscent of Antin’s images refer to eating disorders and glamour shots and intended to offset the the extents to which women will go to “per- hard-edge format of the medical images. fect” their bodies, according to increasingly The demand for viewer interaction with narrow and impossible social standards for these works, as well at their themes of veil- beauty. Lapper’s and Antin’s photographic ing, revealing, and concealing the body, sculptures in the round, like Quinn’s sculp- make them performative—another public tures, expose the notion of the “ideal” as display of the disabled body. fabricated. Lapper’s work especially pres- Lapper strives in this work to showcase ents a certain disruption between artistic the disabled body as artistic and worthy of and social visions of the ideal and anti-ideal aestheticized display. She also makes pho- female body. tographic collages with elements such as Art has provided a means for Lapper to flowers and angel wings to symbolize her interrogate others’ and her own images biographical and artistic journeys. In Angel of her body and to reinvent her image in (1999), Lapper’s head and nude torso, shot in the public eye. These themes continued black and white film, project from the right in a 2000 exhibit at the Fabrica Gallery in edge of the painted frame. She bears wings SCULPTING BODY IDEALS | 407 and her body thrusts upward, soaring, like allegory and as a portrait subject. As an the winged messenger god, Hermes, or the allegorical figure, Alison Lapper Pregnant confident, yet tragic Icarus, to unforeseen follows in a tradition of staging the female heights of knowledge and to personal vis- body particularly as a symbol of heroic, tas. Winged figures, from Classical mythol- virtuous, and largely patriarchal social ogy to contemporary fantasy, transverse values. Justice, Prudence, Fortitude, the heavens and the earth—the realms of and Temperance, for examples, are val- the gods and mortals; they are figures with ues embodied by the female allegory of extraordinary bodies and supernatural British history, Britannia, a Neoclassical abilities for travel. Lapper here incarnates figure derived from the Roman Minerva goddess imagery, enacting a re-vision of (Athena) and featured most prominently art history and resurgence of the disabled in Neoclassical design on Roman-inspired body in shameless, empowered self dis- British coins. Classical Roman revival in play. She appropriates allegorical bodies to Britain, which inspired the architecture present her own body image. In this frame, and figurative program of Trafalgar Square, Angel invokes also the winged Nike, the appealed to traditions of piety, austerity, mythical personification of victory, who is and humility in British society, social ideals sometimes depicted bearing wings in the upheld still today across much of Britain’s place of arms (as in the monumental, Nike political landscape. Alison Lapper Pregnant, of Samothrace, c.190 CE). Believed to once as a Neoclassical sculpture in the round, stand at the helm of a ship, the headless brings to life the corporeal reality of meta- and armless Greek Hellenistic Nike is now physical, bodily allegories. Lapper’s arch a grand attraction at the Louvre Museum in defiance of such longstanding conservative Paris and a relic of Western culture. The Nike ideals, however, radiates from the sparkling form is poignantly a derivative of Athena, surface of her body and tells “other” stories the goddess known for her protection of of British citizenship. She both conforms the city of Athens and who is venerated still to and reforms stereotypes of disability, as today at the Parthenon, the original home well as of the British “public.” Lapper’s self- of the Elgin Marbles. Athena, or Minerva as portrait photographs present additionally she was known by the Romans, was a single graphic portrayals of her particularized mother and the goddess of wisdom, wom- experiences, while co-opting the powers en’s deeds, and the arts—a quite fitting of infamous female beings. Britannia fol- allegory for Lapper to embody. Further, as lows in the legacy of Minerva as the civic Marina Warner (1985) describes, Athena goddess and as a symbol of law abiding shape-shifted to a number of personas chastity; as a reincarnation of these god- and bodies in order to invoke powers and desses, Lapper gives birth to new histories enact deeds. These performative masquer- of the square and the British nation, both ades of the goddess included her strategic by posing for the statue and by producing exposure and concealment of her body self-representations. and identity. Like Athena’s performances, Lapper’s role in the mediation of Alison Lapper’s self-portrait works reveal and con- Lapper Pregnant has brought a voice to its ceal her body in multiplying references and depiction of a pregnant amputee woman, significances; similarly to Alison Lapper as well as of a contemporary artist; Lapper’s Pregnant, Lapper’s body work is pregnant own work, which has experienced more with meaning. attention, albeit slowly, contributes to sig- Lapper’s works, like Quinn’s, juxtapose nificant dialogues and representations of the portrayal of the body as symbolic disability in visual culture, both today and 408 | ANN MILLETT-GALLANT

historically. Quinn’s and Lapper’s images was based, figures were composed from the cause the viewer to do a double-take and most idyllic features of different individuals and to perceive bodies on display in differ- mathematically derived proportions in order to create a composite “whole” body ideal. ent lights and with frameworks outside 4. One the few works in The Complete Marbles of the strict conventions of social ideals. that is not titled with the models’ names, Kiss, These artists call into question the integ- 2002, refers specifically to Impressionist sculp- rity of Neoclassicism and other idealizing tor Auguste Rodin’s canonical work The Kiss. and/or disfiguring traditions for displaying Quinn’s Kiss features two life-size amputees cast from live models, standing on one leg and lean- the body in art, as well as in everyday life. ing against one another (rather than seated, as These juxtapositions also emphasize the in Rodin’s original), to embrace passionately. necessity of placing the works of disabled Quinn here showcases a disabled couple in an and non-disabled artists in dialogues with allegory of romantic love and as contemporary each other and with larger visual contexts, sexual beings, which challenges popular stereotypes of disability as sexually undesirable. Kiss in order to see art through new eyes and and other works in The Complete Marbles series from the perspective of disability. In col- are portraits that call for re-visions of art history laboration, such dialogues can forge fresh, and social ideals. multidimensional images of disability in 5. Preece. the public eye, and potentially, can sculpt 6. Waldemar Januszczak, The Sunday Times, “Matter of life and death—Art-Profile—Marc new, liberating body ideals for the public. Quinn,” Dec. 10, 2000. 7. Quinn has a certain reputation as a “bad boy” among art critics, exacerbated by inclusion in NOTES the controversial exhibit of 1991, in which he 1. Alison Lapper (with Guy Feldman), My Life in debuted one of his most famous pieces, Self My Hands (London; New York: Simon & Schuster (1991), a self-portrait bust made from 9 pints UK, Ltd., 2005), 236. of Quinn’s blood frozen. Some have connected 2. For example, Bert Massie, the chairman of the Alison Lapper Pregnant with a longer interest in commission, was quoted in The Guardian news- birth in Quinn’s work, as exemplified by Birth paper as stating: “Congratulations to Marc for or Lucas (2001), a frozen representation of his realising that disabled bodies have a power and son Lucas’ head made from real placenta, three beauty rarely recognised in an age where youth days old. His work has many bodily and biologi- and ‘perfection’ are idolised.” This article also cal themes; has worked with DNA imaging (DNA states that the Disability Rights Commission Garden (2002), grid of 77 Petri dishes), test tubes, welcomed the statue as a source of pride and and silicon preservation. Examples of Quinn’s a blow against the cult of perfection that effec- other works that use body fluids and forms are: tively disables bodies who don’t conform to the Yellow Cut Nervous Breakdown, Invisible Man, norm. Others have suggested, like Lapper, that No Invisible Means of Escape XI (formed from cast the work’s depiction of a specific embodiment white rubber resembling flesh), The Great Escape largely under-represented in visual life, at least in (a cast of his body inside pod), Continuous Present a positive way, broadens and humanizes notions (2000) (which features a skull that rotates around of beauty, as well as humanizes certain socially a reflective cylinder), Shit Paintings and Shit stigmatized individuals. For example, see: Adrian Head (1997), Incarnate (a boiled sausage form Searle, “Arresting, strange and beautiful,” The with his blood), Eternal Spring I and II (1998) (a Guardian (Friday September 16, 2005). series featuring Calla lilies suspended in water), 3. Some of the better known artists of this style are and Garden (2000) (a glass walled installation of the French painter Jacques-Louis David, as well flora and fauna that was deceptively composed as British painters Joshua Reynolds and Benjamin of frozen units of silicon). As exemplified by these West, and the sculptors Antonio Canova and examples, Quinn’s work has repeatedly used Bertel Thorvaldson. By reviving Classical figures, blood, placenta, excrement, ice, and flowers. He Neoclassical artists sought to portray eternal chooses materials are chosen because of their beauty and cultural idealism, in balanced, corporeality and symbolic connotations. symmetrical, and “able,” or extra-able bodies. 8. Kim Q. Hall, “Pregnancy, Disability and Gendered In Classical traditions, on which Neoclassicism Embodiment: Rethinking Alison Lapper SCULPTING BODY IDEALS | 409

Pregnant,” lecture delivered at the Society for simple truth is that Trafalgar Square is meant for Disability Studies Conference, Bethesda, MD, something else.’ Quoted from Cederwell. June 17, 2006. 18. Jeanette Hart, Letter to the editor, The Guardian 9. Januszczak. (Wednesday September 21, 2005). 10. Charles L. Griswold, “The Vietnam Veterans 19. Paul Usherwood, “The Battle of Trafalgar Square,” Memorial and the Washington Mall: Philoso- Art Monthly 2. no. 4 (March 2004), 43. phical Thoughts on Political Iconography,” in 20. Rodney Mace, Trafalgar Square: Emblem of Critical Issues in Public Art: Content, Context, Empire (Southampton, UK: The Camelot Press, and Controversy, Harriet F. Seine and Sally Ltd., 1976). Webster, eds., 71–100 (Washington and London: 21. For more on Gil, see Ann Millett-Gallant, “Little Smithsonian Institute Press, 1992), 74. Displays: The Photography of Ricardo Gil,” in 11. Trafalgar Square is a center of tourist and civil The Review of Disability Studies: An International exchange. It sits on a tourist path from the Houses Journal Issue 2, v.4 (June 2009). of Parliament and Westminster Abbey and at the top of The Mall, which leads to Buckingham Palace. The National Gallery, the Admiralty, and SELECTED BIBLIOGRAPHY the church of St. Martin in the Fields are also on the square. Cederwell, William. “What they said about . . . the 12. Alice Thomson of the Daily Telegraph was quoted fourth plinth,” The Guardian, Thursday March 18, in Cederwell. 2004. Fourth Plinth Project website: http://www. 13. Lapper, 236. fourthplinth.co.uk/ 14. Lapper, 234. Gisbourne, Mark. “The Self and Others” in 15. Miles. Contemporary (U.K.) no. 2 (Feb. 2002): 52–7. 16. At the south end of the square is an equestrian Hall, Kim Q. “Pregnancy, Disability and Gendered statue of Charles I in a conventional pose Embodiment: Rethinking Alison Lapper suggesting royalty and conquest, which is Pregnant,” lecture delivered at the Society for based on a famous Roman statue of Marcus Disability Studies Conference, Bethesda, MD, Aurelius and was also the favored position of June 17, 2006. Louis XV and Napoleon to emphasize their Hutchinson, Ray, editor. Constructions of Urban military strength and leadership (for example Space. Stamford, CT: Jai Press, Inc., 2000. in David’s triumphant, Neoclassical portrait Januszczak, Waldemar. The Sunday Times, “Matter of Napoleon Crossing the Alps (1801), which life and death—Art-Profile—Marc Quinn,” Dec. served as Imperial propaganda). On both sides 10, 2000. of Nelson’s Column are the bronze statues Jones, Jonathan. “Bold, graphic, subversive—but bad of Sir Henry Havelock and Sir Charles James art,” The Guardian (Tuesday March 16, 2004). Napier, and fronting the north wall of Trafalgar Kemp, M. and M. Wallace. Spectacular Bodies: The Art Square are busts of Generals Beatty, Jellicoe, and Science of the Human Body from Leonardo and Cunningham, all famous military leaders. to Now. London, Hayward Gallery; Los Angeles: All of the “heroes” are significantly honored for University of California Press, 2000. their participation in the colonization of India, Kennedy, Maev. “Pregnant and proud: statue of art- Egypt, and the Caribbean, and were known as ist wins place in Trafalgar Square,” The Guardian brutal leaders of mutinous soldiers who were (Tuesday March 16, 2004). often of the nationality of the countries the Lacy, Suzanne, editor. Mapping the Terrain: New Genre generals fought to dominate. Public Art. Seattle: Bay Press, Inc., 1995. 17. This opinion was expressed, for example, in the Lapper, Alison. My Life in My Hands. London; New following newspaper quote: “Roy Hattersley, in York: Simon & Schuster UK, Ltd., 2005. the Daily Mail, agreed that while the sculpture Mace, Rodney. Trafalgar Square: Emblem of Empire. was ‘a celebration of both courage and mother- Southampton, UK: The Camelot Press, Ltd., 1976. hood’, it was nevertheless ‘the wrong statue in Miles, Malcolm. Art, Space, and the City: Public Art and the wrong place.’ The Trafalgar Square plinth is Urban Futures. London and New York: Routledge, crying out for ‘individual examples of national 1997. achievement and British greatness,’ he said. Mitchell, David T. and Snyder, Sharon L. Narrative Hattersley drew up his own shortlist of likely Prosthesis: Disability and the Dependencies of greats, including Shakespeare, Milton, Elgar, Discourse. Ann Arbor: University of Michigan Newton and Wren. ‘Most of us will share the view Press, 2001. that Lapper is someone to admire . . . but the Preece, Robert. “Just a Load of Shock? An Interview 410 | ANN MILLETT-GALLANT

with Marc Quinn,” Sculpture 19, no. 8 (Oct. 2000): of Public Places. Poole, Dorset UK: Policy Studies 14–19. Institute Publications, 1995. Seine, H.F. and Webster, S. editors. Critical Issues in Usherwood, Paul. “The Battle of Trafalgar Square,” Art Public Art: Content, Context, and Controversy. Monthly 2. no. 4 (March 2004), 43. Washington and London: Smithsonian Institute Warner, Marina. Monuments and Maidens: The Press, 1992. Allegory of the Female Form. New York: Atheneum, Selwood, Sara. The Benefits of Public Art: The Polemics 1985. CHAPTER 30

“When Black Women Start Going on Prozac. . . .”: The Politics of Race, Gender, and Emotional Distress in Meri Nana-Ama Danquah’s Willow Weep for Me Anna Mollow

DISABILITY ESSENTIALISM; OR, enormous importance. They form the basis WHAT COUNTS? of a scholarship that has redefined disability, demonstrating that it is best understood Meri Nana-Ama Danquah’s Willow Weep not as a biological given, but rather as a for Me: A Black Woman’s Journey Through social process requiring sustained intellec- Depression is a first-person narrative by an tual and political attention. author who, without identifying as “dis- Yet Danquah’s memoir, in its deep enabled” or signaling any alliance with the gagement with the politics of race, gender, disability rights movement, instead de- class, and mental illness, forces a reconsid- scribes the “suffering” her “illness” caused eration of several of these tenets of disabil- and recounts her “triumph” over it, an ity studies. Most important, Willow Weep overcoming achieved through a combina- for Me makes it clear that disability studies, tion of “courage,” “resilience,” prescription which has tended to define disability as a drugs, and other medical interventions visual, objectively observable phenom- (237; 18; 262). As such, Danquah’s memoir enon, must also carefully attend to the is precisely the kind of text that much dis- phenomenological aspects of impairment, ability scholarship in the humanities has particularly those that involve suffering taught us to critique. Foundational work and illness. Such attention will necessi- in this field has stressed the formation and tate developing more nuanced ways of assertion of positive disability identities. It describing intersections of multiple forms has also underscored the distinction be- of oppression than have predominated tween illness and disability, describing dis- in the most influential disability scholar- ability in terms of visible bodily difference ship. Examining such intersectionality in rather than sickness or suffering. More- Danquah’s memoir complicates aspects over, disability scholars have criticized of some disabled people’s critiques of the personal narratives that highlight disabled medical or psychiatric model of mental ill- people’s courage or show them “overcom- ness; for many Black women with depres- ing” their impairments; framing disability sion, lack of access to health care, rather in terms of an individual’s struggle against than involuntary administration of it, is adversity, they have argued, deflects at- the most oppressive aspect of the contention from the political realities of dis- temporary politics of mental illness.2 Dan- ability oppression.1 These arguments have quah’s memoir may also be the basis for a 412 | ANNA MOLLOW

critique of a tendency, within much disabil- often represent the relationship between ity scholarship, to avoid representing im- people with disabilities and other politi- pairments in terms of sickness or suffering. cal minorities in hierarchical terms.5 In a The social model’s impairment/disability more subtle way, the frequent use of “like binary, which has often lead to a de-politi- race” analogies in disability scholarship cization of impairments, cannot be upheld may also have the effect of opposing the in Willow Weep for Me, which illuminates interests of disabled people and people of both the suffering that impairments can color. When Rosemarie Garland-Thomson cause and the role of politics in producing characterizes disability as a “form of eth- them. But on the other hand, Danquah’s nicity,” or when Lennard J. Davis compares narrative also complicates some disability “the disabled figure” to “the body marked theorists’ deconstructions of the impair- as differently pigmented,” it’s clear that ment-disability distinction. These post- neither intends to place race or ethnicity in modern analyses of impairment tend to opposition to disability; rather, they each see individuals’ reliance upon impairment seek to establish a likeness between two categories as invariably serving to buttress categories, and thus to gain recognition of hegemonic constructions of disability; but disabled people as members of a political Danquah’s autopathography demonstrates minority (Garland-Thomson, 6; Davis, EN, that such categories can be mobilized in 80). But as Trina Grillo and Stephanie M. ways that are politically resistant. Finally, Wildman have argued, “like race” analo- Willow Weep for Me presents challenges gies often have the effect of “obscuring the to disability studies’ critique of “stories of importance of race,” enabling the group overcoming”; by highlighting individuals’ making the analogy to take “center stage power in relation to oppressive political from people of color” (621). Moreover, such and economic structures, Danquah’s narra- analogies assume a false separation be- tive offers a powerful antidote to despair. tween the forms of oppression being com- In order apprehend the significance of pared. As Grillo and Wildman point out in Willow Weep for Me, a critical method that their discussion of analogies between race can account for intersections of multiple and gender, “[a]nalogizing sex discrimina- forms of oppression is crucial. “I am black; tion to race discrimination makes it seem I am female; I am an immigrant,” Danquah that all the women are white and all the writes. “Every one of these labels plays an men are African-American”; thus, they equally significant part in my perception observe, “the experience of women of color of myself and the world around me” (225).3 . . . is rendered invisible” (623). The dangers Unfortunately, disability studies has been of “like race” analogies in disability studies slow to theorize such intersectionality, par- are similar: if race and disability are con- ticularly when it comes to race. While works ceived of as discrete categories to be com- like Bonnie G. Smith and Beth Hutchin- pared, contrasted, or arranged in order of son’s 2004 anthology, Gendering Disability, priority, it becomes impossible to think testify to a growing interest in exploring through complex intersections of racism connections between gender and disabil- and ableism in the lives of disabled peo- ity, many of the most foundational works ple of color. This is not, of course, to deny in disability studies have analyzed race and that analogies can be useful; I share Ellen disability, not in tandem, but in opposition Samuels’s sense that rather than attempt- to each other.4 In their efforts to stake out a ing “somehow to escape from analogy,” claim for disability as worthy of intellectual we might “seek to employ it more critically and political attention, disability scholars than in the past” (4).6 “WHEN BLACK WOMEN START GOING ON PROZAC. . . .” | 413

These intersections must be understood clear that I am not suggesting any intrinsic in ways that are more than merely additive, relationship among Blackness, femininity, as Angela P. Harris argues in her critique and mental illness; nor do I propose to read of “gender essentialism—the notion that a Danquah’s memoir as representative of a unitary, ‘essential’ women’s experience can monolithic “Black women’s perspective be isolated and described independently on depression.”8 I do hope to show, how- of race, class, sexual orientation, and other ever, that examining the converging effects realities of experience” (585). According to of multiple forms of oppression can have an additive model of multiple oppressions, profound implications for disability stud- Harris argues, “black women will never be ies. Reading Willow Weep for Me with such anything more than a crossroads between effects in mind will require the rethinking two kinds of domination, or at the bot- of some of the field’s most central tenets: tom of a hierarchy of oppressions” (589).7 I its reluctance to understand disability in would therefore suggest that, in examining terms of sickness or suffering, its tendency intersections of forms of oppression, we to define disability in visual terms, and its guard against the dangers of a “disability resistance to stories of overcoming. If we essentialism,” in which the experiences, avoid this critical reevaluation, we risk mis- needs, desires, and aims of all disabled peo- reading as naïve or politically disengaged ple are assumed to be the same and those the work of Danquah and others whose with “different” experiences are accommo- perspectives diverge from disability stud- dated only if they do not make claims that ies’ entrenched ideas. undermine the movement’s foundational arguments. Many of these arguments have GOING ON PROZAC been developed primarily with physical disability in mind. Cognitive and psychiat- Among people with depression, the politics ric impairments, although they are gaining of mental illness are complex and highly more attention, nonetheless remain mar- contested. In particular, much controversy ginalized, both within disability studies surrounds questions about whether peo- and in the broader culture. I was recently ple who experience emotional distress are reminded of the extent of this marginaliza- sick. Throughout her memoir, Danquah tion when I mentioned to a colleague that emphasizes that her depression is an “ill- I was writing an essay on Black women ness”; by doing so, she adopts a strategy and depression; she responded by asking, that diverges from that of the psychiatric “Does depression count as a disability?” survivor movement (18). Members of this Her question is crucial. “The short answer,” movement define themselves as “survi- I told my colleague, “is ‘yes’.” The longer vors,” not of mental illness, but rather of answer would have involved a discussion institutionalization in psychiatric hos- of the ways in which truly “counting” the pitals.9 Indeed, they often reject the very experiences of people with mental illness category of “mental illness,” which they might necessitate revising some of disabil- view as a largely meaningless invention of ity studies’ most frequently cited claims. modern psychiatry that serves to enforce While the necessity of such revisions be- conformity to social norms and to derive comes particularly evident when the poli- money and power for mental health “ex- tics of race, gender, and mental illness are perts.” Protesting doctors’ excessive con- analyzed together, the arguments that fol- trol over the lives of people we diagnose low should not be taken as part of an unitary as “mentally ill,” psychiatric survivors de- account of such intersections: I wish to be scribe incarceration in mental institutions 414 | ANNA MOLLOW

that are often run like prisons, as well as the effect of “hormones” (36). Years later, nonconsensual administration of “thera- she seeks treatment but has great difficulty pies” that resemble punishments or even locating a mental health clinic she can af- torture.10 Moreover, they note that psy- ford. Danquah is able to pay for only one of chiatrists themselves are unable to define the medications she is prescribed, Zoloft, mental illness; that no biological or genetic an antidepressant. Anxiety is a side effect cause of any putative mental disorder has of Zoloft, so her doctor writes her a pre- ever been demonstrated; and that the most scription for BuSpar, an anxiety control- common treatments—psychoactive medi- lant. This drug, however, is prohibitively cations, electroconvulsive therapy (ECT), expensive, so Danquah resorts to alcohol to seclusion, and physical restraints—have manage the side effects of her antidepres- no proven benefits and cause debilitat- sant. Indeed, the Zoloft seems to cause an ing side effects, including brain damage.11 insatiable craving for alcohol, which dis- Survivors’ testimonies demonstrate the ap- appears when she discontinues the medi- palling extent to which the label of “mental cation (221). Danquah is forced to figure illness” has been used to deprive people of most of this out without any medical su- autonomy, respect, and human rights.12 pervision. Most of the practitioners at the What, then, do we make of Danquah’s mental health clinic she goes to are thera- definition of her depression as a “mental pists-in-training, and hers leaves abruptly illness” (20)? In what context do we un- once she has completed her certification derstand her emphasis upon the necessity process. Rather than being “reassigned” of taking antidepressant medication? “I at random to another therapist, Danquah have tried to deny my need for medication suspends psychotherapy (208). and stopped taking it,” Danquah explains. In addition to economic obstacles, Dan- “Each time, at the slightest provocation, I quah faces cultural barriers to appropriate have fallen, fast and hard, deeper into the health care. Her psychiatrist, Dr. Fitzgerald, depression” (220; 258). However, Danquah is a white man who describes at length his does not regard depression as purely a inability to “even fathom” the racism with medical phenomenon. “The illness exists which she routinely copes (224). Experi- somewhere in that ghost space between ences like this are commonplace for African consciousness and chemistry,” she writes American women seeking mental health (257–58). She takes her Paxil “reluctantly,” care. Julia A. Boyd, an African American observing that “there is something that psychotherapist, observes that many white seems really wrong with the fact that Pro- mental health practitioners “remain in a zac is one of the most prescribed drugs in passive state of denial concerning the ther- this country” (258).13 apeutic needs of black women” (“Ethnic,” But for Danquah, in contrast to members 232). In addition, people of color, especially of the psychiatric survivor movement, lack African Americans, are less likely to be diag- of access to health care, rather than invol- nosed with depression or prescribed medi- untary imposition of it, is the most salient cation when they report their symptoms to aspect of her interactions with the medical a doctor; even in studies controlling for in- profession. Danquah sees adequate medi- come level and health insurance status, the cal treatment for her depression as a neces- disparities are great.14 sity, to which poverty, racism, and gender The contrast between Danquah’s ex- bias have created almost insurmountable perience and that of many members of barriers. Her obstetrician dismisses one of the psychiatric survivor movement high- her first episodes of severe depression as lights a conundrum facing people with “WHEN BLACK WOMEN START GOING ON PROZAC. . . .” | 415 depression or other mental illnesses. The Black people. While white people are more enormous power that the psychiatric pro- often diagnosed with depression and pre- fession wields in modern Western societies scribed antidepressants, African Ameri- creates a double bind, in which both diag- cans are diagnosed with schizophrenia at nosis with a mental illness or, alternatively, much higher rates and are also given an- the lack of such a diagnosis, brings with it tipsychotic medications more frequently serious negative social consequences for and in higher doses. They are also more people experiencing emotional distress.15 often institutionalized involuntarily, in Being diagnosed with a mental illness part because racial stereotypes affect psy- means risking social stigmatization, invol- chiatrists’ assessments of their “danger- untary institutionalization, and treatment ousness.”18 The pathologization of Black with dangerous medications. On the oth- people is also built into what Danquah er hand, those who are not deemed truly terms “the oppressive nature of the exist- mentally ill are often regarded as merely ing language surrounding depression,” the malingering. Depression, Danquah ob- commonplace metaphors of depression as serves, is “not looked upon as a legitimate darkness and blackness (21–22). 19 illness. Most employers really don’t give a Danquah’s critique of the politics of race damn if you’re depressed, and neither do and mental illness exposes and protests landlords or bill collectors” (144). linguistic, social, cultural, and economic This lack of social validation and sup- barriers that impede Black women with port is exacerbated by racism. The symp- depression from accessing health care. In toms of depression, Boyd points out, often contrast to the psychiatric survivor move- “mirror the stereotypes that have been pro- ment, her primary focus is on this lack of jected onto Black women”; before she was access, rather than the effects of invol- diagnosed with the disorder herself, Boyd untary treatment. But she shares with thought that “being depressed meant that psychiatric survivors a profound sense you were crazy, lazy, unmotivated” (8; 15). of the importance of self-determination Moreover, as Danquah notes, depression and control over one’s own medical treat- is “still viewed as a predominantly ‘white’ ment. Danquah begins to see significant illness”; when Black people become de- improvement in her depression when, as pressed, the symptoms and coping strat- she puts it, “I took control of my own heal- egies usually go unrecognized (184).16 ing” (225). Recognizing that her own role in Pervasive social denial and lack of access her treatment is more important than that to necessary medical care are the politi- of her psychiatrist, she realizes, “it did not cal realities that Danquah highlights in her make that much of a difference to me if Dr. account of her struggles with depression. Fitzgerald was listening or not, if he cared While these realities are inextricable from or not, if he understood or not. I was listen- the politics of race, I do not wish to suggest ing. I was hearing. I was understanding. I that all Black women with depression share cared” (225–26). Danquah’s perspective on the medicalization of emotional distress.17 DISABILITY OR IMPAIRMENT? In addition, it is important to remem- DEPRESSION AND THE SOCIAL ber that the other aspect of the double MODEL bind I have described—i.e., diagnosis of a mental illness as the justification for in- Danquah’s understanding of her depres- voluntary confinement and forcible “treat- sion as a “disease” not only adds another ment”—also carries additional risks for dimension to the psychiatric survivor 416 | ANNA MOLLOW

movement’s critique of the mental health chronic and terminal illnesses as disabling profession, but also complicates what has forms of impairment. However, in practice come to be known as the “social model” of this critique often functions to differenti- disability. The social model was developed ate people with disabilities from those who in Britain in the 1970s; a key moment in are ill.21 Arguing for greater inclusion of its emergence occurred in 1976, when the people with chronic illness in the disabil- Union of the Physically Impaired Against ity community, Susan Wendell takes issue Segregation (UPIAS) published its Funda- with Eli Clare’s contention that people with mental Principles of Disability. Perhaps disabilities should not be regarded as “sick, the most important of these “fundamental diseased, ill people” hoping to be cured principles” was the crucial distinction the (Wendell 18; Clare 105). As Wendell points document made between “impairment” out, “some people with disabilities are sick, and “disability”: diseased, and ill”; moreover, she observes, some disabled people “very much want” to In our view it is society which disables physi- be cured (18). Danquah expresses this wish cally impaired people. Disability is some- at the end of her memoir: “I choose to be- thing imposed on top of our impairments, lieve that somewhere, somehow, there is a by the way we are unnecessarily isolated and excluded from full participation in society cure for depression” (257). . . . (3) If the experiences of those who define themselves as ill and hope to be cured are UPIAS’s differentiation between the bodily elided in much disability scholarship, this (impairment) and the social (disability) may be due in part to the field’s emphasis formed the basis of what Mike Oliver sub- on visible aspects of disability. Garland- sequently presented as the “social model Thomson’s definition of disability as a of disability.”20 The social model, like the process that emerges through “a complex minority group model that emerged in the relation between seer and seen” is of great United States, has enabled major transfor- value in thinking about the “extraordinary mations in the conceptualization of dis- bodies” she discusses, but the framing of ability; rather than accepting traditional disability in terms of outward appearance definitions of disability as a personal mis- is less useful for analyzing depression and fortune, this new paradigm frames disabil- other invisible impairments, particularly ity in terms of social oppression. those that involve sickness and suffering What the social model may sacrifice, (136). Similarly, Harlan Hahn’s positing of however, is a way of thinking in political a “correlation between the visibility of dis- terms about the suffering that some im- abilities and the amount of discrimination pairments cause. As Liz Crow points out, which they might elicit” has little to do with the social model sometimes has the ef- Danquah’s experience.”22 Danquah loses fect of obscuring the reality that “[P]ain, friends and jobs precisely because her dis- fatigue, depression and chronic illness are ability is not visible and therefore is not rec- constant facts of life” for many people with ognized as a “legitimate illness” (144; 30). disabilities (58). This problem is pervasive Indeed, disability studies’ emphasis not only in applications of Britain’s social upon observable manifestations of im- model, but also in disability studies in the pairments makes it difficult to know how United States, where the “critique of the to begin thinking about a condition like medical model” is a fundamental prin- depression, which is primarily a subjective ciple. Critiquing the medical model does experience. Moreover, it is an experience not necessarily preclude recognition of characterized by suffering: “Suffering . . . “WHEN BLACK WOMEN START GOING ON PROZAC. . . .” | 417 was what depression was all about,” Dan- account of her struggles with depression quah reflects (237).23 The issue of suffering (Oliver, UD, 12). A lack of social validation has been vexed within disability studies. As or understanding, although a persistent Bill Hughes and Kevin Paterson observe, facet of her experience, seems to recede “Disabled people . . . feel uncomfortable into the background of the intense and pro- with the concept of suffering because . . . longed suffering in which her depression it seems inextricably bound to a personal immerses her. Throughout Willow Weep tragedy model of disability” (336). As Oliver for Me, Danquah describes this suffering states, “the social model is not about the in vivid and often metaphorical language, personal experience of impairment but the which contrasts with her matter-of-fact re- collective experience of disablement” (“So- ports of lost friends and career opportuni- cial,” 22). However, the strategy of main- ties. She writes that her life “disintegrated; taining a focus on social oppression rather first, into a strange and terrifying space of than personal suffering—or on “disability” sadness and then, into a cobweb of fatigue” as opposed to “impairment”—risks reify- (27). She describes “nails of despair . . . dig- ing a dichotomy that does not easily apply ging . . . deeply into my skin” and “a dense to disorders like depression. While impair- cloud of melancholy [that] hung over my ments ranging from cerebral palsy to blind- head” (30). As her depression worsens, she ness, spinal cord injury, or autism do not writes, “It seemed as if the world was clos- always cause suffering in and of themselves, ing in on me, squeezing me dry” (32). She it makes little sense for a person to say she remembers “absolute terror” and “despair is clinically depressed but does not suffer. [that] cut so deeply, I thought it would slice And whereas it’s illuminating, when dis- me in half” (42; 106). As such stark descrip- cussing the politics surrounding mobility tions of suffering make clear, relegating impairments, to observe that disability re- “impairment” to a secondary status within sults from inaccessible architectural struc- an impairment-disability binary elides the tures rather than from bodily deficiency, phenomenological aspects of depression it’s difficult to use this paradigm to under- as a state of suffering. stand depression. It is true that, to a certain Moreover, analyses that privilege dis- extent, one could apply the impairment/ ability over impairment deflect attention disability distinction to Danquah’s expe- from the political nature of impairment rience. Arguably, Danquah’s impairment, itself. In Danquah’s narrative, the social depression, becomes disabling because of environment is important less for its im- a societal unwillingness to accommodate position of an additional burden “on top it: “I lost my job because the temp agencies of” a pre-existing impairment than for its where I was registered could no longer tol- role in producing her depression (UPIAS, erate my lengthy absences,” she recounts 3). When Danquah is a child, her school- (30). “I lost my friends. Most of them found mates ostracize her, mocking her accent it too troublesome to deal with my sudden and calling her “the African Monkey” (104). moodiness and passivity” (30). These social She recalls that the “host of . . . horrid epi- pressures correspond to UPIAS’s definition thets” to which she was subjected “shat- of “disability” as “something imposed on tered any personal pride I felt and replaced top of our impairments” (3). it with uncertainty and self-hatred” (105). But an analysis of Danquah’s text that When her father abandons the family, Dan- privileges “the collective experience” of quah begins to think of herself as “the ugly disability over “the personal experience” little girl, the ‘monkey,’ the fatherless child” of impairment would greatly distort her (109). In junior high, she is raped by a 418 | ANNA MOLLOW

recent high school graduate she has a crush broad and shifting, never corresponding to on (120). When she confides in her stepfa- the present-day disease category of “clini- ther about the incident, he rapes her, too; cal depression.” The instability of depres- the sexual abuse continues throughout sion as a discrete medical phenomenon her adolescence (124). As a young adult, is further evident in the extent to which undiagnosed postpartum depression cou- those who wish to establish it as such must pled with physical abuse by the father of continually define it by differentiating it her child contribute to an episode of seri- from ordinary states of sadness. “Depres- ous depression. A subsequent episode is sion isn’t the same as ordinary sadness, it triggered by the “not guilty” verdict in the is hell,” Danquah’s friend Scott says (260). Rodney King trial: “We, all black people, Or, as Danquah explains, “We have all, to had just been told that our lives were of no some degree, experienced days of depres- value,” Danquah remembers (42). sion . . . But for some, such as myself, the depression doesn’t lift at the end of the day . . . And when depression reaches clinical DISTRESS OR DISEASE? proportions, it is truly an illness” (18).25 DECONSTRUCTING THE SOCIAL Moreover, whereas most people in our MODEL culture would not question the validity As Danquah’s story illustrates, the op- of diseases like diabetes, cancer, or rheu- pression of disabled people is not matoid arthritis, skeptics abound when it merely “something imposed on top of” a pre- comes to depression. Eboni, one of several existing impairment; rather, the produc- African American woman with whom Boyd tion of some impairments is itself a politi- engages in a dialogue about depression, cal process (UPIAS, 3). Therefore, Willow says, “look at what our mothers and grand- Weep for Me might at first seem to accord mothers went through in their lives and with the arguments of some disability we don’t hear them whining about depres- scholars who, deconstructing the impair- sion” (CI, 21). Eboni’s comments not only ment/disability binary, claim that impair- underscore the constructedness of depres- ment is a discursive production.24 Shelley sion as a clinical entity, but also raise an- Tremain argues that a Foucaultian analysis other set of questions. While it’s relatively will reveal “that impairment and its mate- easy to observe that depression cannot be riality are naturalized effects of disciplinary regarded as a prediscursive bodily or men- knowledge/power” (SI, 34). Locating the tal “given,” what remains unclear are the origins of modern-day categorizations of possible effects of the processes by which it bodies as normal or impaired in the nine- is currently being consolidated as a defin- teenth-century bio-medical discourses able and describable disease. For example, whose genealogies Foucault traces, Tre- does the construction of depression as an main observes that impairment is neither illness enable a potentially emancipatory a “‘prediscursive’ antecedent” nor a set of reinterpretation of behaviors traditionally “essential, biological characteristics of a regarded as moral weakness, such as the ‘real’ body” (SI, 42). “whining” that Eboni dismisses? It is in part Indeed, Tremain’s theorization of im- to distinguish depression from “a character pairment is à propos to any discussion of flaw” that Danquah insists that depression depression, whose constructedness as a “is truly an illness” (18). But Tremain’s anal- disease entity is easily apparent. While the ysis of the constructedness of impairments term “melancholy” is as old as ancient Greek raises the possibility that Danquah’s self- medicine, its defining features have been construction as a “depressive” might have “WHEN BLACK WOMEN START GOING ON PROZAC. . . .” | 419

“insidious” effects (Danquah, 18; Tremain, be said of depression. Indeed, the project SI, 37). Reliance on biomedicine’s con- of solidifying depression as a bona fide structions of bodily and mental difference, medical condition is grounded in the ex- Tremain argues, may only further consoli- pectation that it will one day be possible to date the pervasive power of disciplinary identify specific biological markers of the regimes (SI, 42). disorder and thus to demonstrate that de- Tremain’s characterization of impair- pression is an organic disease of the brain. ments as discursively produced is cogent Because such signs remain elusive, the and insightful. However, as I will argue, construction of depression as a disease is Willow Weep for Me demonstrates that im- presently occurring in ways that differ sig- pairment categories can be cited in ways nificantly from the discursive materializa- that, rather than merely “meet[ing] require- tion of most of the impairments that receive ments of contemporary political arrange- attention in disability studies; that is, from ments,” instead also serve to undermine most visible impairments.28 Western medi- them (Tremain, SI, 42; FG, 10). To eluci- cine has obtained significant knowledge date this process, it will be helpful to re- about impairments such as cataracts, coli- flect upon the epistemic shift that Foucault tis, and heart disease, all of which manifest and other historians have documented visible signs, without much active partici- in late eighteenth- and early nineteenth- pation on the part of the patient; but a de- century medicine. With the rise of clinical pressed person, to be understood as such, medicine in the nineteenth century, the must be a subject who communicates.29 physical examination and the dissection Moreover, he or she must have a degree of of corpses supplanted patients’ stories as psychological depth that a patient being the privileged modes of generating medi- examined for signs of a physical ailment cal knowledge.26 The dominant medical need not be recognized as possessing. In- epistemology became visual rather than stead of simply reporting a pain or display- narrative: the patient came to be seen as ing a rash, a fever, or a tremor, the depressed a passive body, manifesting visible signs patient is most often subjectivized as such of disease which could be interpreted by through the production of a narrative.30 It the doctor’s detached “gaze.”27 These vis- is perhaps for this reason that, as Danquah ible “signs,” or objective manifestations of observes, our culture is so reluctant to rec- disease, were privileged over “symptoms,” ognize depression in Black women. It is which referred to subjective sensations the “hard,” she remarks, “for black women to patient reported (Porter, 313). The sign/ be seen as . . . emotionally complex” (21). symptom binary remains a centerpiece of Yet it would certainly be a mistake to ro- contemporary medical epistemology, and manticize medicine’s inclusion of subjects’ its continued importance helps explain accounts of their distress in its process of why depression has not been regarded as consolidating depression as a disease en- a “real” disease in the same way as illness- tity. The incorporation of patients’ stories es such as arthritis or multiple sclerosis, into medical discourses on depression or which can be visualized on X-rays or MRIs. other forms of “mental illness” is shaped Whereas the careful observation of bodily by a profound power imbalance between changes, the dissection of cadavers, and doctors and patients. While a diagnosis eventually the emerging science of bacte- of depression is rarely made without the riology enabled nineteenth-century physi- participation of the patient as a speak- cians to define diseases like tuberculosis as ing subject, once one is labeled “mentally distinct clinical entities, the same cannot ill,” one is often treated as less than a full 420 | ANNA MOLLOW

subject, denied the right to choose a course Such a contestation takes shape in Dan- of treatment or decline medical interven- quah’s autopathography, which depends tion altogether.31 Moreover, as Anne Wil- upon biomedicine’s construction of de- son and Peter Beresford point out, patients pression as a disease entity but at the same defined as “mentally ill” have little control time resists the normalizing effects of this over the ways in which their words are construction. Danquah articulates her represented and interpreted in their medi- sistance to the disciplinary uses of depres- cal records. Wilson and Beresford, who are sion as a medical category in ways that themselves psychiatric system survivors, Foucault’s concept of a “reverse discourse” recall that “it can feel as if everything you can illuminate. Foucault argues that the say or do is being taken down and recorded nineteenth-century emergence of psychi- to be used in evidence against you” (148). atric and other discourses that brought into In addition, they point out, “as medical re- being “the homosexual”as a “species” had cords are ineradicable, they also serve to the effect, not only of enabling “a strong make permanent and immutable the os- advance of social controls into this area of tensible psychopathological difference or ‘perversity,’” but also of making “possible ‘disorder’ of those diagnosed ‘mentally ill’ ” the formation of a ‘reverse’ discourse: ho- (149). mosexuality began to speak on its own be- This power imbalance between doc- half, to demand that its legitimacy . . . be tors and “mentally ill” subjects exerts itself acknowledged, often in the same vocabu- in more subtle ways as well. Wilson and lary, using the same categories by which it Beresford relate that “it can be difficult was medically disqualified” (HS, 101–02). even to begin to make sense of our expe- Danquah’s narrative might be understood rience outside of frameworks provided by as participating in a “reverse discourse” ‘experts,’ whose theories and powers may regarding depression. As we have seen, it extend to every aspect of our lives, not least employs the categories of psychiatric med- our identity as ‘mentally ill’ (non-)persons” icine in order to demand that depression’s (145). This observation seems to illustrate “legitimacy . . . be acknowledged” (HS, Foucault’s claim that the “individual is an 101). Depression, Danquah maintains, is effect of power” (TL, 98). And indeed, Fou- “a legitimate illness”; she is not “a flake or cault’s arguments about subject formation a fraud” (144).32 raise questions about the relation of Dan- Additionally, at the same time that she quah’s narrative to dominant psychiatric emphasizes that depression is an authentic discourses. Does Danquah, by defining medical condition, Danquah also subverts herself as a “depressive,” merely reinscribe some of psychiatry’s most fundamental the dictates of psychiatric medicine (18)? assumptions about what it means to be According to Tremain, “a Foucauldian ap- mentally ill. If today’s “depressive” is “dis- proach to disability” shows that “the cat- qualified” in ways analogous to the disqual- egory of impairment . . . in part persists in ification of Foucault’s nineteenth-century order to legitimize the disciplinary regime “homosexual,” Danquah’s narrative per- that generated it” (FG,11; SI, 43). Tremain haps mobilizes a reverse discourse that re- does not explore the possibility, however, sists this disqualification while nonetheless that the production of specific impairment retaining the vocabulary and diagnostic categories might have multiple, compet- categories that enable it. This can be seen ing effects, including, paradoxically, the in Danquah’s emphasis on the imbrication contestation of the assumptions on which of her illness with political oppression. A these categories are based. common mode of discrediting people with “WHEN BLACK WOMEN START GOING ON PROZAC. . . .” | 421 depression effects a discursive separation herself as “Other,” but because she is able of symptoms from politics: depression is to imagine the dissolution of what Wilson said to arise from feelings, beliefs, and atti- and Beresford call psychiatry’s “opposi- tudes which are disproportionately “nega- tion between ‘the mad’ and ‘the not-mad’ ” tive” in relation to the afflicted person’s (154). Indeed, her sense that the depressive actual circumstances.33 Indeed, this is Eb- is not a distinct species, but rather a mem- oni’s critique of psychiatric constructions ber of a community of “ordinary people,” of depression: “I didn’t hear where any of finds echo in Wilson and Beresford’s as- those big-time researchers were lookin’ at sertion that “the world does not consist of things like racism or sexism,” she points ‘normals’ and ‘the mentally ill’; it consists out (21). But this, of course, is exactly what of people” (Danquah 167–68; Beresford Danquah does look at. By showing how the and Wilson, 144). convergence of racism, sexual violence, Like the arguments of critics who use and poverty literally made her ill, Danquah Foucaultian paradigms to analyze dis- insists upon the validity of depression as ability, Danquah’s work demands a de- a diagnostic category while at the same construction of the impairment/disability time contesting hegemonic accounts of its distinction, forcing a theorization of im- etiology. pairment as itself a social process. Yet Dan- Moreover, even as Danquah accepts quah nonetheless accepts the category of the designation of her emotional distress mental illness and makes it integral to her as a “disease,” she also undermines one of self-conception. For this reason, an appli- psychiatric medicine’s most fundamental cation of Tremain’s or Wilson and Beres- claims (18). As Wilson and Beresford point ford’s analyses of the constructedness of out, psychiatry’s justification as an institu- impairment categories might seem to au- tion relies in large part upon “its construc- thorize a reading of Danquah’s narrative tion of users of mental health services as as “naïve,” unaware of how the category of Other—a separate and distinct group” impairment operates within what Tremain, (144). Interestingly, however, Danquah’s following Foucault, calls the “insidious” gradual process of accepting that she is ill production of “an ever-expanding and in- and needs medical treatment paradoxi- creasingly totalizing web of social control” cally culminates in her deconstruction of (SI, 34; 37; FG, 6).34 But as we have seen, the normal/mentally ill binary upon which Foucault’s understanding of power is more psychiatry’s authority depends: flexible than Tremain’s characterization of it here suggests.35 Rather than “a general I had always only thought of therapy in system of domination” whose “effects . . . stark, clinical terms: an old bespectacled pervade the entire social body,” Foucault grey-haired white man with a couch in his describes a “multiple and mobile field of office listening to the confessions of crazies. force relations, wherein far-reaching, but . . . What if, I asked myself, those “crazies” never completely stable effects of domina- are no different than me? What if they are tion are produced” (HS, 92; 101–02; em- like me, ordinary people leading ordinary lives who woke up one day and discovered phasis mine). “Discourse,” he explains, they couldn’t get out of bed, no matter how “reinforces” power “but also undermines much they wanted to or how hard they tried? and exposes it” (HS, 101). (167–68) Foucault’s conception of discourse as reversible points to the possibility that in- Danquah decides to enter psychotherapy, dividuals might invoke discursive construc- then, not because she comes to define tions such as “depression” so as to do more 422 | ANNA MOLLOW

than merely, as Tremain puts it, “identify Butler’s discussion of “citational poli- themselves in ways that make them gov- tics” focuses primarily upon instances in ernable” (SI, 37; FG, 6). It is true that, as Da- which “the public assertion of queerness” vid Halperin remarks, Foucault is critical “of has the effect of “resignifying the abjec- discursive reversal . . . as a political strategy” tion of homosexuality into defiance and in contemporary Western societies (58). legitimacy” (21). Although Danquah does Nevertheless, for Foucault a “reverse dis- not treat race, gender, or mental illness in course” can constitute “a significant act of ways that correspond exactly to Butler’s political resistance”; it is by no means “one description of queerness as performativ- and the same as the discourse it reverses” ity, one can nonetheless discern in Willow (Halperin, 59). Foucault explains that al- Weep for Me a “reworking of abjection into though reverse discourses and other forms political agency” (Butler, 21).37 Throughout of resistance cannot be delployed “outside” her memoir, Danquah foregrounds abjec- of power, “this does not mean that they are tion in the form of “weakness” (20). She only a reaction or rebound . . . doomed to observes that although mental illness is of- perpetual defeat” (HS, 95; 96). ten regarded as a sign of “genius” in white Tremain accurately observes that the men, of hysteria in white women, and of institutionalization of reverse discourses pathology in Black men, “when a black as identity politics movements poses sig- woman suffers from a mental disorder, the nificant dangers.36 However, I wish to chal- overwhelming opinion is that she is weak. lenge what seems in her argument to be a And weakness in black women is intoler- global suspicion of any and all processes able” (20). of “iteration and reiteration of regulatory It is perhaps also unthinkable: “Clinical norms and ideals about human function depression simply did not exist . . . within and structure, competency, intelligence the realm of possibilities for any of the black and ability” (SI, 42). This suspicion seems women in my world,” Danquah explains to derive in part from Tremain’s mapping (18–19). “Emotional hardship is supposed of Judith Butler’s deconstruction of the to be built into the structure of our lives” sex/gender binary onto the social model’s (19). Indeed, when Danquah tells a white distinction between impairment and dis- woman she meets at a dinner party that ability (SI, 38–41). But the “reiteration” she’s writing a book on Black women and that Tremain regards as functioning to depression, the woman responds sarcasti- “sustain, and even augment, current social cally: “Black women and depression? Isn’t arrangements,” is precisely the process in that kinda redundant? . . . [W]hen black which Butler finds potential for revision women start going on Prozac, you know of cultural norms and identity categories the whole world is falling apart” (19–20). (SI, 42). Butler argues that “‘sex’ ” is mate- The foreclosure of depression as a pos- rialized “through a forcible reiteration” of sible diagnosis for Black women, Danquah “regulatory norms”; however, this process argues, derives from the “myth” of Black produces “instabilities” and “possibilities women’s “supposed birthright to strength” for rematerialization,” in which “the force (19). “Black women are supposed to be of the regulatory law can be turned against strong—caretakers, nurturers, healers of itself” (4). This turning of the regulatory other people—any of the twelve dozen law against itself, Butler suggests, might variations of Mammy (19).38 be achieved through what she calls a “cita- By linking the image of the strong Black tional politics,” which entails a “reworking woman to the stereotype of the “mammy,” of abjection into political agency” (21). Danquah points to the history of slavery “WHEN BLACK WOMEN START GOING ON PROZAC. . . .” | 423 in the United States as one of its possible transgresses the expectation that when origins. As Patricia Hill Collins observes, Black women suffer, they do so silently the figure of the “mammy,” or the “faithful, and stoically (19). Refusing any denial of obedient domestic servant,” was invented her pain, Danquah unflinchingly describes in order to “justify the economic exploita- the shame and self-loathing that are both tion of house slaves” (71). Danquah’s con- symptoms and sources of her depression. testation of the ideal of an inherently strong She relates that amid a severe episode of Black womanhood thus resists the social depression she stopped bathing and clean- demand that Black women deny their own ing her house, leaving “a trail of undergar- emotional and material needs in order to ments and other articles of clothing” on the attend to those of others.39 As Evelyn C. floor, “dishes with decaying food” on “every White writes, “the vulnerability exposed counter and tabletop” (28). She recalls feel- in Willow Weep for Me . . . will do much to ing “truly pitiful,” “hating myself so much I transform society’s image of Black women wanted to die” (219; 106). “Something had as sturdy bridges to everyone’s healing ex- gone wrong with me,” she realizes (29). cept their own” (Danquah NP). This conclusion may seem at odds with Paradoxically, while the notion that Black one of the central messages of the disabil- women are uniquely equipped to endure ity rights movement. Oliver’s critique of hardship has historically served as a justifi- the medical model on the grounds that it cation for their oppression, it may also have “tends to regard disabled people as ‘having enabled their survival. “Given the history something wrong with them’ and hence of black women in this country,” Danquah [being] the source of the problem” is a te- argues, “one can easily understand how net of disability studies (“Social,” 20). And this pretense of strength was at one time while I certainly do not wish to reinstall necessary for survival” (NP). The belief hegemonic constructions of disability as that strength is a legacy of slavery persists a form of individual weakness or inferior- in Black communities, Danquah remarks, ity, I would suggest that in Danquah’s nar- pointing out that it is not only white people rative it’s more complicated than a simple who dismiss Black women’s depression. “If opposition between an individual and a our people could make it through slavery, social problem. Rather than imagining a we can make it through anything,” Black wall of immunity between self and soci- men and women have told Danquah (21). ety, Danquah dramatizes the impossibility But what this “stereotypic image of strength of ever remaining untouched by all that is . . . requires” of Black women, Danquah wrong in the world (29). And her recogni- emphasizes, “is not really strength at all. It tion that something has “gone wrong” with is stoicism. It is denial. It is a complete ne- her is neither an indictment of herself as gation of their pain” (NP).40 “the source of the problem” nor a cause Because Black women’s emotional suf- of shame; instead, it is the impetus for her fering is generally regarded as normative decision to make “a commitment to being and unproblematic—“part of the package,” alive” (Oliver, 20; Danquah, 230). as Danquah puts it—rather than symp- This commitment requires a valuing tomatic of a condition in need of a remedy, of herself that contrasts sharply with the Danquah’s pathologization of her distress “stereotypic image of strength” with which cannot be seen as merely an accession to “African American women who are battling the social norms upon which the category depression must, unfortunately, contend” of “mental illness” depends; rather, by de- (Danquah NP). The strength that Danquah fining her suffering as sickness, Danquah displays—and it would be impossible to 424 | ANNA MOLLOW

come away from her book without feeling economic realities of women, blacks, single the magnitude of that strength—is neither parents, or any combination of the three” endurance nor self-sacrifice; rather, it is make “my chances for a life that is free of what Danquah describes as a readiness “to depression appear to be slim . . . While I claim the life that I want” (266). recognize the importance of such information, I regard most of the data as blather and refuse to embrace it” (257). This refusal SHALL WE OVERCOME? is not a denial of political realities; rather, Danquah’s memoir about depression ends it is an unwillingness to accept defeat, an on a hopeful note. “Having lived with the assertion of personal strength amid over- pain,” she writes, “I know now that when whelming social oppression. As Danquah you pass through it, there is beauty on the puts it, it is a “standing up in defiance of other side” (266). Indeed, as her book’s those things which had kept me silent and subtitle indicates, hers is a “Black woman’s suffering to say that I, an African American journey through depression” (emphasis woman, have made this journey through mine). As such, Willow Weep for Me could depression” (NP). be read as a story of overcoming. The blurb on the back cover of the paperback edition NOTES promises “an inspirational story of healing,” and Danquah herself employs many I would like to thank Richard Ingram, Robert McRuer, of the linguistic conventions associated and Sue Schweik for their feedback on earlier versions of this essay. with overcoming narratives. It takes “courage, devotion, and resilience” to “contend 1. See Garland-Thomson 135–37; Linton 17–19; with depression” and to “triumph” over the and Mitchell and Snyder 9–11. See also note 21 below. illness, she writes (262). Such an empha- 2. Lack of access to health care is tied to the politics sis on individual strength is at the crux of of both race and class. Cultural, linguistic, and what many disability scholars critique in geographical barriers, as well as racist stereo- narratives of overcoming. As Simi Linton types, present specific impediments for African argues, “the ideas embedded in the over- American, Latino/a, Asian American, and Native American people seeking medical treatment for coming rhetoric are of personal triumph depression, regardless of income level and health over a personal condition,” rather than a insurance status (“Mental”). Access to health collective demand for “social change” (18). care has received less attention in disability stud- There is enormous value in this observa- ies than in the disability rights movement, where tion, and I wholeheartedly concur with it has often been the focus of organizing. 3. Born in Ghana, Danquah emigrates to the United Linton’s objections to representations of States when she is six years old (103). Although disability that make “the individual’s re- being an immigrant is of great importance to sponsibility for her or his own success . . . Danquah’s self-definition, this aspect of her paramount” (19). But as we have seen, the identity receives far less attention in her memoir opposition between disability as personal than race, gender, class, or mental illness. 4. A special issue of GLQ, Desiring Disability: Queer misfortune and as social problem is not Theory Meets Disability Studies (2003), edited by tenable in Danquah’s autopathography, Robert McRuer and Abby Wilkerson, is devoted which understands depression as inextri- to the topic of queerness and disability. cably both of these things. And if despair 5. In the introduction to The Body and Physical Dif- is both a cause and a symptom of depres- ference, David T. Mitchell and Sharon L. Snyder write that “while literary and cultural studies sion, then perhaps part of its solution is a have resurrected social identities such as gen- 41 hope that is both personal and political. der, sexuality, class, and race from . . . obscurity As Danquah explains, “The social and and neglect . . . disability has suffered a distinctly “WHEN BLACK WOMEN START GOING ON PROZAC. . . .” | 425

different disciplinary fate” (1–2). Barnes and by the courts. For more on this, see Jackson and Mercer draw a “sharp contrast” between the Winick. reception of disability studies in academia and 11. The side effects of ECT can be severe and perma- that of “radical analyses of racism and sexism nent, as can those of neuroleptics, the medications that quickly won favor” (IS, 4). Recently, leading most commonly prescribed for schizophrenia disability scholars and activists have made simi- and other “psychotic” illnesses. The chemical ef- lar comparisons between race and disability in fects of neuroleptic drugs are similar to those pro- their discussions of Clint Eastwood’s 2005 film, duced by lobotomies (Breggin, TP, 68–91). Million Dollar Baby (Drake and Johnson, 1; Da- 12. Jeanine Grobe aptly compares the most common vis “Why,” 2). And the chairman of Britain’s Dis- modern-day psychiatric practices to medieval ability Rights Commission, Bert Massie, recently treatments for “insanity”: “[M]ore often than not, stated that “neglect and institutionalized exclu- [contemporary psychiatric] ‘medicine’ is a com- sion” of disabled people is “more profound” than plete atrocity—comparable only to the history that of Black people (“Massie,” 1). out of which it grew: is four-point restraint—be- 6. Samuels’s suggestion is part of her extended ing tied down at the wrists and ankles—an im- analysis of the dynamics of “passing” and “com- provement over being bound with chains? Is the ing out” for queer people, racial minorities, and cage inhumane whereas the seclusion room is people with disabilities. For critiques of the “like not? Are the deaths that result from the use of race” analogy in queer theory and activism, see neuroleptic drugs better than the deaths that re- Janet E. Halley and Janet R. Jakobsen. sulted from bloodletting? Is the terror inspired by 7. For critiques of additive models of racism the passing of electric current through the brain and sexism, see Barbara Smith and Elizabeth an improvement over the shock of being sub- Spelman. An example of an additive represen- merged in ice water?” (103). tation of intersectionality in disability studies 13. The back of Willow Weep for Me includes the is Davis’s assertion that “the most oppressed transcript of an interview of Danquah by Dr. person in the world is a disabled female, Third Freda C. Lewis-Hall, director of the Lilly Center World, homosexual, woman of color” (BOB, for Women’s Health, which is part of Eli Lilly, 29). This formulation, while a useful beginning, the pharmaceutical company that manufactures leaves untheorized the specific ways in which Prozac. Danquah has also given book tours in various forms of oppression come together in conjunction with the National Mental Health individual lives. Association’s Campaign on Clinical Depression, 8. The Surgeon General reports that “the preva- which is funded by Eli Lilly (http://www.psych. lence of mental disorders for racial and ethnic org/pnews/98-05-15/nmha.html). This may raise minorities in the United States is similar to that concerns about bias in Danquah’s representa- for whites.” These statistics, however, apply only tions of the benefits of psychoactive medications. to those “living in the community”; people who However, Willow Weep for Me can hardly be said are “homeless, incarcerated, or institutional- to read like an advertisement for antidepressants. ized” have higher rates of all forms of mental As noted, Danquah expresses concern about illness (“Mental” 1). According to the American their widespread use. In addition, she details the Psychological Association, women are twice as debilitating side effects she experienced from likely as men to suffer from depression; the rea- taking Zoloft. Most important, Danquah’s mem- sons for this discrepancy remain controversial oir certainly does not understand depression (“New,” 1). as simply a biological illness that can be cured 9. Information about the psychiatric survivor with drug therapy. If, as she claims, depression movement can be found at the Mind Freedom “exists somewhere in that ghost space between Support Coalition International Web site: http:// consciousness and chemistry,” her interest in the www.mindfreedom.org/ former greatly exceeds her attention to the lat- 10. Courts have long recognized that patients with ter; describing only briefly her experiences with physical illnesses or disabilities have the right various medications, Danquah foregrounds her to refuse medical treatment. This constitutional personal struggles and the political contexts in protection, however, has often been denied to which they take place. I would like to thank Jona- people diagnosed with mental illness, who can than Metzl for bringing Danquah’s relationship be committed to mental institutions and treated with Eli Lilly to my attention. involuntarily with toxic drugs and other poten- 14. A 2001 Surgeon General’s report on these tially harmful therapies. In many states, invol- disparities indicates that “racial and ethnic mi- untary outpatient treatment is also authorized norities” in the U.S. receive “less care and poorer 426 | ANNA MOLLOW

quality of care” than white people (“Mental”). Black men at a rate of 43 percent, compared with And a 2000 study of the treatment of people al- 6 percent for white men, 10 percent for white ready diagnosed with depression—controlled for women, and 12 percent for Black women (615). age, gender, health insurance status, and other 19. An awareness of the medical profession’s pathol- factors—found a striking disparity: 44 percent of ogizing attitudes toward Black people deters white patients and 27.8 percent of Black patients many African Americans from seeking health were given antidepressant medication (UT, 70). care, especially for symptoms of mental illness. 15. Anne Wilson and Peter Beresford describe this Psychological studies in reputable journals in double bind as an “increasing polarization of the 1950s compared average Africans to “the madness and distress into two categories—of the white mental patient,” “the lobotomized West ‘threateningly mad’ and the ‘worried well’” (153). European,” and the “traditional psychopath” Reflecting psychiatry’s distinction between “psy- (L.R.C. Haward and W.A. Roland, “Some inter- choses” and “neuroses,” these categories “serve cultural differences on the Draw-A-Person Test: both to dismiss and to devalue the experience Part I, Goodenough scores,” Man 54 [1954], p. 87, and distress of those of us not seen as ‘ill’ enough qtd. in Bulhan, 83–84; J.C. Carothers, “The Afri- to require public resources for support, and can mind in health and disease,” Geneva, World to reinforce assumptions about a discrete and Health Organization, 1953, qtd. in Bulhan, 84). separate group of mad people that constitutes a The 1965 Moynihan Report claimed that African threat to the rest of society” (154; 153). American families were disintegrating because 16. For discussions of the misperception of de- of their putatively “matriarchal” structure (Boyd, pression as an illness affecting only white “Ethnic,” 230). In the 1960s and 1970s, respected people, see Boyd (5–7) and Marano (2). neurosurgeons and psychiatrists publishing 17. In Rhonda Collins’s documentary film, We Don’t in venues such as the Journal of the American Live under Normal Conditions, people of vari- Medical Association advocated psychosurgery ous races and ethnicities discuss what it means to treat the “brain disease” they claimed caused to them to be depressed; most, but not all, see “riots and urban violence” (Breggin, WA, 117). In the origins of their distress as primarily social. the early 1990s, Frederick Goodwin, the chief sci- Most of the depression memoirs published in entist at the National Institute of Mental Health, the last decade in the United States are authored proposed a “violence initiative,” which would by white people, many of whom describe the identify among “inner-city” adolescents—whom benefits of antidepressants. See Styron, Wurtzel, Goodwin compared to monkeys in a jungle— Solomon, and Jamison. those with a genetic predisposition to violence 18. See Unequal Treatment 611–21. These discrep- and then subject them to psychiatric interven- ancies are well documented and alarming. For tions (Breggin, WA 8). example, a 1993 study “found that 79 percent of 20. See Barnes and Mercer (IS, 2) and Oliver (PD, 11). African Americans in a public-sector hospital Although the social model’s authors intended it were diagnosed with schizophrenia, compared to serve primarily as a “heuristic device,” rather with 43 percent of whites” (613). In another study, than a comprehensive theory of disability, its “28 percent of African Americans in a university distinction between impairment and disability hospital emergency room were given such a di- remains fundamental to disability scholarship in agnosis, compared with 20 percent of whites.” A both the UK and the United States (Barnes and 1996 study found that “African American patients Mercer, IS, 3). seen in an emergency room received 50 percent 21. The concluding chapter of Garland-Thomson’s higher doses of antipsychotic medications than Extraordinary Bodies calls for a shift in under- patients of other ethnic groups, while their doc- standing disability, “From Pathology to Identity.” tors devoted less time to assessing them” (613). Steven Taylor argues that “a Disability Studies In a 1998 study, researchers asked psychiatrists perspective questions the medical model and to provide diagnoses of patients based upon challenges” the equation of disability with “sick- written case histories. The psychiatrists each ness and pathology” (“Guidelines,” 4). Steven E. reviewed identical case histories, but their di- Brown states that “a person with a disability is agnoses varied widely, depending on what they not sick” (11). Barnes and Mercer criticize rep- were told the patients’ race and gender were. The resentations of people with disabilities as “sick” diagnosis of “paranoid schizophrenic disorder,” or “suffering” (Disability, 9; 10). And Simon Bris- which, the authors of the study note, is associ- enden urges a differentiation “between a disabil- ated with “violence, suspiciousness, and danger- ity and a disease” (25). Asserting that “disability ousness,” was applied to patients believed to be is not illness,” Anita Silvers acknowledges that “WHEN BLACK WOMEN START GOING ON PROZAC. . . .” | 427

chronic illnesses can be disabling but insists that conditions, like depression, are “controversial”; “persons with paradigmatic disabilities—para- they will be defined as “syndromes” rather than plegia, blindness, deafness, and others” must actual “diseases” until they can be correlated be distinguished from “people suffering from with measurable physiological abnormalities. illness” (77). David Pfeiffer also emphasizes that 29. Disorders such as these illustrate the impossi- “disability is not sickness” and claims that “for a bility of any absolute binary between “visible” half to three quarters of the disability commu- and “invisible” disabilities. These conditions nity there is no present sickness which disables may often be invisible to the casual observer, them” (6). Pfeiffer doesn’t make clear, in his but their signs can be seen on medical tests. estimate of the statistical prevalence of illness Notwithstanding medical technologies that rely among people with disabilities, how he defines on senses other than sight, the visual bias of the “disability community.” modern medical epistemology is pronounced; 22. See Harlan Hahn, The Issue of Equality: European it can be discerned even the word “stethoscope,” Perceptions of Employment Policy for Disabled which combines the Greek words for “chest” and Persons [New York: World Rehabilitation Fund, “I view” (Reiser, 25). 1984], 14, qtd. in Hahn, “Advertising,” 175. 30. Nonverbal people with disabilities can also be 23. This is not to suggest that suffering is the most diagnosed with depression, but the formation important aspect of depression for everyone who of depression as an impairment category has experiences it. Jane Phillips describes her depres- depended in large part upon patients’ verbal ar- sion as a “dark and dangerous illness,” but also as ticulations of their distress. an experience that “seemed to serve a function,” 31. I would like to thank Richard Ingram for pointing facilitating her emergence “into an utterly new this out to me. spring” (140–41). I am grateful to Richard Ingram 32. My comparison between Danquah’s politi- for bringing this passage to my attention. cal strategy and that of the nineteenth-century 24. Deconstructions of the social model share “homosexual” Foucault describes illustrates the similarities with “universalizing” approaches limits of analogies between different subject to disability in the United States, which, rather positions. Despite the similarities I will discuss, than conceiving of people with disabilities as Danquah’s desire to be cured contrasts with the members of a distinct minority group, instead nineteenth-century “homosexual”’s demands to highlight the fluidity of disability as an identity be accepted as such. I would like to thank Sue category and describe bodily difference as exist- Schweik for pointing this difference out to me. ing on a continuum of human variation. 33. For example, see “Cognitive” (3). 25. Danquah’s assertion is tautological (illnesses, 34. While I share Tremain’s sense that it is “politically by definition, are conditions that “reach clinical naïve to suggest that the term ‘impairment’ is proportions”); however, I am concerned here, value-neutral,” I nonetheless hope to show that not with establishing the “truth” or “falsity” of it is possible to cite impairment categories with- the claim that depression is an illness, but rather out merely reinforcing normalizing discourses with delineating the tactical and strategic uses to (SI, 34). which its construction as such is put. I would like 35. This characterization is consistent with the to thank Richard Ingram for pointing out to me overall thrust of Tremain’s argument. In “On the the tautological nature of Danquah’s statement. Subject of Impairment” (2002), Tremain touches 26. In the eighteenth century the physical examina- briefly on Foucault’s concept of discursive re- tion was regarded as so unimportant that doc- versibility, noting that the “disciplinary appara- tors often practiced medicine by mail, relying on tus of the state . . . brings into discourse the very patients’ lengthy narratives to make diagnoses conditions for subverting that apparatus” (44). (Reiser, 5–6). She maintains, however, that by “articulating 27. For detailed accounts of the history of clinical our lived experiences” in ways that “continue to medicine, see Foucault (BC), Ackernecht, and animate the regulatory fictions of ‘impairment,’” Jewson. disabled people risk merely augmenting normal- 28. There are exceptions to this trend, most of which izing and homogenizing social processes (44; are also invisible disabilities: “mental illnesses”; 45). Similarly, in one paragraph of her introduc- some cognitive disabilities; and physical con- tion to Foucault and the Government of Disabil- ditions such as chronic fatigue syndrome, re- ity (2005), Tremain notes Foucault’s interest in petitive strain injury, environmental illness, and the “strategic reversibility” engendered by hege- fibromyalgia, which don’t produce objectively monic discourses but nonetheless reiterates the observable bodily changes. But most of these central claims of her earlier essay. 428 | ANNA MOLLOW

36. I strongly concur with Tremain’s argument for a 40. Similarly, bell hooks has asserted that “to be disability theory that will “expose the disciplinary strong in the face of oppression is not the same character of . . . identity,” rather than “ground[ing] as overcoming oppression . . . endurance is not its claims to entitlement in that identity” (SI, 44; be confused with transformation” (qtd. in Mitch- FG, 10). In fact, Tremain’s criticisms of identity- ell, 69). Mitchell makes this point as well: Black based movements parallel arguments I make in women’s endurance of “suffering and hard- my essay, “Disability Studies and Identity Politics: ship,” she argues, should not be confused with A Critique of Recent Theory.” I share Tremain’s “strength” (69). view that identity politics risks reifying identity 41. Wilson and Beresford describe the damaging categories that might better be contested, is al- repercussions of constructions of mental illness most inevitably exclusionary and productive of that “leave the holder of the diagnosis feeling hierarchies, and impedes alliances with other utterly hopeless” and create a social expecta- political minorities. Indeed, I am trying to make tion that those who have been diagnosed with these problems apparent in my discussion of the mental illness “can never fully recover” (150). In ways in which entrenched ideas within disability addition, numerous African American feminists, studies exclude experiences such as Danquah activists, and critical race theorists have argued describes in her memoir. But I am also attempt- for the importance of hope and optimism, on ing to demonstrate that Danquah utilizes her both an individual and a collective level. Alex self-definition as a “depressive” in ways that do Mercedes, an African American woman who is not replicate these dynamics of identity politics a subject of Collins’s documentary, argues that movements (18). “it’s important to focus on the individual . . . be- 37. This discrepancy again exemplifies the limita- cause the revolution will not happen overnight tions of analogies between different forms of . . . so in the meantime, I, as an individual, must oppression. Butler asks, “When and how does a walk through this sexist, patriarchal hell.” Harris term like ‘queer’ become subject to an affirma- criticizes white feminism for its focus on “victim- tive resignification for some when a term like ization and misery” and insists upon women’s ‘nigger,’ despite some recent efforts at reclama- ability to “shape their own lives” (613). Warning tion, appears capable of only reinscribing its against the danger of a “capitulation to a sense of pain?” (223). For Danquah, such reinscription inevitable doom,” Patricia Williams expresses an is also the inevitable effect of hearing this word “optimistic conviction” of the possibility of both repeated. She remembers the first time she was “institutional power to make change” and “the called a ‘nigger’ to her face, by a high school boy individual will to change” (64; 65; 68). And in the she had asked to dance: “Even now when I hear introduction to The Black Women’s Health Book, that word—nigger—whether it is spoken by a White is hopeful about Black women’s power to black person or a white person, it is the simple “address and overcome the numerous issues that tone and disgust of that boy’s voice that I hear” have damaged” their health, in part through in- (43). dividual “resilience and stalwart determination” 38. Boyd also observes that it can be difficult to rec- (xiv; xvi). oncile “beliefs about being strong Black women” with “having an illness that we’ve long associated with weakness of the lowest kind” (CI, 5). Simi- WORKS CITED larly, Angela Mitchell observes that “one reason Black women don’t get treated for depression is Ackernecht, Erwin M. Medicine at the Paris Hospital that we often expect to feel sad, tired, and unable 1794–1848. Baltimore: Johns Hopkins University to think straight” (47). She reminds her readers Press, 1976. that “Black women do not have to be depressed. Barnes, Colin, and Geof Mercer, eds. Implementing It is not our lot in life” (47). The perception that the Social Model of Disability: Theory and Research. depression is a form of weakness that Black Leeds, UK: The Disability Press, 2004. Cited within women cannot “afford” is addressed on numer- the text as IS. ous web sites about Black women and depres- ——. Disability. 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The Enfreakment of Photography David Hevey

Before reading this chapter, I feel I must person with proverbial “disease” will be contextualise what lies ahead for the read- shown illustrating the solution and its use- er. In many ways, charity advertising as fulness. It might have been in an educa- oppressive imagery appears to be the bête tional magazine, in which a non-disabled noire of disabled people. Unfortunately, “facilitator” will regale in words and text oppressive as it is, it represents colours of the latest prototype “image-workshop,” a social order tied to a specific mast. Those using disabled people as guinea pigs while colours and constructions also exist in developing their “educational” ideas. The other areas of photographic representa- text brags about the colonization of dis- tion. This is demonstrated in this chapter. I abled people’s bodies and identities, while ask the reader to join me on a journey into the images show how much “the disabled” oppressive disability imagery. At times, enjoyed it. Passive and still and “done to,” particularly in the examination of the work the images bear a bizarre resemblance to of Diane Arbus, it can be depressing. How- colonial pictures where “the blacks” stand ever this chapter is here because I feel we frozen and curious, while “whitey” lounges have to take the fight against constructed confident and sure. Whitey knows the pur- oppression (whether by non-access or by pose of this image, the black people appear representation) into the camp of the op- not to (or at least, perhaps as employees, pressors. have no right to record visual dissent). Apart from charity advertising, when did The “positive” side of their ultra-minor- you last see a picture of a disabled person? ity inclusion, then, is that disabled people It almost certainly wasn’t in commercial are there to demonstrate the successes of advertising since disabled people are not their administrators.1 Apart from the above thought to constitute a body of consumers areas, however, disabled people are almost and therefore do not generally warrant in- entirely absent from photographic genres clusion. It might have been within an “in- or discussion because they are read as so- house” health service magazine, in which cially dead and as not having a role to play. disabled people are positioned to enflesh But although the absence is near absolute, the theories of their oppressors. The stories the non-representation of disabled people might range from the successes of a toxic is not quite total. Taking the structured drugs company to the latest body armour absence as given, I wanted to discover for people with cerebral palsy, and some the terms on which disabled people were THE ENFREAKMENT OF PHOTOGRAPHY | 433 admitted into photographic representa- things. Where there are images of black tion. As Mary Daly once wrote of feminism, people, the images show poverty; some the job entails being a full-time, low-paid show harmony, but all are visually poetic. researcher of your own destiny.2 Black life has been harmonised through I visited one of the largest photographic aesthetics. bookshops in London and leafed through However, throughout the catalogue of the publications. Generally disabled peo- the show, which contained 503 images ple were absent, but there was a sort of show from 68 countries by 273 male and fe- presence. Disabled people are represented male photographers, there is only one pho- but almost exclusively as symbols of “oth- tograph of someone identifiably disabled. erness” placed within equations which This is more than an oversight. Put together have no engagement to them and which ten years after the Second World War, The take their non-integration as a natural by- Family of Man was about “positively” for- product of their impairment. getting the past and all its misery. Forward I picked books at random. The Family of into glory, backward into pain! Although Man; Another Way of Telling; Diane Arbus; this publication and exhibition heralded a Figments from the Real World. There were brave new world of postwar hope and har- obviously lateral associations but only one, mony, on reading it it becomes clear that Diane Arbus, I knew to include images of the inclusion of disabled people—even disabled people. In the research for this disabled people tidied up like black people book, I had begun to uncover sometimes and working people—was not a part of the hidden, sometimes open, but always con- postwar visual nirvana. Why was this? tinuous constructions of disabled people The one image of a disabled person ap- as outsiders admitted into culture as sym- pears on the penultimate page of the 192- bols of fear or pity. This was particularly page publication. It is mixed in among six true in literature3 but I wanted to see if it other images on that page and is part of the held true in photography, so I picked the final section of the book, which covers chil- books at random. They may have been dren. Children are shown laughing, playing, connected in styles or schools but, as far dancing, crying and so on. Of the thirty- as I knew, had no connection whatsoever eight images in this section, three buck this on disability representation. Only Arbus trend. The three are all on this penultimate was infamous for having centred disabled page. In the final section, after five pages people in her work but I felt an uneasy faith of innocent joy, you encounter on the sixth that all of them would “use” disabled peo- page three that remind you it is not like ple somewhere. that always. At the top of these three is a The first book examined was entitled disabled boy who appears to be a below- The Family of Man.4 The Family of Man ex- the-knee amputee. He is racing along the hibition at the Museum of Modern Art, New beach with a crutch under his right arm. He York, in 1955 is considered the seminal exis playing and chasing a football. His body hibition for humanist-realist photography. tilts to our right as he approaches the ball, It was the photographic height of postwar while his crutch tilts to our left, to form a idealism. It showed the great “positive im- shape like an open and upright compass. age” of an unproblematised and noble The ball is situated in the triangle which his world—a world from which pain was ban- left leg and his right-side crutch make on ished. Where there are images of “working the sand. The triangle shape is completed folk,” their muscles and their sweat appear by a shadow which the boy casts from his to be a part of the great spiritual order of right leg to the crutch (and beyond). The 434 | DAVID HEVEY

ball enters this triangle focusing point but Arbus. The importance of these three pho- his right leg does not. Its absence is accen- tographers (and others like Robert Frank) tuated and impairment here is read as loss. is that their work heralded the breakdown The game he plays is his personal effort to of the universal humanism of The Family overcome his loss. of Man into a more fragmented, psychic or The photograph creates a flowing but surrealistic realism. The appalling reverse awkward symmetry and our reading of its of the coin is that they anchored the new flow is continually interrupted by the fact forms of a fragmented universe (to a great- that the triangle’s neatness is dependent on er or lesser extent) in new, even more op- the absence of a limb. Two readings occur pressive images of disabled people. simultaneously: it is tragic but he is brave. What is particularly crucial in terms of In a book of hope, the disabled person is the representation of disabled people in the symbol of loss. The disabled boy is a re- this photojournalism is a clear (yet still minder that all is not necessarily well in the uncritical) emergence of the portrayal of world but he is doing his best to sort it out. disabled people as the symbol of this new The image is “positive” in that he is “posi- (dis)order. Whereas the tucked-away dis- tively” adjusting to his loss. Because he is abled person in The Family of Man had “positively” adjusting to his loss, the image been a hidden blemish on the body of hu- is allowed into the exhibition and the cata- manity, in a world of the Cold War, the Cu- logue. The image of his disablement has ban Missile Crisis and Vietnam, disabled been used not for him but against him. The people were represented as the inconceal- image’s symbolic value is that disability is able birthmark of fear and chaos. Diane an issue for the person with an impairment, Arbus was the second photographer whose not an issue for a world being (inaccessi- work I looked at. The monograph that I had bly) reconstructed. In The Family of Man, pulled from the shelf is from her posthu- disabled people were almost entirely ab- mous retrospective, held at the Museum of sented because harmony was seen to rest Modern Art, New York, in 1972 and entitled in the full operation of an idealised working Diane Arbus.5 body. The exhibition and catalogue did not Of all photographers who have included admit disabled people (bar one) because it or excluded disabled people, Diane Arbus did not see a position for disabled people is the most notorious. She was born into an within the new model army of postwar arriviste family of immigrants, whose mon- production or consumption. ey was made in the fur trade. She became Photographically speaking, the decline a photographer through her husband, Al- of this high ground of postwar hope in the lan Arbus, and worked with him in fashion “one world, one voice, one leader” human- photography. She moved away from that ity was heralded (in historical photograph- (and him) into work which still dealt with ic terms) by an equally influential but far the body and its surrounding hyperbole more subversive exhibition, again at the but from a very different angle. It was on Museum of Modern Art, New York, which her own and in her own work that she be- was held in 1967. This exhibition was called came known, unwittingly according to her, New Documents and brought into a wide as “the photographer of freaks.” Whether public consciousness reportage portrai- she liked it or not, there can be no doubt ture showing the human race as an alien- that this is how her work has been received. ated species bewildered by its existence. The monograph contains 81 black-and- New Documents featured the work of Gary white images, of which eleven are of dis- Winogrand, Lee Friedlander and Diane abled people. These eleven can be divided THE ENFREAKMENT OF PHOTOGRAPHY | 435 into three quite critical periods of her work. wall around her work (and any discussion The first is demonstrated in two portraits of disability in her work) by “naturalising” of “dwarfs”; the second with the portrait of the content. In this, the images of disabled the “Jewish giant”; and the third with the people have been lumped into one label, imagery shot just before her death, that of that of “freaks.” Perhaps this has been the “retardees” (her term for people with done because her work appears to buck Down Syndrome). the contradictory trend of “compassion” In any of the material on Arbus, includ- in the portrayal of disabled “victims” prac- ing this monograph, Patricia Bosworth’s tised by other photographers. Although biography of her entitled Diane Arbus, A Arbus’s work can never be “reclaimed,” it Biography, and Susan Sontag’s discussion has to be noted that her work, and the use of her work in On Photography, the stages of “enfreakment” as message and meta- of her oppressive representations of dis- phor, is far more complicated than either abled people are never discussed. More- her defenders or critics acknowledge. The over, the “factual” recording of disabled process of analysis is not to rehabilitate her people as freaks is accepted totally with- or her work but to break it down once and out question by major critics like Sontag, for all. who says, “Her work shows people who She was a part of the “snapshot aesthet- are pathetic, pitiable, as well as repulsive, ic” which grew up beyond the New Docu- but it does not arouse any compassionate ments exhibition and exhibitors. This form feelings.”6 Later, she rhetorically adds, “Do attempted to overturn the sophisticated they see themselves, the viewer wonders, and high-technique processes of the Hol- like that? Do they know how grotesque they lywood fantasy portrait, as well as rejecting are?” (her italics). Sontag brings to the dis- the beautiful toning of much of The Fam- ability imagery of Arbus a complete faith ily of Man. However, more than any of her in Arbus’s images as unproblematic truth- peers, she took this aesthetic nearer to its tellers. Bosworth also colludes by patronis- roots in the family photograph or album ing disabled people, telling us of Arbus’s (indeed she intended to shoot a project “gentle and patient” way with “them.” Nei- entitled Family Album).8 Arbus had expe- ther of these critics, it goes without saying, rienced, in her own family, the emotional considered asking the observed what they and psychological cost of wealth in terms felt about the images in which they figured. of the painful subjectivity and isolation of Once again, the entire discourse has ab- the individual hidden and silenced within sented the voice of those at its center—dis- the outward signs of bourgeois upward abled people. mobility and success. In terms of disability, Since there is only one other book on however, Arbus read the bodily impairment Arbus’s work, and that deals with her mag- of her disabled subject as a sign of disorder, azine work,7 it is safe to say that Bosworth even chaos; that is, as a physical manifes- and Sontag represent key parts of the Ar- tation of her chaos, her horror. Despite her bus industry. In their validations of Arbus’s relationships with disabled people (often work, they both miss a central point. Al- lasting a decade or more) she viewed these though she was profoundly misguided (as not as social and equal relationships but I demonstrate further on), there can be no as encounters with souls from an under- doubt that her work paradoxically had the world. effect of problematising, or opening up, the There was nothing new in this pattern issue of the representation of disabled peo- of “reading” the visual site of a disabled ple. Her critics and defenders have built a person away from a personal value into a 436 | DAVID HEVEY

symbolic value which then seals the rep- their identity. Although the disabled people resentational fate of the disabled person. portrayed existed within subcultures (such However, at least in the first period of her as the circus), they were clearly not segre- disability work, Arbus deviated from the gated and it is this which shocked the public Richard III syndrome by reading this “dis- who flocked to her posthumous retrospec- order” as the manifestation of a psychic tive at the Museum of Modern Art in 1972. disorder not in the subject but in society. It is the conscious dialogue between Arbus There is no question of Arbus using her and the subjects which “horrified” and yet subjects “positively”—it is clear that she fascinated people more used to compas- always intended them and their relation- sionate victim images of disabled people ships to themselves and others to symbol- obligingly subhuman and obligingly insti- ise something other than themselves. She tutionalized as “tragic but brave.” Morales, saw herself and her “freaks” as fellow trav- the Mexican “dwarf ” in Diane Arbus, is pic- ellers into a living oblivion, a social death. tured naked but for a towel over his crutch. There is a perverse sense in which she was He wears a trilby at a rakish angle and his right—disabled people are expected to in- elbow leans casually on to the sideboard, habit a living death—but the crucial thing resting just in front of a bottle of liquor. It is that she considered her projection to be is not clear quite what went on between more important than their reality. She “nor- Arbus and Morales (though Arbus had malised” subjects like Morales, The Mexican previously “spent the night” with another Dwarf,9 or The Russian Midget Friends10 by disabled subject, Moondance, as part of specifically placing them in that great site his agreement to be photographed) but the of bourgeois culture and consumption, eroticism of the image cannot be denied. the home. The “horror” of Arbus’s work is Not only is the so-called “dwarf ” distinctly not that she has created Frankenstein but unfreaky in his three-quarters nakedness, that she moved him in next door! What is he is positively virile! A constant theme of more, the freak had brought his family! The Arbus’s work, not just of her disability work, “shock” for the hundreds of thousands of is the relationship between people’s bodies non-disabled viewers was that these por- and their paraphernalia. While the attire traits revealed a hinter-land existing in is crisp and clear, the flesh of the subject spite of the segregationist non-disabled has been “zombified.” This, however, is not world view. the case with her first pictures of “dwarfs.” For Arbus, the family—her own family— Morales’s body is very much alive. represented an abyss. She saw in the bour- Arbus had attempted to trace the psy- geois promise to the immigrant family, her chic disorder of consumer society back to own family, a Faustian contract. Her Me- a primal state of terror within everyday life. phistopheles, her threat to the bourgeois That she believed disabled people to be the privilege, was to move a non-disabled fear visual witness of this primal state is clear. that dare not speak its name into the family That is, she accepted at the level of “com- snap. In a sense, this first period of her work mon sense” the non-integration of disabled (a period not of time but of understand- people. However, much of “the Horror, the ing) is her least oppressive and in some Horror”11 with which Arbus’s work has been ways complete. The sitters acknowledge received is in her location of this disabled her presence and her camera. They stare terror within non-disabled normality. The out from the picture at the viewer. Far from disabled subjects themselves, at least in making apologies for their presence, they this early “freak” work, are treated rever- are distinctly proud, they are committed to entially. The camera is close. The camera is THE ENFREAKMENT OF PHOTOGRAPHY | 437 engaged. The subject has agreed to the ses- image is being made is by being on his feet sion (but agreed in isolation?). The “horror” like his parents. His body language appears of the process for non-disabled society is in unclear and unsettled. The flash has cast her placing a disabled normality within a black halos round the bodies of the subjects non-disabled normality. The horror is in and they begin to resemble a Weegee as a how she could even think them equivalent. found specimen of urban horror. The image The horror, I repeat, was in Arbus’s record- of the “giant” as he crouches towards his ing in her constructions of disabled people more formal parents is that of a father over a double bind of segregation/non-segrega- two children. The classic family portrait of tion. The “non-segregation,” however (and parents and child is completely reversed by this is where Arbus’s crime really lay) did her use of their size relationship. The body not lead towards integration—the “Russian language of the “Jewish giant” is more “out midgets” were not living down the road as of control” (that is, it diverges more from part of an independent living scheme—but non-disabled body language signs) than towards transgression. It was a spectacle, that of the “dwarf.” It is all the more “threat- not a political dialectic (the disability para- ening” to the non-disabled family snap be- dox) that Arbus wanted to ensnare. For this cause his body is situated with that of his she accepted, indeed depended, on the “normal” parents. A clash or a confronta- given segregation of disabled people as tion between styles and discourses is occur- “common sense.” ring. The alchemy, confrontation and visual Things began to disintegrate for Arbus in disorder of the image bring Arbus closer to the second part of her disability work. This avenging the control and repression in her is illustrated in the monograph by the im- own family. This is the key to her use and age entitled A Jewish Giant at Home with manipulation of isolated disabled people. his Parents in the Bronx, N.Y. 1970. Again, During the ten years of their knowing each we see a cosy family setting of a front room other, Eddie Carmel told Arbus about his with two comfy chairs and a sofa, two elder- ambitions, about his job selling insurance, ly and self-respecting pensioners, a lamp by about his acting hopes (and his despair at the drawn curtains, a reproduction classic only being offered “monster” roles), and so painting in a tasteful frame, and a giant. The on. Arbus dismissed this in her representa- “giant” is not given a name in the title but tions. She clearly found his actual day-to- his name was Eddie Carmel.12 Again, Ar- day life irrelevant. Indeed, she appears to bus did not sneak in and sneak out in this have disbelieved him, preferring her own shot but got to know and photograph Ed- projection of a metaphysical decline. His die Carmel over a period of ten years before real tragedy is that he trusted Arbus, and printing this one which she considered to she abused that trust outside of their rela- work. This image of A Jewish Giant with its tionship in an area within her total control, glaring flash-lit room, its portrayal of “the that is, photography. beast” from the womb of the mother, shows The visual dialogue within the image less harmony, even a deliberate asymmetry between herself and the subject in the from that of her “dwarf” images. In A Jew- “dwarf ” works, although decreasing in the ish Giant she had created an image which imagery of Eddie the “giant,” was still prev- took her beyond the reverence in both form alent and was important precisely because and content of her “dwarf” images. Unlike it created a snapshot family album curren- them, Eddie the Jewish “giant” directs his cy within the imagery. The commonness of attention away from the presence of the this form was a part of its communicative camera, his only acknowledgement that an power. As a structure it spoke to millions, 438 | DAVID HEVEY

while its content, Arbus’s enfreakment of much like Fay Ray recoiled from the hor- disabled people,13 spoke to the able-bodied ror of King Kong, but this is not the case. fear of millions. Were the subject to disen- Arbus betrayed in her excited phone call gage, to reject the apparent co-conspiracy to the journalist what she wished the im- (in reality a coercion) or contract between age to say, rather than what it actual does themselves and Arbus, the images would say (though, of course, meanings shift). move from the genre of family album cur- Arbus’s comment about “every mother’s rency and understanding of millions, to a nightmare” speaks of her nightmare rela- reportage subgenre position of one spe- tionship with her own body, which I believe cialist photographer. Arbus’s work would she viewed as the sole site of her power. It then be that of an outsider constructing was this loss of control of the body which outsiders which need not be internalised she saw disability/impairment as meaning. by the viewer. The enfreakment in her dis- Arbus once quoted a person who defined ability images was internalised by the non- horror as the relationship between sex and disabled viewers because the disabled death. She also claimed that she never re- subjects, while chosen for their apparent fused a person who asked her to sleep with difference, manifested body language and them. Furthermore, Bosworth hints that identity traits recognisable to everyone. Arbus may have been confused about her Arbus was concerned to show the dichot- bi-sexuality. In any event, the clues suggest omy, even the pain, between how people that while she viewed her body and sexual- projected themselves and how she thought ity as key points of her power, her sexuality they “really” were. The projection of this was not clear to her, and sex itself probably “imagined self” by the subject was through failed to resolve her feelings of aloneness the direct gaze to camera (and therefore di- and fragmentation. She sought the answer rect gaze to viewer). The image of A Jewish to this dilemma in locating bodily chaos Giant, to Arbus, suggested a higher level of in all her subjects (to varying degrees) and fear and chaos than the “dwarf ” work. This felt she’d found it in its perfect form in dis- higher level of discrepancy between order abled people. (That major institutions of (the setting is still the family at home) and American representation, like the Museum chaos (Eddie outgrowing that which con- of Modern Art, promoted her work shows tained him), than that manifested in the their willingness to cooperate with this op- “dwarf ” work, is also highlighted by the pressive construction of disabled people.) fact that, although the “giant” is on his feet The “OH MY GOD, NO!” which she attri- posing with his parents, his dialogue is as butes to the mother in A Jewish Giant is in much between him and his parents as be- reality an “OH MY GOD, YES!” victory call tween him and Arbus/the viewer. that Arbus herself felt. She had made her Arbus was reported to have told a jour- psychic vision physical, or so she felt. Diane nalist at the New Yorker of her excitement Arbus’s daughter, Doon Arbus, has written over this image, the first one that had that her mother wanted to photograph not worked for her in the ten years of pho- what was evil but what was forbidden.15 tographing Eddie. “You know how every She believed she had pictured a return of mother has nightmares when she’s preg- the forbidden and repressed within her nant that her baby will be born a monster? own remembered family. In her construc- I think I got that in the mother’s face as she tion, the awkwardness of A Jewish Giant glares up at Eddie, thinking, ‘OH MY GOD, hints at the unwieldiness of her vision as a NO!’”14 You could be forgiven for imagin- long-term solution to her own needs and ing that the mother recoils from her Eddie begins to hint at this vision’s ultimate THE ENFREAKMENT OF PHOTOGRAPHY | 439 destructiveness—not only, and obviously, project no illusions of being neighbours to to disabled people, but to the psychic well- normality. These people are not at home being of Arbus herself. but in a home. The institution of the fam- It is here that the third period in her ily give sway to the institution of segrega- work on disabled people begins. She starts tion (in this case, a New Jersey “home” for to photograph “retardees” (as she labels “retardees”). The people with Down Syn- people with Down Syndrome). She moves drome are set in a backdrop of large open from observing her subjects at home to fields showing only distant woods. For observing them in a home; that is, an insti- Arbus, their consciousness and activity is tution. These images of people with Down arbitrary. She does not know how to make Syndrome were practically the last she shot them perform to her psycho-ventriloquist before killing herself. They are clustered, six needs. In her career-long attempt to pull of them, at the end of the book. In the pre- the psychic underworld into the physical vious work with “dwarfs” and A Jewish Gi- overworld by manipulating the bodies of ant Arbus had maintained that she did not disabled people, she has come to the bor- photograph anybody who did not agree to ders in these images. She had met “the lim- be photographed. This was undoubtedly so its of her imagination”; she had not found (although coercion is probably truer than in these images the catharsis necessary agreement), but the images show a decline for her to continue. Arbus first loved then in conscious frontal participation of the hated this last work. She entered a crisis of subject. This decline was also mirrored in identity because these segregated people the growing discordance on the technical with Down Syndrome would not perform side of her work. The beautiful tones of Mo- as an echo of her despair. Because of this, rales, the “dwarf,” give way to a harsh flash- her despair deepened. In the final image of light in the “Jewish giant.” There is no doubt this series and the final image of her mono- that Arbus, as an ex-fashion photographer, graph, nine disabled people pass across the knew what she was doing in using techni- view of the camera. Of the nine, only one cal disharmony as an underwriting of the turns towards the camera. His gaze misses narrative disharmony. When we come into the camera; consequently the possibilities the third period, her work on “retardees,” that might have been opened up by a direct Arbus continues to pursue technical dis- gaze are, for Arbus, lost. He joins the rest of cordance. She still uses flash-and-daylight this crowd who come into the frame for no to pick up the figures from their landscape, purpose. Arbus’s camera became irrelevant but the focus is clearly weaker than that of not only for disabled people, but for Arbus the previous work. The subjects are now herself. This was her last work before she barely engaged with Arbus/the viewer as killed herself. themselves. The next book I looked at was Gary Win- Arbus finds them not in a position to ogrand’s Figments from the Real World.16 conspire with her projection. The visual Of the 179 black-and-white plates in Fig- dialogue collapses. The dialectic between ments from the Real World, six included body and attire which Arbus had pursued the portrayal of disabled people on one is broken. The chaos of their paper and level or another. Like Arbus, the inclusion blanket costumes appears, to her, not to of disabled people, regardless of their role, challenge their bodies but to match them. was that of a significant minority with their Arbus’s order-chaos paradoxical projec- oppression unquestioned and constructed tion has not happened. Instead, Arbus as intact. Unlike Arbus’s work, however, sees zombies in another world. To her they Winogrand did not produce any images (at 440 | DAVID HEVEY

least not for public consumption) whose what he reads as a loss of (female) beauty central character was the disabled person in ageing is registered by his “old bag” im- or disablement. He did produce bodies of age. It is no coincidence that one of the six work on women, for example, but where a disability images (and the only one of two disabled person appears in the work, it is as showing a wheelchair user) in Figments a secondary character to the women. Nev- from the Real World involves an almost ertheless, within the “underrepresentation” identical dynamic to that of the “old bags.” in Figments from the Real World, it becomes The center of the image is three young clear that, like Arbus and the others from women. They are lit by a sun behind them my ersatz list, “the disabled” had a role to and their sharp shadows converge towards play. Nevertheless, Winogrand consciously the camera. They dominate the center or otherwise included disabled people with third of the image and they are walking the specific intention of enfreaking disabil- along a ray of light towards the lends. They ity in order to make available to his visual are dressed in the fashion of the moment. repertoire a key destabilising factor. In their movement is recorded an affect- With regard to the representation of ing, perhaps transitional beauty. Their women by Winogrand, Victor Burgin has symmetry is, however, broken by the gaze critiqued Winogrand’s work and has ex- of the woman on the right. The symmetry plored the reading of meaning within his is further challenged by this woman being imagery and the relationship of this mean- a step ahead of the other two as she stares ing to the wider social and political dis- down at the presence, in the shadows, of a courses of his time.17 Burgin describes and crouched wheelchair user. The other two discusses an image of Winogrand from an women slightly move their heads towards exhibition in 1976. The image is of four the wheelchair. All of their eyes are tight- women advancing towards the camera ened and all of their facial expressions down a city street. The group of women, “interpret” the presence of the wheelchair who are varying degrees of middle age, is user with degrees of controlled horror. the most prominent feature in the right- Unlike Winogrand’s dumping of middle- hand half of the image; equally prominent aged women into “old bags,” he confronts is a group of huge plastic bags stuffed full of these young women with a warning. He garbage. The introduction to the catalogue observes them as beautiful but warns them of the exhibition makes it clear that this that their beauty and all its “paraphernalia” “joke” is intended. The reading of middle- is all that separates them from the “gro- aged women as “old bags” is unavoidable. tesque” form they are witnessing. Beauty Despite the protestations by John Szar- is warned of the beast. Clearly, Winogrand kowski in the introduction of Figments could not assuage his desire for women, from the Real World that Winogrand cel- whom he spent years photographically ac- ebrated women (he called the book of this costing on the street. His work harbours a phase of his work, Women are Beautiful), resentment that they do not respond to his it is clear that his construction of women aggressive desire and so he implants warn- singly or in groups advancing towards the ings. The asymmetry of the imagery is an- camera from all directions displays an un- chored in the non-disabled reading (in this ease, a fear, of what the results of his desire instant, Winogrand’s) of disabled people for them might be. Their faces frown by as sites of asymmetrical disharmony. The his camera, their eyes bow down to avoid women’s body harmony (as Winogrand his gaze. Burgin highlighted the dynamics desires it) is set against the wheelchair of his “old bag” image. Winogrand’s fear at user’s disharmony (as Winogrand sees it). THE ENFREAKMENT OF PHOTOGRAPHY | 441

Winogrand’s use of the disabled person, the geographic and political agenda for the again enfreaked, is to bring out of the un- whole book, which explores the three-way derworld and into the shadows a symbol of relationship between the photographer, asymmetry as fear and decay which chal- the photographed and the different mean- lenges the three women’s right to walk ings and readings taken from the photo- “beautifully” down the street. graphs. Like Arbus, Winogrand’s use of disability In every image or image-sequence, exis to warn the “normal” world that their as- cluding the second one in the book (that of sumptions are fragile. This he does by the a blind girl in India) the images are more or use of differentness of many disabled peo- less openly problematical. That is, the rela- ple’s bodies as a symbol of the profound tionship between the image and its appar- asymmetry of consumer society, particu- ent informative or communicative value is larly in the United States. Despite the fact put to the test. “Only occasionally is an im- that the American President Roosevelt had age self-sufficient,” says Jean Mohr. From been disabled, the enfreakment of disabled this assertion, Mohr and Berger explore people in these new practices became the image-making processes and what can the symbol of the alienation of humanity be taken on or used within the process of which these new photographers were try- photography that might work for both the ing to record. photographer and the subject. The genesis The Family of Man exhibition had all of the book is to question meaning and but excluded disabled people because they use-value of imagery from all points, not did not represent hope in the new order, just that of the photographer. so the post New Documents practitioners In Mohr’s eighty-page first part, he il- included disabled people for precisely the luminates different contexts of his own same reasons. The Family of Man and the image-making, from shooting running New Documents exhibitions, constructed children from a passing train, to shooting within photographic theories as radically and reshooting working people and direct- separate, are inextricably linked, in that ing his work according to their expressed the inclusion of disabled people does not wishes. The theme which pervades the mean progress, but regression. Disabled whole book is that of the working process. people increased their presence in the new Moreover, the working process that they reportage of these photographers not as a have chosen to explore visually is that of sign of enlightenment and integration, but people working on the land and their lives as a sign of bedlam. and communities. The image-sequences, The fourth book picked at random, I whether of cow-herders or of wood-cut- realized afterwards, takes us to a Europe- ters, begin with labour and its dignity. an setting. In Another Way of Telling,18 the Clearly, unlike many “concerned” social inevitable inclusion of a disabled subject realist photographers, Mohr is attempting comes almost at the very beginning. This to inhabit the process from the inside, not book deals heavily with photographs of the just to observe it externally. His method is countryside and the peasantry of various through the voice, feedback and acknowl- countries and the first photo-text piece sets edgement of the person photographed in this agenda. This is a story of Jean Mohr their work. Their work is the anchor, the taking photographs of some cows, while base, from which the story unfolds. the cow owner jokingly chastises him for At one point and in one sequence, Mohr taking pictures with permission and with- turns the camera on himself. He puts him- out payment. This first part very much sets self in the picture. He talks about the fear, 442 | DAVID HEVEY

the anxiety, even the panic which assails process—rather than be “unnaturally” many people when they are the subject of cropped. Naturalism, then, to him, has a the camera. Am I too fat? Am I too skinny? purpose in context. Is my nose too large? He tells us that he Here, we begin to get close to the pur- finds the process of putting himself in the pose of the blind girl pictures within Jean picture difficult and talks about how he at- Mohr’s piece and the book as a whole. The tempts to lose his image through techni- realist (time/place) agenda is set in the cal disguises, like deliberately moving the first image, that of the cowman, but the camera during an exposure so as to blur underlying agenda of “simple” naturalism the image, and so on. He anchors this pro- (that is to say, Mohr and Berger’s belief in cess of putting himself in the picture on its ability to tell a simple story) is anchored the quite valid and narcissistic idea that he in the hypersimplicity of the blind girl’s used to imagine that he looked like Samuel pleasure. These pictures of a disabled per- Beckett. After bringing the story home by son—a blind Asian girl—form the apex of saying that he was finally forced to view his the book’s naturalist thesis that the value own image by being the subject matter of of naturalism is in its portrayal of uncon- other people’s lens, rather than his own, he scious innocence. finally finishes it by telling us that a student The story is called “The Stranger who Im- who photographed him felt that he did in- itated Animals.” The “stranger” in question deed resemble Beckett. is Jean Mohr. In the 250-odd words which His work on other people’s images and accompany the five images, he tells us of stories and his work on his own image and visiting his sister in the university town of self are linked because, in grappling with Aligarh in India and of his sister’s “warning” the process of representation of his self or of the blind girl who comes round and likes of others, he tells us and attempts to show to know what is happening. He awakes the us that the meaning of images is rooted in next morning unclear of where he is when. the process and context in which they were made. This is an important assertion but The young blind girl said Good Morning. The sun had been up for hours. Without rea- not unique. This book was published in soning why I replied to her by yapping like 1982 and came at a time when other pho- a dog. Her face froze for a moment. Then I tographers and theorists, like Victor Burgin, imitated a cat caterwauling. And the expres- Allan Sekula, Photography Workshop (Jo sion on her face behind the netting changed Spence/Terry Dennett) et al., were ques- to one of recognition and complicity in my tioning and problematising and naturalist play-acting. I went on to a peacock’s cry, a truth-telling assumptions underpinning horse whinnying, a large animal growling— the left’s use of social realist photography. like a circus. With each act and according to Another Way of Telling, then, was a part of our mood, her expression changed. Her face this “movement.” was so beautiful that, without stopping our However, Another Way of Telling, and game, I picked up my camera and took some pictures of her. She will never see these pho- Jean Mohr’s opening piece in particular, is tographs. For her I shall simply remain the clearly anchored in finding another way of invisible stranger who imitated animals.19 using naturalist reportage, not abandoning it altogether. Mohr explains the use-value of Clearly, despite his simplification of his the naturalist image to the subject. He tells response (“without reasoning why”), he stories of how this or that peasant wanted responded with impersonations precisely the image to show the whole body—of because he had observed that she was the person, of the cow, of the tree-cutting blind. He objectified her, his first impulse THE ENFREAKMENT OF PHOTOGRAPHY | 443 on waking up to see a blind person was to serves to push the imagery into the magical play games with the blindness. Underlying or metaphysical. The always-to-be natural this was the assumption that blind people images of the blind girl are the only set that (whatever the level of visual impairment) have no significant time element to them. have no idea of quantifiable physical re- His work with the cowman spans days, his ality and would, of course, think that the work with the wood-cutter is over a period sound really was of a yapping dog waking of time (enough for the wood-cutter to give up in bed. His joke reveals his disability an opinion of the finished prints), but the (un-)consciousness, not hers. work with the blind girl of beauty and in- But she responds to this with laughter, nocence needs saying once, because it is she joins in. So, he further objectifies her forever. Again, like The Family of Man, like by again distancing himself. While she Arbus and Winogrand, Mohr has chosen laughs along with his imitations, he secret- to absent both the three-dimensional dis- ly photographs her, because her laughing abled person and their social story because but blind face was “so beautiful.” Clearly, it is incongruous to their own disability because she is laughing in his pictures, (un) consciousness. Their images tell us he presumably continued his imitations nothing about the actual lives of disabled while he photographed her. The game people, but they add to the history of op- for two turned into manipulation by one. pressive representation. The pictures show her leaning against the I have just analysed a random selection dark wooden surround of the door. She is of four major photographic books, only one framed by this and leans into this frame of which I knew to have been involved in by pressing her ears to his mimicry. She is disability representation. In the event, all kept at a distance and keeps her responses four were. In the final analysis, these books on that surface of the mosquito net which which include disabled people in their field fits into the wooden frame. This framing of of photographic reference do so on the her by the door is copied in his framing of condition that disabled people are, to use her in the camera. Out of the five pictures Sontag’s term for Diane Arbus’s work, “bor- in the sequence, four clearly show her eyes. derline” cases. Sontag meant this term in its Technically, these have been deliberately common reference to psychic or spiritual whitened in the printing to highlight the disorder. However, disabled people in the blindness. representations which I have discussed in As labour is the anchor in the other se- this and the previous chapters share a com- ries, and as narcissism is the anchor in his monality in that they live in different camps self-image series, shooting the whites of beyond the border. Whether beauty or the her eyes is the anchor in this series. Her beast, they are outsiders. The basis for this blindness is the symbol of innocence and border in society is real. It is physical and it nobility. Her blindness is the anchor of her is called segregation. The social absence of simplicity. Her blindness is the object of his disabled people creates a vacuum in which voyeurism. He has taken and symbolised the visual meanings attributable (symboli- this disabled person’s image, which he says cally, metaphorically, psychically, etc.) to “she will never see” (he obviously didn’t impairment and disablement appear free- consider aural description), as the anchor floating and devoid of any actual people. In and beauty of naturalism. The text which the absence of disabled people, the mean- accompanies this series of images doesn’t ing in the disabled person and their body is quite have the once-upon-a-time-ness of made by those who survey. They attempt to some of the other photo-essays, but it still shift the disablement on to the impairment, 444 | DAVID HEVEY

and the impairment into a flaw. The very bol denotes alienation. The impaired body absence of disabled people in positions of is the site and symbol of all alienation. It power and representation deepens the use is psychic alienation made physical. The of this “flaw” in their images. The repression “contorted” body is the final process and of disabled people makes it more likely that statement of a painful mind. the symbolic use of disablement by non- While this symbol functions as a “prop- disabled people is a sinister or mythologist erty” of disabled people as viewed by these one. Disablement re-enters the social world photographers, it does not function as through photographic representation, but the property of those disabled people ob- in the re-entry its meaning is tied not by the served. Its purpose was not as a role model, observed, disabled people, but by the non- or as references for observed people, but disabled observers. as the voyeuristic property of the non-dis- It is here that all the work, picked at ran- abled gaze. Moreover, the impairment of dom, is linked. Disabled people, in these the disabled person became the mark, the photographic representations, are posi- target for a disavowal, a ridding, of the exis- tioned either as meaningful or meaning- tential fears and fantasies of non-disabled less bodies. They are meaningful only as people. This “symbolic” use of disablement polarised anchors of naturalist humility or knows no classic political lines, indeed it psychic terror. Brave but tragic: two sides may be said to become more oppressive of the segregated coin? Disabled people are the further left you move.20 The point is taken into the themes pursued by Arbus, clear. If the disability paradox, the disabil- Winogrand, Mohr, and so on, to illustrate ity dialectic, is between impaired people the truth of their respective grand narra- and disabling social conditions, then the tives. The role of the body of the disabled photographers we have just examined person is to enflesh the thesis or theme of represent the construction of an “official” the photographer’s work, despite the fact history of blame from the disabling society that most of the photographers had taken towards disabled people. no conscious decision to work “on” disabil- The works were selected at random and ity. It is as if the spirit of the photographer’s I fear their randomness proves my point. mission can be summed up in their manip- Wherever I drilled, I would have found the ulation of a disabled person’s image. “The same substance. Were I to continue through disabled” emerge, like a lost tribe, to fulfil modern photographic publications, I have a role for these photographers but not for no doubt that the pattern I am describing themselves. would continue; the only variation be- Disabled people appeared either as one ing that some would use disabled people image at a time per book or one role per for the purposes described, while others book. The use of disabled people is the an- would absent disabled people altogether. chor of the weird, that is, the fear within. A cursory widening of the list, to glance at They are used as the symbol of enfreak- photographers who have come after those ment or the surrealism of all society. “Re- named above, people like Joel-Peter Wit- actionary” users of this notion hunt the kin,21 Gene Lambert,22 Bernard F. Stehle,23 “crips” down to validate chaos within their Nicholas Nixon,24 and others who have all own environment (Arbus); “progressive” “dealt with” disablement, shows photog- users of this notion hunt them down within raphers who continued a manipulation of their own environment to find an essential the disability/impairment image but have romantic humanity in their own lives (but done so in a manner which depressingly no question of access). The US “crip” sym- makes the work by, say, Arbus and Mohr (I THE ENFREAKMENT OF PHOTOGRAPHY | 445 don’t suppose they ever felt they’d be men- “phase-two” institutions (which mirrored heavy tioned in the same breath!) seem positively industrial production) towards the dispersal of timid! The work of many of the “post New “care in the community” has meant that disablement has shifted from a predominantly cure-or- Documentaries” has shifted the ground care issue to an administrative one. There is no on the representation of disabled people doubt in my mind that this shift is being echoed in by making “them” an even more separate the production of “positive” images within the UK category. While the volume of representa- local authorities. They are similar to the function- tion is higher, the categorisation, control alist images of the charities third-stage imagery in their portrayal of the administration of service and manipulation have become deeper. In provision to (grinning) disabled people. this sense, the photographic observation 2. GYN/ecology (1981), by Mary Daly, London: of disablement has increasingly become Women’s Press. the art of categorisation and surveillance. 3. Images of the Disabled, Disabling Images (1987), Also, from a psychological viewpoint, those ed. Alan Gartner and Tom Joe, New York: Praeger. 4. The Family of Man, exhibition and publication that appear to have transgressed this com- by the Museum of Modern Art, New York, 1955. modification of disabled people have only (Reprinted 1983.) transgressed their own fears of their con- 5. Diane Arbus (1990), London: Bloomsbury Press. structions. The oppression remains the 6. On Photography (1979), by Susan Sontag, Lon- same. The segregated are not being inte- don: Penguin. 7. “Arbus revisited: a review of the monograph,” by grated, they are being broken into! The Paul Wombell, Portfolio magazine, no. 10, Spring photographic construction of disabled 1991. people continues through the use of dis- 8. Ibid., p. 33. abled people in imagery as the site of fear, 9. Diane Arbus, op. cit., p. 23. The full title of the loss or pity. Those who are prevented by photograph is Mexican Dwarf in his Hotel Room in N.Y.C. 1970. their liberal instincts from “coming out” in 10. Diane Arbus, op. cit., p. 16. The full title for this their cripple-as-freak, freak-as-warning- photograph is: Russian Midget Friends in a Liv- of-chaos, circumvent it by attempting to ing Room on 100th St. N.Y.C. 1963. tell the unreconstructed “natural” story of 11. The death cry of Kurtz on discovering the unpro- oblivion. Either way, it is a no-win victim nounceable, in Conrad’s Heart of Darkness. 12. Diane Arbus: A Biography (1984), by Patricia Bos- position for disabled people within those worth, New York: Avon Books, p. 226. forms of representation. My intention in 13. It is important to remember that the ability of this essay is to suggest new forms. naturalist photographic practice to “enfreak” its A final note of hope. Diane Arbus was subject is not peculiar to the oppressive portrayal “extremely upset” when she received a re- of disabled people. For example, the same process of fragmenting and reconstructing oppressed peo- ply from “The Little People’s Convention” ple into the projection of the photographer is par- to her request to photograph them. They ticularly marked in the projection of the working wrote that, “We have our own little person classes. See British Photography from the Thatcher to photograph us.”25 In terms of disabled Years (book and exhibition) by Susan Kismaric, people’s empowerment, this is the single Museum of Modern Art, New York, 1990. 14. Diane Arbus: A Biography, op. cit., p. 227. most important statement in all of the 15. Ibid., p. 153. work considered. 16. Gary Winogrand (1988), Figments from the Real World, ed. John Szarkowski, New York: Museum NOTES of Modern Art. 17. The End of Art Theory: Criticism and Post- 1. Vic Finkelstein has argued that the “administrative Modernity (1986), by Victor Burgin, London: model” of disablement has replaced the “medical Macmillan, p. 63. model” to the extent that it is now the dominant 18. Another Way of Telling (1982), by John Berger oppressive one. This model, according to Finkel- and Jean Mohr, London: Writers and Readers. stein, suggests that the move away from the large 19. Ibid., p. 11. 446 | DAVID HEVEY

20. For the “left” use of disability/impairment as the 21. Masterpieces of Medical Photography: Selections site of a defense of the welfare state, see “Bath from the Burns Archive (1987), ed. Joel-Peter Wit- time at St. Lawrence” by Raissa Page in Ten-8, nos. kin, California: Twelve-tree Press. 7/8, 1982. Alternatively, for a cross-section of the 22. Work from a Darkroom (1985), by Gene Lambert inclusion of disability imagery within magazines (exhibition and publication), Dublin: Douglas servicing the welfare state, see the King’s Fund Hyde Gallery. Centre reference library, London. Finally, see the 23. Incurably Romantic (1985), by Bernard F. Stehle, impairment charity house journals and read the Philadelphia: Temple University Press. photo credits, i.e., the Spastics Society’s Disabil- 24. Pictures of People (1988), by Nicholas Nixon, New ity Now. Network, Format, Report and other left York: Museum of Modern Art. photo agencies regularly supply uncritical im- 25. Diane Arbus: A Biography (1984), by Patricia Bos- pairment imagery. worth, New York: Avon Books, p. 365. CHAPTER 32

Blindness and Visual Culture: An Eyewitness Account Georgina Kleege

In April 2004, I was invited to speak at a If visual studies entails a meditation on conference on visual culture at the Uni- blindness, it is my hope that it will avoid versity of California, Berkeley. Speakers some of the missteps of similar meditations were asked to respond to an essay by W. J. of the past. Specifically, I hope that visual T. Mitchell titled, “Showing Seeing: A Cri- studies can abandon one of the stock char- tique of Visual Culture,” which offers a se- acters of the western philosophical tradi- ries of definitions of the emergent field of tion—“the Hypothetical Blind Man” (Gitter visual studies, distinguishing it from the 2001, 58). The Hypothetical Blind Man—or more established disciplines of art history, the Hypothetical as I will call him for the aesthetics and media studies. As an admit- sake of brevity—has long played a useful, ted outsider to the field of visual studies, I though thankless role, as a prop for theo- chose to comment on the following state- ries of consciousness. He is the patient sub- ment: “Visual culture entails a meditation ject of endless thought experiments where on blindness, the invisible, the unseen, the the experience of the world through four unseeable, and the overlooked” (Mitchell senses can be compared to the experience 2002, 170). In my last book, Sight Unseen, of the world through five. He is asked to de- I attempted to show blindness through my scribe his understanding of specific visual own experience, and a survey of represen- phenomena—perspective, reflection, re- tations of blindness in literature and film. At fraction, color, form recognition—as well the same time, I wanted to show seeing, to as visual aids and enhancements—mir- sketch my understanding of vision, drawn rors, lenses, telescopes, microscopes. He is from a lifetime of living among the sighted understood to lead a hermit-like existence, in this visual culture we share. I started so far at the margins of his society, that he from the premise that the average blind has never heard this visual terminology person knows more about what it means before the philosophers bring it up. Part to be sighted than the average sighted per- of the emotional baggage he hauls around son knows about what it means to be blind. with him comes from other cultural repre- The blind grow up, attend school, and lead sentations of blindness, such as Oedipus adult lives among sighted people. The lan- and the many Biblical figures whose sight guage we speak, the literature we read, the is withdrawn by the wrathful God of the architecture we inhabit, were all designed Old Testament or restored by the redeemer by and for the sighted. of the New. His primary function is to high- 448 | GEORGINA KLEEGE

light the importance of sight and to elicit not to determine if it is a rock or a tree root, a frisson of awe and pity which promotes though there are sound cues—a tap versus gratitude among the sighted theorists for a thud—that might help make this distinc- the vision they possess. tion. In many situations, the cane is more I will not attempt to survey every ap- of an auditory than a tactile tool. It seems pearance of the Hypothetical throughout that in Descartes’ desire to describe vision the history of philosophy. It is enough to as an extension of or hypersensitive form cite a few of his more memorable perfor- of touch, he recreates the blind man in his mances, and then to suggest what happens own image, where the eye must correspond when he is brought face-to-face with actual to the hand extended by one or perhaps blind people through their own first-hand, two sticks. eye-witness accounts. Professor Mitchell The most detailed depiction of the Hy- alludes to the passages in Descartes’ La Di- pothetical came about in 1693, when Wil- optrique where he compares vision to the liam Molyneux wrote his famous letter to Hypothetical’s use of sticks to grope his way John Locke. He proposed a thought experi- through space. Descartes’s references to the ment where a blind man who had learned Hypothetical are confusing and are often to recognize geometric forms such as a conflated by his readers. In one instance, cube and a sphere by touch, would have his he compares the way the Hypothetical’s sight restored through an operation. Would stick detects the density and resistance of he be able to distinguish the two forms objects in his path, to the way light acts on merely by looking at them? The Molyneux objects the eye looks at. In a later passage, question continues to be debated today, Descartes performs a thought experiment, even though the history of medicine is full giving the Hypothetical a second stick of case studies of actual blind people who which he could use to judge the distance have had their sight restored by actual op- between two objects by calculating the erations. Apparently, Molyneux was mar- angle formed when he touches each object ried to a blind woman, which has always with one of the sticks. Descartes does not led me to wonder why he did not pose his explain how the Hypothetical is supposed hypothetical question about her. Perhaps to make this calculation or how he can he knew that others would object that mar- avoid running into things while doing so. I riage to a philosopher might contaminate doubt that Descartes actually believed that the experimental data. There was a risk any blind person ever used two sticks in that the philosopher might prime her an- this way. In fact, the image that illustrates swers or otherwise rig the results. Certainly his discussion shows the Hypothetical’s in commentary on actual cases of restored dog sound asleep on the ground, indicat- sight, debaters of the Molyneux question ing that the Hypothetical is going nowhere. are quick to disqualify those who were al- Even so, Descartes’ description of the way a lowed to cast their eyes upon, for instance blind person uses one stick reflects a basic the faces of loved ones, before directing misunderstanding. He imagines that the their gaze at the sphere and the cube. blind use the stick to construct a mental Denis Diderot’s 1749 “Letter on the Blind image, or its equivalent, of their surround- for the Use of Those Who See” is generally ings, mapping the location of specifically credited with urging a more enlightened, identified objects. In fact, then as now, a and humane attitude toward the blind. His stick or cane is a poor tool for this kind of blind man of Puiseaux and Nicholas Saun- mental imaging. The stick serves merely derson, the English mathematician, were to announce the presence of an obstacle, both real rather than hypothetical blind BLINDNESS AND VISUAL CULTURE: AN EYEWITNESS ACCOUNT | 449 men. As he introduces the man from Pui- of the two fluids. But Diderot cannot think seaux, Diderot is at pains to supply details of everything. of his family history and early life to per- Now I imagine a blind man wandering suade his reader that this is a real person. onto the scene. My blind man is not quite Significantly, the man from Puiseaux is first the one Diderot imagines. For one thing he encountered helping his young son with is a bit preoccupied; the philosophers have his studies, demonstrating both that he is dropped by again. They talk at him and over a loving family man, and capable of intel- his head, bandying about names that are lectual activity. But the questions Diderot now familiar to him: Locke, Molyneux, Des- poses generally fall under the pervu of the cartes. They question him about his ability Hypothetical. Certainly, many of his re- to conceptualize various things: windows, marks help support Descartes’ theory re- mirrors, telescopes—and he responds with lating vision to touch: the quaint and winsome answers he knows they have come for. Anything to get rid of One of our company thought to ask our blind them. Distracted as he is, the sound of the man if he would like to have eyes. “If it were bleeding mute’s plashing blood registers on not for curiosity,” he replied, “I would just his consciousness. Lacking Diderot’s imag- as soon have long arms: it seems to me my ination, however, the thought does not oc- hands would tell me more of what goes on in cur to him that this sound emanates from a the moon than your eyes or your telescopes.” bleeding mute. His reason opts instead for (Diderot 1999, 153) the explanation that the sound comes from Diderot praises the blind man’s ability to some man relieving his bladder—a far more make philosophical surmises about vision, commonplace phenomenon, especially in but does not have a high opinion of blind the means streets where the blind man re- people’s capacity for empathy: sides. It is not that the blind man has no fellow feeling for the mute. Come to think of it, the mute would make a good compan- As of all the external signs which raise our pity and ideas of pain the blind are affected only ion. He could act as a guide and keep an by cries, I have in general no high thought of eye out for marauding philosophers, while their humanity. What difference is there to a the blind man could do all the talking. But blind man between a man making water and the blind man does not have enough infor- one bleeding in silence? mation to recognize the mute’s dilemma. (Diderot 1999, 156) The only hope for the bleeding mute is to find some way to attract the blind man’s at- The phrasing of the question here suggests tention, perhaps by throwing something. an afterthought. I imagine Diderot, at his But surely, such a massive loss of blood table, conjuring up two men, one pissing, must have affected his aim. While the blind one bleeding. While his visual imagination man, living as he does at the margins of his is practiced in making these sorts of mental society, is accustomed to being spurned images, he is less adept at tuning his mind’s by local homeowners and merchants who ear. He recognizes that for the blood to be find his presence unsightly, and so might spilt at a rate sufficient to create the same flee the bleeding mute’s missiles without sound as the flowing urine, the bleeding suspecting that his aid is being solicited. man would normally cry out in pain. So he The blind man quickens his pace as best imagines, in effect, a bleeding mute. But he he can. The mute succumbs at last to his fails to take into account the relative vis- mortal wound. And the philosopher shifts cosity, not to mention the different odors, to another topic. 450 | GEORGINA KLEEGE

I am wrong to make fun of Diderot, since therefore must be somehow detached from his treatment of blindness was at once far or indifferent to the nation’s collective hor- more complex and far more compassion- ror and grief. ate than that of other philosophers. And it is It is fortunate for anyone interested in not as if his low opinion of the blind’s ability dismantling the image of blindness fos- to empathize with others’ pain has ceased tered by the Hypothetical Blind Man that to contribute to attitudes about blindness. we have today a great many first-hand ac- Consider this anecdote from recent his- counts of blindness. In recent decades, tory. Some weeks after September 11, 2001, memoirs, essays and other texts by actual the blind musician Ray Charles was inter- blind people attempt to loosen the grip viewed about his rendition of “America the the Hypothetical still seems to hold on the Beautiful,” which received a good deal of sighted imagination. Thanks to work by air time during the period of heightened disability historians, we are also beginning patriotism that followed that event. The to have older accounts of blindness drawn interviewer, Jim Gray, commented that from archives of institutions and schools for Charles should consider himself lucky that the blind around the world. One such ac- his blindness prevented him from viewing count is a text written in 1825, by a twenty- the images of the World Trade Center’s col- two-year-old blind French woman named lapse, and the Pentagon in flames: “Was Thérèse-Adèle Husson. Born in Nancy this maybe one time in your life where into a petit bourgeois household, Husson not having the ability to see was a relief?” became blind at nine months following a Like Diderot, the interviewer assumed that bout of smallpox. Her case attracted the at- true horror can only be evinced through tention of the local gentry who sponsored the eyes. Many eyewitness accounts of the a convent education for her, and encour- event however, were strikingly nonvisual. aged her to cultivate her interests in litera- Many people who were in the vicinity of ture and music. At the age of twenty she left Ground Zero during and soon after the di- home for Paris where she hoped to pursue saster found it hard to put what they saw a literary career. Her first text, “Reflections into words, in part because visibility in the on the Moral and Physical Condition of the area was obscured by smoke and ash, and Blind” seems to have been written as a part in part because what they were seeing did of her petition for aid from the Hôpital des not correspond to any visual experience Quinze-Vingts, an institution that provided for which they had language. People de- shelter and financial support to the indi- scribed instead the sound of falling bodies gent blind of Paris. For the most part, her hitting the ground, the smell of the burn- text follows the example of comportment ing jet fuel, and the particular texture of the and educational manuals of the time, of- ankle deep dust that filled the streets. But fering advice to parents and caretakers on for the majority of television viewers, eye- the correct way to raise a blind child, and to witnesses from a distance, those events are young blind people themselves on their role recalled as images, indelible, powerful, and in society. It is by turns, formulaically ob- eloquent. To many, like the reporter inter- sequious and radically assertive, since she viewing Ray Charles, it is the images rather writes from the premise—revolutionary for than the mere fact of the events that pro- the time—that her first-hand experience of duce the emotional response. The assump- blindness gives her a level of expertise that tion seems to be that because the blind are equals or surpasses that of the institution’s immune to images they must also be im- sighted administrators. While it is unlikely mune to the significance of the events, and that Husson’s convent education would BLINDNESS AND VISUAL CULTURE: AN EYEWITNESS ACCOUNT | 451 have exposed her to the work of Descartes it is only after having heard the names of the or Diderot, she considers some of the same articles that I designate that it became pos- questions previously posed to the Hypo- sible for me to acquire the certainty that they thetical. It is possible that the provincial were hollow, round, square. I will admit that aristocrats, who took up her education, they are right, but tell me, you with the eyes of Argus, if you had never heard objects de- may have engaged in amateurish phi- scribed, would you be in any better position losophizing in her presence. For instance, to speak of them than I? like Diderot’s blind man of Puiseaux, she (Husson 2001, 41) prefers her sense of touch to the sight she lacks. She recounts how, at the time of her Her emphasis on square versus round first communion, her mother promised objects as well as her tone and her taunt, her a dress made of chiffon, then, either “You with the eyes of Argus,” suggests an as a joke or in an attempt to economize, irritation that may come from hearing the purchased cheaper percale instead. When Molyneux question one too many times. the young Husson easily detected the dif- She is also arguing against the notion that ference through touch, her mother persist- such words as “square” and “round” desig- ed in her deception, and even brought in nate solely visual phenomena, to which the neighbor women to corroborate. Whether blind have no access and therefore no right playing along with the joke, or as a genuine to use these words. rebuke of her mother’s attempt to deceive Almost a century later, Helen Keller gives her, Husson retorted: vent to a similar irritation at literal-minded readers. In her 1908 book, The World I Live I prefer my touch to your eyes, because it al- In, she gives a detailed phenomenological lows me to appreciate things for what they account of her daily experience of deaf- really are, whereas it seems to me that your blindness. Early on, she footnotes her use sight fools you now and then, for this is percale and not chiffon. of the verb “see” in the phrase, “I was taken (Husson 2001, 25) to see a woman”:

In a later discussion of her ability to recog- The excellent proof-reader has put a query to nize household objects through touch, her my use of the word “see.” If I had said “visit,” he would have asked no questions, yet what impatience seems out of proportion, un- does “visit” mean but “see” (visitare)? Later I less we imagine that she frequently found will try to defend myself for using as much of herself the object of philosophical specula- the English language as I have succeeded in tion by literal-minded practitioners: learning. (Keller 2003, 19) We know full well that a chest of drawers is square, but more long than tall. Again I hear Keller makes good use of her Radcliffe edu- my readers ask what is a square object! I am cation to show that the more one knows accommodating enough to satisfy all their about language the harder it is to find vo- questions. Therefore, I would say to them cabulary that does not have some root in that it is easy enough to know the difference sighted or hearing experience. But, she ar- between objects by touching them, for not all of them have the same shape. For example, gues, to deny her the use of seeing-hearing a dinner plate, a dish, a glass can’t begin to vocabulary would be to deny her the ability be compared with a chest of drawers, for the to communicate at all. first two are round, while the other is hol- In their 1995 book, On Blindness, two low; but people will probably point out that philosophers, one sighted and one blind, 452 | GEORGINA KLEEGE

conduct an epistolary debate that might to express the passion, the zeal of a mis- seem to put to rest all the old hypotheti- sionary preaching to the heathen in outer cal questions. Unfortunately, Martin Mil- darkness. Only, of course, your “gospel” isn’t ligan, the blind philosopher, died before “good” news to us heathens, for the message the discussion was fully underway. If he seems to be that ours is a “darkness” from which we can never come in—not the dark- had lived, we can assume not only that he ness of course that sighted people can know, and his sighted colleague, Bryan Magee, but the darkness of never being able to know would have gotten further with their de- that darkness, or of bridging the vast gulf that bate, but also that they would have edited separates us from those who do. some testy quibbles about which terms to (Magee and Milligan 1995, 46) use and which translation of Aristotle is more accurate. Milligan, who worked pri- This prompts Magee to cite his own early marily in moral and political philosophy, work on race and homosexuality, as proof and was an activist in blind causes in the of his credentials as a liberal humanist. He United Kingdom, forthrightly resists the also speculates, somewhat sulkily, about impulse to allow the discussion to stray whether the first eighteen months of Mil- far from the practical and social condi- ligan’s life when his vision was presumed tions that affect the lives of real blind to be normal, might disqualify him as a people. For instance, he cites an incident spokesman for the blind, since he might re- from his early life, before he found an aca- tain some vestige of a visual memory from demic post, when he was turned down for that period. Later, Magee consults with a a job as a telephone typist on a newspaper neurologist who assures him that the loss because the employer assumed that he of sight at such an early age would make would not be able to negotiate the stairs Milligan’s brain indistinguishable from that in the building. He identifies this as one of of a person born blind. And so the discus- thousands of examples of the exaggerated sion continues. value sighted people place on vision. Any Along the way, Magee makes some thinking person has to recognize that sight claims about sight that seem to me to be is not required to climb or descend stairs. far from universal. For instance, he states: He asserts that the value of sight would be that it would allow him to move around By the sighted, seeing is felt as a need. And unfamiliar places with greater ease. He it is the feeding of this almost ungovernable craving that constitutes the ongoing pleasure concedes that vision might afford him of sight. It is as if we were desperately hungry some aesthetic pleasure while viewing a all the time, in such a way that only if we were landscape or painting, but insists that he eating all the time could we be content—so can know what he wants to know about we eat all the time. the visible world from verbal descriptions, (Magee and Milligan 1995, 104) and that this knowledge is adequate for his needs, and only minimally different Magee asserts that when sighted people are from the knowledge of sighted people. He obliged to keep their eyes closed even for a accuses Magee of voicing “visionist”—or short time, it induces a kind of panic. To il- what I might call “sightist”—attitudes that lustrate his point, he notes that a common the differences between the sighted and method of mistreating prisoners is to keep the blind must be almost incomprehensi- them blindfolded, and this mistreatment bly vast, and that vision is a fundamental can lead them to feel anxious and disori- aspect of human existence. Milligan says ented. I suspect that his example is influ- that these statements seem enced by traditional metaphors that equate BLINDNESS AND VISUAL CULTURE: AN EYEWITNESS ACCOUNT | 453 blindness with a tomb-like imprisonment. the experience of texture or form through Surely a blind prisoner, accustomed to the physical contact, but an apprehension, of privation of sight, might still have similar an atmospheric change, experienced kines- feelings of anxiety and disorientation, due thetically, and by the body as a whole. This to the threat, whether stated or implied, of seems to point toward a need for a theory pending bodily harm. of multiple senses where each of the tradi- To his credit, Magee does allow that some tional five could be subdivided into a num- blind experiences are shared by the sighted. ber of discrete sensory activities, which Milligan describes how many blind people function sometimes in concert with and negotiate new environments, and can feel sometimes in counterpoint to others. Hel- the presence of large objects even without en Keller identified at least three different touching them as “atmosphere-thickening aspects of touch that she found meaning- occupants of space.” Magee reports that ful: texture, temperature, and vibration. In when he fact, she understands sound as vibrations that the hearing feel in their ears while the was a small child I had a vivid nonvisual deaf can feel them through other parts of awareness of the nearness of material ob- their bodies. Thus she could feel thunder jects. I would walk confidently along a pitch by pressing the palm of her hand against black corridor in a strange house and stop a windowpane, or someone’s footsteps by dead a few inches short of a closed door, and pressing the soles of her feet against floor- then put out my hand to grope for the knob. boards. If I woke up in the dark in a strange bedroom and wanted to get to a light-switch on the What these blind authors have in com- opposite side of the room I could usually cir- mon is an urgent desire to represent their cumnavigate the furniture in between, be- experiences of blindness as something because I could “feel” where the larger objects sides the absence of sight. Unlike the Hypo- in the room were. I might knock small things thetical, they do not feel themselves to be over, but would almost invariably “feel” the deficient or partial—sighted people minus big ones. I say “feel” because the sensation, sight—but whole human beings who have which I can clearly recall, was as of a feel- learned to attend to their nonvisual senses ing-in-the-air with my whole bodily self. in different ways. I have deliberately cho- Your phrase “atmosphere-thickening occu- sen to limit my discussion here to works pants of space” describes the apprehension by people who became blind very early in exactly. I suddenly “felt” a certain thickness in the air at a certain point relative to myself life. One of the most striking features of the in the blackness surrounding me. . . . This il- Hypothetical Blind Man is that he is always lustrates your point that the blind develop assumed to be both totally and congenitally potentialities that the sighted have also been blind. Real blindness, today as in the past, endowed with but do not develop because rarely fits this profile. Only about 10–20 per- they have less need of them. cent of people designated as legally blind, (Magee and Milligan 1995, 97–98) in countries where there is such a designation, are without any visual perception at Here, and in a few other places in the cor- all. It is hard to come by statistics on people respondence, Magee and Milligan seem who are born totally blind, in part because to be moving in a new direction. It is not it only becomes an issue when the child, merely that they discover a shared percep- or her parents, seek services for the blind, tual experience, but one that is not easy to which tends to occur only when the child categorize as belonging to one of the five reaches school age. We can assume that traditional senses. Here, a “feeling” is not more infants were born blind in the past, 454 | GEORGINA KLEEGE

since some of the most prevalent causes of Snellan eye chart, or, as in the case of Ted infantile blindness have been eliminated Williams, can read the print on a baseball by medical innovations in the nineteenth whizzing toward their bat at a speed close and twentieth centuries. Nevertheless, to ninety miles per hour. How many schol- in the past, as now, the leading causes of ars of visual culture, I wonder but won’t ask, blindness occur later in life, and often leave can claim such a level of visual acuity? some residual vision. Some may retain the What visual studies can bring to these ability to distinguish light from darkness, discussions is an interrogation of the bina- while others may continue to perceive ry opposition between blindness and sight. light, color, form, and movement to some It is clearly more useful to think in terms of degree. Some people may retain the acu- a spectrum of variation in visual acuity, as ity to read print or facial expressions, while well as a spectrum of variation in terms of lacking the peripheral vision that facilitates visual awareness or skill. The visual studies free movement through space. And regard- scholar, highly skilled in understanding im- less of the degree or quality of residual vi- ages, who loses some or even all her sight, sion, blind people differ widely in the ways will not lose the ability to analyze images they attend to, use or value these percep- and to communicate her observations. In tions. his essay, “Showing Seeing,” W. J. T. Mitch- Although the situation of the Hypo- ell describes a classroom exercise in which thetical is rare, his defenders are quick to students display or perform some feature discount anyone with any residual sight of visual culture as if to an audience that or with even the remotest possibility of a has no experience of visual culture. The ex- visual memory. In traditional discussions ercise assumes that some students will be of blindness, only total, congenital blind- better at the task, while others might im- ness will do. In a review of my book Sight prove their performance with practice, and Unseen, Arthur Danto asserted that I had in all cases their aptitude would have little, too much sight to claim to be blind (Danto if anything, to do with their visual acuity. 1999, 35). He quoted a totally blind gradu- The skill, as I understand it, is in the telling ate student he once knew who said that as much as it is in the seeing—the ability to he could not conceptualize a window, and translate images in all their complexity and that he was surprised when he learned that resonance into words. when a person’s face is said to glow, it does And as we move beyond the simple not in fact emit light like an incandescent blindness versus sight binary, I hope we light bulb. Danto does not tell us what be- can also abandon the clichés that use the came of this student or even give his name, word “blindness” as a synonym for inatten- using him only as a modern-day version of tion, ignorance, or prejudice. If the goal is the Hypothetical. He then goes on to relate for others to see what we mean, it helps to the history of the Molyneux question. say what we mean. Using the word in this If only the totally blind can speak of way seems a vestigial homage to the Hypo- blindness with authority, should we make thetical, meant to stir the same uncanny the same restriction on those who talk frisson of awe and pity. It contributes on about vision? Is there such a thing as to- some level to the perception of blindness tal vision? We know that a visual acuity of as a tragedy too dire to contemplate, which 20/20 is merely average vision. There are contributes in turn to lowered expectations individuals whose acuity measures better among those who educate and employ the than 20/20, 20/15, or even 20/10. Such in- blind. It also contributes to the perception dividuals can read every line of the familiar among the newly blind themselves that the BLINDNESS AND VISUAL CULTURE: AN EYEWITNESS ACCOUNT | 455 only response to their new condition is to the ability to perceive color. Another de- retire from view. veloped a sort of telepathic vision, allow- I will leave you with a futuristic image ing him to form images of places at great of blindness. In Deborah Kendrick’s story, distances. Mary’s sensor gave her a kind of “20/20 with a Twist,” Mary Seymour, chief literal hindsight, making her able to create administrator of the department of visual a detailed mental picture of a room, only equality, looks back on her life from the after she had left it. These bits and pieces of year 2020. In this blind Utopia, the major vision serve as a badge of the former rebels’ handicaps of blindness have been eliminat- heroic past, and allow them to perform ened; private automobiles were phased out a tertaining parlor tricks, but are otherwise decade earlier and technologies to convert easy to disregard. print to Braille or voice had become ubiq- This is a far cry from the Hypothetical. uitous and transparent. Of course, Mary In Deborah Kendrick’s image of the future, reflects, it was not always like this. Back in blindness is a simple physical characteris- the dark ages of the 1980s and ’90s, Braille tic rather than an ominous mark of other- proficiency had ceased to be a requirement ness. If the Hypothetical Blind Man once for teachers of blind children, Braille pro- helped thinkers form ideas about human duction facilities and radio reading ser- consciousness surely his day is done. He vices were shut down, and blind children does too much damage hanging around. It were no longer being educated at all. Mary is time to let him go. Rest in peace. and other blind people who had grown up in an earlier, slightly more enlightened period, banded together to lead a nonvio- REFERENCES lent, visionary rebellion to bring down the Charles, Ray. Interview. The Today Show. NBC Televi- oppressive regime. They tampered with sion, October 4, 2001. the power supply—since darkness is no Danto, Arthur. 1999. “Blindness and Sight.” The New impediment to blind activity—scrambled Republic 220 (16): 34–36. computer transmissions and disrupted Diderot, Denis. 1999. Thoughts on the Interpretation television broadcasts. All across the coun- of Nature and Other Philosophical Works. Ed. Da- vid Adams. Manchester: Clinaman Press. try, television screens went blank while the Gitter, Elisabeth. 2001. The Imprisoned Guest: Samuel audio continued, interrupted periodically Howe and Laura Bridgman, the Original Deaf- by the revolutionary message: “You, too, blind Girl. New York: Farrar, Straus and Giroux. can function without pictures.” Husson, Thérèse-Adèle. 2001. Reflections: The Life and The rebel leaders were captured, how- Writing of a Young Blind Woman in Post-revolutionary France. Eds. Catherine J. Kudlick and Zina ever, and forced to undergo implantation Weygand. New York and London: New York Uni- of optic sensors, which, the captors rea- versity Press. soned, would transform them into sighted Keller, Helen. 2003. The World I Live In. Ed. Roger Shat- people who would see the error of their tuck. New York: New York Review Books. ways and abandon the cause. But the reb- Kendrick, Deborah. 1987. 20/20 with a Twist. In With Wings: An Anthology of Literature by and about els persisted. The power supply was shut Women with Disabilities, eds. Marsha Saxton and down completely. The government fell, Florence Howe New York: Feminist Press at the and the captured leaders were liberated in City University of New York. triumph. Magee, Bryan and Milligan, Martin. 1995. On Blind- Significantly, the optic sensors did not ness. Oxford and New York: Oxford University Press. transform the revolutionary leaders into Mitchell, W. J. T. 2002. “Showing Seeing: A Critique sighted people. Rather, each acquired only of Visual Culture.” Journal of Visual Culture 1 a facet of visual experience. One gained (2):165–181. CHAPTER 33

Disability, Life Narrative, and Representation G. Thomas Couser

Disability is an inescapable element of hu- cultural representation of disability has man existence and experience. Although functioned at the expense of disabled peo- it is as fundamental an aspect of human ple, in part because they have rarely con- diversity as race, ethnicity, gender, and trolled their own images. In the last several sexuality, it is rarely acknowledged as such. decades, however, this situation has begun This is odd, because in practice disability to change, most notably in life writing, es- often trumps other minority statuses. That pecially autobiography: in late twentieth is, for people who differ from the hege- century life writing, disabled people have monic identity in more than one way, cer- initiated and controlled their own narra- tain impairments—such as blindness or tives in unprecedented ways and to an ex- deafness—may function as their primary traordinary degree. defining characteristic, their “master sta- Indeed, one of the most significant de- tus.” In this sense, disability may be more velopments—if not the most significant fundamental than racial, ethnic, and gen- development—in life writing in North der distinctions. Yet until the recent advent America over the last three decades has of Disability Studies, it escaped the criti- been the proliferation of book-length ac- cal scrutiny, theoretical analysis, and rec- counts (from both first- and third-person ognition accorded other forms of human points of view) of living with illness and variation. disability. Whereas in the 1970s it was diffi- At the same time, disability has had a cult to find any representation of most dis- remarkably high profile in both high and abling conditions in life writing, today one popular culture, both of which are satu- can find multiple representations of many rated with images of disability. Unlike conditions. Equally significant, and more other marginalized groups, then, disabled remarkable, one can find autobiographical people have been hyper-represented in accounts of conditions that would seem to mainstream culture; they have not been preclude first-person testimony altogeth- disregarded so much as they have been er—for example, autism, locked-in syn- subjected to objectifying notice in the form drome, and early Alzheimer’s disease. of mediated staring. To use an economic A comprehensive history of disability life metaphor that is a literal truth, disability writing has yet to be written, but it is safe has been an extremely valuable cultural to say that there was not much in the way commodity for thousands of years. The of published autobiographical literature DISABILITY, LIFE NARRATIVE, AND REPRESENTATION | 457 before World War II. War both produces and people is a cultural manifestation of a hu- valorizes certain forms of disability; not man rights movement; significantly, the surprisingly, then, disabled veterans pro- rise in personal narratives of disability has duced a substantial number of narratives roughly coincided with the disability rights after the war. Polio generated even more movement, whose major legal manifesta- narratives; indeed, polio may be the first tion in the United States is the Americans disability to have engendered its own sub- with Disabilities Act, which was passed in stantial autobiographical literature (Wil- 1990 and amended in 2008, but has yet son). In the 1980s and 1990s, HIV/AIDS and to be fully implemented. The first flower- breast cancer provoked significant num- ing of disability autobiography is also part bers of narratives; many of these challenge of a disability renaissance involving other cultural scripts of the conditions (such as arts and media. Disability autobiography that AIDS is an automatic death sentence should be seen, then, not as spontaneous or that breast cancer negates a woman’s “self-expression” but as a response—in- sexuality [Couser 1997]). A dramatic exam- deed a retort—to the traditional misrep- ple of the generation of autobiographical resentation of disability in Western culture literature devoted to a particular condition generally. is the advent of autobiographies by people This rich body of narrative can be ap- with autism (sometimes referred to as “au- proached in a number of ways. One way tiebiographies”). Before 1985 these were of getting at the relation between somatic virtually nonexistent; since 1985, nearly variation and life narrative is through an one hundred have been produced. (This everyday phenomenon: the way deviations number does not include the many nar- from bodily norms often provoke a demand ratives written by parents of autistic chil- for explanatory narrative in everyday life. dren.) Thus, one major post-World War II Whereas the unmarked case—the “nor- cultural phenomenon was the generation mal” body—can pass without narration, of large numbers of narratives about a the marked case—the scar, the limp, the small number of conditions. missing limb, or the obvious prosthesis— A complementary phenomenon has calls for a story. Entering new situations, been the production of small numbers of or re-entering familiar ones, people with narratives about a large number of con- anomalous bodies are often called upon to ditions, some quite rare and some only account for them, sometimes quite explic- recently recognized. Among these condi- itly: they may be asked, “What happened tions are ALS (also known as Lou Gehrig’s to you”? Or, worse, they may be addressed disease), Alzheimer’s, aphasia, Asperger’s as if their stories are already known. Evi- syndrome, asthma, cerebral palsy, chronic dence of this is necessarily anecdotal. Let fatigue syndrome, cystic fibrosis, diabetes, one compelling example suffice. Harriet disfigurement, Down syndrome, epilepsy, McBryde Johnson, a Charleston lawyer and locked-in syndrome, multiple sclerosis, disability rights advocate who had a con- obesity, obsessive-compulsive disorder, genital muscle-wasting disease, reported stuttering, stroke, and Tourette syndrome. remarks made by strangers she encoun- As the twentieth century drew to a close, tered on the street as she drove her power then, many disabilities came out of the chair to the office: closet into the living room of life writing. Like life writing by other marginalized “I admire you for being out: most people groups—women, African Americans, and would give up.” gays and lesbian—life writing by disabled “God bless you! I’ll pray for you.” 458 | G. THOMAS COUSER

“You don’t let the pain hold you back, do narratives is a political as well as a mimet- you?” ic act—a matter of speaking for as well as “If I had to live like you, I think I’d kill myself.” speaking about. (2) With particularly severe or debilitating conditions, particularly those affecting the One of the social burdens of disability, mind or the ability to communicate, the then, is that it exposes affected individu- very existence of first-person narratives als to inspection, interrogation, interpreta- makes its own point: that people with con- tion, and violation of privacy. dition “X” are capable of self-representa- In effect, people with extraordinary bod- tion. The autobiographical act models the ies are held responsible for them, in two agency and self-determination that the dis- senses. First, they are required to account ability rights movement has fought for, even for them, often to complete strangers; sec- or especially when the text is collaboratively ond, the expectation is that their accounts produced. One notable example is Count Us will serve to relieve their auditors’ discom- In: Growing Up with Down Syndrome, a col- fort. The elicited narrative is expected to laborative narrative by two young men with conform to, and thus confirm, a cultural the syndrome in question. Not only is the script. For example, people diagnosed with title cast in the imperative mood—“count us lung cancer or HIV/AIDS are expected to in”—the subtitle puns on “up” and “down,” admit to behaviors that have induced the a bit of verbal play that challenges conven- condition in question—to acknowledge tional ideas about mental retardation, such having brought it upon themselves. Thus, as that those with it never really mature. one fundamental connection between life Autobiography, then, can be an especially narrative and somatic anomaly is that to powerful medium in which disabled people have certain conditions is to have one’s can demonstrate that they have lives, in life written for one. For people with many defiance of others’ common sense percep- disabilities, culture inscribes narratives on tions of them. Indeed, disability autobiogra- their bodies, willy nilly. phy is often in effect a post-colonial, indeed Disability autobiographers typically be- an anti-colonial, phenomenon, a form of gin from a position of marginalization, be- autoethnography, as Mary Louise Pratt has latedness, and pre-inscription. Yet one can defined it: “instances in which colonized see why autobiography is a particularly subjects undertake to represent themselves important form of life writing about dis- in ways that engage with [read: contest] the ability: written from inside the experience colonizer’s own terms” (7). in question, it involves self-representation People with disabilities have become by definition and thus offers the best-case increasingly visible in public spaces and scenario for revaluation of that condition. open about their disabilities. But their Long the objects of others’ classification physical presence in public life represents and examination, disabled people have only a rather limited kind of access. Prop- only recently assumed the initiative in erly conceived and carried out (admittedly, representing themselves; in disability au- a large qualifier), life narrative can provide tobiography particularly, disabled people the public with controlled access to lives counter their historical subjection by oc- that might otherwise remain opaque or ex- cupying the subject position. In approach- otic to them. Further, much disability life ing this literature, then, one should attend writing can be approached as “quality-of- to the politics and ethics of representation, life” writing because it addresses questions for the “representation” of disability in such discussed under that rubric in philosophy, DISABILITY, LIFE NARRATIVE, AND REPRESENTATION | 459 ethics, and especially biomedical ethics. WORKS CITED It should be required reading, then, for Couser, G. Thomas. Recovering Bodies: Illness, Dis- citizens in a world with enormous tech- ability, and Life Writing. Madison: U of Wisconsin nological capability to sustain life and re- P, 1997. pair bodies in the case of acute illness and Johnson, Harriet McBryde. Too Late to Die Young: injury but with very little commitment to Nearly True Tales from a Life. New York: Henry Holt, 2005. accommodate and support chronic dis- Kingsley, Jason and Mitchell Levitz. Count Us In: ability. Because disability life narratives can Growing Up with Down Syndrome. New York: Har- counter the too often moralizing, objec- court, 1994. tifying, pathologizing, and marginalizing Pratt, Mary Louise. Imperial Eyes: Travel Writing and representations of disability in contempo- Transculturation. New York: Routledge, 1992. Wilson, Daniel J. “Covenants of Work and Grace: rary culture, they offer an important, if not Themes of Recovery and Redemption in Polio unique, entree for inquiry into one of the Narratives.” Literature and Medicine 13, 1 (Spring fundamental aspects of human diversity. 1994): 22–41. CHAPTER 34

Autism as Culture Joseph N. Straus

AUTISM AS CULTURE overshadow everything else” (Asperger 1944/1991, 37). Like Kanner, Asperger chose the term “autism,” to refer to what The Originary Moment he called “a fundamental disturbance of In 1943, Leo Kanner, a child psychiatrist contact” (38): working at Johns Hopkins University, published an article titled, “Autistic Human beings normally live in constant Disturbances of Affective Contact.” interaction with their environment, and (Kanner 1943). In it, he identified a group react to it continually. However, “autists” of children who shared certain traits: “All have severely disturbed and considerably limited interaction. The autist is only himself of the children’s activities and utterances (cf. the Greek word autos) and is not an are governed rigidly and consistently by active member of a greater organism which the powerful desire for aloneness and he is influenced by and which he influences sameness” (249). The children shared constantly (38).1 an “inability to relate themselves in the ordinary way to people and situations” Presumably there have always been and an “anxiously excessive desire for the people who had the sorts of neurology maintenance of sameness,” and displayed and behaviors we now label as autistic, “an extreme autistic aloneness that, when- but insofar as they were remarked at ever possible, disregards, ignores, shuts out all, they were parceled out to different anything that comes to the child from the categories (most notably various forms outside” (242, 245, italics in original). of madness, especially schizophrenia, At virtually the same moment, separated or “feeblemindedness”).2 By creating by an ocean and a world war, the Viennese the new classification of autism, Kanner psychologist, Hans Asperger, published and Asperger participate in the endless a study of a group of children with reshaping of the map of psychological remarkably similar characteristics: “The disorders, which rise and fall historically, children I will describe all have in common as much in response to cultural and social a fundamental disturbance [that] results pressures as to any neutral, scientific in severe and characteristic difficulties observation.3 Today, autism may appear of social integration. In many cases, the a secure, natural category, but it is as social problems are so profound that they historically and culturally contingent as AUTISM AS CULTURE | 461 neurasthenia, hysteria, and fugue—science- Psychiatric disorders are often a based and neutral medical categories of a pathologically excessive version of previous era—and may someday share their some trait that, in its cultural context, is fate (Hacking 1998; Porter 2002; Davis 2008). considered socially desirable (anorexia is excessive thinness, neurasthenia is excessive female passivity, fugue is The Rise of Autism excessive travel, ADHD is excessive In the decades following Kanner and energy and activity, obsession is excessive Asperger’s discoveries (or creations), autism focus and concentration). In this sense, remained a small, marginal phenomenon autism might be understood as excessive within psychiatry and virtually invisible individuality, autonomy, and self-reliance, to the general public. During the 1960s normally understood as highly desirable and 1970s, the only mention of autism traits. Autism might be understood to in the DSM (Diagnostic and Statistical represent a pathological excess of what the Manual: the official diagnostic guidelines Western world most prizes—autonomous of the American Psychiatric Association) individuality, with its promise of liberty lumped it among the criteria for Childhood and freedom—reconfigured as what it most Schizophrenia. Autism did not enter the fears—painful solitude, isolation, and loss DSM on its own until its third edition, in of community. Autism has thus become 1980, and the diagnostic criteria were then an emblematic psychiatric condition significantly expanded and loosened in of the late twentieth and early twenty- the fourth edition in 1994, when Asperger’s first centuries, simultaneously a medical Syndrome was also added to the mix as one diagnosis and a cultural force. of several Autism Spectrum Disorders.4 As a medical diagnosis, then, autism went from THE CONSTRUCTION OF AUTISM: being unknown before 1943, to a marginal THE MEDICAL AND SOCIAL MODELS phenomenon before 1980, to a remarkably common diagnosis today, with some sources At present, autism is generally conceived claiming that as many as 1% of all children within one of two conceptual models are or should be classified as somewhere on and embedded within one of two sorts the autism spectrum (Fombonne 2005).5 of cultures: the medical model and the The rise in diagnosis and classification culture of medical science versus the has fueled a dramatic increase in public social model and the culture of the social awareness, which has in turn encouraged group. The difference centers on a single additional diagnosis and classification. As question: is autism a medical condition one barometer, articles in the New York (syndrome, disorder, pathology) or is it a Times mention autism for the first time in social group (an identity, a shared culture)? 1960, and contain the word in the title only Although it is common to imagine culture seventeen times before 1990, when a sharp and science as representing opposing upward trend begins. In 2008 alone, the principles (objective versus subjective, New York Times ran 169 articles on autism, part of the natural world, and therefore roughly one every other day, and this real, or imagined and created), the degree of attention is indicative of what work that scientists and doctors do is has been happening in all of the popular also creative and imaginative, is also media, including the Web. Autism has historically contingent, is also expressive become a major presence in the culture of of the values of a particular time, place, early twenty-first century America. and worldview. 462 | JOSEPH N. STRAUS

Medical culture—what has been considered disabling, and the meanings described and vigorously critiqued within attached to disability all vary with time, Disability Studies as the medical model— place, and context. For the most part, has certain defining attributes. First, Disability Studies has concerned itself with medical culture treats disability as physical impairments, especially blind- pathology, either a deficit or an excess ness, deafness, and mobility impairments, with respect to some normative standard. tracing their histories and systems of Second, the pathology resides inside the signification in art, culture, and society. individual body in a determinate, concrete Disability Studies, and its social model location. Third, the goals of the enterprise of disability, have been notably less are diagnosis and cure. If the pathology concerned and successful with cognitive cannot be cured—if the abnormal condition impairments and developmental dis- cannot be normalized—then the defective abilities, like autism. This has had to do body should be sequestered lest it con- in part with the problem of narration: taminate or degrade the larger community. the member of the minoritized social In this, medical culture is an aspect of what group should be able to resist medicalized Garland-Thomson (2004) calls “the cultural discourse by speaking for him or herself, logic of euthanasia”: disabled bodies should but people with autism communicate either be rehabilitated (normalized) or in non-standard ways and may lack the eliminated (either by being sequestered from ability to narrate their own experiences.7 sight in homes or institutions or by being A second issue has been the problem of allowed or encouraged to die).6 community: a group of people who have Since 1943, when the medicalized problems with communication and social construction of autism began, the ways of relatedness may find it difficult to forge diagnosing autism, the associated medical a social group, and may thus be difficult interventions or cures, and the conception to constitute as a self-aware community of autism itself have undergone significant within a social model of disability. changes. In that sense, it might be better In recent years, however, thanks to the to talk about multiple medical models of rapid expansion of the autistic community autism, including Freudian psychotherapy, from the handful of children known to cognitive psychology, brain science, and Kanner and Asperger to the vast numbers genetics (Nadeson 2005). The shift from who now are understood, and understand model to model comes in part in response themselves, to inhabit a broad “autism to observations and discoveries (the spectrum,” and thanks to the profusion scientific method) and in part in response of writing, art, and music by people with to changes in fashion: medical science is, autism, and thanks to the Internet which in part, a cultural phenomenon with its permits reclusive people to find meaningful own history. As that history has unfolded, social contact, it has become possible to the medical construction of autism has conceive people with autism as a social changed and evolved. group with a distinctive, shared culture. In A second way of constructing autism what follows, I will critique various medical involves the social model of disability as models of autism, and then argue for a it has been described within Disability social model of autism—one grounded in Studies. In the social model, disability is Disability Studies—in which we see self- understood as socially constructed rather aware people claiming autism as a valued than biologically given: the nature of political and social identity and celebrating disability, the kinds of conditions that are a shared culture of art and everyday life.8 AUTISM AS CULTURE | 463

AUTISM AND THE CULTURE OF processing device, like a computer, and MEDICINE autism results from damage to certain of its “modules.” There are three widely Locating Autism in the Psyche: Freudian discussed theories of autism that identify Psychotherapy deficits in central coherence, theory of mind, and executive function.10 In the first of these Under the medical model, autism— theories, autism is a disorder characterized understood as a sort of illness or disease— by “weak central coherence”—an atypically has been located in many different places weak tendency to bind local details into within the defective body, and corres- global percepts.11 In this view, the deficits in pondingly many cures or remedies have social relatedness (Kanner’s “aloneness”), been proposed. In the years following the as well as other intellectual deficits Second World War, amid the ascendancy associated with autism, are manifestations of Freudian psychoanalysis, autism was of an underlying inability to create larger located in the psyche and conceived as a meanings from discrete elements, or larger problem of ego differentiation. For Bruno social patterns from discrete individuals.12 Bettelheim, the preeminent proponent A second prevalent theory of autism based of the psychoanalytical approach to on cognitive psychology contends that the autism, the condition resulted from a central deficit is a lack of “theory of mind”: child’s deliberate if unconscious choice to people with autism are deficient in the abil- withdraw from a hostile, rejecting mother. ity to attribute intentions, knowledge, and Like a concentration camp inmate—this feelings to other people.13 As a result, peo- analogy was specifically proposed by ple with autism have difficulties both with Bettelheim—the child tries to protect social relatedness and with communication. itself from a murderous environment by Limitations in social relatedness and com- erecting defenses and retreating into the munication create the impression of isola- “empty fortress” of autism. The autism is tion, as though the person with autism were located within the child, but caused by the living in a separate, self-enclosed world.14 “refrigerator mother,” whose own pathology That notion underpins the label “autism” prevents the child from developing normally. itself and resonates with both Kanner’s The proposed cure involves removing the “aloneness” and Asperger’s “fundamental child from the mother’s care and providing disturbance of contact.” psychoanalytical treatment.9 While the A third prevalent theory of autism psychodynamic approach to autism has relates autistic behavior to deficiencies in largely been abandoned in the US, it persists the brain’s “executive function.” According in other countries (especially France) and in to this theory, the obsessive routines the seemingly ineradicable belief that, when and inflexibility associated with autism it comes to poor outcomes for children, (Kanner’s “sameness”) result from difficul- the mother is always to blame (Ladd-Taylor ties in planning strategies for achieving and Umanski 1998; Landsman 1998). goals and in modulating mental focus or shifting attention easily from task to task.15 Locating Autism in the Mind: Cognitive Psychology (Central Coherence, Theory A Triad of Impairments (Social of Mind, and Executive Function) Interaction, Communication and Imagination, Repetitive Behavior) Approaches to autism that emerge from cognitive psychology locate it in the mind. The The Diagnostic and Statistical Manual of mind is conceived as a kind of information- Mental Disorders (DSM) is the authorita- 464 | JOSEPH N. STRAUS

tive source for a medicalized understand- creation of those who describe it, a prod- ing of autism and other “mental illnesses.” uct of culture as much as science. The most recent fourth edition of the DSM defines “autistic disorder” as involving Locating Autism in the Brain or the three sorts of abnormalities, often referred Genes to as a “triad of impairments: 1) “qualitative impairment in social interaction; 2) “quali- The most recent science-based studies of tative impairments in communication,” autism locate it in the brain or the genes, still which may include “abnormal functioning” inside the individual body, but now in loca- in “symbolic and imaginative play”; and 3) tions that are, at least in principle, available “restricted, repetitive, and stereotyped pat- to direct observation. Studies of the brain terns of behavior, interests, and activities.” have focused on its chemistry (Anderson Asperger’s Disorder or Asperger Syndrome, 2005) as well as its structure, development, which didn’t enter the DSM until 1994, is and function, often using structural and generally understood as a less severe form functional imaging studies (MRI and fMRI) of autism, along what is commonly referred (Minshew 2005 and Schultz 2005). Genetic to as “the autism spectrum.”16 studies have attempted to identify a set of Locating autism in the psyche or the “susceptibility genes” that shape the brain mind presents a challenge for the medi- (Rutter 2005).18 cal model, committed as it is to diagnosis For the most part, research in both of and cure. There can be no direct observa- these areas has been slow to show signifi- tion of the psyche or the mind—all we can cant results.19 That slow progress is certainly do is observe behaviors and make infer- due in part to the inherent complexity of ences about the sorts of interior processes the processes being studied. But it is due that might produce them. In the absence also to the heterogeneity of the population of direct observation, Freudian psycho- being studied. Our sense of who is autistic analysis and cognitive psychology have to has broadened and diversified remarkably rely on analogy and metaphor. As Susan since the originary moment of Kanner and Sontag (1978) observed, the profusion of Asperger. For Kanner in particular, autism metaphors is correlated with the poverty was an extremely rare disorder affecting of the science—the metaphors rush into children (his term was “infantile autism”), areas of ignorance. The murky causal- characterized above all by extreme alone- ity and ineffectual treatments associated ness. In more recent years, autism has with autism lead directly to metaphorical been extended to people of all ages who constructs like “mindblindness,” “execu- fall anywhere on the autism spectrum tive function,” and “central coherence,” (have an “autism spectrum disorder”) and not to mention the “ego.” The metaphors even to those who show signs of belong- are needed to bridge the gap between the ing to a “broader phenotype” of autism behaviors we can observe and their hid- (Dawson 2002; Pickles 2000). The defini- den source in the mind.17 Cognitive sci- tion of autism has not only broadened, but entists generally lack the literary flair of has also changed in fundamental ways: Bettelheim, Kanner, and Asperger, but Kanner’s “extreme autistic aloneness” is no their language is also necessarily figura- longer even part of the DSM definition, and tive, as they attempt to describe what can in fact does not describe what most people only be inferred. The figurative nature now understand as comprised by autism of their language enhances a sense that (people with autism are not “alone”—they autism is, at least in part, an imaginative mostly want social contact, but they seek it AUTISM AS CULTURE | 465 in unusual ways). Medical research is thus ultimately prove disappointing—we are directed toward a rapidly expanding and much more likely to end up with an at best constantly shifting target. I suggested ear- intermittently reliable genetic screening lier that, due to its lack of secure biologi- test that will present prospective parents cal basis, autism might eventually follow with a reproductive choice than with a the path of neurasthenia and hysteria into way of curing or significantly remediating quaintness and irrelevance.20 Now I would autism.22 Another likely outcome is that like to suggest that this process may be genetic research will contribute to the split- hastened by the increasing incoherence of ting of autism into several different catego- the category. Eventually, perhaps, what we ries—it may turn out that we should be now think of as autism will collapse from its speaking of autisms, rather than autism.23 internal contradictions, its contents redis- Despite sustained effort, medical sci- tributed to a variety of new categories and ence has found little to offer by way of cure, classifications. What holds it together at or even significant remediation. This sorry the moment is not so much science, where record may have to do simply with the med- we find a striking heterogeneity of possible ical, neurological, and genetic complexities causes, as culture. of autism. But I suspect it may have also to do with a bad fit between autism and the prevailing culture of science-based medi- Searching for a Cure cine: in short, there will never be a cure So far I have talked mostly about diagno- for autism any more than there were cures sis, but the medical model places on equal for fugue or hysteria because these are not emphasis on cure. If autism is understood diseases. Rather, they are clusters of behav- as an illness or disease, and one that is par- iors, abilities, and attitudes that, under ticularly complex in nature and therefore the right cultural conditions, get grouped hard to diagnose, it comes as no surprise together and provided with a label. The that proposed cures have sprung up like label appears to confer coherence on the perennials each spring, and just about as category, but this is a fiction, or rather, a often. People with autism can be induced contingent cultural construction.24 to function better (i.e. more normally) with behavioral approaches: tasks are bro- Critique of the Medical Model ken down into discrete steps, which are rehearsed, and successful completion of Instead of thinking of autism as a disease, them is rewarded.21 The ineffective cures with apprehensible cause, a determinate that have been proposed in recent years diagnosis, and a possible cure, it might be include psychotherapy, various forms of more productive to think of it as a “disease play therapy, auditory and sensory integra- entity,” which, according to Davis 2008, tion training, numerous nutritional and “allows us to move away from the positiv- dietary regimes, hormone and vitamin ist kind of descriptive categories of disease treatments, holding therapy, animal ther- and to think of diseases not as discrete apy, chelation, avoidance of vaccines, and objects but as ranges of bodily differences facilitated communication. A small num- and reaction” (22).25 Along similar lines, we ber of drugs may help in moderating some might begin to think of autism in light of of the behaviors associated with autism, what Morris 1998 calls a biocultural model, but do nothing to address autism directly. one that discusses illness and disease as Even the much more promising work emerging from a complex interaction of going on in neuroscience and genetics may biology and culture.26 In this view, diseases 466 | JOSEPH N. STRAUS

and illnesses of all kinds, including psychi- configured and reconfigured to maintain atric conditions like autism, are simultane- a shifting, culturally contingent distinction ously fully real, grounded in biology, and between the unremarked, normally abled also cultural artifacts. and the stigmatized disabled. Disability is The medical model requires that we simultaneously real, tangible, measurable, locate autism (like any pathology) in physical and an imaginative creation the body of the affected individuals—it designed to make sense of the diversity is their personal problem and it resides of human morphology, capability, and inside them. But autism is intrinsically a behavior. In a related minority-group relational phenomenon, a function of the model, people with disabilities are interaction between people. In that sense, understood to share a distinctive social, autism is a social/cultural phenomenon, cultural, and political identity, conferred by, not located within individuals but rather among other things, a shared experience of in the connections among individuals in oppression.29 a community. This may appear ironic in To bring the discussion back to light of Kanner’s claim that “aloneness” is autism, we might imagine that it is a the essential feature of autism. But that social construction rather than a medical aloneness is not something individuals can pathology, and that people labeled as achieve on their own, rather it is something autistic comprise a definable minority constructed in relation to other people. To group. But if autism is constructed, who talk about it meaningfully, then, we have does the constructing? And if people with to consider it within the ambient culture autism comprise a minority group, what and, more specifically, within the distinc- gives the group cohesion and identity other tive culture that autistic people have begun than shared medical symptoms? In answer, to construct. I would like to shift attention from autism as an abstract category to people who have been identified, or who might plausibly AUTISM CULTURE be identified, or who have identified As its central project, Disability Studies themselves as autistic and to study the has proposed supplanting the medical culture that these people have communally model of disability with a variety of models begun to create. Within a medical model, that shift our attention from biology to autism is constructed by professionals— culture.27 As Rosemarie Garland-Thomson psychiatrists, psychologists, educators—in has argued, “The meanings attributed to their articles, books, and clinical practices. extraordinary bodies reside not in inherent Within a social model, autism is constructed physical flaws, but in social relationships by autistic people themselves through the in which one group is legitimated by culture they produce (including writing, possessing valued physical characteristics art, and music), and its shared features give and maintains its ascendancy and its self- it cohesion and a distinctive identity.30 identity by systematically imposing the As an identity group, autism is role of cultural or corporeal inferiority somewhat amorphous, inclusive, and on others.”28 Disability has an evident heterogenous (although no more so than biological basis in relation to which human other strategically deployed political societies and cultures create elaborate groups, such as women, gay, or Hispanic). interpretive networks that give it meaning. In current thinking, autism lies along a The naturally occurring variations in spectrum, a neat linear progression from human shape, ability, and behavior are “low functioning” to “high functioning.” AUTISM AS CULTURE | 467

Given the increasing size and diversity difference, I will attempt to reclaim autism of the population classified as autistic, as a term of cultural identification and however, it might be better to think of it as pride, analogous in this way to queer an agglomeration, a network of overlapping and crip (McRuer 2006). My goal is to subgroups, and with the group as a whole have autism suggest not a defect but a defined by boundaries that are notably distinctive and valuable style of thinking permeable and porous. As with other and imagining—a vibrant and interesting “minority groups,” one can become autistic way of being in the world.31 In what follows, in a variety of ways, including medical I suggest three characteristics of the diagnosis, personal choice and self- autistic vision, each related to diagnostic identification, and even casual classification categories proposed by clinicians, and by outsiders. I don’t think it would be then I explore the ways in which this vision appropriate to impose a litmus test or to is expressed in writing, music, and art by require a doctor’s note. Instead, I intend autists. I focus on high autistic culture— the designation “autistic” to be an inclusive writing, music, and art—because here the one, especially for those who self-identify as distinctive autistic sensibility is distilled autistic, that is, who claim autism. and presented in the form of durable, public Using the concept of “neurodiversity” as objects. The same traits, however, can be a point of departure—a belief that autism found operating in less sensational ways is not a defect or pathology, but rather an in the daily lives of people with autism, aspect of naturally occurring and in- what I think of as the culture of everyday. herently desirable human variability—I will explore features of a distinctively autistic Local Coherence cognitive style and creative imagination. I will seek to understand autism as a way of People with autism are often richly attentive being in the world, a world-view enshrined to minute details, sometimes at the expense in a culture: to echo a familiar rallying of the big picture. They have an unusual cry from the disability rights movement, and distinctive ability to attend to details autism is a difference, not a deficit. on their own terms, not subsumed into a The medical model of autism provides larger totality—a propensity to perceive the a point of departure for a discussion of world in parts rather than as a connected autistic culture, but in that model, the whole. Objects are apprehended in their autistic style and creative imagination are full discrete and concrete individuality stigmatized as symptoms of a defective rather than as members or representatives body and mind. Aloneness, sameness, of a larger subsuming abstract category. deficits in executive function, lack of Autistic cognition involves “detail-focused theory of mind, inadequate drive toward processing” (Happé 2005, 640); it is based central coherence, impairments in social on local coherence.32 and communication skills, abnormal Writing as an insider, a person with functioning in imagination, stereotyped autism, Temple Grandin confirms this patterns of behavior—all the symptoms of sense of details perceived in their full “autistic disorder”—can be reinterpreted individuality without regard to a subsuming and recast as differences rather than context or category: deficits. The term autism is a medical term with a strongly stigmatizing impact. Unlike those of most people, my thoughts In what follows, and in keeping with the move from video-like, specific images to current impulse to embrace neurological generalization and concepts. For example, 468 | JOSEPH N. STRAUS

my concept of dogs is inextricably linked to repetition.33 People with autism often have every dog I’ve ever known. It’s as if I have a a preference for orderliness, system, and card catalogue of dogs I have seen, complete ritual. As Daniel Tammet, self-identified with pictures, which continually grows as I with Asperger Syndrome, says, “I have an add more examples to my video library. . . . My almost obsessive need for order and routine memories usually appear in my imagination which affects virtually every aspect of my in strict chronological order, and the images I visualize are always specific. There is no life” (Tammet 2006, 1–2). Of course obses- generic, generalized Great Dane. sion and single-mindedness can be highly (Grandin 1995, 27–28) desirable traits—human achievement often depends on them—and people with autism Similarly, Kamran Nazeer, also self- often have these traits in a high degree: identified as autistic, observes: In between episodes of compulsive behavior, Echolalia, or the constant, disconnected use I yearn for calmness and constancy. When of a particular word or phrase, is one example things stay the same it’s easier to feel safe, to of rhythmic or repetitive behavior, a trait understand what is expected and to gain a common among autistic people and often sense of connection. described as the desire for local coherence. (Lawson 2000, 2) This is the preference that autistic people frequently demonstrate for a limited, though Autistic children don’t like anything that immediate, form of order as protection looks out of place—a thread hanging on a against complexity or confusion. piece of furniture, a wrinkled rug, books that (Nazeer 2006, 3–4) are crooked on the bookshelf. Sometimes they will straighten out the books and other times they will be afraid. . . . When I became One aspect of local coherence is a refusal interested in something, I rode the subject to to subsume perceptions into a hierarchy— death. I would talk about the same thing over individual events are full and complete in and over again. It was like playing a favorite themselves, not operating the service of a song over and over on the stereo. Teenagers higher totality (Headlam 2006). As Gunilla do this all the time, and nobody thinks that Gerland observes, it is odd. But autism exaggerates normal behavior to a point that is beyond most There was something special about the way people’s capacity for understanding. I saw things. My vision was rather flat, two- (Grandin 1995, 146, 102) dimensional in a way, and this was somehow important to the way I viewed space and Autistic fixity of focus is a quality that people. I seemed to have to fetch visual enables another characteristic of autistic impressions from my eyes. Visual impressions cognition, what Oliver Sacks refers to as a did not come to me. Nor did my vision provide me with any automatic priority in what I “gift for mimesis” (Sacks 1995, 241). People saw—everything seemed to appear just as with autism, especially those with so-called clearly and with the same sharpness of image. “savant skills,” often have prodigious rote The world looked like a photograph. memories.34 The autistic cognitive and (Gerland 1997, 65–66) artistic style often involves doing one single thing with great intensity, again and again. Fixity of Focus Private Meanings In talking about local coherence, Nazeer refers to another characteristic of the autis- Autistic thinking is based on locally coher- tic cognitive style, namely a preference for ent networks of private associations.35 AUTISM AS CULTURE | 469

Like poetry, especially modernist poetry, niceties. In speech and in writing, the autistic language often involves unusual, autistic style is often direct to the point idiosyncratic combinations of elements of rudeness, unconstrained by social con- and images, with as much pleasure associ- ventions. As Gerland observes of her own ated with the sounds of the words as with behavior, “This apparent disregard for the their meaning. In Kristina Chew’s words, conventions contributed to my appearing “Autistic language is a fractioned idiom, its to be brave. In fact, I had absolutely no idea vocabulary created from contextual and that there were such things as conventions” seemingly arbitrary associations of word (Gerland 1997, 90). In autistic writing, and thing, and peculiar to its sole speaker music, and art, one often finds a striking alone . . . Autistic language users think originality with its roots in the drive toward metonymically, connecting and ordering private meaning with relatively little con- concepts according to seemingly chance cern for normal social conventions and and arbitrary occurrences in an ‘autis- normal communication styles. tic idiolect’ ” (Chew 2008, 142, 133). More broadly, a search for privacy—a space safe Autistic Writing and secure from the incessant demands of what Julia Rodas calls “compulsory social- Recent years have witnessed an explosion ity”—is a persistent theme in autism nar- of writing, both in print and on the Web, by ratives (Rodas 2004 and 2008). Temple people who identify themselves as autis- Grandin expresses the same notion in per- tic. While there has been a small amount sonal terms: of poetry and fiction, the dominant genre by far is that of autobiography or personal One of my students remarked that horses memoir.37 For some critics, the authorship don’t think, they must make associations. of these narratives is inherently problem- If making associations is not considered atic: if people are really autistic, with the thought, then I would have to conclude that difficulties in communication that entails, I am unable to think. Thinking in visual pic- then they will be unable to write, and if tures and making associations is simply a different form of thinking from verbal-based they are able to write, that means they linear thought. There are advantages and are not really autistic. Autism autobiogra- disadvantages to both kinds of thinking. Ask phies, like those by people with other sorts any artist or accountant.36 of cognitive or developmental disabilities, have often required some degree of media- Autistic expression is often introverted, tion (from co-authors or editors) and, at directed inward rather than outward. least in the early years, often came with Instead of a chain of logical inference, one forewords from certified autism experts to often finds rich networks of associations, vouch for their authenticity.38 It is true that often private in nature. Often these autistic discourse has sometimes had to be networks consist of richly observed mediated to some degree to make it com- specific details: autistic thinking tends to prehensible to a mainstream (neurotypi- be concrete rather than abstract. cal) audience, and it is possible that this In its search for private meaning, the might, in some sense, compromise a pure, autistic imagination often ends up not authentically autistic vision. Nazeer (2006), so much defying conventions as simply writing as a person with autism, observes, ignoring them. People with autism are generally not particularly eager to please, There may be something distinctive about which frees them to ignore the social autistic minds, but at least some of that 470 | JOSEPH N. STRAUS

autism has to be removed, or eased, before larger genre of autism memoirs by parents. autistic people can communicate meaning- But the memoirs by autists themselves fully, even with one another, and set their generally deviate from the standard script minds upon the world. While there’s no autis- (see Waltz 2005). The title of Grandin 1986 tic equivalent of sign language, some level of (Emergence), is somewhat misleading: the intervention is necessary (227). emergence she describes is at best equivo- Despite the necessity, in at least some cases, cal. Rather than celebrating a triumphant for “some level of intervention,” the sheer cure, she learns to get along in the nor- number of autism memoirs now available, mal world, but without changing herself and the qualities they almost universally in fundamental ways. Williams 1992 is share, make it possible to treat them both as something closer to a traditional “narrative a coherent body of literature and as one that of normalization” (Osteen 2008b, 28), but expresses a reliably authentic autistic world even here, the ending is hardly triumphant. view.39 In these memoirs, and allowing for More recent memoirs depart even farther considerable individual variation, the fea- from the usual narratives: these authors tures of autistic consciousness discussed tell more of self-discovery, of finding and above—local coherence, fixity of focus, and insisting on their essential autistic selves, private meanings—strongly shape the style than they do of overcoming or conversion. of writing. Mark Osteen’s comment about They are more like what Frank 1995 calls Williams 1992 applies to a broad range of “chaos stories” in their defiance of tradi- autism memoirs: “Williams’s voice and tional narrative order and their resistance viewpoint—blunt, headlong, self-obsessed to what Osteen 2008b calls “the tyranny of but curiously unreflective—bespeaks an the comic plot” (16). autistic consciousness that rarely general- This difference in narrative shape is izes or condenses, shows little comprehen- reflected also in the metaphors that the sion of or interest in how others think, and authors use to describe autism. In narratives possesses a weak grasp of narrative con- of autism by parents and professionals, nection” (Osteen 2008a, 27). These mem- the most common images are those of a oirs generally share a narrow emotional wall or the alien. The first of these suggests range, often with an appearance of dis- that the person with autism is concealed tance between the observer and the events or imprisoned, inaccessible to the outside experienced and narrated. They often lack world, which is implicitly invited to tear narrative cohesion, preferring to string the wall down. The best-known uses of together brief episodes. They often feel lit- this metaphor are those of Bettelheim (The eral-minded and concrete, with little in the Empty Fortress) and Park (The Siege), but way of humor or irony. The fixed, repetitive there are many others as well. The second of interests that are described are mirrored in these suggests that the person with autism a repetitive, bland style of writing. is a foreigner, a visitor from a different land, As for overall narrative shape, autistic or perhaps even a different planet. This memoirs occasionally appear to conform metaphor engages the mythical, archetypal to the standard ways of narrating disabil- figures of the alien, the changeling, the ity, namely as a story of overcoming (cure, child bewitched (Sacks 1995, 190), and or the triumph of the human spirit over is related to the Romantic notion that adversity) or a story of conversion (les- cognitive difference, like blindness, may sons learned by the passage through a both exemplify and confer a deeper, more terrible experience).40 Certainly these are spiritual vision. It is related also to the the narratives adopted within the even familiar idea of “compensatory faculties”: AUTISM AS CULTURE | 471 people with disabilities are often assumed Autistic Art to have gifts that compensate for and may Jessica Park and Stephen Wiltshire are result from their deficiencies—certainly autistic painters who have had some degree that is the way that autistic “savant” skills of public attention and commercial success. are often described. Jessica Park came to public attention at an Clinicians seem particularly prone to early age through one of the first and most these romanticizing notions: Asperger important personal narratives of autism describes one of the children he studied by her mother, Clara Park. A later book by as looking like he had “just fallen from the Clara Park brought the story up through sky” (Asperger 1944/1991, 60) and Uta Frith 2001, and encompassed Jessica Park’s refers to their “haunting and somehow burgeoning career as a painter.42 At an earlier otherworldly beauty” (Frith 2003, 1). In stage of her career, Jessica Park painted a similar but more prosaic vein, Grinker mostly heaters, radio dials or mileage imagines autism as an exotic country whose gauges, while now she devotes herself inhabitants need to be better studied by almost exclusively to individual archi- anthropologists.41 Grandin neatly turns tectural structures, mostly houses, painted this image around by imagining herself against an astronomically correct starry as an anthropologist trying to make sky. Throughout, her work is characterized sense of normate culture, which to her by vivid sharp lines, geometrical shapes, is exotic (Sacks 1995). Similarly, Miller and bright colors, and imbued with private 2003, a compilation of memoirs and codes and associations.43 Each element conversations by autistic women, answers is separate and distinct—no smudging or its title question, “Women from Another blurring—and rendered in astonishing Planet?” with a resounding no: detail. Here is Clara Park’s description of the We are not from another planet. We tricked paintings, together with her interpretation you. We made you look. We are from right of them as expressive of autism: here, Planet Earth. We are an integral part There is no vagueness in her painting, of this earth’s ecosystems, its intricately no clashing brushwork, no atmospheric inter-dependent network of niches and washes. It’s hard-edge stuff . . . Her art is potentialities . . . We are the first wave of a autistic in other ways too. Autistic literalism new liberation movement. . . . We are part has its visual equivalent; Jessy’s eye acts like of the groundswell of what I want to call a camera . . . Cameras do not ponder, they Neurological Liberation (xii). record. And there is the lack of shading . . . Most of her colors remain flat. Indeed, that The metaphors used in autistic memoirs unsettling tension between the prevailing rarely have to do with walls and aliens. flatness and the few bits of round is part Much more commonly, we find a of what makes her realism surreal. No metaphors of doors (Grandin 1995) and shading. No nuance. If Jessy’s painting glass (Dawn Prince-Hughes 2004; Wendy bespeaks her handicap, it is a handicap not Lawson 2000). Both involve an idea of surmounted but transmuted into something separation—the autistic world and the rich and strange. Here is autism in its core normate world are distinct—but the characteristics, literal, repetitive, obsessively boundary between them permits people exact—yet beautiful. In her paintings, reality has been transfigured. on both sides to see through (it’s not an (Park 2001, 130–31) impermeable wall), and possibly to move through as well. Autism culture is distinct, Jessica Park’s work, in all of its rich but it’s still a human culture. individuality, resonates with the three 472 | JOSEPH N. STRAUS

features of autistic imagination discussed they way they make music, as composers above: local coherence, fixity of focus, and and performers. In the domain of pitch private meanings. I think it is a mistake, perception, I note that Absolute Pitch (AP) however, to overemphasize the camera-like, is significantly more prevalent among literal quality of these paintings. While they people with autism than in the general are meticulously observed and rendered, population. As a non-relational strategy they are also richly imaginative and of pitch perception, one based on the interpretive, vibrating with energy and life internal qualities of a tone without respect and, in their incongruous juxtapositions of to other tones, AP would seem to epitomize brilliant colors, and of brightly sunlit houses an autistic cognition of music, based on against a nighttime sky, even humor. local rather than central coherence.46 Some of the same issues arise in the More generally, we might speculate that, if work of Stephen Wiltshire which has been normal, non-autistic listening emphasizes extravagantly admired, some would say contextualization and patterning, autistic “enfreaked,” for its astonishing, camera- listening emphasizes the integrity of the like literalism. Wiltshire draws and paints discrete event, an orientation toward the cityscapes, and he is best known for part rather then the whole. panoramic views of major cities (including Autistic listeners may be more attuned London, Rome, Tokyo, Frankfurt, Madrid, to private, idiosyncratic associations than and Jerusalem), often produced after larger shared meanings. Autistic hearing is shockingly brief exposure to the sights he both private and “fractionated.” If normal depicts in such naturalistic and accurate hearing involves the creation of hierarchies, detail.44 The ubiquitous Oliver Sacks, who autistic hearing involves the creation of has championed and written about both associative networks.47 Individual events Wiltshire and Jessica Park, has questioned are not so much clumped together to create the extent to which Wiltshire’s art can be larger patterns as they are appreciated both considered truly creative, given its literal for their own sake and for the associations fidelity to his subjects: perhaps his art is they may suggest with other individual too purely imitative to be taken seriously as events. Autistic listeners may have a creative art.45 I think that underestimates preference for repetition and the cognitive the individual and interpretive aspects of capacity for recalling extended musical Wiltshire’s artistic vision: even a camera passages in full detail. Like absolute pitch, offers a particular view, not an unmediated prodigious rote memory epitomizes glimpse of reality. Wiltshire’s art unfolds autistic hearing. within a distinctive culture of autistic In the portrait I have painted here, an perception and cognition, including local autistic listener is someone who attends coherence (it would be hard to imagine an to the discrete musical event in all of its art richer in detail), fixity of focus (Sacks’s concrete detail (local coherence); who “gift for mimesis”), and private meanings prefers the part to the whole; who is adept (the work vibrates with networks of visual at creating associative networks (often associations), but betrays also a distinctively involving private or idiosyncratic mean- individual way of seeing the world. ings); and who may have absolute pitch and a prodigious rote memory. In each of these respects, autistic hearing challenges Autistic Music normal hearing, which is presumed to be The autistic style can be felt both in the oriented toward global coherence, the syn- way autistic people perceive music and thesis of wholes from parts, the creation of AUTISM AS CULTURE | 473 relationships among discrete events, the their daily lives to express and represent subsuming context, and the creation of themselves. I am thinking of activities like conceptual hierarchies, particularly in the calendar calculation, puzzle solving, math- domain of pitch. ematical manipulation, and engagement In many ways, the legendary Canadian with and possible memorization of favorite pianist, Glenn Gould, epitomizes autistic television shows or movies. These do not perception of music in his extraordinary result in works of art, but they do express performances. In his lifetime, Gould was the same autistic values of local coherence, as famous for his personal eccentricities private meaning, and fixity of focus that as for the shocking originality of his musi- also characterize autistic high art. Autism, cal interpretations, and I would argue like other disabilities, can be thought of, that both have a common source in his at least in part as a kind of performance: autism.48 He disliked the spontaneous give not something you are, but something and take, the socially interactive nature of you do.50 By performing autistically, gifted live performance and, fairly early in his writers, artists, and musicians, along with career, abandoned the concert stage for just-average autistics, participate in the the privacy and isolation of the recording construction of autism and in building a studio. His profound social disengagement community of autistic people. isolated him not only from the live concert audience but also from the community of CLAIMING AUTISM past and present pianists—this may thus have contributed to the astonishing origi- We are living in a period in which a culture nality of his musical interpretations. of autism, constructed not by medical pro- Specific aspects of Gould’s playing may fessionals but by people with autism, has also be related to his autism, including his begun to emerge. Like other cultures in our preference for extreme isolation of indi- multicultural landscape, autism culture vidual tones through persistent staccato has involved a search for historical roots. articulation. One of the distinctive hall- Where were the people we now think of as marks of Gould’s playing is separation and autistic before the category was created in detachment: he separates the lines within a 1943? Are there historical figures who might polyphonic texture and within each line he be claimed as progenitors, who might be separates the notes from each other.49 The held up as a source of communal pride and detachment of lines from other lines, and identification? The identification of pre- notes from other notes is a striking musi- historic (i.e. pre-1943) figures with autism cal affirmation of an autistic preference has become a small cottage industry, and for local coherence. In this sense, Gould’s many names have been proposed, includ- autism provides a way of understanding ing the Wild Boy of Aveyron and other “wild his life and his art in an integrated way. boys,” Kaspar Hauser, Hugh Blair, John Instead of seeing his famous “eccentrici- Howard (Frith 2003); Isaac Newton, Albert ties” as distracting, inessential personal Einstein, Andy Warhol (Collins 2004); mannerisms, we can see them as part of an Wolfgang Mozart, Ludwig van Beethoven, autistic worldview. Herman Melville, Ludwig Wittgenstein, Although I have emphasized autistic Lewis Carroll, Charles Darwin, Vincent van high culture—writing, art, and music— Gogh, Béla Bartók, W. B. Yeats (Fitzgerald there is also a much broader autistic cul- 2004).51 ture of everyday life, encompassing the Historical genealogies of this kind are sorts of things that autistic people do in extremely problematic. First, there is the 474 | JOSEPH N. STRAUS

lack of direct observation—for many of I believe autism can be a beautiful way of these figures it is hard to know reliably seeing the world. I believe that within autism many significant personal details, much there is not only the group—the label—but less if they met the elaborate and changing the individual as well; there is strength in it, criteria for a condition that did not even and there is terror in its power. When I speak of emerging from the darkness of autism, have a name until 1943. Second, there is I do not mean that I offer a success story the problem of feedback—what Hacking neatly wrapped and finished with a “cure.” 1999 calls “biolooping.” When people are I and the others who are autistic do not identified with a particular condition, like want to be cured. What I mean when I say autism, they may receive certain treat- “emergence” is that my soul was lifted from ments (both in the sense of medical inter- the context of my earlier autism and became ventions and responsive behaviors from autistic in another context, one filled with others), and these may in turn alter the wonder and discovery and full of the feelings condition. Whatever their underlying neu- that so poetically inform each human rology, people who live with autism today life. . . . Much like the deaf community, we are behaviorally and cognitively different autistics are building an emergent culture. We individuals, with our cultures of one, are from earlier generations precisely because building a culture of many. of the consequences of being classified as (Prince-Hughes 2004, 2–3, 7) autistic. Third, and most important, to the extent that autism is a social and cultural I totally agree with the need for those with an phenomenon rather than (or in addition Autism Spectrum Condition (ASC not ASD to) a medical diagnosis—the central con- [i.e. condition, not disorder]) to be recognized tention of this essay—it simply did not as a minority whose rights and needs need exist or, at best, existed in an entirely differ- to be acknowledged and respected by the majority. But on the basis that they have a ent form.52 Until very recently, people born shared information processing difference with the characteristic neurology of autism to the majority of the population. . . . who would have been abandoned or placed in often fail to provide forms of education, institutions for the insane or feebleminded. communication, social activities/networks, In a few cases, if they had remarkable skills, occupation, and employment most they might have been tolerated as eccen- appropriate to this form of information trics, but their eccentricities would not processing. have coalesced into anything very much (Williams 2006, 206) like autism as it appears today. In my view, While it is important for people with autism the search for ancestors must either be to maintain our own identities as a culture abandoned or pursued in an appropriately and a way of being, it is also important to tentative way. We will have to content our- learn how to interface with the vast majority selves with the emergence of a community of people who are not on the autism that is new, tracing its roots back only to spectrum. 1943, but one that is now coalescing and (Shore 2006, 201) burgeoning. As autism culture takes shape, with its If I could snap my fingers and be nonautistic, I would not—because then I wouldn’t be distinctive cognitive style and worldview, it me. Autism is part of who I am . . . As I have is becoming a source of identity and pride said, it has only been recently that I realized within a rapidly growing community. More the magnitude of the difference between and more, just as self-aware people with me and most other people. During the past disabilities have learned to claim disability three years I have become fully aware that (Linton 1998), autists are claiming autism: my visualization skills exceed those of most AUTISM AS CULTURE | 475

other people. I would never want to become do, what they do through and with autism so normal that I would lose these skills. (Grandin 1995 describes herself as “a per- (Grandin 1995 60, 180) son whose disability has provided me with We are women, living our ordinary lives, certain abilities” (204)). In that spirit, they with joys and sorrows as our circumstances have begun to forge a thriving community dictate/allow, doing many of the things non- of like-minded people, committed to cel- autistic women do, feeling many of the same ebrating their shared difference. feelings, yet we are, in all of this, profoundly, astonishingly, and perfectly different. (Miller 2003, xxiii) NOTES 1. Both Kanner and Asperger took the term “autism” Previously, we discussed the social and from a Eugen Bleuler, a Swiss psychiatrist of an cultural conditions that made it possible earlier generation, who had coined it in 1908 with for autism to be conceived as a psychiatric reference to the tendency of his patients with schizophrenia to withdraw from the external diagnosis, and for that diagnosis to prolif- world into fantasy. Bleuler also coined the term erate. Now we are a position to summarize “schizophrenia.” the social and cultural conditions that have 2. As Kanner (1943) observes: “It is quite possible made it possible for autism to emerge and that some such children have been viewed as flourish as a distinctive human culture with feebleminded or schizophrenic. In fact, several children of our group were introduced to us as a shared worldview and cognitive style. idiots or imbeciles, one still resides in a state First, there are the sheer numbers of peo- school for the feebleminded, and two had been ple who are now either classified as autis- previously considered as schizophrenic” (242). tic or who self-identify as autistic. Second, Of the eleven children in Kanner’s original study, there is the recent addition to the ranks of only two achieved any degree of independence or self-sufficiency (Kanner 1971). The rest spent the autistic of large numbers of people with their lives in large institutions, with the extremely relatively good linguistic, communication, poor outcomes typical for people with autism in and intellectual skills. These are among the this era: “One cannot help but gain the impres- first generation of people with autism to be sion that State Hospital admission was tanta- able to represent themselves effectively in mount to a life sentence, with evanescence of the astounding facts of rote memory, abandon- all of the artistic and popular media. Third, ment of the earlier pathological yet active strug- there is the Internet with its vast capacity gle for the maintenance of sameness, and loss for the formation of social networks, cru- of the interest in objects added to the basically cial for a group that has, by its very nature, poor relation to people—in other words, a total difficulties with conventional social relat- retreat to near-nothingness. These children were entered in institutions in which they were herded edness and communication. Finally, there together with severely retarded coevals or kept in is the emergence of the disability rights places in which they were housed with psychotic movement, the field of Disability Studies, adults; two were eventually transferred from the and the new movement for “neurodiver- former to the latter because of their advancing sity” that draws so extensively on both. age” (Kanner 1971, 144). For a cultural history of “feeblemindedness” and “mental retardation,” Autism may remain as a serious psychiat- see Trent 1994. ric condition, and it may continue to seem 3. Similar problems and contingencies of to require medical intervention directed classification affect the natural sciences, too. toward normalization and possible cure. Biologists, for example, grapple with what they But for a new generation of people with call “the species problem,” their ongoing and contentious attempts to carve the world of autism, it is not about what they can do biological organisms into meaningful groups. despite autism (not about overcoming), See Mayr 1988, Hull 1989, and Ghiselin 1992. but about what autism enables them to 4. This history of autism diagnoses is traced in 476 | JOSEPH N. STRAUS

Grinker 2007. For vigorous critique of the DSM and anxiety disorders are more likely to be as more a pragmatic, social document than a represented positively than schizophrenia (so- scientific one—it functions primarily to provide called), other psychoses, and mental retarda tion. stable, consistently identifiable populations for (Davis 2005, 530–31). On cognitive disability researchers to study, drug companies to medicate, and problem of narration, see Bérubé 2005. On and insurance companies to reimburse—see narratives of autism generally, see Murray 2008. Kutchins and Kirk 1997 and Lewis 2006. 8. Three important recent studies both epitomize 5. The remarkable growth of the autism popula- and encourage a shift from thinking about tion—often described as an “epidemic”—can autism as a psychiatric illness to thinking about be explained entirely by the equally remarkable it as a social and cultural phenomenon: Nadeson relaxation and expansion of diagnostic criteria, 2005, Osteen 2008a, and Murray 2008. together with increased public awareness of 9. Bettleheim was an influential public intellectual autism through the popular media and more of his time, speaking and writing widely on vigorous case finding by educational and mental the subject of autism, on which he was the health professionals (Gernsbacher 2005; Grinker universally acknowledged expert. His best- 2007). known publication, Bettelheim 1967, describes 6. Garland-Thomson 2004, 779–80: “This logic has his experiences with children he treated at produced conflicting, yet complementary, sets of his “Orthogenic School” at the University of practices and ideologies that American culture Chicago. The falsehood of Bettelheim’s claims directs at what we think of broadly as disability. about his life and his work has been widely Such thinking draws a sharp distinction between documented—see Severson 2008 and Schreib- disabled bodies imagined as redeemable and man 2005. Bettelheim borrowed the term others considered disposable. One approach “refrigerator mother” from Kanner, who related would rehabilitate disabled bodies; the other autism to “emotional frigidity in the typical would eliminate them. I am positing the cultural autistic family” and “almost total absence of logic of euthanasia broadly, not simply as ending emotional warmth in child rearing” (Eisenberg a life for reasons of ‘‘mercy’’ or eliminating a and Kanner 1958, 8, 9), attributed autism to a group targeted as inferior or flawed—such as “genuine lack of maternal warmth” (Kanner 1949), people with spina bifida or ‘‘mental retardation’’— and described the mothers of autistic children as but as an umbrella concept, a mode of thought “just happening to defrost enough to produce a manifest in particular notions of choice, control, child” (quoted in Time Magazine 25 July 1960). He happiness, and suffering that underpin a wide later repudiated this notion in a speech in 1969 range of practices and perceptions. Our culture to the newly formed National Society for Autistic encodes the logic of euthanasia in its celebration Children (now the Autism Society of America): of concepts such as curing, repairing, or “Herewith I especially acquit you people as improving disabled bodies through procedures parents” (quoted in Park 2001, 11). as diverse as reconstructive and aesthetic surgery, 10. For summary and critique of all three, see medication, technology, gene therapy, and faith Nadeson 2005, 114–34. healing. At the same time, this logic supports 11. See Frith and Happé 1999, Frith 2003, and Happé eradicating disabled bodies through practices 2005. Like the “theory of mind” and “executive directed at individuals—such as assisted suicide, function” theories discussed below, the “weak mercy killing, and withholding nourishment— central coherence” theory remains controversial and those directed at certain groups deemed due to its lack of demonstrable neurological or inferior—such as selective abortion, sterilization, biological basis (see Schreibman 2005). euthanasia, eugenics, and institutionalization.” 12. According to Uta Frith, the principal proponent 7. In an assessment of the state of Disability Studies of this theory, “We have now enough evidence to in 2005, Lennard Davis observes, “The area of formulate a hypothesis about the nature of the cognitive and affective dis abilities is only just intellectual dysfunction in autism. In the normal beginning to see the light of day. . . . The fact cognitive system there is a built-in property to that academics are high-functioning people form coherence over as wide a range of stimuli as without, for the most part, serious cognitive possible, and to generalize over as wide a range of disabilities has presented a kind of barrier to the contexts as possible. It is this drive that results in construction of an autonomous subjecthood for grand systems of thought, and it is this capacity people with cognitive disabilities. Furthermore, for coherence that is diminished in children with there is a pecking order for affective disorders, so autism. As a result, their information-processing that obsessive-compulsive disorder, depression, systems, like their very beings, are characterized AUTISM AS CULTURE | 477

by detachment. Detachment, as a technical with both “classic high-functioning autism” and term, refers to a quality of thought. It could be Asperger syndrome] and suggests that it might due either to a lack of global coherence or to a be a primary deficit of autism” (1099). See also resistance to such coherence” (Frith 2003, 160). Ozonoff 2005 and the essays in Russell 1997. 13. Frith 2003, Baron-Cohen 1993, 1997, 2001a, 16. “Asperger syndrome is a severe and chronic 2001b, 2004. The offensive term “mindblindness” developmental disorder closely related to is sometimes used to name this cognitive deficit. autistic disorder and pervasive developmental “Theory of mind” has encountered significant disorder not otherwise specified, and, together, resistance in the literature. On its absence of these disorders comprise a continuum referred biological basis, see Schreibman 2005. On its to as the autism spectrum disorders. Having refutation by the presence of numerous first- autism as the paradigmatic and anchoring person accounts by autistic authors, replete with disorder in this diagnostic category, the ASDs representations of their own mental states and more generally are characterized by marked the mental states of others, see McGeer 2004. For and enduring impairments within the domains a critique from within the autism community, of social interaction, communication, play and see Nazeer 2006, esp. 68–75. imagination, and a restricted range of behaviors 14. According to Simon Baron-Cohen, the princi- or interests” (Klin 2005, 88). pal proponent of this theory, “A theory of mind 17. The metaphors around autism comprise what remains one of the quintessential abilities that Roy Porter calls an “analogy-based explanatory makes us human. By theory of mind we mean system.” He is speaking of the humors (blood, being able to infer the full range of mental states choler, phlegm, and melancholy), among the (beliefs, desires, intentions, imagination, emo- earliest medicalized attempts to understand tions, etc.) that cause action. In brief, having a madness, but his observation extends to current theory of mind is to be able to reflect on the con- theories of autism as well: “Analogy-based tents of one’s own and other’s minds. Difficulty explanatory systems of this kind were not just in understanding other minds is a core cogni- plausible but indispensable so long as science tive feature of autism spectrum conditions. The had little direct access to what went on beneath theory of mind difficulties seem to be universal the skin or in the head” (Porter 2002, 40). among such individuals” (Baron-Cohen 2001b, 18. “The real potential value of genetic research in 3). Baron-Cohen’s clear implication is that the autism lies in the probability that it will provide lack of a theory of mind renders people with invaluable leads for biological studies that will autism less than fully human. succeed eventually in identifying the neural basis 15. According to Ozonoff 1991, “Executive function of autism. Identification of the susceptibility is defined as the ability to maintain an appro- genes will not, of course, do that on its own. priate problem-solving set for attainment of a Genes code for proteins and not for psychiatric future goal; it includes behaviors such as plan- disorders or behaviors. Many areas of science will ning, impulse control, inhibition of prepotent be needed in delineating the indirect pathways but irrelevant responses, set maintenance, leading from susceptibility genes through effects organized search, and flexibility of thought and on proteins and protein products, through action. Some features of autism are reminiscent physiological and neurochemical processes, and of executive function deficits. The behavior of ultimately to the proximal pathway that leads to autistic people often appears rigid and inflex- the syndrome of autism” (Rutter 2005, 443). ible: many autistic children become extremely 19. Anderson 2005, 464: “On surveying the field of distressed over trivial changes in the environ- neurochemical research in autism, it is notable ment and insist on following routines in precise how few replicated differences have been found detail. They are often perseverative, focusing on between autistic and normal subjects.” Rutter one narrow interest or repetitively engaging in 2005, 443–44: “At present, the clinical payoff from one stereotyped behavior. Their cognition often genetic research has been quite modest and it seems to lack executive functions; autistic indi- remains to be seen just what it will deliver.” viduals do not appear future-oriented, do not 20. Hacking 1998 identifies a group of what he calls anticipate long-term consequences of behavior “transient mental illnesses,” by which he refers well, and have great difficulty self-reflecting and to “an illness that appears in a time, in a place, self-monitoring. They frequently appear impul- and later fades away” (1). He adduces hysteria as sive, as if unable to delay or inhibit responses one such transient illness and devotes much of (1083). . . . The universality of executive function the book to “fugue” as another. See also Hacking deficits in the present sample [including subjects 1999, which identifies transient mental illnesses, 478 | JOSEPH N. STRAUS

including hysteria and anorexia, as ones that uniform, biological essence shared by all people “show up only at some times and some places, labeled as “autistic,” I do not reject the idea that for reasons which we can only suppose are biological phenomena contribute to the expres- connected with the culture of those times and sion of “autistic” symptoms. I believe we need to places” (100). It’s not that real people don’t live, explore how various institutional relationships, and possibly suffer, with real symptoms; rather, expert authorities, and bodies of knowledge have that these disease entities are provisional and sought to represent, divide, understand, and act contingent ways of grouping and labeling them. on biologically based, but socially shaped and 21. Volkmar 2005, 6: “Today there is broad agreement expressed, behavioral and cognitive differences that autism and associated disorders represent such as autism. . . . In our everyday thinking and the behavioral manifestations of underlying communication, most of us visualize disease disfunctions in the functioning of the central as either caused by a scientifically discernable nervous system, and that sustained educational agent such as a virus or bacterium (e.g., AIDS or and behavioral interventions are useful and meningitis) or as emanating from a detectable, constitute the core of treatment.” Schreibman localized bodily dysfunction (e.g., heart disease 2005, 133: “Few people would argue with the or diabetes). The disease-causing agent or dis- statement that today the treatment of choice eased bodily system is seen as objective, available is that based on the behavioral model. In fact, to visual representation (through a microscope, behavioral treatment is the only treatment electromagnetic scan, or scientific diagram), and that has been empirically demonstrated to be ultimately treatable (even if a “cure” eludes cur- effective for children with autism.” rent medical understanding). In effect, disease 22. For a discussion of genetic testing from a is represented in our everyday understanding as Disability Studies point of view, see Wilson available to empirical identification, interpreta- 2006, Hubbard 2006, Saxton 2006, and Garland- tion, and intervention. . . . But autism is probably Thomson 2004. a heterogeneous condition that is more properly 23. Geneticists are already eying psychiatric called a syndrome than a disease. Moreover, the diagnoses for the possibility of significant causal pathways engendering autistic symptoms reconfiguration of the categories on a genetic are most likely multiple and contingent on level basis. “One area that might benefit from genetic upon level of loosely coupled, synergistic, bio- disease classification is psychiatry. Because of logical and social systems” (79–80). the difficulty of measuring the brain, psychiatric 25. Similarly, see Hacking 1998 and 1999. diagnoses are still mainly based on symptoms. 26. “The long-dominant biomedical model provides The Diagnostic and Statistical Manual of Mental [a] comprehensive and dubious grand narrative: Disorders contains descriptions of conditions as a theory that reduces every illness to a biological diverse as acute stress disorder and voyeurism. mechanism of cause and effect. By contrast, my Scientists have found that certain genes appear argument—that postmodern illness is defined by to be associated with both schizophrenia and an awareness of the elaborate interconnections bipolar disorder. Those links, and the fact between biology and culture—does not aspire to that some drugs work for both diseases, have the status of a grand narrative. It does not seek to prompted a debate over whether they are truly explain every affliction on the planet, but rather distinct disorders. ‘The way we categorize these to describe a new, transitional, and unfinished into two separate entities is almost certainly not understanding of illness that typifies numerous correct,’ said Dr. Wade H. Berretini, a professor industrial societies during the second half of the of psychiatry at the University of Pennsylvania” twentieth century” (Morris 1998, 11). Similarly, (Andrew Pollack, “Redefining Disease, Genes see Nadeson 2008: “In short, disease, disability, and All,” New York Times May 6, 2008). and bodily difference are at once material 24. This conclusion—that autism may be produc- and symbolic, both socially constructed and tively thought of as a cultural phenomenon materially inscribed. . . . The biological and the rather than a medical pathology—tracks that of cultural [are] mutually constitutive, inseparable Nadeson 2008, which is worth quoting at some in their constitution of personhood” (81). length. “This genealogy questions whether 27. Linton 1998, 11–12: “The medicalization of autism is a homogeneous, pathological condi- disability casts human variation as deviance from tion that can be exhaustively known—or trans- the norm, as pathological condition, as deficit, parently represented—by scientists and their and, significantly, as an individual burden and representational technologies (e.g., MRIs). personal tragedy. Society, in agreeing to assign Although I deconstruct the idea of autism as a medical meaning to disability, colludes to keep AUTISM AS CULTURE | 479

the issue within the purview of the medical coherence,” see Mills 2008 and Belmonte 2008. establishment, to keep it a personal matter 33. This preference involves recasting Kanner’s and ‘treat’ the condition and the person with “sameness, ” deficiencies in “executive function,” the condition rather than ‘treating’ the social and the emphasis in the DSM-IV on “restricted, processes and policies that construct disabled repetitive, and stereotyped patterns of behavior, people’s lives. The disability studies’ and interests, and activities.” disability rights movement’s position is critical 34. There is an extensive literature on autistic of the domination of the medical definition savants, formerly known as “idiot savants.” While and views it as a major stumbling block to the offensiveness of the first word in that earlier the reinterpretation of disability as a political label is clear enough, even the term “savant” category and to the social changes that could itself is problematic. First, it entails an invidious follow such a shift.” Similarly, see Longmore and comparison between the narrow ability (the Umansky 2001. “splinter skill”) and the larger disability—it might 28. Garland-Thomson 1997, 7. Similarly, see be better to see the variety of skills possessed Longmore 2003. by an individual person in the same way we 29. Siebers 2008, 3–4: “While seen historically as a see the variety of skills possessed by groups matter for medical intervention, disability has of people: aspects of naturally occurring and been described more recently in disability stud- desirable diversity. Second, it carries an impulse ies as a minority identity that must be addressed toward “enfreakment”: the special skill provokes not as personal misfortune or individual defect amazement and wonder, and also a sense of but as the product of a disabling social and built irreducible otherness (the skill seems almost environment. Tired of discrimination and claim- inhuman). Third, the “autistic savant” comes to ing disability as a positive identity, people with play the same role with respect to the population disabilities insist on the pertinence of disability of autistic people that the “supercrip” does with to the human condition, on the value of disabil- respect to disabled people: it minimizes the ity as a form of diversity, and on the power of challenges that most people with disabilities disability as a critical concept for thinking about face and implies an additional burden, possibly human identity in general.” a moral burden, of failing to measure up to an 30. Similarly, see Biklen 2005, 65: “I argue that unrealistic standard. autism is best understood as a social and 35. The idea of “private meaning” resonates with cultural construction, that the particular aspects Kanner’s “aloneness,” with deficiencies in of autism’s construction are complex and “theory of mind,” and with the deficits in social multilayered, and that people classified autistic interaction and communication described in the as well as those around them, including the DSM. autism field, have choices to make concerning 36. Grandin 1995, 173. which constructions to privilege. Autism is not a 37. A very partial list would include Grandin 1986 and given condition or set of realities—at least, it is Williams 1992 (these are the first two published not ‘given’ or ‘real’ on its own. Rather, autism is autistic memoirs), as well as Gerland 1997, Willey and will be, in part, what any of us make it.” 1999, Lawson 2000, Miller 2003, Shore 2003, 31. In order to deflect any charge of essentialism, I Prince-Hughes 2004, Ariel 2006, Tammet 2006, want to make clear that I am not suggesting that Nazeer 2006, and Robison 2007. For a general all autistic people approach the world in the ways discussion of autism memoirs, see Cumberland I describe, or that anyone who approaches the 2008. world in these ways must be autistic. People with 38. Bérubé 2000. Grandin 1986 has a co-author autism comprise a diverse community—there are (Margaret M. Scariano) and a foreword from many ways to be autistic—and the qualities that Bernard Rimland, at the time a leading figure in I am describing as autistic are also present, in autism research—he also wrote the authenticat- varying degrees, in the neurotypical population ing foreword for Williams 1992. Grandin 1995 has as well. The notion of an autistic cognitive style a foreword from Oliver Sacks. Publishers of more functions somewhat in the manner of a notion recent autistic autobiographies have been more like “Jewish humor”—a provisional point of willing to allow their autistic authors to stand on departure for inquiry and, possibly, a useful their own. tool in establishing a group identity for strategic 39. Rose 2008, 47: “I contend, therefore, that the political purposes. collection of texts that comprise the corpus of 32. For more on the recasting of the deficit of “weak autistic life narratives is now such that it enacts central coherence” as the difference of “local a community response to the individuation 480 | JOSEPH N. STRAUS

of impairment, as each text enacts Couser’s the solution to the perplexing riddle of [Glenn] antipathological impulse to write back against Gould’s existence and is therefore arguably the the more restrictive discursive limits of being fundamental story of his life. It leads us to a diagnosed as autistic.” The reference is to Couser coherent understanding of both the man and 1997. the musician. Not only does it gather all his 40. Couser 1997. See also Frank 1995 and Hawkins strange behavioral and lifestyle eccentricities 1999. On conversion narratives and autism, see into a unified gestalt, it also furnishes intriguing Fisher 2008. On autism narratives generally, see insights into important aspects of his music- Murray 2008. making” (134). Autism remains a controversial 41. Grinker 2007, 13: “The process of understanding issue in Gould studies. Ostwald 1997 is a autism itself parallels the work that psychobiography that raises but does not pursue anthropologists do, since the minds of people the issue of autism. Bazzana 2004 discounts with autism are sometimes as hard to understand autism, preferring instead a mixed account based as foreign cultures.” on anxiety, depression, hypochondria, and “a 42. Park 1982 and Park 2001. variety of obsessional, schizoid, and narcissistic 43. On the network of private meanings that traits” ( 370). permeate Jessica Park’s life and artistic work, see 49. According to Bazzana 1997, “As a general rule, Park 2001. See also Chew 2008. Gould preferred articulation that can best be 44. Wiltshire’s paintings can be seen on the Web and described as non-legato or detaché . . . His desire in four books: Wiltshire 1987, 1989, 1991, and for clarity, so basic to his musical personality, 1993. extended to his rendering of phrases and even 45. Sacks 1995. See discussion in Osteen 2008b, individual notes . . . Detaché was the norm for 12–14. Gould regardless of tempo” (215–16). 46. Absolute pitch is the ability to name a pitch or pro- 50. Sandahl and Auslander 2005: “Part of sociology’s duce a pitch identified by name without using an legacy to performance studies is the idea that external source. For a survey of work on absolute we do not just live our “real life” identities, we pitch (AP), including the autism connection, see perform them . . . Goffman argues that who we are Ward 1999. Mottron et al. 1999 suggests “a causal socially is bound up with who we are perceived relationship between AP and autism,” which to be by those around us (our audience) and they relate to an “atypical tendency to focus on that we behave as actors in order to control the stimulus rather than its context” (486). See the impressions we make on others. This also Brown et al. 2003: “Reports of a relatively understanding of everyday behavior emphasizes high prevalence of absolute pitch (AP) in autistic that identity does not simply reside in individuals disorder suggest that AP is associated with some but is the product of social interactions among of the distinctive cognitive and social charac- individuals. This perspective is congruent with teristics seen in autism spectrum disorders. . . . the view of disability as something that is not Piecemeal information processing, of which AP an intrinsic characteristic of certain bodies but is an extreme and rare example, is characteris- a construct produced through the interaction tic of autism and may be associated as well with of those bodies with socially based norms subclinical variants in language and behavior. that frame the way those bodies are generally We speculate that the gene or genes that under- perceived” (215). lie AP may be among the genes that contribute 51. A similar list of fictional characters from the pre- to autism. . . . Inasmuch as AP possessors can autism era who have been placed on the autism identify the individual pitches in a melody, AP spectrum would include Bartelby (Garland- is an extreme example of piecemeal information Thomson 2004 and Murray 2008); Jane Eyre processing. . . . The link between autism and AP (Rodas 2008); Sherlock Holmes (Fitzgerald 2004); points to other neuropsychological processes and Barnaby Rudge (Grove 1987 and Murray that might underlie AP. A number of the special 2008). abilities found in autistic savants—prodigious 52. McDonagh 2008: “My resistance to reading memory and AP among them—can be charac- historical figures or literary characters as autistic terized as high-fidelity information processing. or aspergian is based on one of the fundamental . . .” (166). precepts of this paper: that autism, should it 47. Headlam 2006 makes a similar argument. turn out to be a single pathology with an organic 48. Maloney 2006 persuasively places Gould on the cause and thus ‘real,’is also perceived within autism spectrum through careful study of the a social dynamic, and our recognition and extensive written and video archive: “Autism is understanding of autism takes form within this AUTISM AS CULTURE | 481

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Disability, Design, and Branding: Rethinking Disability within the 21st Century Elizabeth DePoy and Stephen Gilson

SETTING THE CONTEXT interact, earn, play, and even engage in sex in virtual spaces. Reflecting on the 21st century reveals Critical to thinking and theorizing about communities which are no longer defined disability within these contemporary chron- by their geographic or even physical ological times, we challenge the intellec- boundaries. Individuals can be in several tual status quo of separate disciplines and places at one time (Bugeja, 2005), can discuss concepts such as intersectionality, increasingly participate in global events symbols, theming (Bryman, 2004; Lukas, when they happen through viewing them 2007), and constructed realities. The uncer- in action on screens that can even be car- tainties and relativism of recent intellectual ried in a pocket. Work no longer needs trends have been provocative of new think- to take place in a physical “workplace.” ing in which unlikely disciplines mingle We can create and revise our own virtual and create new opportunities for context- identities, appearances, functionality, relevant thinking and informed action. We and methods of interacting. We can shop now discuss these contemporary themes internationally from our living rooms and within disability studies. enter virtual and actual theme parks that provide us with familiarity and comfort. POSTMODERNISM AND POST- We can communicate with great imme- POSTMODERNISM WITHIN diacy across the globe in languages that DISABILITY STUDIES we may not even speak. We text message, e-mail, log on, blog, podcast, and become Over the past few decades, postmodern actors on virtual stages of our own films. theories that emerged in opposition to We can access libraries, museums, across modernism caught the intellectual gaze of the globe from our homes and can meet many disability studies theorists. Because face to face even if we are physically sit- postmodernism challenged the tyranny uated in different continents. Time is of normalcy (DePoy & Gilson, 2009) post- no longer simply a linear chronological modernism provided both power and measurement. We live among people who comfort in denuding grand narratives originated from distant geographic loca- which disparage bodies and experiences tions throughout the globe. And we can that do not fit within + two standard devia- uncouple ourselves from our bodies as we tions from the mean on measures based 486 | ELIZABETH DEPOY AND STEPHEN GILSON

in traditional longitudinal and behavioral ability. Similarly the neurodiversity litera- theories. While postmodernism opened ture allows for the reintroduction of biol- a portal through which disability studies ogy into explanations of disability while could oppose the medicalized 20th century advancing progressive views in so doing. notion of disability, its carnivalesque gaze As example, using this postpostmodern and focus on the nonsense of language and view, diagnoses of brain disorder such as symbol (Baudrillard, 1995) have left too bipolar disorder, schizophrenia, autism, many vacancies when looking to theory and so forth are reframed as diverse rather to inform human rights and equality of than as pathological (Antonetta, 2007; opportunity for groups which have histori- Seidel, 2004–2009). cally been excluded, disenfranchised, or Bolstered by post-postmodern schol- exploited for profit. arship, our recent work proposing two Despite its limitations, by dismantling frameworks, “Disability as Disjuncture” narrative and theorizing its political ambi- and “Disability as Logo” have the poten- guity and even duplicity, post-modernism tial to be theoretically robust in informing has left important intellectual rubble to innovative contemporary responses aimed be refitted into new theoretical configura- at equalizing human rights (DePoy & Gil- tions. What has appealed to us about post- son, 2006; Gilson & DePoy, 2007; 2008). We modernism and its successors is simul- turn to these now. taneous acceptance of diverse bodies of evidence beyond traditional positivist DISABILITY AS DISJUNCTURE designs but including them as well, and its eschewal of prescribed world-views. These Building on seminal works over the past elements can support new theorizing that decade, Disjuncture Theory indicts the does contemporary-relevant intellectual interstices between environment and body and applied work. What we mean by work as the locus for disability. As early as 1999, is the intellectual, analytical and knowl- National Institute on Disability and Reha- edge base to inform understanding and bilitation Research published the follow- equality of human rights. ing explanation: “disability is a product of Post-post modernist theorists are min- the interaction between characteristics of ing the disparate gems in the debris that the the individual (e.g., conditions or impair- postmodernists left as they interrogated ments, functional status, or personal and and unpacked enlightenment thinking. social qualities) and the characteristics of The post-postmodern contemporary genre the natural, built, cultural, and social envi- for us integrates the “best of all explanatory ronments” (NIDRR, 2007). This synthetic worlds” by synthesizing the advantages of explanation positions disability as mobile diverse fields. Post-postmodernism has and context embedded but fails to identify gifted disability explorations and explana- the point or range at which the “interactive tions with both intellectual and utilitarian product” moves from ability to disability. richness. Consider for example the meta- Within NIDRR’s viewpoint, the atypical phoric propinquity of the designer dis- body remains the habitat of disability as ability items, orthopedic shoes, queerness, depicted in the parenthetical clarifier in and evolutionary theory (Fries, 2007). Fries the definition above. elucidates stunning relationships among Davis (2002) also was influential in look- his own travels and phylogenic theories ing at disability beyond the “body or envi- of natural selection, legitimately reinte- ronment” binary. Proceeding on his posi- grating science into discussions of dis- tion that disability is an unstable category DISABILITY, DESIGN, AND BRANDING | 487 in need of reconceptualization, Davis pos- DESIGN ited the revision of the category to include every “body” regardless of its current Design is a complex construct which has status as disabled or not. This important been increasingly used to describe abstract viewpoint foregrounded the limitations of and concrete human intention and activ- outdated models of identity politics that ity, and to name a property of virtual, phys- crafted policy responses for sub-popula- ical, and even abstract phenomena. The tions even with the recognition that eve- Appendix presents representative lexical ryone can join the membership roster of definitions of design. disability. Similar to NIDRR’s definition, As reflected in the definitions and con- Davis retained the body as the entry point sistent with post-postmodern thought, into the disability club, referring to Chris- design is purposive and may refer to topher Reeve as exemplary of how quickly decoration, plan, fashion, functional- one can change embodied status. ity, and influence. What is evident in the This foundational work precedes and diverse definitions is the broad scope shapes disjuncture as one of many explana- of phenomena to which design applies, tions that could form a solid axiological as including but not limited to the activities well as praxis foundation for legitimate dis- of conceptualizing, planning, creating, ability determination and response. Unlike and claiming credit for ones ideas, prod- NIDRR and Davis, however, we do not look ucts, and entities as well as the inherent to the body for the initial entrance into dis- intentional or patterned characteristics ability. Rather, Disjuncture Theory locates of bodies, spaces, and ideas (Margolin, disability at the intersection of bodies and 2002; Munari, Eames, Eames, Guixe, & Bey, environments. Through this lens, disabil- 2003). ity is an ill-fit between embodied experi- Despite the ubiquitous and diverse use ence and diverse environments in which of the term, of particular note is the post- bodies act, emote, think, sense, commu- postmodern commonality in all defini- nicate, and broadly experience. Disjunc- tions of design as purposive and inten- ture Theory therefore recognizes body and tional. That is to say, design is not frivolous environment as equal vestibules leading but rather is cultural iconography which is into the category of disability. Disjuncture powerful, political, and is both shaped by is a continuum rather than a binary, with and explanatory of notions of standards, ascending degrees of separation between acceptability, membership, and desirabil- environment and body denoting more ity (Foster, 2003; Munari et al., 2003). Pur- severe disjuncture and visa versa. posive design therefore has the potential Full juncture is the non-example of dis- to shape constraint, maintain the status ability and thus is the desirable that drives quo, or effect profound change. our theorizing and application to praxis. It is therefore curious that built and vir- In this state, embodied presence fits well tual environmental and product design within environmental features. standards are constructed around Enlight- Curiously, our initial thinking about enment ideals of the human body, its bal- disjuncture emerged from a conversa- ance, proportion, emphasis, rhythm, and tion in a disability studies class about unity (DePoy & Gilson, 2008; Margolin, design, beginning our foray into design 2002). This practice creates disjuncture as an important element of disability as and thus significant disability for numer- well as a critical consideration in healing ous bodies, including many that fit within disjuncture. the typical ranges. 488 | ELIZABETH DEPOY AND STEPHEN GILSON

But the built environment is not the only Because symbolism and dynamism both target of design. Bodies themselves are inhere in branding, Holt (2004) has sug- “designed” through medical measurement gested the term cultural branding, which and practice, fashion, fitness, education, elevates brands to the status of icon, and counseling, and so forth. As example, con- marker of identity and idea. While Holt’s sider the recent book by Little and McGuff term is relatively new, the notion of brand- (2008) entitled Body by Science. This title ing as explanatory of one’s cultural, social, and the contents propose the role of empir- and individual identity and comparative ically supported strategies to “design” the social worth was originated in the early ideal body shape, tone, and even energy and mid 20th century by thinkers such as level for anyone who is willing. This trend Horkheimer, Adorono, Noerr, and Jepg- is particularly relevant to the 21st century cott (2002) and McKluhan and Fiore (2005). in which design has been enthroned not Although divergent in ontology and domain only as an aesthetic but also as cultural of concern, these scholars were seminal icon, logo, empirical method, and signifier in introducing branding as an identity- of value. This point provides the segue to inscribing and projecting entity. That is to branding as simultaneously instigative of say, through the process of choosing and disability containment and liberation from adopting cultural iconography in the form stigma. of products, fashions, food, music, and so forth one ostensibly defines the self and displays value to others (Holt, 2004). DISABILITY AS LOGO: BRANDING While grand narrative suggests that In contemporary western economies, brands can be chosen to depict and publi- design is closely related to branding. Given cally display a preferred identity (McLuhan the emergence of branding from the fields & Fiore, 2005) we do not necessarily agree of marketing and advertising, brands with this principle as universal. Rather within this constrained conceptual frame- through post-postmodern analysis, the work are defined as the purposive design purposive nature of design and branding and ascription of logos to a product for can be revealed as manipulating individu- the intent of public recognition, addition als and groups into believing that they can of value, and consumption, Of particu- and do autonomously choose their identi- lar importance to disability explanations ties when they cannot. The conceptual por- within the scaffold of branding is the con- tal of design and branding viewed through struct of value-added. Interpreted broadly, a teleological lens splays open the purpo- the addition of value does not necessarily sive, political, and profit-driven nature of imply an increase or elevation, but denotes embodied labeling, identity formation and the cultural inscription of value that can recognition, stereotyping, and responses span the continuum from extremely pejo- that explain disability and give meaning to rative to most desirable. it both as a category and as a fiscally produc- More recently, scholars have enlarged tive market. The explanatory importance of the definitional scope of branding as a criti- this conceptual framework lies in the proc- cal culturally embedded symbolic set that esses and purposes of design and branding commodifies and reciprocally represents as deliberate, complex, and potentially able and shapes value, ideas, and identities. to manipulate meaning of self, others, and Brands are design stories that unfurl and categories (Licht & O’Rourke, 2007). The take on meaning as they are articulated and result of branding, which can span exploi- shared by multiple authors, so to speak. tation through liberation, is dependent on DISABILITY, DESIGN, AND BRANDING | 489 depth of understanding as well as skill in phenomenon as the disability industry putting this market strategy to work. and more recently, building on the work In previous work, we have examined of Lukas (2007) and Bryman (2004), the how design of visuals, such as objects, disability park (DePoy & Gilson, 2008) in brand those who use disability specific which economic survival and profit drive products as disabled (DePoy & Gilson, design of themed or branded spaces which in press). However, design and branding too frequently trump the goals of facilitat- reach out more expansively and abstractly ing meaningful, full participation in com- in explaining disability populations and munity, work, recreation, and civic life affixing their value. Visual logos do not for people who are considered or identify have to be present in order for disability to themselves as disabled. be recognized and valuated or “branded.” Our more recent thinking asserts that Understanding disability through the pow- in the current global context, disability, erful contemporary post-post modern lens economic advantage, and value-added is particularly timely and thought pro- design not only can co-exist but must do vocative within advanced global market so in order to reveal and dismantle the dis- environments (DePoy & Gilson, in press; ability park and replace it with value added Pasquinelli, 2005). branding for diverse bodies. Policy has a In a recent presentation that we gave significant role in this design and branding at the Society for Disability Studies in effort as we now discuss. 2009, a participant remarked that marketing theory did not do explanatory justice POLICY AS DESIGNED AND to understanding disability as a cultural BRANDED DISABILITY group that experiences social discrimination and exclusion. In concert with Riley Aligned with disability products, spaces, (2006) we respectfully disagreed, suggest- and services which serve to brand those ing that in the 21st century and consistent who use and inhabit disability geographies with post-postmodern thinking, disability and parks, the very design of disability is no longer exempt from the market econ- policy as a separate entity is an exemplar omy, business, and its design and branding of abstract (non-visual) branding through processes (Adair, 2002; Pullin, 2009; Riley, segmentation. We refer to this policy seg- 2006). Rather this synthetic lens is seminal ment as disability explicit, in that policies to explaining disability as marked, circum- that exclusively target disability retain the scribed, and commodified by designated abstract of the disability park as separate. products, spaces, and abstracts that not However, disability policy is not located only brand its members but position them solely within the disability explicit world. as a target market segment ripe for com- Policy responses to disability can be located modification and economic exploitation. within identity politic policies that create However, this complex analysis reveals “special” responses for population sub- new actionable pathways to social change categories (referred to as disability-embed- as well. ded policy), or in disability implicit policies As early as 1992, Gill and then Albre- which do not name disability but design it cht, in 2001, published scholarship that as devalued and undesirable through other revealed the economic advantage derived political mechanisms such as measure- from disability by providers, profession- ment, prevention, and so forth. We are not als, product manufacturers, and so forth. suggesting that prevention of injury and DePoy and Gilson (2004) referred to this illness at any stage of human existence is 490 | ELIZABETH DEPOY AND STEPHEN GILSON

pejorative. Rather, we are urging a post- the explanatory criteria, but their lives are postmodern examination of policy such as designed in order to maintain benefits. public health strategies, particularly with We assert that separate disability poli- regard to how they design and brand the cies, which we referred to above as disabil- value of designed bodies, populations, and ity explicit policy, institutionalize disabil- behaviors and then hang valued outcomes ity explanations and the disability park by on these policy doorposts. partitioning and “logofying” abstract prin- Within disability-explicit and some ciples and language and applying them embedded policy, two major lexical divi- differentially to disabled and non-disabled sions exist: policies that guide the provi- individuals (Tregakis, 2004). As an example, sions of disability services and resources, above we noted that people who are con- such as the Social Security Disability Insur- sidered disabled are enabled by disability ance Act (SSDI) (established by the Social explicit policy to obtain often without cost, Security Amendments of 1956), in the but within the disability park, products United States, and more recently those, which are branded as “assistive technol- such as the Americans with Disabilities ogy” while non-disabled people who use Act (ADA, 1990), The ADA Amendments identical products use technology, or as Act (2008), and the UN Convention on the Seymour (2008) asserts, use items branded Rights of Persons with Disabilities that pur- as fashionable technology. Consider the port to protect and advance the civil rights need for help that is designed as part of dis- of populations that are considered or iden- ability identity in the word “assistive” and tity as legitimately disabled. the inscription of this branded concept in Building on this binary taxonomy, we the Assistive Technology Act passed in the suggest that that policy is much more com- United States in late 20th century. plex than its explicit verbiage and articu- Another consideration regarding the lated outcomes. As noted by Kymlicka (2007) sequencing of targeted and generic policy in his recent analysis of multiculturalism, was illuminated by Badinter (2006) in her global human rights policy is plagued by discussion of gender equality. She sug- two overarching problems. The first is the gested that the maintenance of “special- failure of current categorical frameworks ized rights and policies” negates their to do viable work in carving up humanity articulated aims of equality. This insidious into useful categories. Kymlicka’s assertion process occurs by surreptitious design in provides one of the foundational pillars of which recipients of resources and rights our view, as we question the legitimacy of only granted by specialized policies are so many diverse and vague explanations defined by their eligibility for protec- for disability and thus the usefulness of the tion and thus continue to be branded as category for achieving the asserted pur- victims. Those who are covered under poses of full participation. disability policy therefore are designed and The second problem identified by Kym- branded as vulnerable, in need of special- licka (2007) is the time sequence of design- ized assistance, and in the disability park ing and implementing targeted and generic that provides employment and economic policy. Applied to disability, we suggest that opportunity and advantage to provid- targeted distributive and protective legisla- ers and disability designers. Analysis of tion in itself designates and designs legiti- disability explicit and embedded policy mate disability. Those who qualify for ben- reveals it as a grand narrative, a brand of efits and protections of disability policy are designed identity policy that on the sur- not only defined as disabled if they meet face speaks of resources and equity, but in DISABILITY, DESIGN, AND BRANDING | 491 essence serves up populations identified or relevant ideas and skills to promote posi- identifying as disabled or otherwise vulner- tive social change. Referring to Kymlica’s able to the disability park and thus designs (2007) criticisms of categorization and the disability by location of service consumer timing of expanding specialized policy within the park. citizen-wide, design and branding have sig- Similarly, The UN Convention on the nificant potential to redesign and rebrand Rights of Persons with Disabilities, a dis- bodies and environments to produce good- ability-embedded policy in that other vul- ness of-fit and full juncture. nerable groups are named as well, while theoretically enacted to raise awareness APPENDIX: DEFINITIONS OF DESIGN and reduce discrimination and disadvantage experienced by populations identified • To create, fashion, execute, or construct or identifying as disabled, is often persua- according to plan: DEVISE, CONTRIVE sive in the abstract but lacks substantive (Merriam Webster, 2006–7) content. Thus it is explanatory as well. The • Means any design, logo, drawing, presence of specialized and protected pol- specification, printed matter, instruc- icy worldwide and the location of disability tions or information (as appropriate) adjacent to other groups design all of these provided by the Purchaser in relation groups as needy of legal protection rather to the Goods (http://simply-small. than as citizens with the rights and respon- com/tandc.html) sibilities afforded to typical citizens. • Design is a set of fields for prob- Both nationally and internationally, we lem-solving that uses user-centric recognize the temporary value of these approaches to understand user needs policies for redressing discrimination (as well as business, economic, envi- and exclusion, particularly in a context ronmental, social, and other require- in which population specific policies and ments) to create successful solutions resources are the predominant distribu- that solve real problems. Design is tive model. However, through a post-post- often used as a process to create real modern lens, the explicit intent of disabil- change within a system or market. ity explicit and embedded policy is open Too often, Design is defined only as for interrogation and analysis as the basis visual problem solving or communi- to advance social change and equality of cation because of the predominance opportunity in the long-term, and to move of graphic designers. (http://www. from the oxymoron of population specific nathan.com/ed/glossary/) equality to population-wide equality and • The plan or arrangement of elements in justice. a work of art. The ideal is one where the Theorizing and practice of design and assembled elements result in a unity or branding, therefore, are not only central harmony. (http://www.worldimages. but critical in framing responses that we com/art%5fglossary.php) see as promoting full juncture. We there- • Both the process and the result of fore urge disability scholars and activists structuring the elements of visual to capture and use design, branding and form; composition. (http://www.ack- market theorizing and related praxis not land.org/tours/classes/glossary.html) simply to bemoan exclusion and exploita- • A clear specification for the structure, tion from others who apply these strategies organization, appearance, etc. of a deliv- to design and maintain the disability park erable. (http://www.portfoliostep.com/ but rather to harness these contemporary- 390.1TerminologyDefinitions.htm) 492 | ELIZABETH DEPOY AND STEPHEN GILSON

• Intend or have as a purpose; “She Welfare: Vol. 1. The Profession of Social Work designed to go far in the world of busi- (pp. 267–282). Hoboken, NJ: Wiley. ness” (http://wordnet.princeton.edu/ DePoy, E., & Gilson, S.F. (2008). Designer diver- perl/webwn) sity: Moving beyond categorical branding. • A plan for arranging elements in a cer- The Journal of Comparative Social Welfare, 25, 59–70. tain way as to best accomplish a partic- DePoy, E., & Gilson, S.F. (2004). Rethinking dis- ular purpose (Eames, 1969 in Munari, ability: Principles for professional and social Eames, Guixe & Bey, 2003). change. Pacific Grove, CA: Brooks-Cole. Fitzgibbon, K. (2005). Who owns the past? New REFERENCES Brunswick, NJ: Rutgers University Press. Foster, H. (2003). Design and crime (and other Adair, V. (2002). Branded with infamy: Inscrip- diatribes). New York: Verso. tions of poverty and class in the United Fries, K. (2007). The History of my shoes and the States. Chicago, IL: The University of Chicago evolution of Darwin’s theory. Cambridge, Press. MA: Da Capo Press. Albrecht, G., Seelman, K., & Bury, M. (2001). Dis- Fussell, P. (1992). Class: A guide through the Amer- ability studies handbook. Thousand Oaks, ican status system. New York, NY: Touchstone. CA: Sage. Galician, M.L. (2004). Handbook of product Antonetta, S. (2007). A mind apart: Travels in a placement in the mass media: New strategies neurodiverse world. New York: Tarcher. in marketing theory, practice, trends, and eth- Badinter, E. (2006). Dead end feminism. Cam- ics. New York, NY: Routledge. bridge, UK: Polity Press. Gill, C. (1992, November). Who gets the profits? Baudrillard, J. (1995). Simulacra and simula- Workplace oppression devalues the disabil- tion: The body in theory: histories of cultural ity experience. Mainstream, 12, 14–17. materialism (S. F. Glaser, Trans.). Ann Arbor, Gilson, S.F., & DePoy, E. (2007). DaVinci’s ill- MI: University of Michigan Press. fated design legacy: Homogenization and Bryman, A. (2004). The Disneyization of society. standardization. International Journal of Thousand Oaks, CA: Sage. the Humanities, 4, http://www.Humanities- Bujega, M. (2005). Interpersonal divide: The Journal.com search for community in a technological age. Gilson, S.F., & DePoy, E. (2008). Explanatory New York, NY: Oxford University Press. legitimacy: A model for disability policy de- Davis, L. (2003). Bending over backwards: Dis- velopment and analysis. In I. Colby (Ed.). So- ability dismodernism and other difficult po- cial Work Practice and Social Policy and Policy sitions. New York, NY: New York University Practice. Hoboken, NJ: John Wiley & Sons. Press. Gilson, S.F., & DePoy, E. (2005/2006). Reinvent- DePoy, E., & Gilson, S.F. (in press). Disability by ing atypical bodies in art, literature and tech- design. Review of Disability Studies. nology. International Journal of Technology, DePoy, E., & Gilson, S.F. (2008–2009, Winter). Knowledge and Society, 3, 7, http://www. Social work practice with disability: Moving Technology-Journal.com. from the perpetuation of a client cat- Holt, D. B. (2004). How brands become icons: The egory to human rights and social jus- principles of cultural branding. Cambridge, tice. Journal of Social Work Values and MA: Harvard Business School Press. Ethics, 5(3). Access: http://www.social- Horkheimer, M., Adorono, T. Noerr, G.S., & Je- worker.com.avoserv.library.fordham.edu/ pgcott, E. (2002). Dialectic of enlightenment. jswve/content/view/103/66/. Palo Alto, CA: Stanford University Press. DePoy, E., & Gilson S. (2008). Healing the dis- Kymlicka, W (2007). Multicultural odysseys. juncture: Social work disability practice. Oxford, UK: Oxford University Press. In K.M. Sowers & C.N. Dulmus (Series Edi- Lefebvre, H. (1991). The production of space. tors) & B.W. White (Vol. Ed.), Comprehen- Oxford, UK: Blackwell. sive Handbook of Social Work and Social Licht, A. & O’Rourke, J. (2007). Sound art: Beyond DISABILITY, DESIGN, AND BRANDING | 493

music, between categories. New York, NY: Pullin, G. (2009). Design meets disability. Bos- Rizzoli. ton, MA: MIT Press. Little, J., & McDuff, D. (2008). Body by science. Riley, C. (2006). Disability and business. Leb- New York, NY: McGraw Hill. anon, NH: University of New England Lukas, S. (2007). The themed space: Locating cul- Press. ture, nation, and self. Lexington, MA: Lexing- Salvendy, G. (2006). Handbook of human factors ton Books. and ergonomics. Hoboken, NJ: Wiley. Margolin, V. (2002). The politics of the artificial: Scott , A.O. (2008). Metropolis now. NY Times Essays on design and design studies. Chicago, Magazine Section, June 9. IL: University of Chicago Press. Seidel, K. (2004–2009). Neurodiversity Weblog. McLuhan, M. & Fiore, Q. (2005). The medium is Retrieved July 4, 2009, from Neurodiversity. the massage. New York, NY: Ginko Press. com: http://www.neurodiversity.com/main. Merriam Webster, Inc. (2009). Merriam Web- html ster Online. Retrieved January 4, 2009, from Seymour, S. (2008). Fashionable technology: The http://www.merriam-webster.com/ intersection of design, fashion, science, and Munari, B., Eames, C, Eames, R., Guixe, M., & technology. New York: Springer. Bey, J. (2003). Bright minds, beautiful ideas. Tregaskis, C. (2004). Constructions of disabil- Amsterdam, NE: Bis. ity: researching the interface between disabled Nussbaum, M. (2007). Frontiers of justice. New and nondisabled people. London, UK: York, NY: Belnap. Routledge. Pasquinelli, M, (2005). An Assault on neuro- U.S. Department of Education, Office of Spe- space. Accessed: http://info.interactivist. cial Education and Rehabilitative Services, net/node/4531 National Institute on Disability and Reha- Phillips, S. (2008). Out from under: Disabil- bilitation Research. (2007). NIDRR Long ity, history and things to remember {zigzag} Range Plan For Fiscal Years 2005–09: Execu- Dressing. Accessed: http://www.rom.on.ca/ tive Summary. Accessed May 25, 2010 from media/podcasts/out%5ffrom%5funder%5fa http://www2.ed.gov/rschstat/research/ udio.php?id=5 …/nidrr-lrp-05-09-exec-summ.pdf PART VII

Fiction, Memoir, and Poetry CHAPTER 36

Stones in My Pockets, Stones in My Heart Eli Clare

Gender reaches into disability; disability cut the curls off; she thinks they’re pretty. wraps around class; class strains against All morning I have sawed 2 × 12 girders to abuse; abuse snarls into sexuality; sexual- length, helped my father pound them into ity folds on top of race . . . everything finally place. I come home from the building site piling into a single human body. To write to pick up a crowbar and eat lunch. A ham- about any aspect of identity, any aspect of mer hangs from my hammer loop; a util- the body, means writing about this entire ity knife rides in my bib pocket. I ask my maze. This I know, and yet the question mother, “Am I feminine?” My memory stops remains: where to start? Maybe with my here. I do not remember what possessed white skin, stubbly red hair, left ear pierced, me to ask that question, what I wanted to shoulders set slightly off center, left riding know, what my mother answered. higher than right, hands tremoring, traced with veins, legs well-muscled. Or with me * * * in the mirror, dressing to go out, knotting my tie, slipping into my blazer, curve of hip Feminine. Female. Girl. I watched my and breast vanishing beneath my clothes. younger sister spend hours in the bathroom Or possibly with the memory of how my with a curling iron, my mother with her nail body felt swimming in the river, chinook file and eyebrow tweezers. I watched and fingerlings nibbling at my toes. There are listened to the girls in my school talk about a million ways to start, but how do I reach boys, go behind the equipment shed to kiss beneath the skin? them, later whisper in algebra class about fucking them. I watched from the other * * * side of a stone wall, a wall that was part self-preservation, part bones and blood Age 13, hair curling down around my ears, of aloneness, part the impossible assump- glasses threatening to slide off my nose, I tions I could not shape my body around. work with my father every weekend build- Dresses. Make-up. High heels. Perfume. I ing a big wooden barn of a house. I wear tried wearing the skirts my mother sewed for overalls, my favorite flannel shirt, sleeves me. She urged me into Girl Scouts, slumber rolled up over a long-john top, and well- parties, the 4-H knitting and sewing clubs. I worn work boots. Over the years, my mother failed, not wanting any part of these activi- and I have fought about my hair. I want to ties. I loved my work boots and overalls 498 | ELI CLARE

long after all the other girls had discovered vacated the premises, leaving only her pantyhose and mini-skirts. But failing left a body as a marker. My mother who closed hole in my heart; I wanted to belong some- her eyes and turned her back, who said to where. my father, “She’s yours to raise as you see Am I feminine? Maybe I meant: “What fit.” My mother who was shaped entirely am I, a girl, a boy, something else entirely?” by absence and my father who taught me Maybe I meant: “Can I be a girl like this?” Or the hills and woods: they were the first maybe I was simply trying to say: “Mama, I thieves. don’t understand.” What did I want her to But tell me, if I start here by placing the say? At 13, I didn’t have a clue what it meant issues of violence and neglect on the table to be feminine or, for that matter, masculine. alongside my queerness, what will hap- Those words were empty signifiers, impor- pen next? Will my words be used against tant only because I knew I was supposed me, twisted to bolster the belief that sexual to have an attachment to femininity. At 13, abuse causes homosexuality, contorted my most sustaining relations were not in to provide evidence that transgressive the human world. I collected stones—red, gender identity is linked directly to green, gray, rust, white speckled with black, neglect? Most feminist and queer activists black streaked with silver—and kept them reject these linkages and for good reason. in my pockets, their hard surfaces warm- Conservatives often use them to discredit ing slowly to my body heat. Spent long days lesbian, gay, bi, and trans identities and at the river learning what I could from the to argue for our conversion rather than salmon, frogs, and salamanders. Roamed our liberation. But this strategy of denial, the beaches at high tide and low, starfish, rejecting any possibility of connection mussels, barnacles clinging to the rocks. between abuse and gender identity, abuse Wandered in the hills thick with moss, and sexuality, slams a door on the messy fern, liverwort, bramble, tree. Only here reality of how our bodies are stolen. did I have a sense of body. Those stones warm in my pockets, I knew them to be the * * * steadiest, only inviolate parts of myself. I wanted to be a hermit, to live alone with I question my mother about that day when my stones and trees, neither a boy nor a I asked, “Am I feminine?” I hope she will girl. And now 20 years later, how do I reach remember my question and her answer beneath the skin to write, not about the and offer me some clues about what I stones, but the body that warmed them, wanted to know. She has no memory of the heat itself? that day, but reminds me of something else. One year during the long rainy sea- * * * son we called winter, the Lions Club held a carnival in the old, falling-down junior high I could start with the ways my body has gymnasium. I wasted money on “the man- been stolen from me. Start slowly, reluc- eating fish,” only to see Tiny Lawrence eat- tantly, with my parents. My father who ing tuna from a can, laughed at the boys raised me, his eldest daughter, as an almost throwing wet sponges at the volunteer fire- son. My father who started raping me men, then stood watching a woman draw so young I can’t remember when he first quick cartoon-like portraits, each signed forced his penis into me. My mother who “Betsy Hammond” with a flourish. She was tells me she didn’t know about his violence. new to town, and I, curious, eventually I believe her because I know how her spirit paid my dollar to sit down in front of her STONES IN MY POCKETS, STONES IN MY HEART | 499 easel. I recognized myself in the resulting and girls—complicate what I knew of being drawing, liked the hard lines that defined girl, being boy? How did my mother’s will- my face, the angle of my jaw, the toughness ful ignorance of the hurt he inflicted on me in my mouth. influence what I absorbed about feminin- Weeks later in the grocery store, my ity and masculinity? mother introduced herself to Betsy. They started talking about husbands and chil- * * * dren, and soon my mother mentioned me, her eldest daughter, and the portrait I had Little did I know back then as I carried that brought home from the carnival. Betsy carnival caricature home with me that the didn’t know what my mother was talking experience of being called sir, assumed to about. Finally after much confusion, she be a young man, would become a regular asked, “Didn’t I draw your son?” I remem- occurrence. This gender ambiguity, being ber the complete joy I felt when my mother seen as a woman at one turn and a teen- came home with this story. I looked again age boy at the next, marks to a large extent and again at the portrait, thinking, “Right my queerness. When people stumble over here, right now, I am a boy.” It made me their pronouns, stammer, blush, or apolo- smile secretly for weeks, reach down into gize in embarrassment, I often think of Riki my pockets to squeeze a stone tight in each Anne Wilchins’ description of her friend fist. I felt as if I were looking in a mirror and Holly Boswell: finally seeing myself, rather than some distorted fun-house image. Holly is a delicate Southern belle of long acquaintance. . . . S/he has tender features, long, wavy blonde hair, a soft Carolina accent, * * * a delicate feminine bosom, and no interest in surgery. Holly lives as an open transgendered How do I write not about the stones, but mother of two in Ashville, North Carolina. Her the heat itself? I could start by asking some comforting advice to confused citizens strug- hard, risky questions. Really, I’d rather hang gling with whether to use Sir or Madam is, out with my ten-year-old self and share in “Don’t give it a second thought. You don’t have her moment of glee as she looked in the a pronoun yet for me.”1 mirror. But truly, those questions feel inevitable, and my boyhood pleasure turns cold Sometimes when I’m read as a woman, I when I dip into the messy reality of how my actively miss hearing “sir,” “ma’am” sound- body was stolen. So, whatever the risk, let ing foreign, distant, unfamiliar, even wrong me ask. to me. Usually I feel safer, somewhat buff- How did my father’s violence, his bru- ered from men’s violence against women, tal taking of me over and over again, help walking the streets after dark, knowing my shape and damage my body, my sexuality, night-time outline and stride are frequently my gender identity? How did his gendered read as male. But mostly, I feel matter-of- abuse—and in this culture vaginal rape is fact: “Oh yeah, this is happening again.” certainly gendered—reinforce my sense of Many dykes feel angered, irritated, not being a girl? How did his non-abusive dismayed, shamed by the experience of treatment of me as an almost son interact being read as male, feel the need to assert with the ways in which his fists and penis their womanhood. And in the same vein, and knives told me in no uncertain terms I hear all the time about gay men who that I was a girl? How did watching him pump up their masculinity. To defend and sexually abuse other children—both boys strengthen one’s authentic gender identity 500 | ELI CLARE

is important. But all too often I hear defen- out new ways of being women, others of us siveness in the argument that butch dykes new ways of being men, and still others don’t mimic men but carve out new ways new ways of being something else entirely. of being women; in the gay male personals You don’t have pronouns yet for us. that dismiss femmes and drag queens out of hand. Is this our one and only response * * * to a heterosexist world that refuses to recognize feminine males and masculine How do I write not about the stones, but females, that challenges our very queer- the heat itself? I could start with the brutal, ness? intimate details of my father’s thievery, of In the past decade, the burgeoning his hands clamping around my neck, tear- transgender/transsexual movement has ing into me, claiming my body as his own. questioned and started to wage a strug- The brutal, intimate details, but listen: I get gle against the binary gender system that afraid that the homophobes are right, that automatically links female-bodied people maybe in truth I live as a transgendered to femininity to womanhood and male- butch because he raped me, my mother bodied people to masculinity to man- neglected me. I lose the bigger picture, for- hood. Even the binary of female-bodied get that woven through and around the pri- and male-bodied appears more and more vate and intimate is always the public and to be a social construction as intersexed political. people—people who for any number of We live in a time of epidemic child reasons are born with or develop ambigu- abuse, in a world where sexual and physi- ous genitals, reproductive organs, and/or cal violence against children isn’t only a secondary sex characteristics—begin to personal tragedy and a symptom of power speak publicly of their lives and the medical run amok, but also a form of social control. intrusion they’ve faced. How natural are When a father rapes his daughter, a mother the rigid, mutually exclusive definitions beats her son, a white schoolteacher sexu- of male and female if they have to be ally fondles a Black student, a middle-class defended by genital surgery performed man uses a working-class boy to make on intersexed people? The trans move- child pornography, a nondisabled care- ment suggests a world full of gender and giver leaves a disabled kid to sit in her/his sex variation, a world much more com- urine for hours, these adults teach children plex than one divided into female-bodied bodily lessons about power and hierarchy, women and male-bodied men. Many trans about being boys, being girls, being chil- activists argue for an end, not to the gen- dren, being Black, being working-class, ders of woman and man, but to the socially being disabled. constructed binary. What better way to maintain a power Within this context, to answer the homo- structure—white supremacy, male phobes becomes easy, those folks who supremacy, capitalism, a binary and rigid want to dehumanize, erase, make invisible gender system—than to drill the lessons of the lives of butch dykes and nellie fags. We who is dominant and who is subordinate shrug. We laugh. We tell them: your defini- into the bodies of children. No, not every tions of woman and man suck. We tell them: individual perpetrator thinks, “This kid has your binary stinks. We say: here we are in stepped too far outside. I need to beat/rape all our glory—male, female, intersexed, her back into line.” But certainly the power trans, butch, nellie, studly, femme, king, imbalances out of which child abuse arises androgynous, queen, some of us carving are larger than any individual perpetrator’s STONES IN MY POCKETS, STONES IN MY HEART | 501 conscious intentions. Social control hap- notions of “real” men and “real” women? pens exactly at the junctures where the And how, at the same time, have we listened existing power structure is—consciously or to our own bodies? For me the answer is not—maintained and strengthened. not simple. And here is the answer to my fear. Child I think about my disabled body. For abuse is not the cause of but rather a too long, I hated my trembling hands, my response to—among other things—trans- precarious balance, my spastic muscles gressive gender identity and/or sexuality. so repeatedly overtaken by tension and The theory I’m trying to shape is not as sim- tremor, tried to hide them at all costs. More ple as “My father abused me because I was than once I wished to amputate my right a queer child who—by the time I had any arm so it wouldn’t shake. Self-mutilation is awareness of gender—was not at all sure of shame of the baldest kind. All the lies con- my girlness,” although some genderqueer tained in the words retard, monkey, defect; in kids do get raped specifically because of the gawking, the pats on my head, and the their queerness. Rather I want to say, “My tears cried on my shoulder; in the moments father raped me for many reasons, and where I became someone’s supercrip or inside his acts of violence I learned about tragedy: all those lies became my second what it meant to be female, to be a child, skin. to live in my particular body, and those les- I think about my disabled body, how as a sons served the larger power structure and teenager I escaped the endless pressure to hierarchy well.” have a boyfriend, to shave my legs, to wear make-up. The same lies that cast me as * * * genderless, asexual, and undesirable also framed a space in which I was left alone to At the same time, our bodies are not merely be my quiet, bookish, tomboy self, neither blank slates upon which the powers-that- girl nor boy. Even then, I was grateful. But be write their lessons. We cannot ignore the listen, if I had wanted to date boys, wear body itself: the sensory, mostly non-verbal lipstick and mascara, play with feminine experience of our hearts and lungs, mus- clothes—the silk skirt and pumps, the low- cles and tendons, telling us and the world cut blouse, the outrageous prom dress—I who we are. My childhood sense of being would have had to struggle much longer neither girl nor boy arose in part from the and harder than my nondisabled counter- external lessons of abuse and neglect, from parts. The sheer physical acts of shaving the confusing messages about masculinity my legs and putting on make-up would and femininity that I could not compre- have been hard enough. Harder still would hend; I would be a fool to claim otherwise. have been the relentless arguing with my But just as certainly, there was a knowing parents, resisting their image of me as that resided in my bones, in the stretch of asexual or vulnerable to assault, persuad- my legs and arch of my back, in the stones ing them that I could in truth take care of lying against my skin, a knowing that whis- myself at the movies with Brent Miller or pered, “not girl, not boy.” Dave Wilson.2 But in truth I didn’t want Butch, nellie, studly, femme, king, to date Brent or wear the low-cut blouse. androgynous, queen: how have we nego- I shuddered at the thought. How would I tiated the lies and thievery, the ways gen- have reacted to the gendered pressures my der is influenced by divisions of labor, by younger, nondisabled sister faced? For her images of masculinity and femininity, by the path of least resistance pointed in the racism, sexism, classism, ableism, by the direction of femininity; for me it led toward 502 | ELI CLARE

not-girl-not-boy. But to cast my abiding oppression hold a tremendous amount of sense of gendered self simply as a reaction power. They define and create who we are, to ableism is to ignore my body and what how we think of our bodies, our gendered it had to tell me. When I look around me selves. How do I write not about the stones, in disability community, I see an amaz- but the body that warms them, the heat ing range of gender expression, running itself? That question haunts me because the gamut from feminine to androgynous I lived by splitting body from mind, body to masculine, mixed and swirled in many from consciousness, body from physi- patterns. Clearly we respond in a myriad of cal sensation, body from emotion as the ways to the ableist construction of gender. bullies threw rocks and called retard, as How do we negotiate the lies and listen my father and his buddies tied me down, to our bodies? I think about my disabled pulled out their knives. My body became body, my queer butch body read as a teen- an empty house, one to which I seldom age boy. The markers of masculinity—my returned. I lived in exile; the stones rattling shaved head and broad stance, direct gaze in my heart, resting in my pockets, were my and muscled arms—are unmistakable. And one and only true body. so are the markers of disability—my heavy- But just as the stolen body exists, so heeled gait; my halting, uneven speech; the does the reclaimed body. I think of dis- tremors in my hands, arms, and shoulders. abled people challenging the conception They all twine together to shape me in the of a “perfect” body/mind. Ed Roberts sits ableist world as either genderless or a teen- out front of his house talking about crip age boy. The first is all too familiar to dis- liberation. Ellen Stohl shapes herself into abled people. The second arises from the a sex symbol for the disability community. gender binary, where if I am not recognized I think of queer people pushing upon the as a woman, then I am presumed to be a dominant culture’s containment of gender, man or more likely, given my lack of height pleasure, and sex. Drag queens and kings and facial hair, a teenage boy. These exter- work the stage. Dykes take to the streets. nal perceptions match in large part my Gay men defend public sex. Trans people internal sense of gender, my bodily comfort of all varieties say, “This is how we can be with gender ambiguity. But if the external men, women, how we can inhabit all the and internal didn’t match, what then? spaces in between.” Radical faeries swirl Once I sat in a writing workshop with in their pagan finery. Bisexual people resist straight, feminine, disabled women, and a neat compartmentalizing of sexuality. I we talked for an entire afternoon about think of people of color, poor people, work- gender identity, precisely because of the ing-class people all thumbing their noses damage inflicted when the external able- at the notion of assimilation. Over and over ist perceptions don’t match the internal again, we take the lies and crumble them sense of self. All too often, the thieves plant into dust. their lies, and our bodies absorb them as But how do I write about my body the only truth. Is it any surprise that some- reclaimed, full of pride and pleasure? It times my heart fills with small gray stones, is easy to say that abuse and ableism and which never warm to my body heat? homophobia stole my body away, broke my desire, removed me from my pleasure * * * in the stones warm against my skin, the damp sponginess of moss growing on a The work of thieves: certainly external per- rotten log, the taste of spring water drip- ception, stereotypes, lies, false images, and ping out of rock. Harder to express how STONES IN MY POCKETS, STONES IN MY HEART | 503 that break becomes healed, a bone once rape—that simple, that complicated. The fractured, now whole, but different from only thing I knew about desire was the raw, the bone never broken. And harder still to split-openness that rampaged through me follow the path between the two. How do I after he was done, how those feelings could mark this place where my body is no lon- overtake my body again late at night in my ger an empty house, desire whistling lonely own bed, mounting up uncontainably. I through the cracks, but not yet a house fully was not in love with a woman; I didn’t even lived in? For me the path from stolen body have a crush. And yet the question “Am I a to reclaimed body started with my coming lesbian?” hung with me. out as a dyke. I went to dyke events, read dyke books, listened to dyke music, hung out at my first * * * dyke bar, went to my first dyke dance. I adored watching those women talk, laugh, I was 18 and had just moved to the city. I hold hands, dance, kiss. Those soft butch didn’t want to be a girl, nor was I a boy. I women who would never have claimed hid my body, tried as much as possible to their butchness then, during the lesbian- ignore it. During my first week of college, feminist androgyny of the ’70s and early I started meeting dykes. In three weeks I ’80s. Those women with buzzed hair and began asking, “Am I a lesbian?” Once before, well-defined biceps, jeans faded and soft. I had faced this question and known the Those women who looked me in the eye. answer. The summer I was 12, two women, Watching them was like polishing my friends of my parents, came visiting from favorite stone to its brightest glint. I knew I Arkansas. I adored Suzanne and Susan, could be this kind of woman and so slowly showed them my favorite spots, the best over the course of that year came to know blackberry brambles, where the muskrat myself as a dyke. I waited another four built her den. I wanted them to stay with years to kiss a woman. me in my river valley. They came out to my My coming out wasn’t as much about parents, and later I overheard my father say discovering sexual desire and knowledge that Suzanne was gay, his face growing tight as it was about dealing with gender iden- and silent. Somehow I knew what that word tity. Simply put, the disabled, mixed-class meant, even though I barely understood tomboy who asked her mother, “Am I femi- homosexual and had only heard lesbian nine?” didn’t discover a sexuality among as a taunt. It made me smile. The image of dykes, but rather a definition of woman Suzanne and Susan holding hands as we large enough to be comfortable for many walked Battle Rock Beach stuck with me for years. And if that definition hadn’t been weeks. I knew somewhere deep inside me, large enough, what then? Would I have rising up to press against my sternum, that sought out hormones and/or surgery? If I I was like them. This I knew, but by the time had been born a hundred years ago when I turned 13, it had vanished. a specifically lesbian definition didn’t exist, Now at the age of 18, I picked the ques- would I have been a “passing woman”? If I tion up again. I had never kissed a boy, live long enough to see the world break free never had a boyfriend or girlfriend. I knew of the gender binary, will I find home not nothing about sexual desire. For me sex as a butch dyke, a woman by default, but as was bound together with abuse. I had some third, fourth, fifth gender? Some gen- learned the details from my father just as der that seems more possible since trans I had learned how to mix a wheelbarrow people have started to organize, build com- of concrete, frame a stud wall. Sex meant munity, speak out about our lives. Some 504 | ELI CLARE

gender that I have already started reaching agate, scoria, granite—along the scoured toward. top of the wall I once lived behind, the wall I still use for refuge. They shine in the sun, * * * some translucent to the light, others dense, solid, opaque. I lean my body into the big In queer community, I found a place to unbreakable expanse, tracing which stones belong and abandoned my desire to be need to melt, which will crack wide, geode a hermit. Among crips, I learned how to to crystal, and which are content just as embrace my strong, spastic body. Through they are. feminist work around sexual violence— political activism, theoretical analysis, * * * emotional recovery—I came to terms with the sexual abuse and physical torture done But before I make it too simple, let me tell to me. And somewhere along the line, I another story about coming to queer com- pulled desire to the surface, gave it room to munity, queer identity. Five or six years after breathe. Let me write not about the stones, I came out, I lived in Oakland, California, but the heat itself. still learning the habits and manners of I think of the first woman I dated. She urban dykes. I remember a weekend when and I spent many nights eating pizza, 20 of us, mostly dykes, helped move a friend watching movies, and talking halfway until from north Oakland to west Berkeley. The dawn. I fell in love but never even kissed apartment filled with laughter as we car- her, too afraid to even say, “This is what I ried endless boxes to the moving van, want,” much less to lean over and put my flexed our muscles over the couch, teased lips to hers. It made sense only years later the lovers who sneaked a kiss in the empty when my memories of rape came flooding closet. That mix of friends, lovers, and ex- back. I think of the butch woman, once my lovers, butch dykes, femme dykes, androg- lover, now a good friend. One night as we ynous dykes: we elbowed and jostled and lay in bed, she told me, “I like when your gossiped. Leslie and I hauled a table to hands tremble over my body. It feels good, the van. On our way back, she off-hand- like extra touching.” Her words pushed edly said how she was glad to be wearing against the lies. But all too often, sex was her steel-toed boots, but that her feet were a bodiless, mechanical act for me as I beginning to hurt. I wanted to get to know repeatedly fled my body. We decided we’d Leslie better. She was butch and knew it. I be happier as friends. I think of the woman liked watching her from across the room, who called me her dream butchy shiksa feeling something less than attraction but and made me smile. I took so long to real- more than curiosity. I hadn’t yet named ize what had flared between us she almost myself butch but knew I had much in com- gave up waiting. With her, desire traced my mon with Leslie’s butchness. So when she body, vivid and unmistakable, returning mentioned her steel-toed boots, I asked me to the taste of spring water, the texture where she worked, assuming she’d have a of tree bark as I climbed toward sky. With story about forklifts or hi-los, a warehouse, her, I understood finally what it meant to bailer, mill, factory, or mine. I thought want my hand on a lover’s skin, the weight about the summer I was 15 working in the of a lover’s body against mine. A bone long woods. I was the only girl who started the fractured, now mending. summer with work boots already broken I turn my pockets and heart inside out, in. The other girls envied me for weeks set the stones—quartz, obsidian, shale, as they nursed their blistered feet. Leslie STONES IN MY POCKETS, STONES IN MY HEART | 505 said, “I just bought them as a fashion state- How did I “know” I never wanted a hus- ment.” I felt as if I’d been exposed as a hick band, would never learn to walk in a skirt? yet again, caught assuming she was some- What does it mean when I write that I “felt” one I might have grown up with. A fashion like neither a girl nor a boy? The words statement. What did I have in common with know and feel are slippery in their vague- Leslie? I felt the stones in my heart grind ness. I pull out an old photo of myself from deep. the night of my high school graduation. I Today, more than decade after watching stand outside on our front deck; behind me Leslie from across the room, I have settled are the deep greens of western Oregon in into a certain butch identity. Often I don’t May. I wear a white dress, flowers embroi- feel drawn to the urban markers of being dered on the front panel, the plainest, sim- butch—the leather jacket, the steel-toed plest dress my mother would let me buy. I boots, the black-on-black look, the arc of look painfully uncomfortable, as if I have chain from wallet to belt loop—but I do no idea what to do with my body, hands understand how certain clothes make me clasped awkwardly behind me, shoulders feel inside my body. I learned to dress by caved inward, immobilized, almost fearful watching the loggers and fishermen I grew beneath my smile. I am in clumsy, uncon- up around, learned to love t-shirts and torn senting drag. This is one of the last times I jeans, dusty work boots and faded flannel wore a dress. This is my body’s definition of shirts from them. The girls with whom I know and feel. went to school also wore their share of And yet those things I knew and felt flannel and denim, but when it came time were also deeply shaped and colored by the to learn how to dress like “women,” they rural, white, working-class culture of Port turned to Vogue and Glamour. To emulate Orford. They were cradled not so much by the dress of their working-class moth- an unconscious baby butch sensibility, but ers was somehow shameful. They wanted in a working-class town where at weddings their lessons to come from the middle- and funerals everyone looked as if they had and upper-class beauty mags. The boys been stuffed into their dress clothes. They on the other hand never thought to dress were nurtured in the small town hardware like anyone except the working-class men store and lumber yard, where, even though around them. For me, Vogue and Glamour George always asked if I could handle the held none of the appeal that Walt Maya did, 50-pound bags of cement, I was Bob’s dressed in his checked shirt, cowboy boots, eccentric, “handicapped” kid and was and wide-brimmed hat. I joined the boys in never told to stop. They were underlined their emulation. by my parents’ desperate upward scramble I knew early on the feel of boots and toward the middle class and their corre- denim, knew I would never learn to walk in sponding passion for formal education. a skirt. I loved how my body felt as I swung They were molded by the common knowl- an ax, how my mind felt as I worked through edge that most of the girls in town would the last and hardest algebra problem in Mr. catch their lives on too many kids, most of Johnson’s advanced math class, the most the boys on alcohol and guns, and only a elusive metaphor in Mr. Beckman’s poetry few of us would leave the county for good. class. I knew I never wanted a child or a husband. I knew these things but could * * * never have put words to them, knew them in spite of all that stole me away from my The stolen body, the reclaimed body, the body. body that knows itself and the world, the 506 | ELI CLARE

stone and the heat which warms it: my hermit; but still connected to both. Enter body has never been singular. Disability with my pockets and heart half-full of snarls into gender. Class wraps around stone. Enter knowing that the muscled grip race. Sexuality strains against abuse. This of desire is a wild, half-grown horse, ready is how to reach beneath the skin. to bolt but too curious to stay away. Friday nights I go to the local queer bar, nurse a single Corona, hang out with my * * * dyke friends. Mostly I go to watch one of the wait staff, a woman with long brown In the end, I will sit on the wide, flat top hair, sharp nose, and ready smile. She flirts of my wall, legs dangling over those big, with everyone, moving table to table, mak- uncrackable stones, weathered smooth ing eye contact, hunkering down to have and clean. Sit with butch women, femme a quiet word or laugh amidst the noise. dykes, nellie men, studly fags, radical faer- She flirts with me too, catching me in her ies, drag queens and kings, transsexual wide smile, appreciative gaze. I am under people who want nothing more than to no illusion: this is simply how she works be women and men, intersexed people, her job. But after a lifetime of numbness I hermaphrodites with attitudes, transgen- adore her attention, adore tipping back my dered, pangendered, bigendered, polygen- chair, spreading my legs wide, and watch- dered, ungendered, androgynous people of ing her from across the room. many varieties and trade stories long into I want to take the stone between my the night. Laugh and cry and tell stories. tremoring hands—trembling with CP, Sad stories about bodies stolen, bodies no with desire, with the last remnants of fear, longer here. Enraging stories about false trembling because this is how my body images, devastating lies, untold violence. moves—and warm it gentle, but not, as I Bold, brash stories about reclaiming our have always done before, ride roughshod bodies and changing the world. over it. I want to enter as a not-girl-not-boy transgendered butch—gendered differ- NOTES ently than when I first came out, thinking simply, “This is how I’ll be a woman,” never 1. Wilchins, Riki Anne, Read My Lips (Ithaca, New York: Firebrand Books, 1997), p. 118. imagining there might be a day when the 2. I now recognize the disturbing irony of this, word woman was too small; differently given the ways in which my father was sexually from the tomboy who wanted to be a using me. CHAPTER 37

Unspeakable Conversations Harriet McBryde Johnson

He insists he doesn’t want to kill me. He future, including the preference for con- simply thinks it would have been bet- tinuing to live. ter, all things considered, to have given At this stage of my life, he says, I am a my parents the option of killing the baby person. However, as an infant, I wasn’t. I, I once was, and to let other parents kill like all humans, was born without self- similar babies as they come along and awareness. And eventually, assuming my thereby avoid the suffering that comes brain finally gets so fried that I fall into with lives like mine and satisfy the rea- that wonderland where self and other and sonable preferences of parents for a dif- present and past and future blur into one ferent kind of child. It has nothing to do boundless, formless all or nothing, then with me. I should not feel threatened. I’ll lose my personhood and therefore my Whenever I try to wrap my head around right to life. Then, he says, my family and his tight string of syllogisms, my brain gets doctors might put me out of my misery, so fried it’s . . . almost fun. Mercy! It’s like or out of my bliss or oblivion, and no one “Alice in Wonderland.’’ count it murder. It is a chilly Monday in late March, just I have agreed to two speaking engage- less than a year ago. I am at Princeton ments. In the morning, I talk to 150 under- University. My host is Prof. Peter Singer, graduates on selective infanticide. In the often called—and not just by his book evening, it is a convivial discussion, over publicist—the most influential philoso- dinner, of assisted suicide. I am the token pher of our time. He is the man who cripple with an opposing view. wants me dead. No, that’s not at all fair. I had several reasons for accepting He wants to legalize the killing of certain Singer’s invitation, some grounded in my babies who might come to be like me if involvement in the disability rights move- allowed to live. He also says he believes ment, others entirely personal. For the that it should be lawful under some cir- movement, it seemed an unusual oppor- cumstances to kill, at any age, individu- tunity to experiment with modes of dis- als with cognitive impairments so severe course that might work with very tough that he doesn’t consider them “persons.’’ audiences and bridge the divide between What does it take to be a person? Aware- our perceptions and theirs. I didn’t expect ness of your own existence in time. The to straighten out Singer’s head, but maybe capacity to harbor preferences as to the I could reach a student or two. Among the 508 | HARRIET MCBRYDE JOHNSON

personal reasons: I was sure it would make That first question, about my physical a great story, first for telling and then for appearance, needs some explaining. writing down. It’s not that I’m ugly. It’s more that most By now I’ve told it to family and friends people don’t know how to look at me. The and colleagues, over lunches and dinners, sight of me is routinely discombobulat- on long car trips, in scads of e-mail mes- ing. The power wheelchair is enough to sages and a couple of formal speeches. inspire gawking, but that’s the least of it. But it seems to be a story that just won’t Much more impressive is the impact on settle down. After all these tellings, it my body of more than four decades of a still lacks a coherent structure; I’m miles muscle-wasting disease. At this stage of my away from a rational argument. I keep life, I’m Karen Carpenter thin, flesh mostly getting interrupted by questions—like vanished, a jumble of bones in a floppy bag these: of skin. When, in childhood, my muscles got too weak to hold up my spine, I tried a Q: Was he totally grossed out by your brace for a while, but fortunately a skittish physical appearance? anesthesiologist said no to fusion, plates A: He gave no sign of it. None whatsoever. and pins—all the apparatus that might Q: How did he handle having to interact have kept me straight. At 15, I threw away with someone like you? the back brace and let my spine reshape A: He behaved in every way appropriately, itself into a deep twisty S-curve. Now my treated me as a respected professional right side is two deep canyons. To keep acquaintance and was a gracious and myself upright, I lean forward, rest my rib accommodating host. cage on my lap, plant my elbows beside my Q: Was it emotionally difficult for you knees. Since my backbone found its own to take part in a public discussion of natural shape, I’ve been entirely comfort- whether your life should have hap- able in my skin. pened? I am in the first generation to survive to A: It was very difficult. And horribly easy. such decrepitude. Because antibiotics were Q: Did he get that job at Princeton because available, we didn’t die from the childhood they like his ideas on killing disabled pneumonias that often come with weak- babies? ened respiratory systems. I guess it is nat- A: It apparently didn’t hurt, but he’s most ural enough that most people don’t know famous for animal rights. He’s the what to make of us. author of “Animal Liberation.’’ Two or three times in my life—I recall Q: How can he put so much value on ani- particularly one largely crip, largely lesbian mal life and so little value on human cookout halfway across the continent—I life? have been looked at as a rare kind of beauty. There is also the bizarre fact that where I That last question is the only one I avoid. live, Charleston, S.C., some people call me I used to say I don’t know; it doesn’t make Good Luck Lady: they consider it propi- sense. But now I’ve read some of Singer’s tious to cross my path when a hurricane writing, and I admit it does make sense— is coming and to kiss my head just before within the conceptual world of Peter Singer. voting day. But most often the reactions are But I don’t want to go there. Or at least not decidedly negative. Strangers on the street for long. are moved to comment: So I will start from those other questions I admire you for being out; most people and see where the story goes this time. would give up. UNSPEAKABLE CONVERSATIONS | 509

God bless you! I’ll pray for you. South Carolina’s most famous atheist. Good You don’t let the pain hold you back, do people, I’ve always thought—now sharing you? veggie pitas and conversation with a pro- If I had to live like you, I think I’d kill ponent of genocide. I try to beat a retreat, myself. but Herb and Sharon have seen me. Sha- I used to try to explain that in fact I enjoy ron tosses her trash and comes over. After my life, that it’s a great sensual pleasure to we exchange the usual courtesies, she asks, zoom by power chair on these delicious “Would you like to meet Professor Singer?’’ muggy streets, that I have no more reason She doesn’t have a clue. She probably to kill myself than most people. But it gets likes his book on animal rights. “I’ll just talk tedious. God didn’t put me on this street to him in the Q. and A.’’ to provide disability awareness training to But Herb, with Singer at his side, is fast the likes of them. In fact, no god put any- approaching. They are looking at me, and one anywhere for any reason, if you want Herb is talking, no doubt saying nice things to know. about me. He’ll be saying that I’m a disabil- But they don’t want to know. They think ity rights lawyer and that I gave a talk against they know everything there is to know, just assisted suicide at his secular humanist by looking at me. That’s how stereotypes group a while back. He didn’t agree with work. They don’t know that they’re con- everything I said, he’ll say, but I was bril- fused, that they’re really expressing the dis- liant. Singer appears interested, engaged. I combobulation that comes in my wake. sit where I’m parked. Herb makes an intro- So. What stands out when I recall first duction. Singer extends his hand. meeting Peter Singer in the spring of 2001 I hesitate. I shouldn’t shake hands with is his apparent immunity to my looks, his the Evil One. But he is Herb’s guest, and I apparent lack of discombobulation, his simply can’t snub Herb’s guest at the col- immediate ability to deal with me as a per- lege where Herb teaches. Hereabouts, the son with a particular point of view. rule is that if you’re not prepared to shoot Then, 2001. Singer has been invited to the on sight, you have to be prepared to shake College of Charleston, not two blocks from hands. I give Singer the three fingers on my house. He is to lecture on “Rethinking my right hand that still work. “Good after- Life and Death.’’ I have been dispatched noon, Mr. Singer. I’m here for Not Dead by Not Dead Yet, the national organization Yet.’’ I want to think he flinches just a little. leading the disability-rights opposition to Not Dead Yet did everything possible to legalized assisted suicide and disability- disrupt his first week at Princeton. I sent a based killing. I am to put out a leaflet and check to the fund for the 14 arrestees, who do something during the Q. and A. included comrades in power chairs. But if On arriving almost an hour early to Singer flinches, he instantly recovers. He reconnoiter, I find the scene almost entirely answers my questions about the lecture peaceful; even the boisterous display of format. When he says he looks forward to South Carolina spring is muted by gray an interesting exchange, he seems entirely wisps of Spanish moss and mottled oak sincere. bark. It is an interesting exchange. In the lec- I roll around the corner of the building ture hall that afternoon, Singer lays it all and am confronted with the unnerving sight out. The “illogic’’ of allowing abortion but of two people I know sitting on a park bench not infanticide, of allowing withdrawal of eating veggie pitas with Singer. Sharon is a life support but not active killing. Apply- veteran activist for human rights. Herb is ing the basic assumptions of preference 510 | HARRIET MCBRYDE JOHNSON

utilitarianism, he spins out his bone- decency they should have run him out of chilling argument for letting parents kill town on a rail. disabled babies and replace them with My encounter with Peter Singer merits nondisabled babies who have a greater a mention in my annual canned letter that chance at happiness. It is all about allow- December. I decide to send Singer a copy. In ing as many individuals as possible to fulfill response, he sends me the nicest possible as many of their preferences as possible. e-mail message. Dear Harriet (if he may) As soon as he’s done, I get the micro- . . . Just back from Australia, where he’s from. phone and say I’d like to discuss selective Agrees with my comments on the world infanticide. As a lawyer, I disagree with situation. Supports my work against insti- his jurisprudential assumptions. Logical tutionalization. And then some pointed inconsistency is not a sufficient reason to questions to clarify my views on selective change the law. As an atheist, I object to his infanticide. using religious terms (“the doctrine of the I reply. Fine, call me Harriet, and I’ll sanctity of human life’’) to characterize his reciprocate in the interest of equality, critics. Singer takes a note pad out of his though I’m accustomed to more formality. pocket and jots down my points, apparently Skipping agreeable preambles, I answer his eager to take them on, and I proceed to the questions on disability-based infanticide heart of my argument: that the presence and pose some of my own. Answers and or absence of a disability doesn’t predict more questions come back. Back and forth quality of life. I question his replace- over several weeks it proceeds, an engaging ment-baby theory, with its assumption of discussion of baby killing, disability preju- “other things equal,’’ arguing that people dice and related points of law and philoso- are not fungible. I draw out a comparison phy. Dear Harriet. Dear Peter. of myself and my nondisabled brother Mac Singer seems curious to learn how some- (the next-born after me), each of us with a one who is as good an atheist as he is could combination of gifts and flaws so peculiar disagree with his entirely reasonable views. that we can’t be measured on the same At the same time, I am trying to plumb his scale. theories. What has him so convinced it He responds to each point with clear and would be best to allow parents to kill babies lucid counterarguments. He proceeds with with severe disabilities, and not other kinds the assumption that I am one of the peo- of babies, if no infant is a “person’’ with a ple who might rightly have been killed at right to life? I learn it is partly that both bio- birth. He sticks to his guns, conceding just logical and adoptive parents prefer healthy enough to show himself open-minded and babies. But I have trouble with basing life- flexible. We go back and forth for 10 long and-death decisions on market consider- minutes. Even as I am horrified by what ations when the market is structured by he says, and by the fact that I have been prejudice. I offer a hypothetical compari- sucked into a civil discussion of whether I son: “What about mixed-race babies, espe- ought to exist, I can’t help being dazzled by cially when the combination is entirely his verbal facility. He is so respectful, so free nonwhite, who I believe are just about as of condescension, so focused on the argu- unadoptable as babies with disabilities?’’ ment, that by the time the show is over, I’m Wouldn’t a law allowing the killing of these not exactly angry with him. Yes, I am shak- undervalued babies validate race preju- ing, furious, enraged—but it’s for the big dice? Singer agrees there is a problem. “It room, 200 of my fellow Charlestonians who would be horrible,’’ he says, “to see mixed- have listened with polite interest, when in race babies being killed because they can’t UNSPEAKABLE CONVERSATIONS | 511 be adopted, whereas white ones could be.’’ won’t have to act like one. And anyway, I’m What’s the difference? Preferences based kind of stuck. If I decline, Singer can make on race are unreasonable. Preferences some hay: “I offered them a platform, but based on ability are not. Why? To Singer, they refuse rational discussion.’’ It’s an old it’s pretty simple: disability makes a person trick, and I’ve laid myself wide open. “worse off.’’ My invitation is to have an exchange of Are we “worse off’’? I don’t think so. Not views with Singer during his undergradu- in any meaningful sense. There are too ate course. He also proposes a second many variables. For those of us with con- “exchange,’’ open to the whole university, genital conditions, disability shapes all we later in the day. This sounds a lot like debat- are. Those disabled later in life adapt. We ing my life—and on my opponent’s turf, take constraints that no one would choose with my opponent moderating, to boot. I and build rich and satisfying lives within offer a counterproposal, to which Singer them. We enjoy pleasures other people proves amenable. I will open the class with enjoy, and pleasures peculiarly our own. some comments on infanticide and related We have something the world needs. issues and then let Singer grill me as hard Pressing me to admit a negative corre- as he likes before we open it up for the stu- lation between disability and happiness, dents. Later in the day, I might take part in Singer presents a situation: imagine a dis- a discussion of some other disability issue abled child on the beach, watching the in a neutral forum. Singer suggests a fac- other children play. ulty-student discussion group sponsored It’s right out of the telethon. I expected by his department but with cross-depart- something more sophisticated from a pro- mental membership. The topic I select is fessional thinker. I respond: “As a little girl “Assisted Suicide, Disability Discrimina- playing on the beach, I was already aware tion and the Illusion of Choice: A Disability that some people felt sorry for me, that Rights Perspective.’’ I inform a few move- I wasn’t frolicking with the same level of ment colleagues of this turn of events, and frenzy as other children. This annoyed me, advice starts rolling in. I decide to go with and still does.’’ I take the time to write a the advisers who counsel me to do the gig, detailed description of how I, in fact, had lie low and get out of Dodge. fun playing on the beach, without the need I ask Singer to refer me to the person of standing, walking or running. But, really, who arranges travel at Princeton. I imagine I’ve had enough. I suggest to Singer that some capable and unflappable woman like we have exhausted our topic, and I’ll be my sister, Beth, whose varied job descrip- back in touch when I get around to writing tion at a North Carolina university includes about him. handling visiting artists. Singer refers me He responds by inviting me to Princeton. to his own assistant, who certainly seems I fire off an immediate maybe. capable and unflappable enough. How- Of course I’m flattered. Mama will be ever, almost immediately Singer jumps impressed. back in via e-mail. It seems the nearest But there are things to consider. Not Dead hotel has only one wheelchair-accessible Yet says—and I completely agree—that we suite, available with two rooms for $600 should not legitimate Singer’s views by giv- per night. What to do? I know I shouldn’t ing them a forum. We should not make dis- be so accommodating, but I say I can make abled lives subject to debate. Moreover, any do with an inaccessible room if it has cer- spokesman chosen by the opposition is by tain features. Other logistical issues come definition a token. But even if I’m a token, I up. We go back and forth. Questions and 512 | HARRIET MCBRYDE JOHNSON

answers. Do I really need a lift-equipped Being a disability rights lawyer lecturing vehicle at the airport? Can’t my assistant at Princeton does confer some cachet at the assist me into a conventional car? How Newark airport. I need all the cachet I can wide is my wheelchair? get. Delta Airlines has torn up my power By the time we’re done, Singer knows chair. It is a fairly frequent occurrence for that I am 28 inches wide. I have trouble any air traveler on wheels. controlling my wheelchair if my hand When they inform me of the damage in gets cold. I am accustomed to driving on Atlanta, I throw a monumental fit and tell rough, irregular surfaces, but I get nervous them to have a repair person meet me in turning on steep slopes. Even one step is Newark with new batteries to replace the too many. I can swallow purées, soft bread ones inexplicably destroyed. Then I am and grapes. I use a bedpan, not a toilet. told no new batteries can be had until the None of this is a secret; none of it cause for morning. It’s Sunday night. On arrival in angst. But I do wonder whether Singer is Newark, I’m told of a plan to put me up jotting down my specs in his little note pad there for the night and get me repaired and as evidence of how “bad off’’ people like driven to Princeton by 10 a.m. me really are. “That won’t work. I’m lecturing at 10. I I realize I must put one more issue on need to get there tonight, go to sleep and the table: etiquette. I was criticized within be in my right mind tomorrow.’’ the movement when I confessed to shaking “What? You’re lecturing? They told us it Singer’s hand in Charleston, and some are was a conference. We need to get you fixed appalled that I have agreed to break bread tonight!’’ with him in Princeton. I think they have Carla, the gate agent, relieves me of the a very good point, but, again, I’m stuck. need to throw any further fits by undertak- I’m engaged for a day of discussion, not a ing on my behalf the fit of all fits. picket line. It is not in my power to margin- Carmen, the personal assistant with alize Singer at Princeton; nothing would be whom I’m traveling, pushes me in my dis- accomplished by displays of personal disabled chair around the airport in search respect. However, chumminess is clearly of a place to use the bedpan. However, inappropriate. I tell Singer that in the lec- instead of diaper-changing tables, which ture hall it can’t be Harriet and Peter; it are functional though far from private, we must be Ms. Johnson and Mr. Singer. find a flip-down plastic shelf that doesn’t He seems genuinely nettled. Shouldn’t look like it would hold my 70 pounds of it be Ms. Johnson and Professor Singer, if I body weight. It’s no big deal; I’ve restricted want to be formal? To counter, I invoke the my fluids. But Carmen is a little freaked. ceremonial low-country usage, Attorney It is her first adventure in power-chair air Johnson and Professor Singer, but point travel. I thought I prepared her for the trip, out that Mr./Ms. is the custom in Ameri- but I guess I neglected to warn her about can political debates and might seem more the probability of wheelchair destruction. I normal in New Jersey. All right, he says. keep forgetting that even people who know Ms./Mr. it will be. me well don’t know much about my world. I describe this awkward social situation We reach the hotel at 10:15 p.m., four to the lawyer in my office who has served hours late. as my default lunch partner for the past 14 I wake up tired. I slept better than I would years. He gives forth a full-body shudder. have slept in Newark with an unrepaired “That poor, sorry son of a bitch! He has chair, but any hotel bed is a near guaran- no idea what he’s in for.’’ tee of morning crankiness. I tell Carmen UNSPEAKABLE CONVERSATIONS | 513 to leave the TV off. I don’t want to hear the am glad that she has agreed to come. She’s temperature. strong, smart, adaptable and very loyal. But I do the morning stretch. Medical peo- now she is digging under the shawls, fuss- ple call it passive movement, but it’s not ing with that scarf again. really passive. Carmen’s hands move my “Carmen. What are you doing?’’ limbs, following my precise instructions, “I thought I could hide this furry thing her strength giving effect to my will. Car- you sit on.’’ men knows the routine, so it is in near “Leave it. Singer knows lots of people silence that we begin easing slowly into the eat meat. Now he’ll know some crips sit on day. I let myself be propped up to eat oat- sheepskin.’’ meal and drink tea. Then there’s the bed- The walk is cold but mercifully short. pan and then bathing and dressing, still in The hotel is just across the street from bed. As the caffeine kicks in, silence gives Princeton’s wrought-iron gate and a few way to conversation about practical things. short blocks from the building where Sing- Carmen lifts me into my chair and straps a er’s assistant shows us to the elevator. The rolled towel under my ribs for comfort and elevator doubles as the janitor’s closet— stability. She tugs at my clothes to remove the cart with the big trash can and all the wrinkles that could cause pressure sores. accouterments is rolled aside so I can get She switches on my motors and gives me in. Evidently there aren’t a lot of wheelchair the means of moving without anyone’s people using this building. help. They don’t call it a power chair for We ride the broom closet down to the nothing. basement and are led down a long passage- I drive to the mirror. I do my hair in one way to a big lecture hall. As the students long braid. Even this primal hairdo requires, drift in, I engage in light badinage with the at this stage of my life, joint effort. I undo sound technician. He is squeamish about yesterday’s braid, fix the part and comb the touching me, but I insist that the cordless hair in front. Carmen combs where I can’t lavaliere is my mike of choice. I invite him reach. I divide the mass into three long to clip it to the big polyester scarf. hanks and start the braid just behind my The students enter from the rear door, left ear. Section by section, I hand it over way up at ground level, and walk down to her, and her unimpaired young fingers stairs to their seats. I feel like an animal in pull tight, crisscross, until the braid is fully the zoo. I hadn’t reckoned on the architec- formed. ture, those tiers of steps that separate me A big polyester scarf completes my cos- from a human wall of apparent physical tume. Carmen lays it over my back. I tie it and mental perfection, that keep me con- the way I want it, but Carmen starts fussing fined down here in my pit. with it, trying to tuck it down in the back. I It is 5 before 10. Singer is loping down tell her that it’s fine, and she stops. the stairs. I feel like signaling to Carmen to On top of the scarf, she wraps the two open the door, summon the broom closet big shawls that I hope will substitute for and get me out of here. But Singer greets me an overcoat. I don’t own any real winter pleasantly and hands me Princeton’s check clothes. I just stay out of the cold, such cold for $500, the fee he offered with apologies as we get in Charleston. for its inadequacy. We review her instructions for the day. So. On with the show. Keep me in view and earshot. Be instantly My talk to the students is pretty South- available but not intrusive. Be polite, but ern. I’ve decided to pound them with heart, don’t answer any questions about me. I hammer them with narrative and say “y’all’’ 514 | HARRIET MCBRYDE JOHNSON

and “folks.’’ I play with the emotional tone, joins the discussion until he elicits a com- giving them little peaks and valleys, modu- ment from me that he can characterize as lating three times in one 45-second patch. racist. He scores a point, but that’s all right. I talk about justice. Even beauty and love. I’ve never claimed to be free of prejudice, I figure they haven’t been getting much of just struggling with it. that from Singer. Singer proposes taking me on a walk Of course, I give them some argument around campus, unless I think it would too. I mean to honor my contractual obli- be too cold. What the hell? “It’s probably gations. I lead with the hypothetical about warmed up some. Let’s go out and see how mixed-race, nonwhite babies and build the I do.’’ ending around the question of who should He doesn’t know how to get out of the have the burden of proof as to the quality building without using the stairs, so this of disabled lives. And woven throughout time it is my assistant leading the way. Car- the talk is the presentation of myself as a men has learned of another elevator, which representative of a minority group that has arrives empty. When we get out of the build- been rendered invisible by prejudice and ing, she falls behind a couple of paces, like oppression, a participant in a discussion a respectful chaperone. that would not occur in a just world. In the classroom there was a question I let it go a little longer than I should. about keeping alive the unconscious. In Their faces show they’re going where I’m response, I told a story about a family I leading, and I don’t look forward to letting knew as a child, which took loving care of them go. But the clock on the wall reminds a nonresponsive teenage girl, acting out me of promises I mean to keep, and I stop their unconditional commitment to each talking and submit myself to examination other, making all the other children, and and inquiry. me as their visitor, feel safe. This doesn’t Singer’s response is surprisingly soft. satisfy Singer. “Let’s assume we can prove, Maybe after hearing that this discussion absolutely, that the individual is totally is insulting and painful to me, he doesn’t unconscious and that we can know, abso- want to exacerbate my discomfort. His lutely, that the individual will never regain reframing of the issues is almost pro forma, consciousness.’’ abstract, entirely impersonal. Likewise, I see no need to state an objection, with the students’ inquiries are abstract and no stenographer present to record it; I’ll fairly predictable: anencephaly, perma- play the game and let him continue. nent unconsciousness, eugenic abortion. I “Assuming all that,’’ he says, “don’t you respond to some of them with stories, but think continuing to take care of that indi- mostly I give answers I could have e-mailed vidual would be a bit—weird?’’ in. “No. Done right, it could be profoundly I call on a young man near the top of the beautiful.’’ room. “But what about the caregiver, a woman “Do you eat meat?’’ typically, who is forced to provide all this “Yes, I do.’’ service to a family member, unable to work, “Then how do you justify—’’ unable to have a life of her own?’’ “I haven’t made any study of animal “That’s not the way it should be. Not the rights, so anything I could say on the subway it has to be. As a society, we should pay ject wouldn’t be worth everyone’s time.’’ workers to provide that care, in the home. The next student wants to work the com- In some places, it’s been done that way for parison of disability and race, and Singer years. That woman shouldn’t be forced to UNSPEAKABLE CONVERSATIONS | 515 do it, any more than my family should be “Do you suppose that’s the $600 acces- forced to do my care.’’ sible suite they told me about?’’ Singer takes me around the architectural “Without doubt. And if I’d known it was smorgasbord that is Princeton Univer- the Christopher Reeve Suite, I would have sity by a route that includes not one step, held out for it.’’ unramped curb or turn on a slope. Within “Of course you would have!’’ Singer the strange limits of this strange assign- laughs. “And we’d have had no choice, ment, it seems Singer is doing all he can to would we?’’ make me comfortable. We talk about the disability rights cri- He asks what I thought of the students’ tique of Reeve and various other topics. questions. Singer is easy to talk to, good company. Too “They were fine, about what I expected. I bad he sees lives like mine as avoidable was a little surprised by the question about mistakes. meat eating.’’ I’m looking forward to the soft vegetar- “I apologize for that. That was out of left ian meal that has been arranged; I’m hun- field. But—I think what he wanted to know gry. Assisted suicide, as difficult as it is, is how you can have such high respect for doesn’t cause the kind of agony I felt dis- human life and so little respect for animal cussing disability-based infanticide. In this life.’’ one, I understand, and to some degree can “People have lately been asking me sympathize with, the opposing point of the converse, how you can have so much view—misguided though it is. respect for animal life and so little respect My opening sticks to the five-minute for human life.’’ time limit. I introduce the issue as framed “And what do you answer?’’ by academic articles Not Dead Yet recom- “I say I don’t know. It doesn’t make a lot mended for my use. Andrew Batavia argues of sense to me.’’ for assisted suicide based on autonomy, a “Well, in my view—’’ principle generally held high in the disabil- “Look. I have lived in blissful ignorance ity rights movement. In general, he says, all these years, and I’m not prepared to give the movement fights for our right to con- that up today.’’ trol our own lives; when we need assistance “Fair enough,’’ he says and proceeds to effect our choices, assistance should to recount bits of Princeton history. He be available to us as a matter of right. If stops. “This will be of particular interest to the choice is to end our lives, he says, we you, I think. This is where your colleagues should have assistance then as well. But with Not Dead Yet set up their blockade.’’ Carol Gill says that it is differential treat- I’m grateful for the reminder. My brothers ment—disability discrimination—to try and sisters were here before me and to prevent most suicides while facilitat- behaved far more appropriately than I am ing the suicides of ill and disabled people. doing. The social-science literature suggests A van delivers Carmen and me early for that the public in general, and physicians the evening forum. Singer says he hopes I in particular, tend to underestimate the had a pleasant afternoon. quality of life of disabled people, compared Yes, indeed. I report a pleasant lunch and with our own assessments of our lives. a very pleasant nap, and I tell him about The case for assisted suicide rests on ste- the Christopher Reeve Suite in the hotel, reotypes that our lives are inherently so which has been remodeled to accommo- bad that it is entirely rational if we want date Reeve, who has family in the area. to die. 516 | HARRIET MCBRYDE JOHNSON

I side with Gill. What worries me most “Excuse me?’’ about the proposals for legalized assisted “By that I mean they are grounded in suicide is their veneer of beneficence—the current conditions of political, social and medical determination that, for a given economic inequality. What if we assume individual, suicide is reasonable or right. It that such conditions do not exist?’’ is not about autonomy but about nondis- “Why would we want to do that?’’ abled people telling us what’s good for us. “I want to get to the real basis for the In the discussion that follows, I argue position you take.’’ that choice is illusory in a context of per- I feel as if I’m losing caste. It is suddenly vasive inequality. Choices are structured by very clear that I’m not a philosopher. I’m oppression. We shouldn’t offer assistance like one of those old practitioners who with suicide until we all have the assistance used to visit my law school, full of bluster we need to get out of bed in the morning about life in the real world. Such a bore! and live a good life. Common causes of A once-sharp mind gone muddy! And I’m suicidality—dependence, institutional only 44—not all that old. confinement, being a burden—are entirely The forum is ended, and I’ve been able curable. Singer, seated on my right, partici- to eat very little of my puréed food. I ask pates in the discussion but doesn’t domi- Carmen to find the caterer and get me a nate it. During the meal, I occasionally ask container. Singer jumps up to take care him to put things within my reach, and he of it. He returns with a box and obligingly competently complies. packs my food to go. I feel as if I’m getting to a few of them, When I get home, people are clamoring when a student asks me a question. The for the story. The lawyers want the blow- words are all familiar, but they’re strung by-blow of my forensic triumph over the together in a way so meaningless that I can’t formidable foe; when I tell them it wasn’t even retain them—it’s like a long sentence like that, they insist that it was. Within the in Tagalog. I can only admit my limitations. disability rights community, there is less “That question’s too abstract for me to deal confidence. It is generally assumed that I with. Can you rephrase it?’’ handled the substantive discussion well, He indicates that it is as clear as he can but people worry that my civility may have make it, so I move on. given Singer a new kind of legitimacy. I A little while later, my right elbow slips hear from Laura, a beloved movement sis- out from under me. This is awkward. Nor- ter. She is appalled that I let Singer provide mally I get whoever is on my right to do even minor physical assistance at the din- this sort of thing. Why not now? I gesture to ner. “Where was your assistant?’’ she wants Singer. He leans over, and I whisper, “Grasp to know. How could I put myself in a rela- this wrist and pull forward one inch, with- tionship with Singer that made him appear out lifting.’’ He follows my instructions so human, even kind? to the letter. He sees that now I can again I struggle to explain. I didn’t feel dis- reach my food with my fork. And he may empowered; quite the contrary, it seemed now understand what I was saying a min- a good thing to make him do some useful ute ago, that most of the assistance disabled work. And then, the hard part: I’ve come to people need does not demand medical believe that Singer actually is human, even training. kind in his way. There ensues a discussion A philosophy professor says, “It appears of good and evil and personal assistance that your objections to assisted suicide are and power and philosophy and tactics for essentially tactical.’’ which I’m profoundly grateful. UNSPEAKABLE CONVERSATIONS | 517

I e-mail Laura again. This time I inform ate a system of ethics derived from fact and her that I’ve changed my will. She will reason, that largely throws off the perspec- inherit a book that Singer gave me, a col- tives of religion, place, family, tribe, com- lection of his writings with a weirdly appro- munity and maybe even species—to “take priate inscription: “To Harriet Johnson, So the point of view of the universe.’’ His is a that you will have a better answer to ques- grand, heroic undertaking. tions about animals. And thanks for com- But like the protagonist in a classical ing to Princeton. Peter Singer. March 25, drama, Singer has his flaw. It is his unexam- 2002.’’ She responds that she is changing ined assumption that disabled people are her will, too. I’ll get the autographed photo inherently “worse off,’’ that we “suffer,’’ that of Jerry Lewis she received as an M.D.A. we have lesser “prospects of a happy life.’’ poster child. We joke that each of us has Because of this all-too-common prejudice, given the other a “reason to live.’’ and his rare courage in taking it to its logi- I have had a nice e-mail message from cal conclusion, catastrophe looms. Here in Singer, hoping Carmen and I and the chair the midpoint of the play, I can’t look at him got home without injury, relaying positive without fellow-feeling. feedback from my audiences—and taking I am regularly confronted by people me to task for a statement that isn’t sup- who tell me that Singer doesn’t deserve my ported by a relevant legal authority, which human sympathy. I should make him an he looked up. I report that we got home object of implacable wrath, to be cut off, exhausted but unharmed and concede that silenced, destroyed absolutely. And I find he has caught me in a generalization that myself lacking a logical argument to the should have been qualified. It’s clear that contrary. the conversation will continue. I am talking to my sister Beth on the I am soon sucked into the daily demands phone. “You kind of like the monster, don’t of law practice, family, community and you?’’ she says. politics. In the closing days of the state leg- I find myself unable to evade, certainly islative session, I help get a bill passed that unwilling to lie. “Yeah, in a way. And he’s I hope will move us one small step toward not exactly a monster.’’ a world in which killing won’t be such an “You know, Harriet, there were some appealing solution to the “problem’’ of very pleasant Nazis. They say the SS guards disability. It is good to focus on this kind went home and played on the floor with of work. But the conversations with and their children every night.’’ about Singer continue. Unable to muster She can tell that I’m chastened; she the appropriate moral judgments, I ask changes the topic, lets me off the hook. Her myself a tough question: am I in fact a silly harshness has come as a surprise. She isn’t little lady whose head is easily turned by inclined to moralizing; in our family, I’m a man who gives her a kind of attention the one who sets people straight. she enjoys? I hope not, but I confess that When I put the phone down, my argu- I’ve never been able to sustain righteous mentative nature feels frustrated. In my anger for more than about 30 minutes at mind, I replay the conversation, but this a time. My view of life tends more toward time defend my position. tragedy. “He’s not exactly a monster. He just has The tragic view comes closest to describ- some strange ways of looking at things.’’ ing how I now look at Peter Singer. He is “He’s advocating genocide.’’ a man of unusual gifts, reaching for the “That’s the thing. In his mind, he isn’t. heights. He writes that he is trying to cre- He’s only giving parents a choice. He thinks 518 | HARRIET MCBRYDE JOHNSON

the humans he is talking about aren’t say it’s a fiction, a fetish, a quasi-religious people, aren’t ‘persons.’’’ belief?’’ “But that’s the way it always works, isn’t “Yes,’’ I say. “That’s pretty close to what I it? They’re always animals or vermin or think. As an atheist, I think all preferences chattel goods. Objects, not persons. He’s are moot once you kill someone. The injury repackaging some old ideas. Making them is entirely to the surviving community.’’ acceptable.’’ “So what if that view wins out, but you “I think his ideas are new, in a way. It’s can’t break disability prejudice? What if not old-fashioned hate. It’s a twisted, mis- you wind up in a world where the disabled informed, warped kind of beneficence. His person’s ‘irrational’ preference to live must motive is to do good.’’ yield to society’s ‘rational’ interest in reduc- “What do you care about motives?’’ she ing the incidence of disability? Doesn’t asks. “Doesn’t this beneficent killing make horror kick in somewhere? Maybe as you disabled brothers and sisters just as dead?’’ watch the door close behind whoever has “But he isn’t killing anyone. It’s just wheeled you into the gas chamber?’’ talk.’’ “That’s not going to happen.’’ “Just talk? It’s talk with an agenda, talk “Do you have empirical evidence?’’ she aimed at forming policy. Talk that’s get- asks. “A logical argument?’’ ting a receptive audience. You of all people “Of course not. And I know it’s hap- know the power of that kind of talk.’’ pened before, in what was considered the “Well, sure, but—’’ most progressive medical community in “If talk didn’t matter, would you make it the world. But it won’t happen. I have to your life’s work?’’ believe that.’’ “But,’’ I say, “his talk won’t matter in Belief. Is that what it comes down to? Am the end. He won’t succeed in reinventing I a person of faith after all? Or am I clinging morality. He stirs the pot, brings things out to foolish hope that the tragic protagonist, into the open. But ultimately we’ll make a this one time, will shift course before it’s world that’s fit to live in, a society that has too late? room for all its flawed creatures. History I don’t think so. It’s less about belief, less will remember Singer as a curious example about hope, than about a practical need for of the bizarre things that can happen when definitions I can live with. paradigms collide.’’ If I define Singer’s kind of disability “What if you’re wrong? What if he con- prejudice as an ultimate evil, and him as vinces people that there’s no morally sig- a monster, then I must so define all who nificant difference between a fetus and a believe disabled lives are inherently worse newborn, and just as disabled fetuses are off or that a life without a certain kind of routinely aborted now, so disabled babies consciousness lacks value. That definition are routinely killed? Might some future would make monsters of many of the peo- generation take it further than Singer wants ple with whom I move on the sidewalks, to go? Might some say there’s no morally do business, break bread, swap stories and significant line between a newborn and a share the grunt work of local politics. It 3-year-old?’’ would reach some of my family and most of “Sure. Singer concedes that a bright line my nondisabled friends, people who show cannot be drawn. But he doesn’t propose me personal kindness and who sometimes killing anyone who prefers to live.’’ manage to love me through their ignorance. “That overarching respect for the indi- I can’t live with a definition of ultimate evil vidual’s preference for life—might some that encompasses all of them. I can’t refuse UNSPEAKABLE CONVERSATIONS | 519 the monster-majority basic respect and my reach. My goal isn’t to shed the perspec- human sympathy. It’s not in my heart to tive that comes from my particular experi- deny every single one of them, categori- ence, but to give voice to it. I want to be cally, my affection and my love. engaged in the tribal fury that rages when The peculiar drama of my life has placed opposing perspectives are let loose. me in a world that by and large thinks it As a shield from the terrible purity of would be better if people like me did not Singer’s vision, I’ll look to the corruption exist. My fight has been for accommoda- that comes from interconnectedness. To tion, the world to me and me to the world. justify my hopes that Singer’s theoreti- As a disability pariah, I must struggle cal world—and its entirely logical exten- for a place, for kinship, for community, sions—won’t become real, I’ll invoke the for connection. Because I am still seeking muck and mess and undeniable reality of acceptance of my humanity, Singer’s call to disabled lives well lived. That’s the best I get past species seems a luxury way beyond can do. CHAPTER 38

Helen and Frida Anne Finger

I’m lying on the couch downstairs in the Now it’s the scene where the men in TV room in the house where I grew up, a blue-jean coveralls are wheeling props farmhouse with sloping floors in upstate and sweeping the stage, carpenters shoul- New York. I’m nine years old. I’ve had sur- dering boards, moving behind Gene gery, and I’m home, my leg in a plaster cast. Kelly as Don Lockwood and Donald Everyone else is off at work or school. My O’Connor as Cosmo. Cosmo is about to mother recovered this couch by hemming pull his hat down over his forehead and a piece of fabric that she bought from a sing, “Make ’em laugh . . .” and hoof bin at the Woolworth’s in Utica (“Bargains! across the stage, pulling open doors Bargains! Bargains! Remnants Priced as that open onto brick walls, careening up Marked”) and laying it over the torn up- what appears to be a lengthy marble- holstery. Autumn leaves—carrot, jaundice, floored corridor but is in fact a painted brick—drift sluggishly across a liver-brown backdrop. background. I’m watching The Million Dol- Suddenly, all the color drains from the lar Movie on our black-and-white televi- room: not just from the mottled sofa I’m ly- sion: today it’s Singing in the Rain. These ing on, but also from the orange wallpaper movies always make me think of the world that looked so good on the shelf at Street- that my mother lived in before I was born, er’s (and was only $1.29 a roll), the chipped a world where women wore hats and gloves blue-willow plate: everything’s black and and had cinched-waist suits with padded silver now. I’m on a movie set, sitting in the shoulders as if they were in the army. My director’s chair. I’m grown-up suddenly, mother told me that in The Little Colonel, eighteen or thirty-five. Shirley Temple had pointed her finger and Places, please! said, “As red as those roses over there,” and Quiet on the set! then the roses had turned red and every- Speed, the soundman calls, and I point thing in the movie was in color after that. my index finger at the camera, the clapper I thought that was how it had been when I claps the board and I see that the movie we was born, everything in the world becom- are making is called “Helen and Frida.” I ing both more vivid and more ordinary, slice my finger quickly through the air, and and the black-and-white world, the world the camera rolls slowly forward towards of magic and shadows, disappearing for- Helen Keller and Frida Kahlo, standing on a ever in my wake. veranda, with balustrades that appear to be HELEN AND FRIDA | 521 made of carved stone, but are in fact made handsome in It Happened in Brooklyn, on of plaster. Tuesday he’d have grey temples and crow’s The part of Helen Keller isn’t played by feet, be older than my father, on Wednes- Patty Duke this time; there’s no Miracle day, be even younger than he had been on Worker wild child to spunky rebel in under Monday. You could pour the different de- 100 minutes, no grainy film stock, none of cades in a bowl together and give them a that Alabama sun that bleaches out every single quick fold with the smooth edge of a soft shadow, leaving only harshness, glare. spatula, the way my mother did when she This time Helen is played by Jean Harlow. made black and white marble cake from Don’t laugh: set pictures of the two two Betty Crocker mixes. It would be 1912, of them side by side and you’ll see that and Big Bill Haywood would be waving the it’s all there, the fair hair lying in looping check Helen had sent over his head at a ral- curls against both faces, the same broadly for the Little Falls strikers, and you, Frida, cheeked bone structure. Imagine that Hel- would be in the crowd, not as a five-year- en’s eyebrows are plucked into a thin arch old child, before the polio, before the bus and penciled, lashes mascared top and bot- accident, but as a grown woman, cheering tom, lips cloisonned vermillion. Put Helen along with the strikers. Half an inch away, it in pale peach mousseline-de-soie, hand would be August 31, 1932, and both of you her a white gardenia, bleach her hair from would be standing on the roof of the De- its original honey blonde to platinum, like troit Institute of the Arts, along with Diego, Harlow’s was, recline her on a Bombshell Frida looking up through smoked glass at chaise with a white swan gliding in front, a the eclipse of the sun, Helen’s face turned palm fan being waved overhead, while an upwards to feel the chill of night descend- ardent lover presses sweet nothings into ing, to hear the birds greeting the midday her hand. dusk. I play the part of Frida Kahlo. Let’s get one thing straight right away. It isn’t so hard to imagine that the two This isn’t going to be one of those movies of them might meet. They moved after where they put their words into our mouths. all, in not so different circles, fashionable This isn’t Magnificent Obsession, blind Jane and radical: Helen Keller meeting Charlie Wyman isn’t going to blink back a tear when Chaplin and Mary Pickford, joining the the doctors tell her they can’t cure her after Wobblies, writing in the New York Times, “I all, saying, “and I thought I was going to love the red flag . . . and if I could I should be able to get rid of these,” gesturing with gladly march it past the offices of the Times her ridiculous rhinestone-studded, catseye and let all the reporters and photographers dark glasses (and we think, “Really, Jane,”); make the most of the spectacle . . .”; Frida, she’s not going to tell Rock Hudson she friend of Henry Ford and Sergei Eisenstein, can’t marry him: “I won’t have you pitied painting a hammer and sickle on her body because of me. I love you too much,” and cast, leaving her bed in 1954, a few weeks “I could only be a burden,” and then dis- before her death, to march in her wheel- appear until the last scene when, lingering chair with a babushka tied under her chin, on the border between death and cure (the protesting the overthrow of the Arbenz re- only two acceptable states), Rock saves her gime in Guatemala. life and her sight and they live happily ever Of course, the years are all wrong. after. It’s not going to be A Patch of Blue: But that’s the thing about The Million when the sterling young Negro hands us Dollar Movie. During Frank Sinatra Week, the dark glasses and, in answer to our ques- on Monday Frank would be young and tion: “But what are they for?” says “Never 522 | ANNE FINGER

mind, put them on,” we’re not going to grab But the noises of the party, Diego’s them, hide our stone Medusa gaze, grateful drunken roar, will be added later by the for the magic that’s made us a pretty girl. Foley artists. This isn’t Johnny Belinda, we’re not sweetly Helen’s thirty-six. She’s just come mute, surrounded by an aura of silence. No, back from Montgomery. Her mother had in this movie the blind women have milky dragged her down there after she and Peter eyes that make the sighted uncomfortable. Fagan took out a marriage license, and the The deaf women drag metal against metal, Boston papers got hold of the story. For so oblivious to the jarring sound, make odd many years, men had been telling her that cries of delight at the sight of the ocean, she was beautiful, that they worshipped squawk when we are angry. her, that when Peter declared himself in So now the two female icons of disability the parlor at Wrentham, she had at first have met: Helen, who is nothing but, who thought this was just more palaver about swells to fill up the category, sweet Helen his pure love for her soul. But no, this was with her drooping dresses covering droop- the real thing: carnal and thrilling and for- ing bosom, who is Blind and Deaf, her voca- bidden. How could you, her mother said. tion; and Frida, who lifts her skirt to reveal How people will laugh at you! The shame, the gaping, cunt-like wound on her leg, the shame. Her mother whisked her off to who rips her body open to reveal her back, Montgomery, Peter trailing after the two a broken column, her back corset with its of them. There her brother-in-law chased white canvas straps framing her beautiful Peter off the porch with a good old South- breasts, her body stuck with nails: but she ern shotgun. Helen’s written her poem: can’t be Disabled, she’s Sexual. Here stands Frida, who this afternoon, What earthly consolation is there for one in the midst of a row with Diego, cropped like me off her jet-black hair (“Now see what you’ve Whom fate has denied a husband and the made me do!”), and has schlepped herself joy of motherhood?. . . to the ball in one of his suits. Nothing Di- I shall have confidence as always, That my unfilled longings will be gloriously etrichish and coy about this drag: Diego satisfied won’t get to parade his beautiful wife. Now In a world where eyes never grow dim, nor she’s snatched up Helen and walked with ears dull. her out here onto the veranda. Poor Helen, waiting, waiting to get fucked in In the other room, drunken Diego lurch- heaven. es, his body rolling forward before his feet manage to shuffle themselves ahead on But not Frida. She’s so narcissistic. What the marble floor, giving himself more than a relief to Helen! None of those interroga- ever the appearance of being one of those tions passing for conversation she usually children’s toys, bottom-weighted with has to endure. (After the standard pile of sand, that when punched, roll back and praise is heaped upon her—I’ve read your then forward, an eternal red grin painted book five, ten, twenty times, I’ve admired on their rubber faces. His huge belly shakes you ever since . . . come the questions: Do with laughter, his laughter a gale that blows you mind if I ask you: Is everything black? above the smoke curling up towards the dis- Is Mrs. Macy always with you?): no, Frida tant, gilded ceiling, gusting above the knots launches right into the tale of Diego’s be- of men in tuxedos and women with mar- trayal “. . . of course, I have my fun, too, but celled hair, the black of their satin dresses one doesn’t want to have one’s nose rubbed setting off the glitter of their diamonds. in the shit . . .” she signs into Helen’s hand. HELEN AND FRIDA | 523

Helen is delighted and shocked. In her colonial Spanish palace, built in a clearing circles, Free Love is believed in, spoken of in a jungle that daily spreads its roots and solemnly, dutifully. Her ardent young circle tendrils closer, closer. A macaw perches of socialists want to do away with the sor- atop a broken Mayan statue and calls, “I did marketplace of prostitution, bourgeois am queen/I am queen/I am queen.” A few marriage, where women barter their hy- yards into the jungle, a spider monkey shits mens and throw in their souls to sweeten on the face of a dead god. the deal; Helen has read Emma, she has Wait a minute. What’s going on? Is that read Isadora; she believes in a holy, golden someone out in the lobby talking? But it’s monogamy, an unfettered, eternal meet- so loud— ing of two souls-in-flesh. And here Frida Dolores del Rio strides into the film, speaks of the act so casually that Helen, like shouting, “Latin nature! Who wrote this a timid schoolgirl, stutters, shit?” She’s wearing black silk pants and a “You really? I mean, the both of you, white linen blouse; she plants her fists on you . . .?” her hips and demands: “Huh? Who wrote Frida throws her magnificent head back this shit?” and laughs. I look to my left, my right, shrug, stand “Yes, really,” Frida strokes gently into her up in the audience and say, “I guess I did.” hand. “He fucks other women and I fuck “Latin nature! And a white woman? Play- other men—and other women.” ing Frida? I should be playing Frida.” “F–U–C–K?” Helen asks. “What is this “You?” word?” “Listen, honey.” She’s striding down the Frida explains it to her. “Now I’ve shocked aisle towards me now. “I know I filmed that you,” Frida says. Hollywood crap. Six movies in one year: “Yes, you have . . . I suppose it’s your Lat- crook reformation romance, romantic in nature . . .” Klondike melodrama, California romance, I’m not in the director’s chair anymore. costume bedroom farce, passion in a jun- I’m sitting in the audience of the Castro gle camp among chicle workers, romantic Theatre in San Francisco watching this un- drama of the Russian revolution. I know fold. I’m twenty-seven. When I was a kid, I David Selznick said: ‘I don’t care what story thought being grown up would be like liv- you use so long as we call it Bird of Paradise ing in the movies, that I’d be Rosalind Rus- and Del Rio jumps into a flaming volcano sell in Sister Kenny, riding a horse through at the finish.’ They couldn’t tell a Hawaiian the Australian outback or that I’d dance from a Mexican from a lesbian. But I loved every night in a sleek satin gown under pa- Frida and she loved me. She painted ‘What per palms at the Coconut Grove. Now I go the Water Gave Me’ for me. At the end of her out to the movies, two, three, four times a life, we were fighting, and she threatened to week. send me her amputated leg on a silver tray. The film cuts from the two figures on the If that’s not love, I don’t know what is—” balcony to the night sky. It’s technicolor: I’m still twenty-seven, but now it’s the the pale gold stars against midnight blue. year 2015. The Castro’s still there, the organ We’re close to the equator now: there’s the still rises up out of the floor with the organ- Southern Cross, and the Clouds of Magel- ist playing “San Francisco, open your Gold- lan, and you feel the press of the stars, the en Gate. . . .” In the lobby now, alongside mocking closeness of the heavens as you the photos of the original opening of the can only feel it in the tropics. The veranda Castro in 1927, are photos in black and on which we are now standing is part of a white of lounging hustlers and leather 524 | ANNE FINGER

queens, circa 1979, a photographic repro- on. When she makes the letters “z” and “j” duction of the door of the women’s room in sign, she gets to stroke the shape of the a few years later (“If they can send men to letter into Helen’s palm. She so likes the the moon, why don’t they?”) Underneath, sensation that she keeps trying to work in Braille, Spanish, and English: “In the words with those letters in them into the 1960s, the development of the felt-tip pen, conversation. The camera moves in close combined with a growing philosophy of to Helen’s hand as Frida says, “Here on personal expression caused an explosion the edge of the Yucatan jungle, one some- of graffiti . . . sadly unappreciated in its day, times see jaguars, although never jackals. I this portion of a bathroom stall, believed understand jackals are sometimes seen in by many experts to have originated in the Zanzibar. I have never been there, nor have women’s room right here at the Castro I been to Zagreb nor Japan nor the Zermatt, Theater, sold recently at Sotheby’s for $5 nor Java. I have seen the Oaxacan moun- million. . . .” tain Zempoaltepec. Once in a zoo in Zur- Of course, the Castro’s now totally acces- ich I saw a zebu and a zebra. Afterwards, we sible, not just integrated wheelchair seat- sat in a small cafe and ate cherries jubilee ing, but every film captioned, a voice loop and zabaglione, washed down with glasses that interprets the action for blind people, of zinfandel. Or perhaps my memory is over which now come the words: “As Dolo- confused: perhaps that day we ate jam on res del Rio argues with the actress playing ziewback crusts and drank a juniper tea, Frida, Helen Keller waits patiently—” while an old Jew played a zither. . . .” A woman in the audience stands up and “Oh,” says Helen. shouts, “Patiently! What the fuck are you Frida falls silent. Frida, you painted talking about, patiently? You can’t tell the those endless self-portraits, but you always difference between patience and power- looked at yourself level, straight on, in full lessness. She’s being ignored.” The stage light. This is different: this time your face is is stormed by angry women, one of whom tilted, played over by shadows. In all those leaps into the screen and begins signing self-portraits, you are simultaneously artist to Helen, “Dolores del Rio’s just come out and subject, lover and beloved, the bride of and—” yourself. Now, here, in the movies, it’s dif- “Enough already!” someone in the au- ferent: the camera stands in for the eye of dience shouts. “Can’t we please just get on the lover. But you’re caught in the unforgiv- with the story!” ing blank stare of a blind woman. Now that Frida is played by Dolores, And now, we cut from that face to the face she’s long-haired again, wearing one of her of Helen. Here I don’t put in any soothing white Tehuana skirts with a deep red shawl. music, nothing low and sweet with violins, She takes Helen’s hand in hers, that hand to make the audience more comfortable that has been cradled by so many great as the camera moves in for its close-up. men and great women. You understand why early audiences were “Latin nature?” Frida says, and laughs. “I frightened by these looming heads. In all think perhaps it is rather your cold Yankee the movies with blind women in them—or, nature that causes your reaction. . . .” And let’s be real, sighted women playing the before Helen can object to being called a role of blind woman—Jane Wyman and Yankee, Frida says, “But enough about Di- Merle Oberon in the different versions of ego. . . .” Magnificent Obsession, Audrey Hepburn in It’s the hand that fascinates Frida, in its Wait Until Dark, Uma Thurman in Jennifer infinite, unpassive receptivity: she prattles 8, we’ve never seen a blind woman shot this HELEN AND FRIDA | 525 way before: never seen the camera come in wooden console. I’m nine years old again, and linger lovingly on her face the way it used to Hays-office kisses, two mouths does here. We gaze at their faces only when with teeth clenched, lips held rigid, press- bracketed by others, or in moments of tering stonily against each other. I’m not ready ror when beautiful young blind women are for the way that Helen’s tongue probes into being stalked. We’ve never seen before this Frida’s mouth, the tongue that seems to be frightening blank inward turning of pas- not so much interested in giving pleasure sion, a face that has never seen itself in the as in finding an answer in the emptiness of mirror, that does not arrange itself for con- her mouth. sumption. I shout, “Cut,” but the two of them keep Lack = inferiority? Try it right now. Fin- right on. Now we see Helen’s face, her wide- ish reading this paragraph and then close open eyes that stare at nothing revealing a your eyes, push the flaps of your ears shut, passion blank and insatiable, a void into and sit. Not just for a minute: give it five or which you could plunge and never, never, ten. Not in that meditative state, designed never touch bottom. Now she begins to to take you out of your mind, your body. make noises, animal mewlings and cries. Just the opposite. Feel the press of hand I will the screen to turn to snow, the crossed over hand: without any distraction, sound to static. I do not want to watch this, you feel your body with the same distinct- hear this. My leg is in a thick plaster cast, in- ness as a lover’s touch makes you feel your- side of which scars are growing like mush- self. You fold into yourself, you know the rooms, thick and white in the dark damp. I rhythm of your breathing, the beating of think that I must be a lesbian, a word I have your heart, the odd independent twitch of read once in a book, because I know I am a muscle: now in a shoulder, now in a thigh. not like the women on television, with their Your cunt, in all its patient hunger. high heels and shapely calves and their We cut back to Frida in close up. But firm asses swaying inside of satin dresses now Helen’s fingers enter the frame, travel waiting, waiting for a man, nor am I like across that face, stroking the downy mous- the women I know, the mothers with milky tache above Frida’s upper lip, the fleshy breasts, and what else can there be? nose, the thick-lobed ears. I look at the screen and they are merging Now, it’s Frida’s turn to be shocked: into each other, Frida and Helen, the dark- shocked at the hunger of these hands, at haired and the light, the one who will be the almost-feral sniff, at the freedom with disabled and nothing more, the other who which Helen blurs the line between know- will be everything but. I can’t yet imagine ing and needing. a world where these two might meet: the “May I kiss you?” Helen asks. face that does not live under the reign of its “Yes,” Frida says. own reflection with the face that has spent Helen’s hands cup themselves around its life looking in the mirror; the woman Frida’s face. who turns her rapt face up towards others I’m not at the Castro anymore. I’m back and the woman who exhibits her scars as home on the fold-out sofa in the slapped- talismans, the one who is only, only and the together TV room, watching grainy im- one who is everything but. I will the screen ages flickering on the tiny screen set in the to turn to snow. CHAPTER 39

“I Am Not One of The” and “Cripple Lullaby” Cheryl Marie Wade

I AM NOT ONE OF THE I am not one of the able disabled— I am not one of the physically I’m a black panther with green eyes and challenged— scars like a picket fence I’m pink lace panties teasing a stub of milk I’m a sock in the eye with a gnarled fist white thigh I’m a French kiss with cleft tongue I’m the Evil Eye I’m orthopedic shoes sewn on a last of your fears I’m the first cell divided I’m mud that talks I am not one of the differently abled— I’m Eve I’m Kali I’m The Mountain That Never Moves I’m an epitaph for a million imperfect I’ve been forever I’ll be here forever babies left untreated I’m the Gimp I’m an ikon carved from bones in a mass I’m the Cripple grave in Tiergarten, Germany— I’m the Crazy Lady I’m withered legs hidden with a blanket I’m The Woman With Juice

Copyright © 1987 by Cheryl Marie Wade. This poem is dedicated “to all my disabled sisters, to the activists in the streets and on the stages, to the millions of Sharon Kowalskis without a Karen Thompson, to all my sisters and brothers in the pits, closets, and institutions of enlightened societies everywhere.” It originally appeared in Sinister Wisdom. “I AM NOT ONE OF THE” AND “CRIPPLE LULLABY” | 527

CRIPPLE LULLABY I’m a whisper, I’m a heartbeat, I’m “let’s call it suicide,” and a sigh I’m trickster coyote in a gnarly-bone suit One thing I am not is a reason to die I’m a fate worse than death in I’m the poster child with doom-dipped shit-kickin’ boots eyes I’m the ancient remnant set adrift on ice I’m the nightmare booga you flirt with in dreams ’Cause I emphatically demonstrate: It ain’t I’m that Valley girl, you know, dying what it seems of thin I’m all that is left of the Cheshire I’m a whisper, I’m a heartbeat, I’m “that Cat’s grin accident,” and goodbye One thing I am not is a reason to die. I’m the Wheelchair Athlete, I’m every dead Baby Doe I’m homeless in the driveway of your I’m Earth’s last volcano, and I am ready to manicured street blow I’m Evening Magazine’s SuperCrip of the Week I’m a whisper, I’m a heartbeat, I’m a genocide survivor, and Why? I’m the girl in the doorway with no One thing I am not is a reason to die. illusions to spare I’m a kid dosed on chemo, so who said life is fair I am not a reason to die. CHAPTER 40

“Beauty and Variations” Kenny Fries

1. 2. What is it like to be so beautiful? I dip I want to break your bones. Make them so my hands inside you, come up with— they look like mine. Force you to walk on what? twisted legs. Then, will your lips still Beauty, at birth applied, does not beg transfer for mine? Or will that disturb the to my hands. But every night, your hands balance touch my scars, raise my twisted limbs to of our desire? Even as it inspires, your graze against your lips. Lips that never body terrifies. And once again I find your hands form the words—you are beautiful— transform inside me. Why do you touch my scars? my deformed bones into—what?—if not You beauty. can’t make them beautiful any more than I can Can only one of us be beautiful? Is this your tear your skin apart. Beneath my scars, plan? Are your sculpted thighs more between my twisted bones, hides my powerful heart. driving into mine? Your hands find their Why don’t you let me leave my mark? With way no inside me, scrape against my heart. Look flaws on your skin—how can I find your heart? at your hands. Pieces of my skin trail from your fingers. What do you make of this? 3. Your hands that know my scars, that lift How much beauty can a person bear? Your me to your smooth lips, now drip my blood. Can blood be skin is no relief from the danger of your beautiful? eyes. “BEAUTY AND VARIATIONS” | 529

My hands would leave you scarred. Knead birth’s plan—to tie desire to my pain, to the muscles stain of your thighs. I want to tear your skin, love’s touch with blood? If my skin won’t reach heal, how inside you—your secrets tightly held. can I escape? My scars are in the shape of Breathe my love. deep. Release them. Let them fall into my palms. 5. My secrets are on my skin. Could this be How else can I quench this thirst? My why lips each night I let you deep inside? Is that travel down your spine, drink the smooth- where my beauty lies? Your eyes, without ness secrets, of your skin. I am searching for the core: would be two scars. I want to seal your What is beautiful? Who decides? Can the eyes, laws they know my every flaw. Your smooth of nature be defied? Your body tells me: skin, love’s come wounds ignore. My skin won’t mend, is close. But beauty distances even as it calloused, raw. draws me near. What does my body want from 4. yours? Who can mend my bones? At night, your My twisted legs around your neck. You hands press bend into my skin. My feet against your chest, me back. Even though you can’t give the you mold bones my twisted bones. What attracts you to my at birth I wasn’t given, I let you deep legs? Not inside. sex. What brings your fingers to my scars You give me—what? Peeling back my skin, is beyond you desire. Why do you persist? Why do you expose my missing bones. And my heart, touch me long as if my skin were yours? Seal your lips. No before you came, just as broken. I don’t kiss know who can heal these wounds. No words to blame. So each night, naked on the bed, unbend my bones. my body Beauty is a two-faced god. As your fingers doesn’t want repair, but longs for inno- soothe cence. If my scars, they scrape against my heart. innocent, despite the flaws I wear, I am Was this beautiful. CHAPTER 41

Selections from Planet of the Blind Steve Kuusisto

I believe that in every blind person’s imag- centered on the New Criticism, a method ination there are landscapes. The world of reading and analysis born in the years is gray and marine blue, then a clump of after World War II. This is a lucky break for brown shingled houses stands revealed me: the stress here is on the close reading by rays of sun, appearing now as bison— of texts. shaggy and still. These are the places One simply has to read a poem to learned by rote, their multiple effects of death. color made stranger by fast-moving clouds. The professor chain-smokes and The unknown is worse, an epic terrain that, takes the class line by line through turgid in the mind’s eye, could prevent a blind Victorian prosody. We crawl in the nico- person from leaving home. tine haze through the comma splices of Since I know the miniature world of Thomas Hardy. Geneva, New York, I decide to attend col- I listen, hunched in my chair as the lege there. On campus, though, there are machinery of poets is dissected. We are sudden skateboards. I wish for a magic eighteenth-century clock makers: nothing necklace to ward them away. The quadran- is too small for our rational little universe. gle is a world of predatory watching, and so In the dim library I move through the I begin affecting a scowl. I look serious, as if stacks, pressing my nose to the spines. In my my corpuscles have turned into hot pearls. pocket I carry a letter from the eye doctor I’m the angriest-looking boy on earth. addressed “To Whom It May Concern”—it The dean’s office knows about my eyes. avows that too much reading is danger- I have a first-floor room in the dorm in ous for me. “The scanning motions inher- case of fire. The theory is that with a vision ent in reading make retinal tearing more impairment, I might not make it down the likely. Therefore Mr. Kuusisto should read fire escape. This is the extent of the cam- in moderation.” pus’s support service for disabled students Like all true talismans, this letter is fright- in 1973. The unreadable print in books, ening. It’s designed to protect me from pro- the dark dormitory room, the inaccessible fessors who may demand too much from library books—all these are things left to me. But in my pocket it feels like a letter my dissemblings. bomb. In the classroom I gravitate toward lit- Reading is hazardous! erature. The prevailing pedagogy is still And to me the words of poetry are SELECTIONS FROM PLANET OF THE BLIND | 531 onions, garlic, fennel, basil; the book itself he would repress all memories of them. an earthenware vessel. There are limits to cognition and reason. Reading alone with a magnifying glass, What would he think in the mad purple nothing on earth makes more sense to twilight where I live. Would he visit him- me than Wallace Stevens’s poem “The self? Pleasures of Merely Circulating”: “The angel I hear radios and TV sets from the open flew round in the garden/the garden flew windows on campus. round with the clouds,/and the clouds flew Under the violet streetlights my glasses, around, and the clouds flew around,/and thick as dishes, fill with aberrations at the the clouds flew around with the clouds.” edges of their thick curves. My spastic eye takes in every word like College is brutally difficult for me. One a red star seen on a winter night. Every syl- poem must take the place of the bulky lable is acquired with pain. But poetry fur- novel I cannot read, or at least not read in nishes me with a lyric anger, and suddenly a week. I often go home from the library poems are wholly necessary. Robert Bly’s with the few words I’ve been able to see book The Light Around the Body, for exam- and absorb still vivid in my imagination. ple, expresses an almost mystical combi- Alone, I take the words apart and rearrange nation of wonder and rage about “the Great them like Marcel Duchamp playing chess Society.” He depicts a world gone so awry with his own private rules. Still, I need extra that the very pine stumps start speaking of time for every assignment. But exploring Goethe and Jesus, the insects dance, there what words can do when placed side by are murdered kings in the light bulbs outside, I’m starting to build the instrument side movie theaters. All of it is glorious, and that will turn my blindness into a manner like my boyhood discovery of Caruso in the of seeing. attic, Bly’s voice, among others—Breton, Still, walking around, feigning sight, I Nerval, Lorca—follows me in the dark. step in the rain-washed gutter, brush the street sign, and make a hundred slapstick * * * gestures. In a flash I’m Stan Laurel, the angel of nutty innocence. This can happen I move in a solitude fueled by secrecy. O without warning. It might be the telephone Lord, let me never be seen with the white that does it. A friend calls, saying she’ll meet cane. Let me roll through the heavy oceans me downstairs in half an hour. She drives a like the beluga whale, filled with dark seeds, red Chrysler. always coursing forward. Let no one find I walk down to the street and approach me out! This is my lacerating tune. Leaning the car. I reach for the door on the passen- over my private page, I shake with effort. ger’s side and give it a tug, but it’s locked. I Weakness and lack of affect are the rap on the window, but my friend doesn’t synonyms for the word blind. In Roget’s seem to hear. I rap again, tug on the door, Thesaurus one finds also: ignorant, rap and tug. Then I walk around to her side oblivious, obtuse, unaware, blocked, con- of the car. Is she in some Wagnerian trance, cealed, obstructed, hidden, illiterate, back- Brünnhilde at the wheel? When I lean ward, crude, uneducated, and worst of all, down to her window, I see at last the face unversed. of a genuinely terrified Chinese woman. At twilight I walk in the botanical gar- I motion to her to roll down her window. dens, the night smells richly of lilac. I’ve She won’t. I try to explain my mistake in read that Immanuel Kant could not bear to sign language—pointing to my eyes, tell- visit his friends in sickness; after they died, ing her loudly that I’ve mistaken her car for 532 | STEVE KUUSISTO

that of a friend. I begin backing away from But I’ve traveled so far to see the paint- her into the street like an ungainly kid on ings, and I hate to be circumscribed by roller skates. tricks of the light, so I fall in with a group My embarrassments are legion. I know of American tourists. They are dutifully fol- the white cane has become a necessity lowing a Spanish woman tour-guide who is for the maintenance of my psychological describing paintings in the gallery at which health. I enter bathrooms marked “Ladies,” I’ve arrived. But she spots me as an impos- and entering restaurants, I trip down short tor, a freeloading listener, and as I strain flights of steps. I appear misty eyed and to see the fetlock of a painted horse, she drunk and walk about in circles looking for points me out to the group. exits and entrances. “This man is not in our tour,” she says. Without the cane, who will understand “Sir, you will have to leave.” me? But it will be another eighteen years And I walk from the museum, a flapping before I receive proper Orientation and windmill of a man, and find myself doing a Mobility training. Before I will accept it. muddy umbrella-dance in the icy wet park. Two students approach and ask if I’ll buy * * * a comic book to help disabled schoolchil- dren. I give them some money and think In one of my last trips without a cane I visit that some kid will get a break. the great Prado museum in Madrid, where I find I cannot see the famous paintings of * * * Velázquez and Goya because they are hanging behind ropes that prohibit the vandals Dusk is the hour when I’m most likely to from drawing too close. Since I can’t draw misjudge the speed and flow of traffic. It’s near, I see oceans of mud in vast gilded rush hour—people hurrying home in the frames instead of the ceremonial world of autumn rush hour, some on foot, some in court or the sprawl of lusty peasants. cars. In such moments I often feel prema- I’ve waited years to get to the Prado, turely aged: I want some help in crossing and now I’m wandering through its broad the street. I want to reach for someone’s hallways thwarted by guards and ropes. Of arm. course I should be carrying a white cane. Ironically, though, as things visual are But of course I’m carrying nothing except in doubt, they grow in unconventional my sense of not-quite-belonging, which beauty. Dear Jackson Pollock, I’ve entered I’m fighting like a man swatting hornets. your Autumn Rhythm. The irregular or At a souvenir counter I buy a museum sometimes certain flight of color and shape guide—I’ll read about the paintings I can’t is a wild skein, a tassel of sudden blue here, see—but the print is microscopic. Instead a wash of red. The very air has turned to of a book, I find I’m holding a little cup full hand-blown glass with its imperfect bub- of sand. bles of amethyst or hazel blue. I stand on The light in the Prado is alternately pris- the ordinary street corner as if I’ve awak- matic, then dark as a jail. I stand in the ened at the bottom of a stemware vase. The sunbeams under the oval skylights and glassblower’s molten rose has landed in my watch the world break up into rainbows, eyes. then turn a corner into a great vaulted I shift my glasses—a slow moon rises on darkness, where an important painting my path, things appear and disappear, and hangs behind a veil, black as an abandoned the days are like Zen-autumn. lighthouse. * * * SELECTIONS FROM PLANET OF THE BLIND | 533

A benevolent shakespeare professor finds woman, I experience puppy love. She’s me a reader. Enter Ramona, a classics an Irish country girl with long, thrilling, major who comes in the afternoons three unkempt red hair. Red leaning back toward days a week. gold. We sit in a sunbeam in a steep room Bettina cooks spaghetti over a gas ring in somewhere toward the rear of the library. a basement. (She never has an apartment It’s a storage space, old encyclopedias line of her own, instead she occupies other peo- the shelves. The librarian thinks no one will ple’s places without self-consciousness. She hear Ramona reading to me in this spot. knows everyone.) I accept a glass of wine, He’s given us two wooden chairs. We stack I’m wrapped in earth tones and sparks. My our books on them and sit on the floor. Soon hands stink of Gauloises cigarettes, my fin- we have a blanket, which we assiduously gers spasm from the nicotine. roll up and store each night in a closet. She squeezes the juice of a lemon into Ramona is a tremendous reader, the the salad. Puts Tabasco in the pasta sauce. shadowy forms of things, ideas, gestalt, She throws raw carrot chunks in there too. whatever, they move as she talks. Together “Why are you putting carrots in the we cross the ancient hot plateaus where tomato sauce? That’s disgusting!” words are as mighty as numbers. She reads “Oh, shut up, if you’d eaten more carrots, Gilgamesh, the poems of the Cid. And flat your eyes would be better.” on my back in that tall room, I never fall “I ate lots of carrots! My eyes went bad asleep. What stranger miracles are there? from masturbation!” Sometimes she stops, and I learn not to “Well, maybe you don’t need to do that interrupt her silence: she’s performing a anymore.” calculation. It’s a lesson for me in absorp- I can’t speak, because she’s kissing me. tion. My own nervousness tends to exclude It’s a potent kiss, her tongue is wet and vital such moments. in my mouth. Oddly enough, eros, syllables, and She draws me to the floor, pulls down my alchemy are facts, particularly in the lives pants, guides me inside her. I can’t believe of young people. Beside Ramona, listen- how quickly she does it, my brain is still ing, my habitual shyness around women stuck on the word carrot. begins to fall away. Outside the library, I She’s on top, loosening buttons down find myself conversing with my female the front of her black dress. As her breasts classmates with ease. For the first time, I touch my outstretched hands, I come with discover how conversations between men every ounce of my viscera. I come the way and women can be like warm soap dissolv- all virgin-boys should—with surrender and ing in a bath. reverence. I’m trying to say something. In the old student pub—a dark cellar, “It’s okay,” she whispers. “I’m wearing a I meet a strange new girl named Bettina. diaphragm.” We talk and drink German beer. Bettina I start to rise on my elbows. is a polymath, angry, rebelling against her “I’m sorry, I—” father, who is an executive at a television “Shhhhh!” network. Her face closes in, her red hair falls over “The bastard, he’d have been comfort- my eyes, tickles, smells faintly of shampoo. able during the Crusades!” she says, and She guides my fingers gently to her clitoris. stubs her cigarette out in an ashtray on the She’s an open meadow! A birch tree at mid- bar. summer, the sunlight seeming to be above With this altogether irreverent young and inside her. 534 | STEVE KUUSISTO

Like all virgins, I’m a narcissist: surely In the library Bettina finds a box of discarded no one has ever experienced this abundant records. These are Caedmon recordings of wet circle of girl before? Not like this! Yeats, an actor reading Baudelaire, poems I’m on a rug in a spot of lamplight. The by Carl Sandburg, John Crowe Ransom. The sauce simmers behind us. There’s a clatter recordings are in miserable condition. And of water pipes, there are apartments above. there at the bottom of the pile is a recorded Dishes rattle somewhere. Bettina is astride bird-watching disk. A British narrator talks me, and leaning, she kisses me forcefully, the listener through encounters with doz- filling my mouth with her sip of cabernet. ens of different birds. The birds sing on For the first time the vast silence that fol- command, precise, silver, optimistic. lows sex expands in my chest. “Listen to the plover!” says the voice. “I love you!” I say it. “I love you!” “He’s stirring on a spring morning!” I begin to cry. I who cannot see a The plover obeys, lets loose its porous woman’s face, who can’t look someone notes. in the eye, I, I, who, what, never thought “Now the nightingale. Bird of poetry!” this could happen. I’m crying in earnest, The nightingale sounds brighter and copious sparkles. better rested than the plover. Clearly it is a “Shhhhh!” happy bird. She arches her back, I slip from her, a “The blackbird.” little fish, laughing and weeping. “The oriole.” Bettina refastens her dress, retrieves a In some places the needle sticks. The tortoiseshell hair clasp, arranges it, sings oriole hiccups over and over. very softly some lines from Yeats: “‘Ah Here come the wild swans. penny, brown penny, I am looped in the I’m completely jazzed: all my life I’ve loops of her hair.’” been a stranger in this neighborhood. I’ve never seen a bird. Now, hearing them has * * * made a place in my imagination. The birds! The damned birds! I’ve been missing out Nights. november. books. Smoke. Pierre on something huge. But where are they? Reverdy. Emily Dickinson. The windows Someone tells me about the ornithol- open, a sweet smell of fallen leaves. I stroke ogy collection in the biology building. I Bettina’s neck as she reads from Rexroth’s go there alone on a Saturday, when I know Chinese poems: “‘The same clear glory that the building will be deserted. The birds extends for ten thousand miles. The twilit are arranged in display cases on both sides trees are full of crows.’” of the first-floor corridor. I press my nose I’m unimaginably blessed. The crystal- to the glass specimen case and try not to lography of sharpened syntax, image, her breathe, for breathing fogs the glass. I see voice behind it, wash of water on stones. cocoon shapes, brown as cordovan shoes. “‘My soul wandered, happy, sad, unend- These are the taxidermied and long-fallen ing.’” (Neruda) members of the parliament, as strange to “‘The branches are dying of love.’” me as Roman coins and nails. (Lorca) The labs are empty, the lights off. There “‘Show me, dear Christ, thy spouse, so is a hum of large refrigerators, a percolat- bright and clear.’” (Donne) ing sound. I tap the glass case with my fore- “‘Here is the shadow of truth, for only finger, and it swings open as if by magic! the shadow is true.’” (Warren) Perhaps some student assistant has forgot- * * * ten to lock the case! SELECTIONS FROM PLANET OF THE BLIND | 535

Imagine never having seen a bird. And watching with me. Jim is a poet, a student now your hands are free to explore the of anything that possesses color. He is a vagaries of the bird-tomb. How weightless mosaic man with a Peterson’s guide and at they are, light as dinner rolls! But the feath- least two pairs of binoculars. ers are stiff, almost lacquered, like the tiny We walk into a meadow, talking of poets, ribs of a corset I once held in an antique Leopardi, Rumi, Eliot. shop. This can’t be what a live bird’s plum- Jim knows I can’t see well but figures he age would feel like. These birds are stiff, can point me to colors, fix me on a glitter- Victorian, spent. ing stone from Ravenna, a goldfinch on a But what a miracle of pipe stems and lig- fencepost. atures, the legs and wings joined with such “Hold still, right there is a fat finch big as supple delicacy. a Spanish gold piece!” he says, whispering I lift a large thing from its perch, hold it through his mustache, as if he were reading to my face, just barely making out its preda- aloud in one of his classes. tory look. A hawk? It’s large as a basketball, “There’s a red-winged blackbird.” light as a throwaway newspaper. “A vireo.” Here I am, twentysomething, standing “A scarlet tanager.” in a deserted corridor, fondling birds. I feel How toothsome they all sound! How like a frotteurist: a person who has orgasms thrilling it must be to spy them on their from casual touch with strangers. I’m some April branches, blond chaff from the skies, kind of pervert, alone with these dead birds, afterthoughts of a blue atmosphere. running my hands over their heads, tracing When I look through binoculars, I see their beaks with my fingernails. What if a a coral blue/green bubble, perhaps my security guard were to appear and ask me own eye, but nothing like a bird. I can’t what I’m doing? quite bring myself to tell this to Jim, who “I’m blind, sir, and this is my first experi- is in a rapture of color and evolutionary ence with birds!” wonder. “My name is Kid Geronimo, and I live in “To think these things evolved from pri- the elevator!” mal mud without a god!” he says, alert to “Have you ever touched a plover, sir?” the sheer improbability of our planet. But “My name is Wigglesworth, I’m search- by now I realize I am looking at the blue ing for insects.” dish of self. My field glasses are trained on This is a lifelong habit, imaginary con- my own optic nerves. versations with authority figures, usually I have a major bird thirst, something when I’m touching something, when I’m untranslatable, I can’t share it, can’t cry on the verge of an understanding. aloud at my frustration. Instead I pretend. All the birds smell like vintage hats. As I “Can you see him? He’s right on that run my hands over their prickly backs, I put post, fat and horny,” says Jim, and I look names to them, since I have no idea what into my own dish of thickened green and they are. say, “Look at him jump!” At the moment I “Leather-breasted barnacle chomper.” say it, I mean it. I can see that bird hopping “Blue-throated Javanese son of Zero.” up and down, that goldfinch jumping like a Outside I sit under a tree and listen to penny on a railroad track. the living catbirds, a thrush, the chickadee. I agree with everything Jim sees, add- What I wish for is to see a live bird. So one ing my own intensifier and adjectives. I afternoon shortly thereafter, I convince my don’t want to tell him I can’t see the friend and teacher Jim Crenner to go bird- damned things, fearing it will make him 536 | STEVE KUUSISTO

self-conscious, for then our outing will lars, gloating over imaginary bluejays, but become an exercise in description. He’ll I’m alone with my own imagination, listen- have to tell me what they look like. And I ing casually to an enthusiastic friend, my will have to appreciate them all the more. blindness locked away for the time. By pretending to see, I’m sparing us an I think Jim imagines I’ve seen some ordeal. Sure I’m faking it with the binocu- birds, and maybe I have. CHAPTER 42

Selected Poems Jim Ferris

POEMS WITH DISABILITIES I’m sorry—this space is reserved for poems with disabilities. I know it’s one of the best spaces in the book, but the Poems with Disabilities Act requires us to make all reasonable accommodations for poems that aren’t normal. There is a nice space just a few pages over—in fact (don’t tell anyone) I think it’s better than this one, I myself prefer it. Actually I don’t see any of those poems right now myself, but you never know when one might show up, so we have to keep this space open. You can’t always tell just from looking at them, either. Sometimes they’ll look just like a regular poem when they roll in . . . you’re reading along and suddenly everything changes, the world tilts a little, angle of vision jumps, your entrails aren’t where you left them. You remember your aunt died of cancer at just your age and maybe yesterday’s twinge means something after all. Your sloppy, fragile heart beats a little faster and then you know. You just know: the poem is right where it belongs. 538 | JIM FERRIS

FROM THE SURGEONS: DRS. 7–28–61. Physical Examination. Examina- SOFIELD, LOUIS, HARK, ALFINI, tion reveals a slight MILLAR, BAEHR, BEVAN-THOMAS, compensatory scoliosis. This is corrected TSATSOS, ERICSON, AND by equalization of leg lengths. BENNAN This boy walks with a left short leg limp. He is able to run without difficulty, 6–10–60. History. This child is the second and can hop on his right foot, but he is una- of three ble to hop on his left foot. children— the other two are perfectly nor- When performing the duck waddle his left mal. He was the product leg leads the right. of a normal pregnancy and delivery. At birth it was noted 12–7–62. Neurological Examination. Deep that the left lower extremity was shorter tendon reflexes than the right. The child are physiological. There is a slight diminu- had a fragmentation and rodding of the left tion of the left knee jerk femur as contrasted with that on the right. No for stimulation of bone growth. Prior to sensory loss nor pathologic reflexes. that procedure a 2” discrepancy existed. This procedure was repeated in 8–28–63. Progress Notes. The mother 1957 and again in 1958. Prior relates that the boy has been to the procedure in 1958 a 2” discrepancy stumbling more and more in recent weeks. was again noted. The child’s His quadriceps are early development was normal. He has, of quite weak, probably from the multiple course, been periodically set back surgical procedures in his physical progress because of the sur- done on this thigh. Quadriceps are rather gical procedures. bound down at the knee. The leg length discrepancy is 3” and it is 6–10–60. Physical Examination. Head: very difficult There is nothing to have a satisfactory shoe lift on this abnormal about the head. Left lower dimension. A long leg brace extremity: There appears was ordered with knee locks and with a 2” to be only a very moderate degree of atro- pylon extension. phy in the left thigh, but this is explainable on the basis of his surgi- 11–8–63. Progress Notes. This boy has cal procedures. received his long leg brace Gait is moderately abnormal but caused with the caliper extension today. The brace only is satisfactory, by the leg length discrepancy. except for the fact that the ankle joint is rigid and 7–28–61. History. He began sitting at six he has a great deal of difficulty getting his months of age, walked trousers on and off at one year, and began talking at about one and needs to split the seams. year of age. There have been some periods of regression following the 8–14–64. Progress Notes. This child who is early surgical procedures. The boy almost 10 years of age is attending school and is apparently well is wearing a long leg brace with a stilt on it, adjusted. but the mother says SELECTED POEMS | 539 that he objects to this and apparently is 10–30–70. Progress Notes. Final Discharge. undergoing considerable The patient is essentially emotional disturbance. The mother has unchanged since last visit. His leg lengths noticed this since his return measured to the heel from the hospital at which time he on the right measures 101 and 86 on the left had a repeat fragmentation and from the anterior superior rodding. iliac spine. He has occasional episodes of pain. He is still 4–7–67. Physical Examination. Lower wearing the long leg brace with the high lift extremities: Circumference: below There is obvious atrophy of the left thigh: and there was no indication on the moth- This cannot er’s part that she plans be accurately compared with the right on having anything done in the near because of the shortness future. of the extremity and the dislocation of the patella.

6–6–69. History. The child is in the ninth grade and does fair and goes to a regular school. 540 | JIM FERRIS

POET OF CRIPPLES Let me be a poet of cripples, of hollow men and boys groping to be whole, of girls limping toward womanhood and women reaching back, all slipping and falling toward the cavern we carry within, our hidden void, a place for each to become full, whole, room of our own, space to grow in ways unimaginable to the straight and the narrow, the small and similar, the poor, normal ones who do not know their poverty. Look with care, look deep. Know that you are a cripple too. I sing for cripples; I sing for you. SELECTED POEMS | 541

NORMAL Across Oak Park Avenue is a city park, lush and busy, where men play softball all evening, too far away to watch, their dim voices drifting across the green. Their cars line the streets as far as I can see. Sammy and I, Robert and I, Hoffman and I call out the makes and models as the cars pass. Dodge Dart. Chevy Nova. We are seldom wrong—Corvair,

Pontiac GTO—we who drive wheelchairs and banana carts— Mustang, VW, Rambler American—who have not yet rounded second— ’57 Chevy! My dad had one of those— who watch out windows a world so soft—T-bird— so fair—Corvette— so normal—Ford Fairlane— a world going on, going by, going home. 542 | JIM FERRIS

HIGH CONCEPT

I was just planning to be in LA for a couple days—make a few calls, see an old friend, sit on the beach for an hour. Nothing special. Calling up

the Screen Actors Guild was just a whim. A joke. I never dreamed that anything would come of it. You know how the guild has a rule that no two actors can use the same name.

I just called to see if they had anyone using mine. That’s all. Just a moment, I’ll check, the person says. She’s back in two minutes. Did you say Jim Ferris? Yes.

Of course you’re registered, Mister Ferris. One moment, please. What does she mean of course, I’m thinking, when suddenly this poodle voice yaps: Where have you been I’ve been

trying to get hold of you for a month OK a week but you gotta talk to me, check in once in a while. Excuse me, but who is this? Oh, this is just great—

a week in the country and it’s amnesia. Hello—I’m your agent. You’d be nothing without me. I’m quoting you here. Where are you? I’m not thinking, I tell him the name

of the hotel. Nobody stays there, he says. Ten minutes. And hangs up before I can say I’m nobody, really. But I’m curious too, so I go down

to the lobby to see what this agent looks like—if he shows. He does—and in five minutes. He doesn’t go up to the desk, he comes right over to me and sits down.

Why don’t you call me I’ve been worried sick. I’m about to say Because I don’t know you, but he’s already on this great deal he’s cooked up for me—for this other guy. SELECTED POEMS | 543

I’m not an actor, I tell him. That’s why they want you, he says. I’m not the right guy, I say. I don’t know this business, I don’t know you or anybody in this town.

Nobody really knows anybody else, do they. Before I know it we’re having lunch and all these people are acting like they know me. A couple I’d seen in movies—that’s it.

Nobody believes that I’m not who they think I am. I show them my brace— no movie star wears a brace like this, or walks like I do, unless they’re trying to win an Oscar. Cut it out, Jim, my agent says. You can’t keep pulling this stunt. What the hell, maybe it will be fun, until they figure it out. But they never do. I take the part my agent lined up for that other Jim. I stand where they tell me, look where they tell me, say my lines. Beats working. I take more parts, do some deals, before you know it I’m a player, a commodity, Mister Green Light, as full of shit as anybody. What’s become of the other Jim Ferris? Maybe he’s back home, stepping into the light, saying my lines right on cue. 544 | JIM FERRIS

FACTS OF LIFE

Where’s the glory in it? I am not a survivor. Whatever the state of my legs, whatever happened there, know this: I walk down the street whole, whether I limp or stumble, cane or crutches, roll in a chair. This is my body. Look if you like. This is my meat, substance but not essence, essence but not fate, sum of all its particles back to the big one but particular to no single interpretation in a cosmos of possible ontologies that we all try to limit with all our soft might but which accepts only the most temporary instructions: you, sir, explain that birthmark, and you, how about that nose? We are not signs, we do not live in spite of or because of our facts, we live with them, around them, among, like we live around rivers, my cane, your warts, like we live among animals, your heart, my brace, like we live with, despite, because of each other. SELECTED POEMS | 545

NO SUGAR, NO MILK I’m going to get up out of this chair and throw it away and walk. Christopher Reeve, February 1996

They’re dying now, the old ones. My people die too young. When I first saw him fly I had no idea he would join my clan, faster than sound he would fall to ground and learn to love the rich, bitter taste of all grounds (no sugar, no milk) when ground is what you know. I may be an old one soon, and when I offer this body to the fire and my coal is ground out and my name floats off to be forgotten, know that this is your clan too. Our clan is grounded, grace is anchored in the dirt. Our people die too young, and when we go, our people come behind. 546 | JIM FERRIS

APOLOGIA This poem does not need to march across the page. This poem is free to lean and limp and lurch and tap the ground. This poem will just be here, as it claims a place on this page, in this space, in this rolling, stumbling,

stuttering, blinking, fresh and stinking world of great pain and promise: this poem does not explain its shape, its struggles, its joys. Explain yourself, if you like, and that is yours. This poem is home with every poem and with all sparks seeking a place to light. SELECTED POEMS | 547

ENOUGH Instead of putting cotton in my ears to pretend I was deaf, instead of closing my eyes and wearing sunglasses to pretend I was blind, I’d pretend I could walk like my brother, my neighbors, kids at school.

I’d pretend for days, for years, that I walked like everybody else. Someone would always correct me — can he hobble over here and try this on? — but I was persistent, insisting on seeing myself as a regular kid, standing out for my wit, my charm, my intelligence, not my walk. I still pretend — I think of my walking as walking, not something beautiful or unique. Like a poem, it is enough like all the rest to be recognized, but different enough to move me through the world. 548 | JIM FERRIS

LUCKY NUMBER 1. Here be monsters. Wherever here is.

2. When I speak I speak with one voice When I cry I cry with all

3. Poetry makes nothing happen. Line breaks

4. If death be the mother of beauty, the flower is

5. All rules are arbitrary. There are no rules. Violate them and you will be punished.

6. Without you there is no thing

7. At night I dream of picket fences and well-cut diamonds, rows of crosses at Normandy.

8. That’s funnier than a crutch. I mean it.

9. If the world were flat we’d yearn for mountains if the world were dry we’d write the sea

10. Is there something wrong with his eyes? Why won’t he look at me when he talks to me?

11. The map is not the terrain.

All are made things in the eyes of God. SELECTED POEMS | 549

12. Oh St. Francis Galton, cousin to Darwin, father of normal, defender of the bell-shaped curve, pray for us.

From the morons from the imbeciles from the idiots protect us.

From the three generations – wait: we are the generations, judge, judge not – it’s never enough. We take us along wherever we go.

13. Wherever here is.

14. 550 | JIM FERRIS

FOR THE BETTERMENT OF HUMANITY In Boston, by the Mother Church, The Mary Baker Eddy Library For the Betterment of Humanity. This is not fair — the bricks are clean, Though they snag and jounce the wheelchairs. The reflecting pool shimmers in the night. This is not fair — clean lines, sweeping curves, Grace and the golden mean. Charity, prudence, Temperance, all heavenly virtues. This is not fair — nothing is fair. The fit Thrive, and winners require losers. A rising tide Lifts all boats — sediment sinks, scum floats. When the gene pool gets too messy, reflect and purify. The war to end all wars killed millions For the Betterment of Humanity. Save us from the selfless – may they each earn a self. Save us from those who would do good. Efforts to Improve Humanity have killed People like you. Our children waste away.

Something on the plaza catches the white cane’s tip. A carpenter sweeps up sawdust, picks up his tools And limps home.

Blessed are the wayward, for they shall comfort the righteous. Blessed are the righteous, for they know who they are. Blessed are the suckers, for they shall be suckered. Blessed are those who feed the fear, for they shall find nourishment. Blessed are they who deny the past, for the future shall find them. Save us from those who would fix our flaws, You who have so much to answer for, Save us from the righteous healers. But we need the healers — who will stanch Our blood? Who will ease our aches? Who will tell us we are normal after all?

Save us from the tyranny of the norm. Blessed are the unfit, the twisted, the shamed, Blessed are the naked and the nude. Blessed are they who will not get better. Blessed are those who shock the pool. Save us from the saviours, from your saints, From those who know what’s best. Save us from progress — Some day we may Get Better. Till we do, Let me learn to live as if living might matter, SELECTED POEMS | 551

As if we won’t be punished for our hope, trust, love, Save us from ourselves, be fast and true, while we Save ourselves from what’s above, while we Save ourselves, at last, from you. 552 | JIM FERRIS

CLUBBING from which all else deviates, make mine a club sandwich, My foot is a club the universe is a club- the sight of it batters like thing, infinite memberships— the ten fingers ten toes do you really want in a club as long as it’s healthy that accepts members like anything goes, praise for the normal you? Opt out now from this unkempt thank God we’re normal circle with unlimited centers exceptionally normal club (quit thinking in so few dimensions, that seems to start in the head— in this universe all have extension), keep the head of the club level, keep every man a king, the king of clubs, your head down, the competition is all the club will foot the bill, in your head, remember that cute baby every night there’s a line to get in, harp seal— my club is a foot long exactly, or does it start at the foot of the bed, release your inner amputee, or is it a berth, in the club car, send all your clannish limbs to me, my foot was clubbed at birth as long as they are healthy, they but my training has progressed, can keep your phantom pain some the lub-dub heart club requests company, the pleasure of your bequests, send me ten fingers, ten toes, preserve your pious normate face, give or take a foot—our secret handshake, your demure coquette heart tart normally, nobody knows.

Contributors

Clare Barker is Lecturer in English at the guage (University of Chicago Press, 1996), University of Leeds. She is the author of and co-author with Jack Gannon and Jean Postcolonial Fiction and Disability: Excep- Bergey of Through Deaf Eyes: A Photo- tional Children, Metaphor and Materiality graphic History of an American Community (2011) and, with Stuart Murray, co-edited a (Gallaudet University Press, 2007). special issue of the Journal of Literary and Cultural Disability Studies entitled “Disa- Liat Ben-Moshe is a Postdoctoral Fellow in bling Postcolonialism.” the Department of Disability and Human Development at the University of Illinois Cynthia Barounis is a Postdoctoral Fellow at Chicago. Her PhD dissertation examined in Women, Gender, and Sexuality Studies the connections between deinstitutionali- at Washington University in St. Louis. Her zation in the fields of intellectual disabili- work has appeared or is forthcoming in the ties and mental health and the prison abo- Journal of Visual Culture, the Journal of lition movement in the U.S. Liat has written Medical Humanities and the Journal of Lit- on such topics as the International Symbol erary and Cultural Disability Studies. of Access; inclusive pedagogy; academic repression; disability, anti-capitalism and H-Dirksen L. Bauman is Professor of Deaf anarchism; queerness and disability; dein- Studies at Gallaudet University where he stitutionalization and incarceration and serves as Coordinator of the MA program the politics of abolition. in Deaf Studies. He is the editor of Open Your Eyes: Deaf Studies Talking (U of Min- Michael Bérubé is the Paterno Family Pro- nesota P, 2008) and co-editor of Signing the fessor in Literature at Pennsylvania State Body Poetic: Essays in American Sign Lan- University and the author of Life As We guage Literature (U of California P, 2006). Know It: A Father, A Family, and an Excep- Dr. Bauman is also an Executive Editor of tional Child (Pantheon, 1996). the Deaf Studies Digital Journal. Lerita Coleman Brown is Ayse I. Carden Douglas C. Baynton, Associate Professor Distinguished Professor of Psychology and of History at the University of Iowa, is the Director of the Science Center for Women author of Forbidden Signs: American Cul- at Agnes Scott College in Decatur, Georgia. ture and the Campaign Against Sign Lan- Professor Brown’s early work centered on 554 | CONTRIBUTORS

nonverbal behavior (particularly commu- a Guggenheim Fellowship, and The End of nicated toward stigmatized individuals), Normal: Identity in a Biocultural Era. and stigma, identity and self-concept. Her most recent articles include, “Advising a Elizabeth DePoy, who currently holds aca- Diverse Student Body: Lessons I’ve Learned demic appointments in disability studies, from Trading Places” published in Liberal mechanical engineering and international Education and “An Ordinary Mystic: Con- policy, is a recognized scholar in research templation, Inner Authority, and Spiritual and evaluation methods, theory develop- Direction in the Life and Work of Howard ment focusing on disability as disjuncture Thurman,” published in Presence: An Inter- and more recently disability as design national Journal of Spiritual Direction. and branded. Currently, she is conduct- ing collaborative research on contem- Eli Clare, writer and activist, lives in the porary design and fabrication of robotic Green Mountains of Vermont and is the and Internet technology to improve usa- author of a book of essays Exile and Pride: bility of physical and virtual spaces and Disability, Queerness, and Liberation and a resources. collection of poetry The Marrow’s Telling: Words in Motion. Elizabeth F. Emens is a Professor of Law at Columbia University. She earned her G. Thomas Couser retired in 2011 from JD from Yale and her PhD in English from Hofstra University, where he was a Profes- King’s College, Cambridge. She teaches sor of English and founding director of the and writes in the areas of disability law, Disability Studies Program. He is the author employment discrimination, and law and of American Autobiography: The Prophetic sexuality. Mode (Massachusetts, 1979), Altered Egos: Authority in American Autobiography Nirmala Erevelles is Professor of Social (Oxford, 1989), Recovering Bodies: Illness, and Cultural Studies in Education at the Disability, and Life Writing (Wisconsin, University of Alabama. Her book, Disabil- 1997), Vulnerable Subjects: Ethics and Life ity and Difference in Global Contexts: Ena- Writing (Cornell, 2004), Signifying Bodies: bling a Transformative Body Politic, was Disability in Contemporary Life Writing published by Palgrave Macmillan in 2011. (Michigan, 2009), and Memoir: An Intro- She has published articles in journals such duction (Oxford, 2012). He has completed as Educational Theory, Teachers College a memoir of his father and is writing a book Record, the American Educational Research about contemporary American patriogra- Journal, Disability & Society, among others phy (memoirs of fathers). in the areas of sociology of education, disability studies, transnational feminist the- Lennard J. Davis, the editor of this volume, ory, and curriculum studies. is Distinguished Professor of Liberal Arts and Sciences at the University of Illinois at Chi- Jim Ferris is author of The Hospital Poems cago in the Departments of Disability and (2004), Facts of Life, (2005), and Slouching Human Development, English, and Medi- Towards Guantanamo (2011). Ferris has cal Education. He is the author of Enforcing won awards for creative nonfiction and Normalcy: Disability, Deafness and the Body; performance as well as for his poetry. He Bending Over Backwards: Disability, Dis- holds the Ability Center Endowed Chair modernism, and Other Difficult Positions; in Disability Studies at the University of Obsession: A History, for which he received Toledo. CONTRIBUTORS | 555

Anne Finger’s most recent book is a short David Hevey is a British disabled photog- story collection, Call Me Ahab, which won rapher and writer. His book, The Creatures the Prairie Schooner Award and was pub- that Time Forgot, examines the represen- lished by University of Nebraska Press. She tation of disabled people—in advertising, has also written other short fiction, mem- particularly that produced by disability oirs, and a novel. charities, and in the work of photographers such as Diane Arbus and Gary Winogrand. Kenny Fries is the author of The History He shows how such images construct disa- of My Shoes and the Evolution of Darwin’s bled people as “creatures,” the tragic-but- Theory and Body, Remember: A Memoir, as brave objects of the photographic gaze. well as the editor of Staring Back: The Dis- ability Experience from the Inside Out. His Ruth Hubbard is Professor Emerita of Biol- books of poems include Anesthesia and ogy at Harvard University, where she was Desert Walking. He has been a Creative Arts the first woman to hold a tenured pro- Fellow of the Japan/US Friendship Com- fessorship position in biology. She is the mission and the National Endowment for author of The Politics of Women’s Biology the Arts and a Fulbright Scholar to Japan. (1990) and Profitable Promises: Essays on He teaches in the MFA in Creative Writing Women, Science & Health (1995). Program at Goddard College. Georgina Kleege teaches creative writ- Rosemarie Garland-Thomson is Professor ing and disability studies at the University of Women’s Studies and English at Emory of California, Berkeley. Her recent books University. Her fields of study are feminist include Sight Unseen (1999) and Blind theory, American literature, and disability Rage: Letters to Helen Keller (2006). Kleege’s studies. Her work develops the field of dis- current work is concerned with blind- ability studies in the humanities and wom- ness and visual art: how blindness is rep- en’s and gender studies. Her most recent resented in art, how blindness affects the book is Staring: How We Look. lives of visual artists, how museums can make visual art accessible to people who Stephen Gilson, Professor and Coordinator are blind and visually impaired. She has of Interdisciplinary Disability Studies and lectured and served as consultant to art Faculty in International Policy and Admin- institutions around the world including istration, is internationally and nationally the Metropolitan Museum of Art in New recognized for his creative, collaborative York and the Tate Modern in London. scholarship. Bringing an interdisciplinary background as an artist and neuroscientist Steve Kuusisto teaches in the Center on to theory development and policy analy- Human Policy, Law, and Disability Stud- sis, Gilson’s current research interests and ies at Syracuse University. He is the author publications have focused on technology of the memoirs Planet of the Blind and design, disability theory, disability as dis- Eavesdropping as well as two collections juncture, and most recently, disability as of poems, “ Only Bread, Only Light “ and “ design and branding. Letters to Borges “.

Faye Ginsburg is Kriser Professor of Bradley Lewis MD, PhD is an Associate Anthropology at NYU where she is also Professor at New York University’s Galla- Co-Director of the Council for the Study of tin School of Individualized Study. He has Disability. interdisciplinary training is in humanities 556 | CONTRIBUTORS

and psychiatry and writes at the interface low, he co-edited Sex and Disability (Duke, of psychiatry, cultural studies, and disabil- 2012). His articles have appeared in PMLA, ity studies. His recent books are Narrative Radical History Review, GLQ: A Journal of Psychiatry: How Stories Shape Clinical Lesbian and Gay Studies, and numerous Practice and Depression: Integrating Sci- other locations. ence, Culture, and Humanities. Ann Millett-Gallant is an art historian Paul Longmore (1946–2010) was Professor and a lecturing fellow for the University of History at San Francisco State University of North Carolina at Greensboro. Her and winner of the Henry B. Betts Award research focuses on representations of the from the American Association of People disabled body in art and visual culture, and with Disabilities. An activist and a scholar, her book, The Disabled Body in Contempo- he published two key books in disability rary Art (2010) is the first to cross the disci- studies, The New Disability History: Ameri- plines of art history and disability studies. can Perspectives (ed. with Lauri Umansky, She has also published essays and reviews 2001) and Why I Burned My Book and Other of art and film in disability studies journals Essays on Disability (2003). A team of dis- and art magazines. ability historians who benefitted from the field he founded is completing his book on Andrea Minear is Assistant Professor of Telethons. Elementary Education in the Department of Elementary Education at the University Josh Lukin teaches at Temple Univer- of West Alabama. Her areas of expertise are sity. He is the editor of Invisible Suburbs: early childhood literacy, social justice and Recovering Protest Fiction of the 1950s equity in education, and narrative research. United States (UP of Mississippi 2008) and It Walks in Beauty: Selected Prose of Chan- David Mitchell and Sharon Snyder are the dler Davis (Aqueduct Press 2010). authors of Narrative Prosthesis: Disability and the Dependencies of Discourse (Ann Harriet McBryde Johnson (July 8, 1957– Arbor: U of Michigan P, 20000) and Cul- June 4, 2008) was a lawyer, writer, and dis- tural Locations of Disability (Chicago: U of ability activist. Her writing on disability Chicago P, 2006). They are also the creators has appeared in numerous publications of three award-winning films about disabil- including New Mobility, South Carolina ity arts, history, and culture. Together they Lawyer, Review of Public Personnel Admin- helped found the Committee on Disability istration, and the New York Times. She is Issues in the Profession at the Modern Lan- the author of the memoir Too Late to Die guages Association as well as researched, Young: Nearly True Tales from a Life (2005) wrote, and curated a Chicago Disability and the novel Accidents of Nature (2006). History Exhibit for Bodies of Work: Disabil- ity Arts and Culture Festival. Currently, they Robert McRuer is Professor of English and are completing work on a new book titled, Chair of the Department of English at The The Geo-Politics of Disability, and also a pro- George Washington University. He is author ducing a new film on the social and surgical of Crip Theory: Cultural Signs of Queerness issues involved with esophageal atresia. and Disability (NYU, 2006) and The Queer Renaissance: Contemporary American Lit- Anna Mollow is a PhD candidate at the Uni- erature and the Reinvention of Lesbian and versity of California, Berkeley, where she is Gay Identities (NYU, 1997). With Anna Mol- completing a dissertation entitled “The Disa- CONTRIBUTORS | 557 bility Drive: Lesbian Feminist Disability The- the Cultural Studies Book Award from the ory.” She is co-editor, with Robert McRuer, of Association for Asian American Studies. Sex and Disability (Duke UP 2012). Her arti- Her articles appear in Gender, Place, and cles have appeared or are forthcoming in the Culture, Social Text, Radical History Review, Journal of Literary and Cultural Disability Antipode: A Radical Journal of Geography, Studies, Women’s Studies Quarterly, MELUS, Signs: Journal of Women in Culture and and Michigan Quarterly Review. Society, and Feminist Legal Studies. Her edited volumes include a special issue of Joseph J. Murray is a historian whose work GLQ titled, “Queer Tourism: Geographies in Deaf Studies explores transnational of Globalization” and co-edited volumes of interactions among deaf people and the Society and Space (“Sexuality and Space”), intersections between deaf and hearing Social Text (“Interspecies”), and Women’s people in historical perspective. Studies Quarterly (“Viral”). Professor Puar has been awarded the Edward Said Chair Stuart Murray is Professor of Contempo- of American Studies at the American Uni- rary Literatures and Film in the School of versity of Beirut for 2012–13. English at the University of Leeds, where he is also the Director of the interdisciplinary Ato Quayson did his BA at the University Leeds Centre for Medical Humanities. He of Ghana and his PhD at the University of has written widely on issues connected to Cambridge. He is currently Professor of disability representation, and his last book English and inaugural Director of the Centre was Autism (Routledge, 2012). for Diaspora and Transnational Studies at the University of Toronto. His publications Catherine Prendergast is Professor of Eng- include Calibrations: Reading for the Social lish at the University of Illinois at Urbana- (2003), Aesthetic Nervousness: Disability and Champaign. An editorial board member of the Crisis of Representation (2007) and he the Journal of Literary and Cultural Dis- was also editor of the 2-volume Cambridge ability Studies, she is co-editor with Eliza- History of Postcolonial Literature (2012). beth Donaldson of a special issue of that journal on “Representing Emotion and Rayna Rapp is Professor of Anthropology Disability” (2011). at NYU and Associate Chair of the Depart- ment of Anthropology. Faye Ginsburg and Margaret Price is an associate professor of she are currently engaged in a study of cul- writing at Spelman College and co-editor tural innovation and learning disabilities. of reviews for Disability Studies Quarterly. Her book Mad at School: Rhetorics of Men- Ellen Samuels is Assistant Professor of Gen- tal Disability and Academic Life appeared der & Women’s Studies and English at the in 2011 (University of Michigan Press). She University of Wisconsin at Madison. Her is at work on a second book about the nam- critical writing on disability has appeared ing and un-naming of mental disability in numerous journals and anthologies, and among faculty. was awarded the Catherine Stimpson Prize for Outstanding Feminist Scholarship in Jasbir K. Puar is Associate Professor of 2011. Women’s & Gender Studies at Rutgers Uni- versity. She is the author of Terrorist Assem- Marsha Saxton, Ph.D. teaches Disabil- blages: Homonationalism in Queer Times ity Studies at the University of California, (Duke University Press 2007) winner of Berkeley. She is Director of Research and 558 | CONTRIBUTORS

Training at the World Institute on Dis- the Senior Scholar Award of the Society for ability, in Oakland, CA. She has published Disability Studies. extensively about disability rights, women’s health, health care disparities, abuse and Sharon Snyder, PhD, is co-writer along violence prevention and genetic screen- with David Mitchell of Narrative Prosthesis ing issues. She has been a board member and Cultural Locations of Disability. She of the Our Bodies, Ourselves Collective has directed and co-directed films on dis- and the National Institutes of Health (NIH) ability including A World Without Bodies. Ethical, Legal Social Implications (ELSI) Working Group of the Human Genome Ini- Joseph N. Straus is Distinguished Profes- tiative. Her new book is Sticks and Stones: sor of Music at the Graduate Center, City Disabled People’s Stories of Abuse, Defiance University of New York. He is a co-editor and Resilience, www.wid.org/cape. of Sounding Off: Theorizing Disability in Music (Routledge, 2006) and the author Tom Shakespeare is a sociologist and of Extraordinary Measures: Disability in bioethicist. After researching and teaching Music (Oxford University Press, 2011). He at the Universities of Cambridge, Sunder- is a former president of the Society for land, Leeds and Newcastle, he moved to Music Theory. the World Health Organization in 2008. His books include Disability Rights and Wrongs, Cheryl Marie Wade is a pioneer of disa- The Sexual Politics of Disability and Genetic bility arts and culture and one of the first Politics: from eugenics to genome. physically disabled performance artists to gain critical acclaim. Wade used her “crip- Tobin Siebers is V. L. Parrington Collegiate pled” body onstage, along with raw, vibrant Professor of English and Art and Design poetry, autobiographical storytelling and at the University of Michigan. He is the what has been described as “in your face” author of thirteen books, including The narrative, to carve out her particular style Body Aesthetic: From Fine Art to Body Mod- and niche as a performance artist. ification (Michigan 2000), Disability Theory (Michigan 2008), and Disability Aesthet- Susan Wendell is the author of The Rejected ics (Michigan, 2010. Siebers is a past fel- Body: Feminist Philosophical Reflections on low of the Michigan Society of Fellows, the Disability (1996, Routledge). She is Profes- Mellon Foundation, the Columbia Society sor Emerita at Simon Fraser University. of Fellows, and the Guggenheim Founda- She has lived with ME disease (CFIDS) tion. In 2011 he was named the recipient of since 1985.

Credit Lines

[1] Lennard Davis, “Normalcy, Power, and Studies 4.3 (2010): 127–144. Copyright © Culture.” Reprinted by permission. Liverpool University Press. Reprinted with permission. [2] Douglas C. Baynton, “Disability and the Justification of Inequality in Ameri- [6] Ruth Hubbard, “Abortion and Disabil- can History” in The New Disability History: ity: Who Should and Should Not Inhabit American Perspectives, edited by Paul K. the World?” Reprinted by permission. Longmore and Lauri Umansky. Copyright © 2001. Reprinted with the permission of [7] Martha Saxton, “Disability Rights New York University Press. and Selective Abortion.” Reprinted by permission. [3] Paul K. Longmore, “Heaven’s Special Child: The Making of Poster Children.” [8] Michael Bérubé, “Disability, Democ- Reprinted with permission. racy, and the New Genetics” from Genet- ics, Disability, and Deafness, edited by [4] Elizabeth Emens, “Disabling Attitudes: John Vickrey Van Cleve. Copyright © 2004 U.S. Disability Law and the ADA Amend- Gallaudet University. Reprinted with ments Acts.” This chapter is a condensed permission. version of an earlier article by the author which appeared in American Journal of Comparative Law 60 (2012). Reprinted [9] Bradley Lewis, “A Mad Fight: Psychia- by permission. This selection includes an try and Disability Activism.” Reprinted by excerpt from Adrienne Rich, “Powers of permission. Recuperation” from Tonight No Poetry Will Serve: Poems 2007–2010. Copyright © 2011 [10] Liat Ben-Moshe, “The institution yet to by Adrienne Rich. Used by permission of come: Analyzing incarceration through a W. W. Norton & Company, Inc. disability lens,” published in part as (Disa- bling Incarceration: Connecting Disability [5] Clare Barker and Stuart Murray, “Disa- to Divergent Confinements in the USA,” in bling Postcolonialism: Global Disability Critical Sociology 37.7 (2011). Copyright © Cultures and Democratic Criticism” from 2012 by Sage Publications, Inc. Reprinted Journal of Literary & Cultural Disability with permission. 560 | CREDIT LINES

[11] Lerita Coleman Brown, “Stigma: An [19] H-Dirksen L. Baumann and Joseph Enigma Demystified” from The Dilemma J. Murray, “Deaf Studies in the 21st Cen- of Difference: A Multidisciplinary View tury: ‘Deaf-gain’ and the Future of Human of Stigma by Stephen C Ainlay, Gaylene Diversity” in The Oxford Handbook of Deaf Becker, and Lerita M Coleman. Reprinted Studies, Language, and Education, Volume by permission of Plenum. 2. Copyright © 2010 by Oxford University Press. Reprinted with permission. [12] Susan Wendell, “Unhealthy Disabled: Treating Chronic Illnesses as Disabilities” [20] Lennard Davis, “The End of Identity from Hypatia 16.4 (Autumn 2001). Copy- Politics: On Disability as an Unstable Cat- right © 2010 by Hypatia, Inc. Reprinted egory.” Reprinted by permission. with the permission of John Wiley & Sons, Inc. [21] Tobin Siebers, “Disability and the The- ory of Complex Embodiment(For Identity [13] Jasbir K. Puar, “The Cost of Getting Bet- Politics in a New Register” from Disability ter: Suicide, Sensation, Switchpoints” from Theory. Copyright © 2008. Reprinted with GLQ: A Journal of Lesbian and Gay Studies the permission of The University of Michi- 18, no 1 (2011): 149–158. Copyright © 2011 gan Press. by Duke University Press. Reprinted by permission of the publisher, www.duke- [22] Margaret Price, “Naming and Defini- press.edu. tion” from (Introduction” from Mad at School: Rhetorics of Mental Disability and [14] Faye Ginsberg and Rayna Rapp, “Ena- Academic Life. Copyright © 2011 University bling Disability: Rewriting Kinship, Reim- of Michigan. Reprinted with permission. agining Citizenship” from Public Culture This contains excerpts from Johnnie Lacy, 13 (2001). Copyright © 2001 by Duke Uni- “Director, Community Resources For Inde- versity. Reprinted by permission of the pendent Living: An African-American Wom- publisher, www.dukepress.edu. an’s Perspective on The Independent Living Movement in The Bay Area, 1960s–1980s” [15] Ato Quayson, excerpt from Aesthetic (interview conducted by David Landes, Nervousness: Disability and the Crisis 1998) and (Minority vs. Disability Identity,” of Representation. Copyright © 2007 by both from Disability Rights and Independ- Columbia University Press. Reprinted with ent Living Movement Oral History Series (UC the permission of the publisher. Berkeley, 2000). Also excerpts from Donald Galloway, from (Blind Services and Advo- [16] Tom Shakespeare “The Social Model cacy and the Independent Living Move- of Disability.” Reprinted by permission. ment in Berkeley” interviews conducted by Sharon Bonney and Fred Pelka (2000–2002) [17] David T. Mitchell and Sharon L. Sny- in Disability Rights and Independent Living der, excerpt from Narrative Prosthesis: Dis- Movement Oral History Series (UC Berkeley, ability and the Dependencies of Discourse. 2004). All courtesy The Bancroft Library, Copyright © 2001 by The University of University of California, Berkeley. Michigan. Reprinted with permission. [23] Josh Lukin, “Black Disability Studies” [18] Catherine Prendergast, “The Unex- from Temple University) Faculty Herald pected Schizophrenic: A Post-Postmodern 36.4 (February 14, 2006). Reprinted with Introduction.” Reprinted by permission. the permission of the author. CREDIT LINES | 561

[24] Ellen Samuels, “My Body, My Closet: [31] David Hevey, “The Enfreakment of Invisible Disability and the Limits of Com- Photography.” Reprinted by permission. ing-Out Discourse” from GLQ: A Journal of Lesbian and Gay Studies 9, 1–2 (2003): 233– [32] Georgina Kleege, “Blindness and Vis- 255. Copyright © 2003 by Duke University ual Culture: An Eyewitness Account” from Press. Reprinted by permission of the pub- Journal of Visual Culture 4, no. 2 (August lisher, www.dukepress.edu. 2005). Copyright © 2005 by Sage Publica- tions, Inc. Reprinted by with permission. [25] Rosemarie Garland-Thomson, “Inte- grating Disability, Transforming Feminist [33] G. Thomas Couser, “Disability, Life Theory” from National Women’s Studies Narrative, and Representation” from PMLA Association Journal 14.3 (Fall 2002). Copy- 120, No. 2 (March 2005): 602606. Copyright right © 2002. Reprinted with permission. © 2005. Reprinted with permission.

[26] Nirmala Erevelles and Andrea Minear, [34] Joseph N. Straus, “Autism as Culture.” “Unspeakable Offenses: Untangling Race Reprinted by permission. and Disability in Discourses of Intersection- ality” from Journal of Literary & Cultural [35] Elizabeth DePoy and Stephen Gil- Disability Studies 4.2 (2010). Copyright © son, “Disability, Design, and Branding: Liverpool University Press. Reprinted with Rethinking Disability within the 21st Cen- permission. tury” from Disability Studies Quarterly 30.2 (2010). Copyright © 2010. Reprinted with [27] Robert McRuer, “Compulsory Able- permission. Bodiedness and Queer/Disabled Exist- ence” from Disability Studies: Enabling [36] Eli Clare, “Stones in My Pockets, the Humanities, edited by Rosemarie Gar- Stones in My Heart” from Sojourner: The land Thomson, Brenda Jo Brueggemann, Women’s Forum (November 1996). Copy- and Sharon L. Snyder. Copyright © 2002. right © 1996. Reprinted with the permis- Reprinted with permission. sion of South End Press. [28] Cynthia Barounis, “Crippling Het- erosexuality, Queering Able-Bodiedness [37] Harriet McBryde Johnson, “Unspeak- Murderball, Brokeback Mountain and the able Conversations” from The New York Contested Masculine Body.” Reprinted by Times Magazine (February 16, 2003). Copy- permission. right © 2003 by The New York Times Com- pany. Reprinted with permission. [29] Ann Millett-Gallant, “Sculpting Body Ideals: Alison Lapper Pregnant and the [38] Anne Finger, “Helen and Frida” from Public Display of Disability” from Disabil- The Kenyon Review 16, no. 3 (Summer, ity Studies Quarterly 28:3 (Summer 2008). 1994): 17. Copyright © 1994 Kenyon Col- Reprinted with the permission of the lege. Reprinted with permission. author. [39] Cheryl Marie Wade, “I Am Not One of [30] Anna Mollow, “When Black Women The” and (Cripple Lullaby.” Reprinted with Start Going on Prozac. . .’: The Politics of the permission of Cheryl Marie Wade. Race, Gender, and Emotional Distress in Meri Nana-Ama Danquah’s Willow Weep [40] Kenny Fries, “Beauty and Variations.” for Me.” Reprinted by permission. Reprinted by permission. 562 | CREDIT LINES

[41] Steve Kuusisto, excerpts from Planet Press. “From the Surgeons: Drs. Sofield, of the Blind: A Memoir. Copyright © 1997 Louis, Hark, Alfini, Millar, Baehr, Bevan- by Steve Kuusisto. Used by permission of Thomas, Tsatsos, Ericson, and Bennan” The Dial Press/Dell Publishing, a division and “Normal” from The Hospital Poems of Random House, Inc. (Charlotte, North Carolina: Main Street Rag, 2004). “No Sugar, No Milk” from [42] Jim Ferris, “Poems with Disabili- Slouching Toward Guantanamo (Char- ties,” “High Concept,” “Facts of Life,” lotte, North Carolina: Main Street Rag, “Apologia,” “Enough,” and “Poet of 2011) and “Lucky Number,” “For the Bet- Cripples” from Facts of Life (Madison: terment of Humanity,” and “Clubbing.” Parallel Press/University of Wisconsin, All reprinted with the permission of the 2005). Reprinted by permission of Parallel author.

Index

abandonment 190, 198–9 affective politics 179–81 ability: and debility 177–84; ideology of affective turn 181 278–81, 294 African Americans see black Americans ability/disability system 333–4, 335, 336–7 Agar, N. 110 ability to pass 170, 289, 321–3, 347 aggression 156 ability trouble 390–1 Ahluwalia, P. 63 abjection 422 AIDS and HIV 163, 391–2, 457 able-bodied heterosexuality 370–3 Ainlay, S. 151, 152–3 able-bodiedness, compulsory 346, 369–78, Alcoff, L. M. 281–2, 283 382 Alison Lapper Pregnant (Quinn) 398–410 ableism 117 Alison’s Baby 405 abolitionism 138–40 Alliance for Human Research Protection abortion 74–86, 104–5, 189; disability-positive (AHRP) 128 identity vs selective abortion 89–91; Alternatives Conference 121, 122, 125 disability rights and 87–99; eugenics American Civil War 311–12 and 75–81; feminist disability theory 342–3; American Disabled for Accessible Public prenatal testing and 74, 81–6, 87–99; Transit (ADAPT) 348 problems with selective abortion 85–6 American Revolution 311 absolute pitch (AP) 472, 480 Americans with Disabilities Act 1990 academic activism 350–1 (ADA) 42, 54, 87, 90, 97, 186, 192, 264, 457, academic discourse, sign languages and 490; antidiscrimination 48, 49; backlash 249–50 against 264, 271–2; bidisability 50, 51; accommodation 46–7; of chronic bipartisan support for 111; definition illnesses 167–9; denied to non-visibly of disability 44, 46; Galehead mountain disabled people 326; distinguishing from hut 293–4 antidiscrimination 47–50 American Psychiatric Association (APA) 26, activism 216; and accommodating chronic 115, 124, 134 illness 167–8; disability and blackness American Society for Reproductive 308–11; feminist disability theory 337, Medicine 270 348–51; psychiatry and disability amniocentesis see prenatal testing activism 115–31 Amundson, R. 161 ADA Amendments Act 2008 (ADAAA) 42–57, An Early Frost 376 490 analogy 464, 477; homosexuality–disability administrative model 445 analogy and coming out 316–19; mapping adoption 195 analogies 318; race–disability 311–12, 412; advertising 22, 196 race–sex 317–18 aesthetic nervousness 202–13 Anderson, S. 224 aesthetic surgery 340–1 anencephaly 83 564 | INDEX

Angel (Lapper) 406–7 Badinter, E. 490 animal studies 183 Baecque, A. de 233–4 Animal’s People (Sinha) 71 Baer, E. 78 anti-abortion groups 94 Baldwin, J. 312 anticategorical analysis 354, 356 Bannet, E. T. 318 antidepressants 414, 425 Barbarin, O. 151 antidifferentiation approach 52 Barbie 344–5 antidiscrimination 47–50 Barnum, P. T. 22 Antin, E. 406 Baron-Cohen, S. 477 anti-psychiatry literature 120, 121 barrier-free utopia 219–20 antisubordination model 51–2 Bartmann, S. (the Hottentot Venus) 337 Antonetta, S. 303 bastards 210 Anzaldúa, G. 328 Batavia, A. 515 apartheidists 287–8 Baudrillard, J. 237 ‘Apologia’ (Ferris) 545 Bauman, Z. 274 Appalachian Mountain Club 293–4 ‘bearded woman’ 338 appearance 28; feminist disability theory beauty 28, 207, 399; feminist disability 339–44; see also beauty theory 339–40; normality and 340–1; Arbus, D. 432, 433, 434–9, 444, 445 see also appearance architecture 250–1 ‘Beauty and Variations’ (Fries) 528–9 Arendt, H. 81 Bebian, A. 249–50 Aristotle 12, 231, 298, 337 Beckett, S. 211, 212, 240 art: autistic 471–2; public 398–410 Becky 344–5 Artaud, A. 240, 252 Bedouin community 253 Arthritis Telethon 36 behavioural problems 360–4, 365 As Good As It Gets 373–4 Bell, A. G. 4 Asch, A. 343 Bell, C. 313 Ashcroft, B. 63 bell curve 3, 4 ASL 249 Beresford, P. 420, 421, 426 Asperger, H. 460, 471 Berger, J. 69, 441–3 Asperger’s Syndrome 461, 464, 477 Berkeley Center for Independent Living 310 Aspies for Freedom 303 Berlant, L. 177, 179–80, 187 assisted suicide 343, 507, 515–16 Bérubé, M. 194, 195, 311, 372 Assistive Technology Act 490 Bettelheim, B. 463, 476 asylums 117–18 Beyond Brown: Pursuing the Promise 357–8 asymmetry, in disability law 51–4 Bhopal disaster 71, 72 Athena 407 bidisability 50–1 athletes: female disabled 386–8; Biklen, D. 479 Murderball 382–9 bilingual sign-language schools 249 atmosphere-thickening occupants of binary gender system 500 space 453 Binding, R. 79–80 attitudes 42–57 biocultural diversity 246–7 Auslander, P. 480 biocultural model of autism 465–6 autism 303, 457, 460–84; autism culture biomedical research, cloning for 108–10 466–73; claiming 473–5; construction biopsychiatry 122–8 of 461–2; and the culture of medicine biotechnology 100–14 463–6; rise of 461 Bird, A. 137 autism clock 303, 306 birth control movement 89 autobiography 456–9; autism 469–70, 479 bisexuality 51 autoethnography 458 black Americans: disability and blackness average citizen 205 308–15; masculinity and disability 395; average man 2–3 poster children 36–7; slavery see slavery avoidance 154–5 Black Panther Party 310 Blackburn, E. 109 ‘Baby Doe’ cases 90 Blade Runner 102 ‘bad objects’ 226, 235 blame 170 INDEX | 565

Blanchot, M. 147 Cage, J. 240 Bleuler, E. 475 Calhoun, J. C. 20 blindness: futuristic image of 455; Kuusisto, California 83–4 Planet of the Blind 530–6; and visual Cameron, C. 317–18, 319 culture 447–55 Campbell, F. K. 68 ‘Blue Tulips’ flyer 193–4 Campus Pride 178 Bly, R. 531 Canguilhem, G. 234 Board of Trade (UK) 3 capacity, states of 179–81 Board of Trustees of the University of Alabama capitalism 242–3; industrial 371 v. Garrett 48–9 care: about the body 274–5; feminist ethic body: design and 488; disjuncture theory of 343–4; for the body 274; of the body 486–7; feminist disability theory 273–4 337, 339–44; new ethics of the body 271, caregiving: kinship and 190–2, 198, 199; 273–5; physiognomy of disability 229–32; dependent care industry 274; women’s reclaimed 502–3; sculpture of Alison role 95, 96 Lapper Pregnant 398–410; stolen 502; Carmel, E. 437 technotopic 385, 394; theory of complex Carolina Legal Assistance (CLA) 360 embodiment 288–95 Carrara marble 400 body braces 339–40 Carrigan, A. 70 body/mind split 223, 302 Cartwright, S. 20 Boone, P. 34–5 Castells, M. 283 border identities 328–9 castration 360 Bordo, S. 338 category crises 324–6 Born on the Fourth of July 382 Cavill, K. 383 Boswell, H. 499 Center for Mental Health Services Bosworth, P. 435 (CMHS) 121, 125; budget cuts for consumer/ Bracken, P. 302 survivor assistance centers 125, 126, 127 Braidotti, R. 237 central coherence 463, 476–7 brain 464–5 central precepts of disability studies 313 branding (disability design and) 488–91 Certeau, M. de 226–7 branding (marking) 150 CFIDS 320, 330 breast cancer 268, 341, 457 Chamberlin, J. 119, 126, 127 Breast Cancer Fund 341, 348 Chandler, H. 35 breasts, female 341 charity: advertising 432; model of Britannia 407 disability 264; telethons 34–41 British Council of Organisations of Disabled Charles, R. 450 People (BCODP) 215 chemical imbalances theory 124 British Medical Journal (BMJ) 127 Chew, K. 469 Brokeback Mountain 381, 382, 388–93 Child of Our Time 405 Brooks, G. 312–13 children: kinship and caring for children with Bryen, D. 313 disabilities 185–201; poster children 34– Buck v. Bell 89 41; sexual abuse of 499, 500–1; and budget cuts 125, 126, 127, 241 stigmatization 150–1 buffer zone 50–1 Christmas Carol, A (Dickens) 34 built environment 294; deaf space 250–1; chronic illness 300–1; accommodating 167–9; design 487 treating as disability 161–73 Bumpurs, E. 354–5 CIGNA 300 Burch, G. I. 89 citational politics 422 Burgin, V. 440, 442 citizenship 17; kinship and enabling Burke, C. 196 disability 185–201; participatory 62–4, 71–2 Burke, E. 18 civil rights 214, 216, 274–5; model 264 Burstow, B. 139 Civil Rights Act 1964 Title VII 48, 51 Bury, M. 220 Civil Rights of Institutionalized Persons Bush triple play 124–8 Act 360 Butler, J. 264, 282, 331, 372–3, 374, 422 Clare, E. 161–2, 319, 497–506 Bynum, C. W. 346 Clarke, E. 23, 24 566 | INDEX

class 364, 365 cultural locations 65 Clementi, T. 177–9 cultural logic of euthanasia 462, 476 cloning 108–10, 279 cultural model of disability 65 close reading 213 culture: autism culture 466–73; blindness ‘Clubbing’ (Ferris) 549 and visual culture 447–55; deaf collectivist Coetzee, J. M. 211, 212 culture 254; dominant 326–7; kinship and cognitive diversity 246–50 enabling disability 192–3; normality, power cognitive processing, stigma as a form of and 1–14; situating disability cultures 67–9 151–3 cuneiform tablets 226, 232 cognitive psychology 463 cure 162, 272; ideology of 342; medical coherence: central 463, 476–7; local 467–8 model of autism and 465; pride, prevention collectivism 254 and 170–2 college campus cultural houses 53 Curtis, G. W. 25 Collins, P. H. 356 cutbacks to services 125, 126, 127, 241 combat, language of 383–4 cybernetics 278 coming out 316–32, 347, 503–4 cyberstalking 178 Commerson, R. 255 cyborgs 385 communication 463–4 cystic fibrosis 269, 270 community 254, 305 community mental health centers 135 damage imagery 22–3 community residential services 135 Dana, C. L. 24 compensatory facilities 470–1 Danquah, M. N.-A. 313; Willow Weep for Complete Marbles, The (Quinn) 398, 399–400, Me 411–31 408 Danto, A. 454 complex embodiment, theory of 288–95 Dart, J. 126 compulsory able-bodiedness 346, 369–78, 382 Darwin, C. 3 compulsory heterosexuality 346, 369–70, 375, Davenport, C. 6–7, 76 375–6, 382 Davidson, M. 66–7 concentration camps 81 Davis, A. Y. 139, 140 Conference on Human Rights and Psychiatric Davis, D. 124 Oppression 120, 122 Davis, L. J. 28, 53, 62, 203, 205–6, 207, 235, 358, conjoined twins 341 412, 476, 486–7 Conrad, J. 10–11, 206 DAWN home-school co-operative 360–1, 363 constitutive analysis 354, 357 deaf-gain 246–60; cognitive diversity and consumer/survivor/ex-patient (c/s/x) 246–50; creative diversity and 246–7, 250–2; movement 121, 299–300, 301–2, 413–14 cultural diversity and 246–7, 252–4 contingency 203–4 deaf space 250–1 control: patriarchal 94–6; social 157, 181–2 deaf walk 254 Convention on the Rights of Persons with deafness 4, 91, 107–8; as culture rather than Disabilities (CRPD) 44, 490, 491 disability 377; deaf-gain see deaf-gain; corsets 340 intersectionality of race and disability cosmetic surgery 340 359–60, 364 cost-benefit analysis 93 death 156; slow death 177, 179–80 Count Us In: Growing Up with Down Syndrome debility 177–84 (Kingsley and Levitz) 458 debt, and debility 181 Craik, D., Olive 9 deconstruction of the social model 418–24 creative diversity 246–7, 250–2 defective class 7, 19 Crenshaw, K. 355–6, 356–7 deficiency, language of 338 ‘Cripple Lullaby’ (Wade) 527 deficit model of disability 358 critical psychiatrists 121–2 definitions of disability: ADA 44, 46; ADAA Critical Psychiatry Network 122 45–7; social model 215–16 critical race feminist (CRF) theory 354–5 deformation 205–7 Crosby, F. 151, 152–3 dehumanization 135–6 Crow, L. 165, 166, 217 deinstitutionalization 134–5, 138–40, 192 cultural branding 488 Del Rio, D. 523 cultural diversity 246–7, 252–4 Deleuze, G. 236–7, 238, 240 INDEX | 567 deliberative democracy 100 disjuncture, disability as 486–7 democracy 71–2; disability and the new dismodernism 273–6 genetics 100–14 disruption 203 Department of Applied Statistics (UK) 6 diversity 52–4; cognitive 246–50; Department of Health, Education and Welfare creative 246–7, 250–2; cultural 246–7, 252–4; (HEW) 309 and deaf-gain 246–55 dependent care industry 274 DNA analysis 266 DePoy, E. 489 Do Androids Dream of Electric Sheep? depravity 7 (Dick) 102 depression 182; and the social model 415–18; domesticity, heterosexual 390–1, 396 Willow Weep for Me 411–31 dominant culture 326–7 Derricotte, T. 322, 323 dominant diseases 82 Descartes, R. 448 double bind 415, 426 design 485–93; definitions 491–2 double dominance 91 determinism 9–10 Douglass, F. 25 developing countries 252–3, 272, 274–5 Down syndrome 19, 107–8; Arbus’s Devi, M., ‘Shishu’ 68–9 photographs of people with 439; mediation diabetes 163 of disability 194–6 Diagnostic and Statistical Manual of Mental drapetomania 20, 298 Disorders (DSM) 304, 461, 463–4 dress, and butch identity 504–5 dialectical interplay 206–7 Dreydoppel Soap 22 Dick, P. K. 112; Do Androids Dream of Electric Duffy, M. 405 Sheep? 102 Dunn, K. 224 Dickens, C., A Christmas Carol 34 Durgin, P. 304 Diderot, D. 448–50 dwarfism 91; Arbus’s photography 436, 445 difference: identifiability and 285; narrative Dworkin, G. 284, 285 prosthesis 228; stigma and 149–50 Dworkin, R. 284, 285 differential and pejorative treatment 284, Dysaesthesia Aechiopis 20–1 285–6 dystopias, neoeugenic 197 differential power 284, 285 Dirlik, A. 67 Easter Seals 34–5, 36, 37, 38 disability/ability system 333–4, 335, 336–7 ecologies of sensation 178 Disability Alliance 214 education 23–4; intersectionality, exclusion Disability Discrimination Act 1995 (DDA) and 360–4 (UK) 217 Egoyan, A. 224 disability embedded policy 489–91 Eiesland, N. 348 disability essentialism 411–13 electroshock treatments 119 disability explicit policy 489–91 Elgin Marbles, The 399 disability implicit policies 489 elimination, prevention and 342 disability industry 274, 489 Eliot, T. S. 206 disability market, spending power of 349 Ellis, K. 103 disability narratives see narrative Elshtain, J. B. 108, 112–13 disability park 489 embodiment 133; theory of complex disability-positive identity 89–91, 291 embodiment 288–95 disability pride 170–2, 220 Emmerik, W. 251 Disability Rag, The 197 empathy 449–50 Disability Rights Commission 408 employment/workplace 168–9 disability rights movement 30, 220, 264, 308; enabling environment 219–20 and selective abortion 87–99 enfreakment, photography and 432–46 disability simulations 292–3 Enlightenment 273, 281 disability–sublime continuum 208 ‘Enough’ (Ferris) 546 disabled femme identity 328–9 environment: barrier-free utopia 219–20; Disablement Income Group 214 built 250–1, 294, 487; disjuncture disease: dominant and recessive diseases 82; theory 486–7; trauma, disablement and gene markers and 268; signs of 419; see also 69–71 illness Erevelles, N. 314, 359 568 | INDEX

‘error theory’ 2, 3, 4–5 Milk’ 544; ‘Normal’ 541; ‘Poems with essentialism 252, 265, 266–8; disability Disabilities’ 537; ‘Poet of Cripples’ 540 essentialism 411–13; gender 413; fetus, humanness of 93–4, 108 strategic 269 Fighting Autism 303 ethic of care, feminist 343–4 film 225, 520–5; disability, homosexuality and ethical test for minority identity 284, 287–8 masculinity 381–97; film language and sign ethnicity 267; immigration policy 26–30 languages 250 eugenics 75–81, 136, 343; and the birth financial expropriation 181 control movement 88–9; genetics and Finger, A. 103; ‘Helen and Frida’ 520–5 democracy 110–11; Germany 7, 75, 77–81, fingerprinting 4 84, 85, 99; identity politics 266, 269–70; Finkelstein, V. 214, 215, 219, 445 intersection of race and disability 359, 365; first-time social encounters 203–4 normality, power and culture 3–8; and first-wave identity struggles 263–4 reproductive freedom 94–6; rise of in Britain Fischer, E. 78 and the US 75–7 Fiske, S. T. 337 Eugenics Record Office 76 504 Group 309–10 Europe 64 fixity of focus 468 euthanasia: assisted suicide 343, 507, 515–16; Flaubert, G., Madame Bovary 8–9 cultural logic of 462, 476; eugenics 79–81 Florida jails 289–90 Evans, D. 194 ‘For the Betterment of Humanity’ (Ferris) 548 Evans, E. C. 231 Forry, S. 21 evidence-based treatment protocols 127–8 Foster, L. G. 190 evolution 3–4 Foucault, M. 136, 137, 181, 275–6, 282, 326, exceptionality 228 420, 421–2 executive function 463, 477 Fox, M. 253 existential ontology 281–2 frames 204 expectations, lowered 154–5 Frank, L. R. 118–19 experiments on Nazi eradication victims 81 Fraser, M. 399 exploitation 402–3 Fraser, N. 282 extermination campaign 79–81 freak shows 402 freedom, slavery and 20–3 fabulous (importance in queer politics) 374 French, S. 217 ‘Facts of Life’ (Ferris) 543 French Revolution 18 Familial Dysautonomia (FD) 196–7 Freud, S. 8, 239–40, 281 family initiatives 97 Freudian psychotherapy 463 Family of Man exhibition 433–4, 441 Frey, D. 242–3 fashion modeling 348–50 Friedlander, L. 434 fatigue 166–7 Fries, K., ‘Beauty and Variations’ 528–9 Faulkner, W. 224 Frisch, W. 79 fear 150, 151, 155–6, 157 Frith, U. 471, 476–7 feeblemindedness 6, 26, 27; see also mental ‘From the Surgeons’ (Ferris) 538–9 disability Fundamental Principles of Disability 215 feedback 474 femininity 497–8 G6PD 267 feminism 333–4; and ignoring Gage, C. 320 impairment 166; integrating feminist theory Gage, M. 25 with disability studies 333–53; second- Galehead mountain lodge 293–4 wave 264; sex/gender distinction 216, 218, Gallaudet University: Deaf Space project 250; 219, 347 Science of Learning Center 248; Vision femme lesbians 323–9 Statement 247 Ferris, J. 537–49; ‘Apologia’ 545; Galloway, D. 310–11 ‘Enough’ 546; ‘Clubbing’ 549; Galton, F. 3–5, 7, 75 ‘Enough’ 546; ‘Facts of Life’ 543; ‘For the Gandhi, M. 118, 153 Betterment of Humanity’ 548; ‘From the Garden State Equality 178 Surgeons’ 538–9; ‘High Concept’ 542; Garland-Thomson, R. 30, 62, 202–4, 235, 308, ‘Lucky Number’ 547; ‘No Sugar, No 320, 358, 384–5, 387, 412, 416, 462, 466, 476 INDEX | 569

Gartler, S. 267 Hacking, I. 268, 271, 298, 477–8 Gattaca 101–4, 110 Hahn, H. 30, 50 gaze 347; male 387 Haiti earthquake 70 gay youth suicides 177–84 Halberstam, J. 385, 394 Geller, G. 343 half-brothers 210 gender 18, 267; ambiguity 497–506; Hall, K. Q. 401 justification of inequality in American Haller, M. D. 393–4 history 17, 18, 23–6; politics of race, mental Halperin, D. 422 illness and in Willow Weep for Me 411–31; Hamilton, A. 322–3, 331 sex/gender distinction 216, 218, 219, 347 Haney Lopez, I. F. 358 gender essentialism 413 Haraway, D. 385 gene therapy 272 hard kernel 224, 235 General Register Office (UK) 3 Harlow, J. 521 genetic counselling 190 Harris, A. P. 355, 413 genetic defects 269–71 Hastings Center Report 104 genetic engineering 269–70 Hattersley, R. 409 genetic health courts 78 healing 185 genetic testing 269–71, 343; see also prenatal healthcare: access to 413–15, 424; costs of testing 198 genetics 268; autism and 464–5, 477, healthcare industry 274 478; disability, democracy and the new ‘healthy disabled’ 162–3, 300–1 genetics 100–14; and race 266–7 Heart of Darkness (Conrad) 11 Gerland, G. 468, 469 Hebrew Sheltering and Immigrant Aid Germany 75; eugenics 7, 75, 77–81, 84, 85, 99 Society 29 get well cards 342 HeLa cells 266–7 Gibbons, F. X. 157 ‘Helen and Frida’ (Finger) 520–5 Gibson, L. 241–2 heredity 9–10; see also genetics Gil, R. 405 Herndl, D. P. 341 Gill, C. 515 heroism 403–4, 409 Gilman, C. P. 25 heteromasculinity 382–8 Gilroy, P. 276 heterosexual domesticity 390–1, 396 Gilson, S. 489 heterosexuality: able-bodied 370–3; Ginsberg, A. 251 compulsory 346, 369–70, 375, 375–6, 382 globalization 64–7 hibakusha (explosion-affected people) 70 Glover, J. 106 Hiddinga, A. 251 goddess imagery 407 Higginson, T. W. 311–12 Goffman, E. 120, 135, 147, 148 ‘High Concept’ (Ferris) 542 Golden, J. 252 Hillyer, B. 344 Goldman, E. 6 Hitler, A. 7 Goodnough, A. 289–90 HIV and AIDS 163, 391–2, 457 Goodwin, G. 23 Hoche, A. 79–80 Gould, G. 473, 480 Hoffman, C. 395 Grandin, T. 467–8, 469, 470, 471, 474–5 Hogarth, W. 35 Gravink, J. 294 Hogeland, L. M. 317 Gray, J. 450 Hogsett, S. 383, 385 Graybill, P. 251 Holt, D. B. 488 Green, W. 29 homeland for deaf people 251 Greenblatt, S. 47 homophobia 50 Grillo, T. 317, 412 homosexuality 26, 268, 503–6; compulsory Grobe, J. 425 able–bodiedness and queer/disabled Grosz, E. 229–30 existence 369–78; disability–homosexuality group awareness 284, 286–7 analogy 316–19; disability and masculinity Guattari, F. 236–7, 238, 240 in films 381–97; femme lesbian 323–9; gay Guthrie, W. 82 youth suicides 177–84 Guyot, A. 22 ‘Hottentot Venus’ 337 gypsies 81 Howey, N. 319 570 | INDEX

Hubbard, R. 92, 105–6 infanticide: passive 194; selective 507, 509–11, Hull, P. 399 517–18 Human Genome Project 266, 269, 279, 343 infectious mononucleosis 163 human rights 274–5 inferiority, and superiority 149 humanism 63–4 Ingstad, B. 68 Humphrey, J. C. 169–70 Insane Liberation Front, Portland Oregon 119 hunger strike 115, 123, 123–4 institution-industrial complex 136 Hunt, P. 214 institutionalization 132–43, 161, 192; Huntington’s disease 82–3 connection with imprisonment 135–40 Husson, T.-A. 450–1 instrumentalism 205 Huxley, J. 75–6 integration 312, 334 ‘Hypothetical Blind Man’ 447–50, 453, 455 intellectual tolerance 350–1 intelligence 20 ‘I Am Not One of the’ (Wade) 526 intercategorical analysis 357; of ideal, the 2, 5 intersectionality 364–6 ideal bodies 339 interlocution, skeptical 212 identifiability 284, 284–5 International Classification of Functioning, identity: coming out 316–32, 347, 503–4; Disability and Health 221 disability-positive identity 89–91, 291; International Sign (IS) 253 disability as an unstable category 263–77; Internet surveillance 178 feminist disability theory 337, 344–8; intersectionality 12; intercategorical analysis gender ambiguity 497–506; intersectional of 364–6; theory of complex embodiment identity and the theory of complex and intersectional identity 291–3; embodiment 291–3; minority identity as untangling race and disability 354–68; in theory 281–8; postcolonialism and 66; Willow Weep for Me 411–31 sexual orientation–disability analogy 316–19; Intersex Society of North America (ISNA) 348 theory of complex embodiment and social intersexuals 267; surgical reassignment 341 construction 293–5; waves of struggle to intimacy 187 establish 263–4 intracategorical analysis 354, 356–7 ideology: of ability 278–81, 294; of cure 342 invisible disability: chronic illness 169–70; and illness 390; chronic 161–73, 300–1; see also coming out 316, 319–29 disease involuntary mental hospitalization 120 imagery: damage imagery and black Iraq War veterans 387–8 Americans 22–3; oppressive disability Irvin, C. 197 imagery 432–46 immigration policy 26–30 James, J. 311–12 Immigration Restriction Act 1924 27, 76, 77 Jameson, F. 237, 240 immortal cell line 266–7 JanMohamed, A. 284 impairment 265, 271, 276, 418–19; chronic Januszczak, W. 400, 402 illness and 164–7; depression and the Japan 70; Japanese literature 225 social model 415–18; distinction from Jewish Giant at Home with his Parents in the disability 216, 218–19; neglect by the social Bronx, N.Y. 1970 (Arbus) 437–9 model of disability 217–18 Jewish Immigrants’ Information Bureau 29 imprisonment see prisons Jews 81, 285 In the Gloaming 376 Jim Crow laws 285, 365 incarceration 132–43, 360, 364, 366 Johnson, C. S. 23 inclusion 190–1, 192 Johnson, H. McBryde 132, 457–8; visit to Independent Living Movement 310 Princeton University hosted by Singer 507–19 individualism 116–17 Johnson, M. 197, 327 Individuals with Disabilities Education Act Jones, A. 127 1975 (IDEA) 192 Jones, M. 320, 322, 331 industrial capitalism 371 Joyce, J. 206 ‘Industrial Society and its Future’ (‘Unabomber justification of inequality 17–33 manifesto’) 241 inequality, justification of in American Kaczynski, T. 241 history 17–33 Kahlo, F. 520–5 INDEX | 571

Kanner, L. 460, 464, 475 Lewiecki-Wilson, C. 303–4, 305 Kant, I. 207, 531 Lewis, B. 299, 302–3 Kass, L. 108–9 Lewis, J. 34, 37, 41 Keller, H. 451, 453, 520–5 Leyland, M. 393 Kendrick, D., ‘20/20 with a Twist’ 455 liberal eugenics 111 Kennedy, F. 80 Liberation Network of People with Kennedy, Justice 47, 48–9, 52 Disabilities 215 Kesey, K. 224 Life Goes On 196 Kierkegaard, S. 273 life writing 456–9 Killens, J. O. 312 linguistic diversity 246–7 Kimmel, M. 394 Linton, S. 305, 314, 336, 478–9 Kingsley, E. 195 literature: aesthetic nervousness 202–13; Kingsley, J. 195 blackness and disability 311–14; narrative kinship 185–201; limits of 190–2; prosthesis 208–10, 222–35; novels 8–12, mediated 197–8; rewriting 187–90 205–7; poetry see poetry; representation of Kiss (Quinn) 408 disability 222–35; sign language 251–2 Kittay, E. 343–4 Little, J. 488 Kleege, G. 320–1, 322 ‘Little People’s Convention, The’ 445 Kraditor, A. 24 Lloyd, D. 284 Krauthammer, C. 108 local coherence 467–8 Krip Hop Nation 313 locations, cultural 65 Kuntze, M. 249 logo, disability as 488–9 Kuppers, P. 237–8, 243, 300 London Foundling Hospital 35, 40 Kushner, T. 374 Longmore, P. 225 Kuusisto, S., Planet of the Blind 530–6 Lord Jim (Conrad) 10–11 Kymlicka, W. 490 Lorde, A. 341 Lubjano, B. 383, 388 Lacan, J. 236, 240, 244 ‘Lucky Number’ (Ferris) 547 Lacks, H. 267 lupus 163 Lacy, J. 308–9, 309–10, 311 Lyme disease 163 LaGuardia, F. H. 26 Lyon, J. 194, 195 Laing, R. D. 120 Lambert, G. 444 MacKenzie, D. A. 3, 5 Lamm, N. 320 MacLean, R. 243–4 Lane, G. 289 MacPhee, B. 243 language 182–3; cognitive diversity and mad movement 298–9 deaf–gain 247–9; film language 250; Mad Pride 115–31, 298; birth of the sign languages see sign languages; visual movement 117–20; contemporary 121–2; language 248–9 recent struggles with psychiatry 122–8 Lapper, A.: Alison Lapper Pregnant 398–410; Madame Bovary (Flaubert) 8–9 Angel 406–7; art by 405–7; Untitled 405–6 Madness Network News 120, 122 Latour, B. 124 Magee, B. 451–3 Laughlin, H. W. 76, 77 Magner, L. 24 law see under individual Acts Mairs, N. 346 Lawson, W. 468 Make-A-Wish Foundation 196 learning, visual 248–9 male gaze 387 learning disabilities 6, 12; defining mental ‘mammy’ figure 422–3 disability 298–307; immigration policy 26, Mann, T. 206 27 mapping analogies 318 Lentz, E. M. 251 March of Dimes 1949 poster 342 Lenz, F. 78 Marcus, N. 305 lesbian continuum 369, 376; see also Marks, D. 304 homosexuality Marx, K. 3, 6 lesbian-femme identity 323–9 masculinity 381–97 Lester, J. C. 282 master status 152 Levitz, M. 195 materiality of metaphor 222, 232–4 572 | INDEX

Mathieson, T. 139 mind, theory of 463, 477 McBryde Johnson, H. see Johnson, H. McBryde mind/body split 223, 302 McCabe, C. 239–40 MindFreedom 128, 298–9 McCall, L. 356 minorities 66, 214 McDonagh, P. 480–1 minority identity, as theory 281–8 McGuff, D. 488 Mitchell, D. 62, 65, 179, 203, 208–10, 238–9, McRuer, R. 51, 64–5, 70, 132, 179, 308, 346, 242 381–2, 390–1 Mitchell, W. J. T. 447, 448, 454 MDA 34, 36, 37, 38, 41 mixed race 267 media 255; television 195–6, 225 model schizophrenics 239–40 mediated kinship 197–8 Mohr, J. 441–3, 444 mediation of disability 193–6 Mollow, A. 313 medical-industrial complex 177 Molyneux question 448 medical inspections for immigrants 26–7, 28–9 monstrosity 18, 338 medical model of disability 92, 133, 161–2, 216, Montaigne, M. E. de 224 264, 290, 423; autism 461–2, 463–6, 467 Montgomery, C. 305, 325, 331 medicalization 116–17 Moore, L. 313 medicalized investment 238–9 Morales (The Mexican Dwarf in his Hotel medicine: epistemic shift 419; feminist Room) 436–7, 439 disability theory 339–44; neonatal 189, 192, Morris, J. 166, 217 194; technological advances 189–90, 191; Morrison, L. 121, 299–300, 301–2 see also new reproductive technologies Morrison, T. 211 (NRTs), prenatal testing motherhood 401 medico-judicial discourse 136 Mott, L. 25 MELUS 314 Mouth and Foot Painting Artists’ Association of Melville, H. 224 England (MFPA) 405 Mengele, J. 81 Mullins, A. 349–50 mental disability, defining 298–307 multiculturality 265 mental health 300 multiple sclerosis (MS) 163–4 mental health insurance 300 multiple senses, theory of 453 mental health screening, nationwide 127 Mulvey, L. 387 mental hospitals 135 Murderball 381, 382–9, 393 mental illness 164, 300; defining mental music, autistic 472–3 disability 298–307; depression see Myers, S. 196, 197 depression; immigration policy 26; justifications of slavery 20–1; politics of race, Nadeson, M. J. 478 gender and in Willow Weep for Me 411–31; narrative 188, 462; autistic writing 469–71; life in prisons 134, 289–90; psychiatry and narrative 456–9; open-ended 223–4 disability activism 115–31; schizophrenia see narrative prosthesis 208–10, 222–35 schizophrenia narrative traps 383, 393 Mental Patients’ Liberation Front, Boston 119 nation 205–6 Mental Patients’ Liberation Project, New York National Advisory Council for Mental City 119 Health 125 mentalism (sanism) 117 National Black Disability Coalition 313 mestiza consciousness 328–9 National Easter Seal Society 35 metaphor 464, 477; autism 470–1; materiality national fitness 6 of 222, 232–4 National Foundation for Infantile Paralysis Mexican Dwarf in his Hotel Room (Arbus) (NFIP) 36–7 436–7, 439 National Institute on Disability and Meyer, G. 251 Rehabilitation Research (NIDRR) 486 Michaels, W. B. 268, 282 National Society for Crippled Children and Michalko, R. 62 Adults 35 Miller, J. E. 21 nationwide mental health screening 127 Miller, J. K. 471, 475 natural, the 18–19 Milligan, M. 451–3 naturalism 441–3 Million Dollar Baby 103 Nature 7 INDEX | 573

Nazeer, K. 468, 469–70 O’Hagan, M. 119 Nazism 285; eugenics 7, 75, 78–81, 84, 85, 99 older people, increasing numbers of 272 negative eugenics 76, 269 Olive (Craik) 9 Nelson, H. 403 Oliver, M. 116, 215, 216, 217, 220, 416, 417, 423 Neoclassical form 399–400, 403, 408 Olmstead v. Zimring 48 neoliberalism 177–84 Osteen, M. 470 neonatal medicine 189, 192, 194 onset of disability 291 Nestle, J. 325, 326 open-ended narrative 223–4 neural-tube defects (NTDs) 83–4 Open University 215 neurasthenia 298 oppressive disability imagery 432–46 neuroatypicality 303 other, the 254 neurodiversity 303, 467, 486 Overall, C. 164 neuroscience 464–5 overcoming 400–1; Willow Weep for Me 411, New Documents exhibition 434, 441 424 new ethics of the body 271, 273–5 Ozonoff, S. 477 New Freedom Commission on mental health 125–8 Packard, E. W. 117–18 new reproductive technologies (NRT)s 98, pain 286–7; see also suffering 267; NRT peer counselors 97; Vancouver Paine, T. 18 conference 88, 98–9; see also prenatal testing Panopticon 326 New York City Voices: A Consumer Journal for Parekh, P. N. 67 Mental Health 241–2 Park, J. 471–2 New York Times 461 Parks, R. 153 Nicaragua 253–4 participatory citizenship 62–4, 71–2 Nick News 196–7 passing as non-disabled 170, 289, 321–3, 347 Nicki, A. 301 passive infanticide 194 Nietzsche, F. 224 Pastrana, J. (the ‘bearded woman’) 338 Nike 407 patriarchal control 94–6 Nixon, N. 444 Pearson, K. 3, 6 ‘No Sugar, No Milk’ (Ferris) 544 Peifer, D. 322 nonvisible disability see invisible disability pejorative and differential treatment 284, Norden, M. 393, 394 285–6 norm 1–2, 3, 5 perfectibility 191, 192, 193 ‘Normal’ (Ferris) 541 performativity 265 normal distribution curve 3, 4–5 Perkins, S. G. 37 normalcy 11, 276; able-bodied Pernick, M. 28 heterosexuality 370–1; enforcing 223, 235 phallic penetration 385 normality 18–19, 116–17; and beauty 340–1; Philadelphia 382, 392 hierarchy of races 21–2; power, culture photography 406–7; oppressive disability and 1–14; stigmatization and 155 imagery 432–46 normate 202–4, 340 Photography Workshop 442 Northeast Passage 294 phrenology 11 Not Dead Yet 509, 511, 515 physician-assisted suicide 343, 507, 515–16 Nott, J. C. 22 physiognomy of disability 229–32 novels 205–7; and norms 8–12 Piper, A. 323 NRT peer counselors 97 Planet of the Blind (Kuusisto) 530–6 nuance theory 355 Platt, M. F. 328 Nürnberg laws 79 Playboy magazine 345 ‘Pleasures of Merely Circulating, The’ Oaks, D. 122, 123, 124, 126 (Stevens) 531 Obama, B. 44 Pliny 2 O’Connell, L. G 190 Plötz, A. 77 Oe, K. 185, 225 ‘Poems with Disabilities’ (Ferris) 537 Oedipus the King (Sophocles) 232–3 ‘Poet of Cripples’ (Ferris) 540 official stance 273–4 poetry 526–9; Ferris 537–49; sign ogive 5 language 251 574 | INDEX

policy 489–91 psychiatric survivor movement 121, 299–300, polio 35–6, 457 301–2, 413–14 political economy 136–7; family psychiatry: and disability activism 115–31; caregiving 198 postpsychiatry 302–3; psychiatric politics of resentment 169 diagnosis 301–2; psychiatric Pollitt, K. 282 profession 414–15; recent struggles between ‘poor physique’ exclusions 29 Mad Pride and 122–8 porn magazines 345 psychoanalysis 8, 281; autism 463; of Schreber positive eugenics 76 by Freud 239–40 postcolonial ecocriticism 70–1 psychosocial disability 304–5 postcolonial neurology 72 public art 398–410 postcolonialism 61–73 public and private 111 poster children 34–41 public voice, deaf 254–5 posthumanism 182–3 Putnam, R. 254 postmodernism 265–6, 275–6, 485–6; and the schizophrenic 236–45 quadriplegic rugby athletes 382–9 post-postmodernism 486 Quayson, A. 65–6 postpsychiatry 302–3 queer theory 180, 267–8; compulsory Pot, L. 251 able-bodiedness and 369–78; see also Potter, W. W. 23–4 homosexuality poverty 6, 134, 274 Queering the Air 178 power 275–6; differential and minority Quetelet, A. 2–3 identity 284, 285; imbalance between Quinn, M.: Alison Lapper Pregnant 398–410; doctors and the mentally ill 419–20; The Complete Marbles 398, 399–400, 408; normality, culture and 1–14 Kiss 408 Powers, R. 224, 225 pregnancy 30; Alison Lapper Pregnant 398– race: disability and blackness 308–15; and 410; representations of 401 disability in intersectional discourses prejudice 48–9 354–68; eugenics and 79; genetics prenatal testing 269–71, 343; and choice to and 266–7; justification of inequality abort 74, 81–6; democracy and the new 20–3; mixed race 267; politics of gender, genetics 100–14; disability rights and mental illness and in Willow Weep for selective abortion 87–99; kinship and Me 411–31; representation of women, citizenship 188–90, 191–2; pressure to test disabled people and 337–8; see also black and abort 91–3 Americans President’s Council on Bioethics 108–10 race–disability analogy 311–12, 412 presidents of the US, and poster children 38 race–sex analogy 317–18 prevention: and elimination 342; pride, cure racial hygiene see eugenics and 170–2 Rai, A. 178 pride, disability 170–2, 220 Ramírez, M. 238 Prince-Hughes, D. 474 ranking 5 Princeton University 507–19 Rapp, R. 104–5 prison industry 136–7 Raskin, I. 28 prisons 133–4, 274; abolition 138–40; rational autonomy 281 connections with institutions 135–40; Ravi, D. 177, 178 mental illness in 134, 289–90; mistreatment realism 206, 293, 295 of prisoners by blindfolding 452–3 Reaume, G. 298 ‘private’ eugenics 110–11 recessive diseases 82 private meanings 468–9 reconstructive surgery 340 private and public 111 Reeve, C. 487, 515, 544 progress 19 ‘regarded as’ disabled 44, 46–7, 49 prosthetics 340–1; fashion modeling and rehabilitation 312 prosthetic legs 349–50; Murderball and Rehabilitation Act 1973 44, 309 masculinity 384 Rehabilitation Act Amendments (Section 504) protest 286 1973 87 Prozac 122–3, 414, 425 relational model 214 INDEX | 575 repetitive behavior 463–4 scarce resources 156 representation: aesthetic nervousness 202–13; Scarry, E. 43, 234 Alison Lapper Pregnant and public Scheff, T. 120 display 398–410; feminist disability schizophrenia: high numbers of African theory 337–9; life narrative 456–9; narrative Americans diagnosed with 415, 426; prosthesis 208–10, 222–35; oppressive postmodern theory and 236–45 disability imagery 432–46; participation, Schizophrenia Digest 242 democracy and 71–2 scholarship 311–14 reproductive cloning 108 Schor, N. 235 reproductive rights 85–6, 105; in a disability Schreber, D. P. 239–40, 244 context 88; patriarchal control, eugenics and science fiction 278; Gattaca 101–4, 110 reproductive freedom 94–6; proposal for the Scott, D. M. 22–3 reproductive rights movement 96–8 Scott, J. 18 reproductive technologies see new sculpture 398–410 reproductive technologies (NRTs) second-wave identity struggles 264 resentment, politics of 169 Secret Agent, The (Conrad) 10, 11 residual vision 454 Sedgwick, E. 50, 336 responsibility 170 segregation 443; intersection of race and retinitis pigmentosa 83 disability 359, 360–4, 365, 366; segregated reverse discourse 420–2 incarceration 134 reverse discrimination claims 51–4 Sekula, A. 442 rhetorical ownership 238–9 ‘selection and eradication’ campaign 79–81 rheumatoid arthritis 163–4 selective abortion see abortion Rich, A. 54, 369, 370 selective infanticide 507, 509–11, 517–18 Richard III (Shakespeare) 210 selective serotonin inhibitors (SSRIs) 123 right not to be born 270–1 self-disclosure 242 Roberts, D. 110 self-esteem 217 Roberts, E. 502 self-referencing 150–1 Rogers, J. 125 Seneca Falls Woman’s Rights Convention Rose, N. 182 1848 25 Rothman, B. K. 110 September 11 2001 terrorist attacks 450 Rowden, T. 314 service dogs 348, 349 Rüdin, E. 78 Sesame Street 195 Rugg, R. A. 325, 327, 328 severe (importance in queer theory and Russett, C. E. 23 disability studies) 374–5 Russian Midget Friends in a Living Room on sex/gender distinction 216, 218, 219, 347 100th St. N.Y.C. (Arbus) 436–7 sex–race analogy 317–18 Rutgers University, New Jersey 177–8 sex selection 94–5, 270 sexual abuse 499, 500–1 Sacks, O. 472 sexual orientation 267–8; coming out 316–32, Said, E. 62–4, 72, 275–6 503–4; see also homosexuality Salinger, J. D. 224 sexual orientation–disability analogy 316–19 “Sally’s Corner” 361–2 sexuality 345 Sandahl, C. 480 Seymour, W. 386–7 Sandel, M. 101, 255 Shakespeare, T. 62 Sandford, R. M. 25 Shakespeare, W. 210, 224 Sandoval, G. 328 Shelley, M. 229 Sanger, M. 89 Sherry, M. 64 sanism (mentalism) 117 ‘Shishu’ (Devi) 68–9 Sargent, D. 339 Shore, S. 474 Sartre, J.-P. 281–2 sickle-cell anaemia 269, 270 Satel, S. 125, 126, 127 Siebers, T. 66, 70, 479 Savage, D. 179 Sigelman, C. 150, 151 savants, autistic 468, 479 sign languages 247; and academic Savarese, R. 72 discourse 249–50; cultural diversity 253–4; Savulescu, J. 110 deaf-gain 247–50, 251–2; literature 251–2 576 | INDEX

signs of disease 419 stare 347, 387 Silvers, A. 343 statistics 2–5 simulations, disability 292–3 Steadfast Tin Soldier, The 222, 227–9 Singer, P. 507–19 Steele, K. 241, 242 Singing in the Rain 520 Stehle, B. F. 444 Singleton, L. C. 150, 151 Steinberg, S. 267 Sinha, I., Animal’s People 71 stem cell research 108–10, 272 situated analysis 66–9 stereotyping 116; disabled women 344; stigma situated knowledge 288–9, 295 and 151–3, 157 skeptical interlocution 212 sterilization 7, 84; Nazi Germany 7, 77, 78–9; slavery 422–3; justifications of 20–3 US laws 76–7, 89 slow death 177, 179–80 Stevens, W., ‘The Pleasures of Merely Smith, A. L. 24 Circulating’ 531 Smith, C. 360–4, 364–5, 366 Stigler, S. M. 5 Smith, L. T. 67 stigma 30, 147–60; fear and 150, 151, 155–6, snapshot aesthetic 435 157; as a form of cognitive processing 151–3; Snyder, S. 62, 65, 203, 208–10, 238–9, 242 meaning for social relations 153–5; origins soap advertisements 22 of 150–1 Soares, J. 385 Stiker, H.-J. 312 social constructionism 265, 268; theory of Stohl, E. 345, 502 complex embodiment and identity 293–5 Stokoe, W. 248 social context, stigma and 148–9 ‘Stranger Who Imitated Animals, the’ (Mohr social control 181–2; stigma and 157 and Berger) 442–3 social deformation 205–7 strategic essentialism 269 social interaction 463–4 strength 422–4 social isolation 154–5 sublime, the 207–8 social justice 140 sublime–disability continuum 208 social knowledge 283–4 subversion: nonvisible disability and lesbian- social location 288–9 femme identities 323–9; passing as 321–3 social marking 150 suffering 171; alleviation of 92–3; social model of disability 166, 204, 214–21, depression 416–17; minority identity 264–5, 271, 290, 358; ADAAA and 45–7; and 286–7 autism 461–2, 466–75; deconstructing 418– suffrage, women’s 23–6 24; depression and 415–18; limits 220–1; suicide: assisted 343, 507, 515–16; gay youth strengths 216–17; weaknesses 217–20 suicides 177–84 social movements 192, 356 superiority, and inferiority 149 social rejection 154–5 Supplemental Security Income (SSI) 241 social relations, stigma and 153–5 Support Coalitions International (SCI) 122, Social Security Disability Insurance (SSDI) 241 123 Social Security Disability Insurance (SSDI) surgery 340–1 Act 489 surveillance: Internet 178; Panopticon 326 social welfare, state apparatus of 111 survivors (of mental health services) 121, Society for Disability Studies 308 299–300, 301–2, 413–14 Sontag, S. 238, 435, 443, 463 suspicion 169–70 Sophocles 232–3 Sutton v. United Air Lines, Inc. 44 South Africa 287–8 Swain, J. 215, 317–18, 319 Soyinka, W. 65, 211, 212 symbolic interactionism 204 speaking up, identity and 322–3 Szasz, T. 120, 121 special education 357–8, 359–60, 360–4, 365, 365–6 Tammet, D. 468 Sphinx, the 232–3 Tay-Sachs disease 92–3, 106, 112 spina bifida 83 Taylor, C. 283 spirit murder 354–5, 366 Taylor, L. 251 spread effect 43 technotopic bodies 385, 394 Stafford, B. M. 227, 230 ‘TeenScreen Depression’ program 128, 129 Stanton, E. C. 25 telethons 34–41 INDEX | 577 television 195–6, 225 visual culture, blindness and 447–55 Terman, L. 76 visual language 248–9 terrorist attacks of September 11 2001 450 visual learning 248–9 Texas Medication Algorithm Project volition 158 (TMAP) 127–8 theater 251–2 Wachsler, S. 328 theory of complex embodiment 288–95 Wade, C. M. 165; ‘Cripple Lullaby’ 527; ‘I Am theory of mind 463, 477 Not One of the’ 526 therapeutic cloning 108–10 Walker, F. 27 Thiher, A. 299 Walker, L. 321, 324, 325, 327 Thomas, C. 218 Warm Springs Foundation 36 Thomas, P. 302 Warner, M. 374 Thomson, R. Garland see Garland-Thomson, R. WE Magazine 348–9 Tigris River cuneiform tablets 226, 232 Wei, M. 177, 178 Titchkosky, T. 298 Welcome to Holland flyer 193–4 touch 451, 453 welfare state 111 Toyota v. Williams 44 well/unwell paradigm 300 Trafalgar Square 398, 403, 409; Wendell, S. 171, 300–1, 320, 321, 416 monuments 403–4, 409 ‘What Are You Staring At?’ 196 transformation 334; identity and 345–6 wheelchairs, used in rugby 384 transient mental illnesses 477–8 Whyte, S. R. 68 transnational deaf community 252–3 Wilchins, R. A. 499 Transport for London 219 Wildman, S. M. 317, 412 transsexual/transgender movement 500 Wilkinson, W. 328–9 transsexuals 267 Williams, D. 470, 474 trauma 69–71 Williams, P. 354–5, 366 Tremain, S. 418–19, 420, 422, 427, 428 Williams, R. 370 Tuana, N. 337 Williams, S. 218 ‘20/20 with a Twist’ (Kendrick) 455 Williamson, A. 255 twins, conjoined 341 Williamson, G. 195 Willow Weep for Me (Danquah) 411–31 UCP 34, 35, 36, 37, 38 Wills, D. 208 ‘Unabomber manifesto’ 241 Wilson, A. 420, 421, 426 unconscious people, keeping alive 514–15 Wilson, D. 383–4 ‘undesirables’ 81 Wilson, J. Q. 109 Union of the Physically Impaired Against Wilson, Junius 359–60, 364 Segregation (UPIAS) 214–15, 216, 217, 416 Wilson, R. 252 United Kingdom (UK) 64; eugenics 6, 7, 75–6; Wiltshire, S. 471, 472 origins of the social model of disability Winchell, W. 35–6 214–15; statistics 3 Wing, A. 356 United Nations (UN) 164–5 winged figures 407 United Nations Convention on the Rights of Winogrand, G. 434, 439–41, 444 Persons with Disabilities (CRPD) 44, 490, 491 withholding of treatment 287 United States Forest Service 293–4 Witkin, J.-P. 444 universalism 273 Wittgenstein, L. 318 universalizing view of disability 336 Wolsch, N. 24 women: abortion see abortion; disabled female Van Evrie, J. 20, 21 athletes 386–8; guilt and abortion 96; variegation 203 justification of inequality in American Venus de Milo 405 history 17, 18, 23–6; minority identity Verschuer, O. von 79, 81 ‘woman’ 286; prenatal testing see prenatal Vincent, N. 371, 376 testing; suffrage 23–6; theory of complex violence, screening for propensity to 106–7 embodiment 288–9 virtue 205 Women’s Health Foundation 30 visibility: limits of 319–23; see also invisible Woolf, V. 206 disability workplace, accomodation in 168–9 578 | INDEX

World Health Organization (WHO) 69, 272 Young, I. M. 168–9, 288–9, 337, 341 World War II 153, 312 youth suicides, gay 177–84 World’s Fair 1904 19 Yuval-Davis, N. 357 Wright, A. E. 24 writing, autistic 469–71 Zeuxis 2 ‘wrongful birth’ law suits 90, 97 Zizek, S. 235 Zola, E. 9–10 Yeung, V. 242 Zoloft 414 Yoshino, K. 51 Zupan, M. 383, 384, 385