Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature, Twentieth Anniversary Edition 9780231183178, 9780231183161

Table of contents :
Table of Contents
......Page 6
Preface to the Twentieth Anniversary Edition......Page 8
Preface and Acknowledgments......Page 20
I. Politicizing Bodily Differences......Page 24
1. Disability, Identity, and Representation: An Introduction......Page 28
2. Theorizing Disability
......Page 42
Illustrations
......Page 75
II. Constructing Disabled Figures: Cultural and Literary Sites
......Page 91
3. The Cultural Work of American Freak Shows, 1835-1940......Page 93
4. Benevolent Maternalism and the Disabled Women in Stowe, Davis, and Phelps
......Page 119
5. Disabled Women as Powerful Women in Petry, Morrison, and Lorde
......Page 141
Conclusion: From Pathology to Identity
......Page 173
Notes
......Page 177
Bibliography......Page 211
Index
......Page 229

Citation preview

Extraordinary Bodies FIGURING PHYSIC AL DISABILIT Y IN A MERIC AN CU LT URE AND LITER AT URE

20 TH ANNIVERSARY EDITION

ROSEMARIE GARL AND THOMSON

Twentieth Anniversary Edition

Cover photo: Frida Kahlo, “Self-Portrait with Portrait of Doctor Farill,” 1951. © Banco de México, fiduciary of the Diego Rivera and Frida Kahlo Museums. Reproduced with permission from the Instituto Nacional de Bellas Artes y Literatura (INBA), Mexico. Columbia University Press Publishers Since 1893 New York Chichester, West Sussex cup.columbia.edu Copyright © 1997 Columbia University Press Preface to the Twentieth Anniversary Edition © 2017 Columbia University Press All rights reserved Library of Congress Control Number: 2016956461 ISBN 978-0-231-18316-1 (cloth : alk. paper) / ISBN 978-0-231-18317-8 (pbk. : alk. paper) / ISBN 978-0-231-54477-1 (e-book)

Columbia University Press books are printed on permanent and durable acid-free paper. Printed in the United States of America

Contents • • • • •

Preface to the Twentieth Anniversary Edition Preface and Acknowledgments

vii xix

Part 1.....POLITICIZING BODILY DIFFERENCES 1 Disability, Identity, and Representation: An Introduction 5 The Disabled Figure in Culture The Disabled Figure in Literature The Gap Between Representation and Reality An Overview and a Manifesto

2 Theorizing Disability Feminist Theory, the Body, and the Disabled Figure Sociocultural Analyses of the Extraordinary Body The Disabled Figure and the Ideology of Liberal Individualism The Disabled Figure and the Problem of Work

5 9 12 15

19 19 30 41 46

Part 2.....CONSTRUCTING DISABLED FIGURES: CULTURAL AND LITERARY SITES 3 The Cultural Work of American Freak Shows, 1835–1940 The Spectacle of the Extraordinary Body Constituting the Average Man Identification and the Longing for Distinction From Freak to Specimen: “The Hottentot Venus” and “The Ugliest Woman in the World” The End of the Prodigious Body

55 55 63 66 70 78

vi . . . . . Contents

4 Benevolent Maternalism and the Disabled Women in Stowe, Davis, and Phelps The Maternal Benefactress and Her Disabled Sisters The Disabled Figure as a Call for Justice: Harriet Beecher Stowe’s Uncle Tom’s Cabin Empowering the Maternal Benefactress Benevolent Maternalism’s Flight from the Body: Harriet Beecher Stowe’s Uncle Tom’s Cabin The Female Body as Liability Two Opposing Scripts of Female Embodiment: Rebecca Harding Davis’s Life in the Iron Mills The Triumph of the Beautiful, Disembodied Heroine: Elizabeth Stuart Phelps’s The Silent Partner

5 Disabled Women as Powerful Women in Petry, Morrison, and Lorde Revising Black Female Subjectivity The Extraordinary Woman as Powerful Woman: Ann Petry’s The Street From the Grotesque to the Cyborg The Extraordinary Body as the Historicized Body: Toni Morrison’s Disabled Women The Extraordinary Subject: Audre Lorde’s Zami: A New Spelling of My Name The Poetics of Particularity

Conclusion: From Pathology to Identity Notes Bibliography Index

81 81 84 88 90 92 94 98

103 103 107 111 115 126 129

135 139 173 191

P r e fac e t o t h e Tw e n t i e t h Anniversary Edition • • • • • I’ve been talking and thinking about how we talk and think about disability for more than twenty years now. All this talking arose as the seed for Extraordinary Bodies began to sprout in the late 1980s—a good time, it turned out, to bring forward the cultural work of disability in humanities studies. Published in 1997, the book was a latecomer to feminist literary studies and critical race studies, the academic movements from which it emerged. But it was a forerunner to critical disability studies, a scholarly field that few had imagined when I was actually writing the book more than two decades ago. Extraordinary Bodies, clunkily subtitled “Figuring Physical Disability in American Culture and Literature,” had the good fortune of arriving in the world apparently at just the right moment and in just the right place. The book’s cover prefigures the contents much better than the subtitle. A haunting self-portrait shows a somber Frida Kahlo holding a fistful of paintbrushes in one hand and a palette inscribed with a human heart in the other. Seated regally in her wheelchair, she looks out hard at us from beneath her signature unibrow, inviting us to contemplate her formal pose next to an easel displaying her just-completed portrait of her surgeon, Dr. Juan Farill. Farill performed seven surgeries on Kahlo’s spine in 1951, the year she completed this painting—her last signed self-portrait. It is really a double portrait, a painting within a painting, juxtaposing sameness and difference. There is the doctor, a man whose dominating brow and contemplative formality match Kahlo’s own face. And there is Kahlo, a woman at work in her studio, a woman with a detailed body at the center of the painting. He is the head, gazing out into the distance; she is the body, gazing directly at us. Her body, this portrait instructs us, is at once the agent of her own art and the object of her doctor’s art. In this quiet, dignified double portrait, art and medicine, the clinic and the studio, merge in the strangely sterile, empty room. Medical equipment and art equipment—wheelchair and easel, the tools of each of their trades—rest in

viii . . . . . Preface to the Twentieth Anniversary Edition incongruous formal juxtaposition. I read the painting as an invitation to consider the imprint of disability materiality and perception on aesthetic representation. Medicine—the clinic, physician, and equipment—have made Kahlo, the woman, but in the world of this painting, art—the brushes, palette, easel, paint, and artist—have made the doctor. Scale competes with placement to make meaning: the doctor’s head on the easel is larger than life, but it recedes with deference, while the throbbing heart palette rests on Kahlo’s glowing lap at the very center—the heart, if you will—of the portrait. The painting may honor the doctor, but it portrays Kahlo as an artist, not a patient. When I first proposed writing about representations of disability in American literature and culture to the late Michael T. Gilmore, my advisor at Brandeis University, around 1988, he responded with perplexed enthusiasm, saying he had never considered the topic before but thought it a good idea, wondering aloud whether there were many disabled characters in American literature. Even then—well before historian Douglas Baynton told us that disability is everywhere once you begin to look for it—I could recite a list ranging from Anne Bradstreet’s monstrous birth metaphors, to Melville’s Ahab, Stowe’s Eva, Faulkner’s Benji, Steinbeck’s Lenny, everybody in Wharton’s Ethan Frome, most everybody in Toni Morrison’s novels, and many more. I pitched in Shakespeare’s nasty Richard the Third and Julius Caesar too because recent work on race and gender—on Othello, Ophelia, Caliban— modeled what I had in mind. The Brandeis English Department offered a supportive and open environment where I became the expert of my own topic, a generative if sometimes unmoored position in academic life. In the late 1980s, cultural work on disability was a fresh idea not only to English departments but to me too. Well into adulthood by the time I completed higher education, I had only the vaguest notion that there had been a disability rights movement. I had never entered into a disability community because, like many of us who were born into families unfamiliar with disability, I was expected to enter whatever mainstream cultural institutions I could make my way into—from school to social circles and jobs. (My family didn’t talk about careers, but rather jobs, paying bills, and getting on with things as best you could.) I entered adolescence during the burgeoning feminist and civil rights movements and absorbed that fervor as I put together a life alert to opportunities at hand. But by 1990, a few of us in the humanities were recognizing the representational richness and ethical dimensions of disability. I had been noticing it for a while because feminist literary studies and critical race studies taught me the cultural work of representation and because I have lived life with a disability. The revelatory work of Extraordinary Bodies as literary criticism is to

Preface to the Twentieth Anniversary Edition . . . . . ix show that disability is an almost clichéd representational strategy through which to achieve the grit of naturalism and realism, the affect of sentimentalism, the irony of modernism, and either clueless or transgressive humor. Extraordinary Bodies and other academic books published around the same time, which are now understood as mainstays in the canon of critical disability studies, formed the collective heft of what we called “disability studies in the humanities” or sometimes “the new disability studies.”1 A politically minded, social constructivist disability studies had developed in sociology and medical anthropology in the 1980s, led primarily by Brandeis sociologist Irv Zola, founder of the Society for Disability Studies and Disability Studies Quarterly— which was then a mimeographed and stapled newsletter and is now the leading journal in the field of critical disability studies. As my career continued to develop, first at Howard University and later at Emory University, I was at the same time intentionally building, along with whatever colleagues I could find, a field that extended social constructivist theories of disability into a humanities focus on the cultural work of narrative and representation. We networked, gave conference papers, seeded academic journals, integrated disability into curricula and syllabi, developed disability studies structures in professional organizations, and recruited fellow academics. Growing disability studies was not only a knowledge-building initiative but also a lobbying effort. We had fervor and success. Professional organizations with robust structures and resources, particularly the Modern Language Association, supported and extended the field of disability studies. In the beginning, they did so in the interest of removing barriers and strengthening inclusion for members, but later they supported the content disability studies offered in hopes of integrating disability as a subject of inquiry, with disability diversity as a political and ethical goal. The critical disability studies that emerged has always been interdisciplinary and intersectional. Like critical race theory and feminist theory, many of its leaders have come into disability studies by coming out as people with disabilities themselves or people with close family members with disabilities. Identity politics, “the personal is political,” standpoint theory, multiple identity theory, and the critique of the view from nowhere have collectively articulated in academe the invitation that was made possible by the civil rights legislation, desegregation of public institutions, and a new ethic of inclusion and diversity. The intertwined social justice movements yielded intertwined knowledge justice movements. Scholars such as Paul Longmore, Alice Wexler, and Katherine Ott brought their work as medical historians into the broader reach of critical disability studies. Social scientists such as Carol Gill, Simi Linton, Faye Ginsburg, and Rayna Rapp focused on disability. Specialists in

x . . . . . Preface to the Twentieth Anniversary Edition rhetoric such as Brenda Brueggemann developed Deaf studies. Law scholars such as Arlene Kanter and Michael Stein advanced disability law. Artists such as Riva Lehrer and Alice Sheppard theorized disability representation in cultural production. Moreover, newer scholars and graduate students found disability in fresh places: Shakespeare and disability, freak studies, feminist disability studies, queer disability studies, disability and race studies, critical design theory, disability pedagogy, bioethics. Extraordinary Bodies—still taught, still cited throughout twenty years—has been a sturdy joist in the scaffolding that supported this vibrant domain of scholarship and knowledge. My work has been to throw words at what we think of as disability. I’ve come to say things in ways that seem circuitous but are in fact accurate about the meanings, experience, and materiality of disability. The more academic way of saying this is that I have contributed to explicating the cultural work of language and renarrating the embodied variations we think of as disabilities. This work is part recuperation and part renovation. As scholars, we find where disability has been, and we guide where disability is going. The available conceptual vocabulary of disability is overwhelmingly negative, with few incentives to take it up as one’s own. As my audiences frequently point out, the words “disability” and “disabled” denote nothing of the social justice or human rights reframing of the Americans with Disabilities Act (ADA) or the pride movement it empowered. While many of us have retained the word “disability” to keep firm the link to the justice legislation, we have also overhauled language to make new knowledge about these ways of being and what they make in the world. Most people don’t know how to talk about disability or to be disabled. We are reluctant to recognize our fellow citizens as disabled people, and often even more reluctant to acknowledge our own experience or status as people with disabilities. One reason for this is that being disabled is generally understood as negative, as a stigma. Few of us recognize disability as a social identity with a group claim to rights and inclusion. Because of this, we are unsure how to talk about disability. Most all of us sense that the old way of calling disability a curse, tragedy, misfortune, or individual failing is no longer appropriate in our post–disability rights era, but we are unsure about what more progressive, less impolite, language to use. So we are nervous not just about becoming disabled, but about offending people with disabilities and seeming bigoted ourselves by using the only words we know. When I lecture about disability, someone always wants to know—either defensively, earnestly, or cluelessly—the “correct” way to refer to this new politicized

Preface to the Twentieth Anniversary Edition . . . . . xi identity. I welcome this question, I explain, as an opportunity to consider the cultural work of language and the history of self-naming within marginal groups. I talk about the work that these new ways to talk and think about disability accomplished. As my colleague Georgina Kleege has suggested, it could change the world if we began to think about gaining blindness rather than losing sight. The revelatory potential of disability emerged from one of my students after she read Kleege’s work: “I never thought of myself as sighted before,” she announced to the class. This is a recent version of the classic work of consciousness-raising that we learned almost fifty years ago during the women’s movement. There’s a history to the way we talk about disability, of course. Traditional societies with fi xed social orders relegate disabled people to sacred or profane categories, the cursed or blessed, the beggars or oracles, but always the outsiders. The human variations we think of as disabilities have always been an occasion for interpretation, signs of an unsettling contingency or affirmations of an inscrutable design. The human quest for causality evolved from supernatural to scientific explanations of disability as the modern world emerged. Medicine generally releases the disabled from moral blame but imposes a failure, not of grace, but of normalcy. While the reigning understanding of disability is still medical abnormality, this system has been soundly challenged by the social justice framework that interprets people with disabilities as a group that has historically been denied rights and equal access to the obligations and privileges of citizenship. The framework of political rights has only begun to overtake the medical language of disability as the laws and their effects over the last thirty years or so have transformed our legal, built, and social environments. Extraordinary Bodies contributed critical vocabulary to this transformation. The adjective “extraordinary,” which I fretted over a good deal with a thesaurus, highlights the exceptional status that disability confers. It suggests superabundance rather than lack and implies the blandness of the ordinary. Although I wouldn’t have known to discuss it in this way, I have come to understand that “extraordinary” gestures softly toward what I now call the generative potential of disability, the world-making work of disability as a concept and cultural force. I was drawn into those first explications of disability narratives by the freaks and monsters of culture and literature, the extravagance of Toni Morrison’s characters, and the hyperbolic affect of sentimentalism. I had a sense that what sociologist Harvey Sacks called “doing being ordinary” was aesthetically boring and that disability was a baroque representational form that might compel more than repel. In disability studies critical

xii . . . . . Preface to the Twentieth Anniversary Edition work and in conference presentations, I now often hear the term “extraordinary bodies” used as simply the way to talk about disability without any reference to the book I wrote twenty years ago. The phrase has moved away from me as an individual critic and now serves the meaning-making work most appropriate to what we as scholars ought to be doing. What I have written, the words I have used, thus take on a new precision and cultural work, embedded in the fresh contexts of the continuing conversation that is critical disability studies. Probably more than “extraordinary bodies,” the neologism “normate,” coined in the book, had legs (as I say with irony). It has moved into the vocabulary of disability studies because it answers the need to name with a single word something previously unnamed. Whereas “extraordinary” can slip into disability studies talk somewhat unnoticed, “normate” sticks out like, well, a sore thumb. I hear and read it used often, apparently now a recognizable bit of critical jargon that may still have the oddness to poke at the altogether unremarkable word “normal” that haunts disabled people every day of our lives. “Normate,” then, is my signature contribution to disability studies. Here’s the full definition of it offered up in Extraordinary Bodies: This neologism names the veiled subject position of cultural self, the figure outlined by the array of deviant others whose marked bodies shore up the normate’s boundaries. The term normate usefully designates the social figure with which people can represent themselves as definitive human beings. Normate, then, is the constructed identity of those who, by way of the bodily configurations and cultural capital they assume, can step into a position of authority and wield the power it grants them. If one attempts to define the normate position by peeling away all the marked traits within the social order at this historical moment, what emerges is a very narrowly defined profile that describes only a minority of actual people. (8)

“Normate” is not my word, however. The word came to me at my first Society for Disability Studies (SDS) annual meeting, probably in 1989. The president of SDS, Daryl P. Evans, mockingly flung out the word “normate” from an SDS session podium with confrontational ironic distance. At first encounter, Daryl, an established sociologist like all of the SDS leaders at the time, looked like a typical, hip academic type with cool glasses, big wiry hair, and a sensitive mouth that was quick to sneer. Only his delicate, paper-white skin—eerily like the drowned Ophelia in Millais’s haunting painting—revealed a fragility in Daryl that emanated from his tightly managed seizure

Preface to the Twentieth Anniversary Edition . . . . . xiii disorder and the vigilance that bodily supervision required of him. Daryl could pass for a normate, which is a burden for anyone, of course, because it is such a unstable position. He committed suicide in 1999. With the word, “normate,” he gathered the cumulative burden of stigma theory’s hard truths and spewed it out with the force of an exorcism.2 The most surprising and significant contribution Extraordinary Bodies has made is to open a path for people to understand themselves and others in a different way from how they initially learned to understand the human variations we think of as disabilities. What began with Extraordinary Bodies as a routine work of literary criticism—or slightly more broadly, cultural studies— expanded out into field building, first within English, then more broadly in the humanities, and then into the worlds beyond academe: advocacy, policymaking, public culture, and now bioethics. This outward movement of ideas answered a call. It was a response to a beckoning audience made up of people who were recognizing, some of them for the first time, that their lives were touched by, often shaken by, disability in one way or another. Extraordinary Bodies expressed the animating call of disability studies—that disability is everywhere, that it concerns all of us, and that it is interesting—and this made many, many people receptive to the perspectives that the book offered. Disability studies—particularly its idea that knowing about our disability culture, history, arts, communities, and rights will help make a better world for everyone—is perhaps what people respond to most fully in Extraordinary Bodies. Over the years, people have come to me—with diffidence after I’ve given a lecture, with resolve during my office hours or a conference dinner, in a lingering moment after a conversation about something else entirely—but always with purpose to tell me their disability story. As I travel for professional activities—or at Emory—I have come to understand that being up in front of people with my arms and hands as they are and talking about the important work of disability culture, inclusion, and community loosens the tongues tightened with shame and fortifies the urgency to advance one’s story. Whether the people who come to me are disavowing or embracing the provocation of disability, they all need to tell me their stories. My sense is that I’ve given them words for something that has gone unspoken or unspeakable, even though those words may seem to them like hot coals. Many are exhausted from keeping up a normate front. Most range from wary to terrified of identifying or being identified as disabled. Most struggle for solutions to the misfit between their bodies and workplace or social expectations. If they understand the concept of reasonable

xiv . . . . . Preface to the Twentieth Anniversary Edition accommodation, they are often unclear about what they need. New disability identities and the transformations of our bodies and shifting relations with others are unsettling territories for most of us. Let me offer here three stories from people who have come to me because the work of disability studies presented them with something they needed that they had not found before. Here is the first story. During a fancy dinner after I gave a lecture, I was trying to be a gracious guest, as I do, by talking with the graduate student who had been the administrative assistant for my visit. She was a poised and efficient young woman who looked a good deal like the actor Julianne Moore. What, I asked, had the conference and my presentation meant to her. It was a polite, open-ended question intended to further the table conversation. I knew she worked in disability studies, but she appeared to be vigorously normate. She responded with calm conviction, avowing to us all, “Your lecture made me understand that I deserve to exist in the world.” The other guests around the table snapped to attention on hearing this soft-spoken but firmspirited sentence coming from a young woman who appeared to have the strongest of claims to be in the world. It was if she had set her words out on the table between the salt and the wine for us to contemplate, some sort of totem object, beating like one of Frida Kahlo’s unsettling, misplaced bloody hearts. I reached for the psychologist’s invitation to continue: “Can you say more about that . . . ?” The young woman brought forth her story that she had been born with a congenital disease I considered to be somewhat mild and that had been fairly well-managed throughout her life. Her parents, whom she understood as loving and supportive, had always explained to her that while they were happy to have her, had they known before her birth of this medical condition, they would have sought selective abortion to spare her and them from the potential suffering of her illness. She seemed to understand this was a pragmatic position they held that did not undermine their commitment to her as their child. Nonetheless, her conviction that she did not have a right to be in the world had apparently been waiting for the contradiction disability studies can offer. This logic regarding reproductive selection on the basis of disability and the prevention of suffering has been challenged quite strongly by disability justice advocates and in some arenas of disability studies. Yet, what she apparently needed was not the validation of love, but the conferral of worthiness to be considered fully human. She needed to know that disability does not discount human value, something that cultures have traditionally not been able to offer disabled people but that the animating forces of disability studies—disability justice and human rights—do confer.

Preface to the Twentieth Anniversary Edition . . . . . xv Here is the second story. About a week before I went to a large state university to give a lecture and a series of workshops on disability studies and disability inclusion, I got an email from a woman faculty member there requesting a meeting. She explained that she was struggling with increased barriers and reduced abilities and wanted to talk and seek advice because she had read my work. At the end of the message, she told me that her situation was complicated because she was not only a faculty member but also the wife of the president of the university. We met together in the parlor of the President’s House, a lovely restored Victorian outfitted as is typical of such residences for the purpose of holding university functions, receiving visiting guests, and other social duties of a president of any university. My new colleague explained that although for many years she’d had a condition that affects her mobility, particularly walking, the environment of her department, the campus, and especially this beautiful ceremonial house were becoming increasingly difficult barriers for her to navigate. Of course, she didn’t explain it in this way. She told me instead the stories of struggle and shame that I so often hear when people come to me about disability. Most moving was her concern that she increasingly needed assistance caring for her young children. Carrying them to the park or getting through the daily care tasks they needed was something she was relying on others to do more frequently now, and she worried she was perceived as exploiting the staff that were part of the university president’s office. She also had difficulty navigating campus buildings without any walking aid, even though she occasionally used a cane, which made her feel self-conscious. Perhaps most distressing was that climbing stairs to get to the private areas of the house where she actually lived was becoming untenable for her. An elevator would have made the house accessible, but she was very concerned that the cost to the university of installing an elevator for what she feared would be perceived as an indulgence would mar her husband’s reputation as a leader. Once again, she expected herself to navigate barriers to access and inclusion that this public university should be responsible for removing. She saw access as a struggle that she individually was responsible for overcoming. Often the most useful response is something that comes to me days after an encounter, but at this moment out of my mouth tumbled with ardor a set of recommendations for her to come out as a disabled person, to act as the occasion for the university to become inclusive and just rather than simply compliant, and to suggest to her husband that he take up an initiative of inclusion and diversity that could be the signature accomplishment of his leadership. I also said: get every gorgeous, fashionable, and high-tech walking aid

xvi . . . . . Preface to the Twentieth Anniversary Edition available and use a different one every time you go out of this house. You will not need to answer a single question about your disability status because these technologies will do the work of announcing who you are now and what you need to get through the world. A purple cane, a carved walking stick encrusted with rhinestones, a candy apple red walker with resting seat and racing bike brake handles, a metallic gold scooter with black leather seats will be your disability fashion statements. Match the devices to your outfits; move through the campus with dignity along the accessible paths that exist. You will be marked as an elegant person with a disability, not a slacker or someone made awkward through self-consciousness. Most important, I said, when the elevator is installed, hold a reception with plenty of wheelchair users and local dignitaries invited to celebrate the access upgrade that will make it possible for the next president of your university to be a wheelchair user. Access is the path to diversity, inclusion, and justice, I said, and you can consider it your shared leadership contribution to your university. Here is the third story. I got a call from a former graduate student and now colleague who has a great job at a private liberal arts college. She was writing to let me know that she had a recent diagnosis and surgery for a brain tumor and was now navigating this new identity. She was seeking out advice and community about negotiating accommodations and finding support in the academic world. A young woman with small children, she probably had plenty of people affirming for her that this was a terrible thing to have happened, which of course it is. I thought perhaps I’d offer a different approach, so I said something like, “What a delight to hear from you! Welcome to disability culture. It sounds like you are addressing this health situation in exactly the right way to structure the most effective environment to do your work and live your life.” All of this is right, and she seemed relieved by not having to manage the shock or sorrow that her disclosure must usually prompt and by the camaraderie implied in my response. What the people who have come to me have taught me is that these ways of thinking and talking about disability—which started for me in Extraordinary Bodies and have expanded out in all my work for more than twenty years—can answer an urgent need as we struggle to create tenable and satisfying lives with the bodies and minds that we and the people we care for have. When disability comes our way, most of us don’t know how to access the rights, accommodations, technologies, opportunities, services, and dignity that we need to establish for ourselves the lives we want. Just as important, knowing about our culture, history, arts, and communities is crucial for us to

Preface to the Twentieth Anniversary Edition . . . . . xvii flourish as people with disabilities. The world we live in is filled with disempowering and negative stories about living with disabilities and about disabled people. Yet more than 20 percent of Americans qualify under the ADA as disabled, a much higher percentage than the census reports. This most unstable of identity categories visits us slowly over a lifetime or in a second. Superman becomes quadriplegic with the stumble of his horse. We grow old if we are lucky. We become disabled not through the inevitable failures of our flesh, but rather by using the material, technological, and legal apparatuses our liberal democracy offers in its steady aspiration to assure equality among citizens. Not when our bodies fail but rather when our fellow citizens perceive us as disqualified by disability, when we cannot effectively use the world as it is built, when we are denied access to equal opportunities, then we become disabled. For people with disabilities to live effectively in a world not yet fully built or sometimes not even imagined for disabled people, we need to learn how to be disabled, how to achieve well-being and competence at living with disabilities. Becoming disabled requires adjusting to new functioning, appearance, and social status, even more than receiving proper medical treatment. Becoming disabled demands learning how to live effectively and with dignity as a person with disabilities, not just living as a disabled person trying to become nondisabled. We need to have the kinds of knowledge that disability studies and this modest contribution, Extraordinary Bodies, provide us. Becoming disabled in this way is what we need to move from isolation to community, from ignorance to knowledge about who we are, from stigma to dignity, and from exclusion to access.3

Notes 1. Nora Ellen Groce, Everyone Here Spoke Sign Language: Hereditary Deafness on Martha’s Vineyard (Cambridge, MA: Harvard University Press, 1985); Nancy L. Eiesland, The Disabled God: Toward a Liberatory Theology of Disability (Nashville, TN: Abingdon, 1994); Lennard J. Davis, Enforcing Normalcy: Disability, Deafness, and the Body (London: Verso, 1996); Nancy Mairs, Waist-High in the World: A Life among the Nondisabled (Boston: Beacon, 1996); Susan Wendell, Rejected Bodies: Feminist Philosophical Refl ections on Disability (New York: Routledge, 1996); Simi Linton, Claiming Disability: Knowledge and Identity (New York: New York University Press, 1998); Brenda Jo Brueggemann, Lend Me Your Ear: Rhetorical Constructions of Deafness (Washington, DC: Gallaudet University Press, 1999); Georgina Kleege, Sight Unseen (New Haven, CT: Yale University Press, 1999); and David T. Mitchell and Sharon L. Snyder, Narrative Prosthesis: Disability and the Dependencies of Discourse

xviii . . . . . Preface to the Twentieth Anniversary Edition (Ann Arbor: University of Michigan Press, 2000); Helen Deutsch and Felicity Nussbaum, eds., “Defects”: Engendering the Modern Body (Ann Arbor: University of Michigan Press, 2000). 2. Stigma theory begins in sociology with Erving Goffman, Stigma: Notes on the Management of Spoiled Identity (New York: Simon & Schuster, 1963). An earlier version of this section appeared in “Reflections on the Fiftieth Anniversary of Erving Goffman’s Stigma,” co-authored with Jeffrey A. Brune, Disability Studies Quarterly 34, 1 (Winter): np. 3. An earlier version of this preface appeared in my article, “Becoming Disabled,” published in the New York Times on August 21, 2016. It is the fi rst article in a new New York Times series on disability by people with disabilities. See http://www.nytimes .com/2016/08/21/opinion/sunday/becoming-disabled.html.

Pr eface & Ack now ledgmen t s • • • • • This book is the consequence of a coming-out process. As is often the case for people with disabilities, I had learned to see my bodily difference as a private matter, an aspect of myself that I acknowledged and negotiated in the world with a mixture of composure and embarrassment. I knew that my body made people uncomfortable to varying degrees and that it was my job to reassure them that I was going to be fine—that we were going to do fine together. I did not identify with disability culture, nor did I have any friends with disabilities. Like many women before feminist consciousness-raising or some black people before the civil rights movement, I saw my difference from the valued norm as a personal situation rather than as a political or social issue. Nevertheless, in my work as a literary critic, I always recognized and identified with the myriad of critically unnoticed disabled characters scattered throughout the works I read. But because the idea of drawing attention to disability contradicted a lifetime of disavowing it, my critical coming out was at first quite tentative and unsettling. Without the bold feminist assertion that the personal is political and its authorization of identity politics as a critical perspective, without the recent broadening of our scope of academic inquiry, I would never have allowed myself to embark on a project such as this. I persisted because the time was ripe to introduce disability into the academy’s interrogation of the politics of representation. I am indebted, then, to this moment in the history of critical thought and cultural studies. Being out about disability has enabled me both to discover and to establish a field of disability studies within the humanities and to help consolidate a community of scholars who are defining it. This book owes its being to the encouragement of Michael Gilmore and to my introduction by the late Irv Zola to the body of scholarship and supportive group of scholars working in disability studies in the social sciences. For generous support and helpful comments on the manuscript at various stages, I am grateful to my colleagues Bob Bogdan, Mary Campbell, Lenny Cassuto,

xx . . . . . Preface & Acknowledgments Lenny Davis, Wai Chee Dimock, Tracy Fessenden, Skip Gates, Caroline Gebhard, Nancy Goldstein, David Gerber, Gene Goodheart, Harlan Hahn, Phil Harper, Liz Hodgson, Amy Lang, Claudia Limbert, Simi Linton, Paul Longmore, Eric Lott, Helena Michie, David Mitchell, Elisabeth Pantajja, Karen Sanchez-Eppler, and Robin Warhol and to the 1992 Commonwealth Center Postdoctoral Fellowship Committee at the College of William and Mary. Several institutions supported this project along the way with research and writing grants. I wish to thank the National Endowment for the Humanities for a Fellowship for University Teachers in 1994–95, the Wood Institute of the College of Physicians for a research fellowship in 1995, the Massachusetts Historical Society for an Andrew W. Mellon Research Fellowship in 1995, the American Association of University Women for a dissertation fellowship in 1991–92, the Brandeis University Department of English for an Andrew W. Mellon Dissertation Fellowship in 1991–92, and the Brandeis University Women’s Studies Department for their dissertation fellowship in 1991–92. I am also grateful to the Women’s Committee of the Modern Language Association for awarding the 1989 Florence Howe Award for Feminist Scholarship to my essay entitled “Speaking About the Unspeakable: The Representation of Disability as Stigma in Toni Morrison’s Novels,” which is an early exploration of a part of chapter 5. I appreciate as well the encouragement of the Society for Disability Studies, which awarded me its Emerging Scholar Award in 1990. Portions of chapters 2 and 5 appear in a different form in an essay on Ann Petry in Women’s Studies International, and a version of chapter 4 is published in American Literature. I appreciate the editors’ permission to reprint this material. I also want to thank Jennifer Crewe and Leslie Kriesel at Columbia University Press for their generous support and careful editing. The constancy, emotional sustenance, patience, encouragement, and support of Bob, Rob, Lena, and Cara Thomson make this project and many other things possible. I also want to acknowledge my sustaining relationships with friends scattered across the country and to thank the many women who helped care for my children over the years so that I had some quiet time to write and read.