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Re-Shaping, Re-Thinking, Re-Defining: Feminist Disabilities Studies

Re-Shaping, Re-Thinking, Re-Defining: Feminist Disabilities Studies

Re-shaping, Re-thinking, Re-defining: ______

Feminist Studies

by Rosemarie Garland-Thomson

Barbara Waxman Fiduccia Papers on Women and with

Center for Women Policy Studies 2001 About the Center for

Women Policy Studies

Since its founding in 1972 as the nation’s first interviews, surveys and secondary data feminist policy research organization, the Center analysis. for Women Policy Studies has been on the front lines of efforts to promote justice and equality for ANALYZES POLICY AND LEGISLATION women. We analyze federal and state policies and legislative initiatives and develop policy options. The Center’s multiethnic and multicultural feminist research, policy analysis and advocacy CONVENES LEADERS bring women’s diverse voices to important By sponsoring seminars, symposia, conferences debates – on women and AIDS, violence against and think tanks, we bring together creative women and girls, reform, access to thinkers and experts to address cutting edge , educational equity, employers’ issues and trends. work/family and workplace policies, reproductive and health, and much more. PUBLISHES REPORTS We publish reports, newsletters, policy papers, The Center is a unique resource for policy research papers, action alerts, press releases makers, advocates and leaders. and op-eds to bring our research findings and policy analyses to wide and diverse audiences. We . . . CONDUCTS ADVOCACY IDENTIFY cutting edge issues and trends and To influence policy change, we share our work shape multiethnic feminist responses. with policy makers and advocates, participate in coalitions, and conduct public and ADDRESS the combined impact of , media outreach programs. race/ethnicity and economic status on issues affecting women and girls. Additional single copies of this publication are available for $14.00 each. Bulk rates are ENSURE that our staff, Board and programs available. reflect women’s diversity – by race and ethnicity, PUBLICATIONS economic status, disability, sexual orientation Center for Women Policy Studies and age. 1211 Connecticut Avenue, NW, Suite 312 Washington, DC 20036 GROUND our work in the belief that all issues 202-872-1770 phone affecting women are interrelated. 202-296-8962 fax [email protected] email The Center . . . www.centerwomenpolicy.org website

CONDUCTS RESEARCH ©Copyright Center for Women Policy Studies We conduct qualitative and quantitative 2001 research, using focus groups, in-depth This publication may not be reproduced. ISBN #1-877966-74-6

TABLE OF CONTENTS

Preface………………………………………………………….. i

Introduction…………………………………………………….. 1 ………………………………………. 1 Feminist Studies………………………………..……… 3

Feminist Disability Studies……………………………………. 4 Aspects of Feminist Disability Studies……………..... 6 Representation…………………………………. 6 The Body………………………………………... 9 The Politics of Medicalization…………. 10 The Politics of Appearance……………. 12 Identity…………………………………………… 15 ………………………………………….. 18

Notes…………………………………………………………….. 21

About The Author………………………………………………. 25

About The Center for Women Policy Studies

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PREFACE

In 1999, at the urging of our sister/colleague Barbara Faye Waxman Fiduccia, the Center for Women Policy Studies launched a new series of publications on women and girls with disabilities – beginning with two groundbreaking reports, Violence Against Disabled Women: Research and Data in Brief and Women and Girls with Disabilities: Defining the Issues – An Overview. Barbara envisioned and co-authored both of these reports and together we began to make plans for several additional reports and for a larger program of policy leadership and training for activist disabled women.

Sadly, we lost Barbara in April of 2001 and we will always miss her great and powerful spirit and her passion to ensure the full of women and girls with disabilities. We continue this work, therefore, in her name, in her feminist spirit, and in her memory.

This report, written by leading Feminist Disability Studies scholar/activist Rosemarie Garland-Thomson, launches the Center’s Barbara Waxman Fiduccia Papers on Women and Girls with Disabilities.

As Barbara and I noted in the Introduction to Women and Girls with Disabilities: Defining the Issues – An Overview:

“Disabled women and girls are of all ages, all racial, ethnic, religious, and socioeconomic backgrounds and sexual orientations; they live in rural, urban and suburban . . . Disabled women and girls live at the corner of disability and womanhood – with two ‘minority’ identities, a double dose of and stereotyping and multiple barriers to achieving their life goals. . . While many women with disabilities derive enormous strength, resilience and creativity from their multiple identities, they also face the consequences of discrimination. . .

Yet, the self-defined needs of women with disabilities remain on the margins of the movements that should represent them – the women’s movement, the disability rights movement, and the civil rights movement – leaving disabled women and girls of all backgrounds essentially invisible.”

The Center for Women Policy Studies presents the Barbara Waxman Fiduccia Papers on Women and Girls with Disabilities as our small contribution to ending this invisibility and bringing the self-defined needs of women and girls with disabilities to policy makers, advocates, educators, and the general public.

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We are especially grateful to Susan O’Hara and the True North Foundation for their generous support for the development and production of this series of reports. And we remain grateful to Felicia Lynch, former president of Women and Philanthropy, for her visionary leadership in bringing the self-defined needs of women with disabilities to philanthropy.

Leslie R. Wolfe President Center for Women Policy Studies September 2001 1

INTRODUCTION

DISABILITY STUDIES: personal misfortune or individual The broad cultural impulse inadequacy. toward “minority” enfranchisement and Disability Studies originally arose that produced the civil rights in the academy from movement in the 1960s and the and has developed more recently in the 1970s in the Humanities where it is an led as well to the disability rights area of critical inquiry that is movement – expressed by the parallel to, informed by, and Americans with Disabilities Act of overlapping with Feminist 1990, the most comprehensive Studies. In its broadest , civil rights bill yet for people with Disability Studies in the disabilities. This landmark law Humanities undertakes a radical requires both the public and critique of disability. The private sectors to accommodate fundamental premise of Disability the corporeal and functional Studies is that disability is a differences we think of as culturally fabricated narrative of disabilities. the body, a system that produces subjects by differentiating and As disability has been recast as a marking bodies. civil rights issues, the emergent academic discipline of Disability This comparison of bodies Studies also has reframed the legitimates the distribution of concept of disability by placing it resources, status, and power in a social context – what is within a biased social and called an ethnicity – architectural environment. As showing that the social problems such, disability has four aspects: and judgments of inferiority that first, it is a system for interpreting disabled people face are bodily variations; second, it is a produced by their interaction with relationship between bodies and a cultural environment, both their environments; third, it is a material and psychological, that set of practices that produce both is at odds either with the the able-bodied and the disabled; functioning or the configuration of and fourth, it is a way of their bodies. Disability Studies describing the inherent instability views the condition of having a of the embodied self. disability as a social relationship characterized by discrimination Disability is a broad term within and rather than as a which cluster ideological

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categories as varied as sick, becomes intense, extravagant, deformed, ugly, old, maimed, and problematic. afflicted, abnormal, or debilitated – all of which disadvantage Disability, then, is the unorthodox people by devaluing bodies that made flesh, refusing to be do not conform to certain cultural normalized, neutralized, or standards. Thus, disability homogenized. More important, in functions to preserve and validate an era governed by the abstract such privileged designations as principle of universal equality, beautiful, healthy, normal, fit, disability signals that the body competent, intelligent – all of cannot be universalized. Shaped which provide cultural capital to by history, defined by those who can claim such status particularity, and at odds with its and reside within these social environment, disability confounds identities. It is, then, the various any notion of a generalizable, interactions between bodies and stable physical state of being. world that create disability from The cripple before the stairs, the the raw material of human blind person before the printed variation and precariousness. page, the deaf person before the radio, the amputee before the Disability demands a reckoning typewriter, and the dwarf before with the messiness of bodily the counter are all proof that the variety, with literal individuation myriad structures and practices run amok. Because disability is of material, daily life enforce the defined not as a set of cultural standard of a universal observable, broadly predictable human being with a narrow range traits, such as femaleness or skin of bodily and mental variation. color, but rather as any departure from the physical, mental, and We need to study disability in the psychological norms and context of what we take to be the expectations of a particular body of knowledge that tells the , disability highlights story of our world and lives – the individual differences. In short, Humanities. This study is the concept of disability unites a essential not to make students heterogeneous group of people and teachers feel more whose only commonality is being comfortable in their skins, but considered abnormal. As the rather to direct the formidable norm becomes neutral in an critical skills of higher education environment created to toward reimagining disability, accommodate it, disability seeing it with fresh eyes and in new ways. This is an important

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educational goal not only for , which focused on people with disabilities, but for achieving equality, to later everyone. formulations of cultural and gynocentric feminisms, which The constituency for Disability highlighted and rehabilitated Studies is all of us – as disability female differences.2 is the most human of experiences, touching every Most recently, the debate family and potentially touching us between those who would all. This universality of disability minimize differences to achieve experience is reflected in the equality and those who would term “temporarily able-bodied” elaborate differences to celebrate (TAB), which serves as a the feminine has been eclipsed check to those who perceive by an investigation of how the themselves to be immutably able- gender system itself operates bodied. and by its profound challenge to the very notion of “” as FEMINIST STUDIES: any kind of unified identity In the 30 years during which category or sociopolitical group.3 has been a part of the By complicating the shared academic conversation, it has identity “woman” and recognizing proved to be flexible, diffuse, and that all women have multiple – perhaps most significantly – identities, academic feminism has self-critical. Thus, we speak now generated an array of critical of “feminisms,” “conflicts in areas of study – Black Feminist feminism,” “hyphenated Studies, Studies, Latina feminisms,” and even “post- Studies, and so on – each an feminism.”1 Historically, acknowledgement that every academic feminism combines the woman is never simply a highly political civil rights and “woman,” but is multiply identified accompanying identity politics across a spectrum of cultural impulses of the 1960s and 1970s categories, many of which are with postructuralism’s theoretical extrapolated from human critique of the liberal humanist physical differences.4 faith in knowledge, truth, and identity – often adding an Most of these areas of study insistence on materiality gleaned within feminism arise from from Marxist thought. The focus conflicts between overarching of feminist conversation has feminist assumptions of the shifted from early debates universality of women’s between liberal and radical experience and the experience or

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perspectives of women who are The strands of feminist thought members of other oppressed or most applicable to Disability stigmatized groups, in addition to Studies are those that go beyond being female. The points of view a narrow focus on gender alone underpinning these diverse to undertake a broad feminist analyses take issue with sociopolitical critique of systemic, a homogeneous category of inequitable power relations based women and focus on the on social categories grounded in essential effort to understand just the body. Feminism becomes a how multiple identities intersect. theoretical perspective and methodology for examining Both inside and outside the gender as an ideological and academy in 2001, feminism is still material category that interacts struggling to articulate both with but does not subordinate theory and practice that other social identities or the adequately address cultural and particularities of embodiment, corporeal differences among history, and location that informs women. In its effort to highlight personhood. Briefly put, gender, feminism has sometimes feminism’s often conflicting and obscured other identities and always complex aims of categories of cultural analysis – politicizing the materiality of such as race, ethnicity, sexuality, bodies and rewriting the category class, and physical ability. As of woman combine exactly the feminism recognizes this methods that should be used to omission, however, the voices of examine disability. and for women with disabilities are beginning to be heard across the Humanities.

FEMINIST DISABILITY STUDIES

Feminism and Disability Studies “disability” in the service of converge in Feminist Disability integrating disabled people more Studies. Just as Women’s fully into our society. Studies expands the lexicon of what we imagine as womanly and Feminist Disability Studies brings seeks to understand and the two together to argue that destigmatize the identity cultural expectations, received “woman,” so has Disability attitudes, social institutions, and Studies examined the identity their attendant material

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conditions create a situation in their bodies as unfit for which bodies that are categorized motherhood or of themselves as as both female and disabled are childlike objects who occasion disadvantaged doubly and in other people’s virtue. Whereas parallel ways. Feminist Disability motherhood is often seen as Studies interprets disability as a compulsory for women and cultural rather than an individual therefore potentially oppressive, or medical issue and insists on the opposite is true for disabled examining power relations rather women, who are denied or than assigning when discouraged from this analyzing cultural representations reproductive role. Perhaps more of oppressed groups. problematic still, the pro-choice rationale for abortion rights Feminist Disability Studies seldom questions the assumption emphasizes changing public that “defective” fetuses, destined policy and cultural institutions to become disabled people, rather than viewing the problems should be eliminated.5 of disabled women as residing in their own supposedly inferior The controversial feminist ethic of bodies. Within the critical care also has been criticized by framework of Feminist Disability feminist disability scholars for Studies, disability becomes a undermining symmetrical, representational system rather reciprocal relations among than a medical problem, a social disabled and nondisabled women construction instead of a personal as well as for suggesting that misfortune or bodily flaw, and a care is the sole responsibility of subject appropriate for wide- women. Making disabled women ranging intellectual inquiry rather the objects of care risks casting than a specialized field within them as helpless in order to medicine, rehabilitation, or social celebrate nurturing as virtuous work. feminine agency. Philosopher Anita Silvers explains that “far Feminist Disability Studies also from vanquishing patriarchal seeks to augment and correct systems, substituting the ethics of traditional feminism, which caring for the ethics of equality sometimes ignores, threatens an even more misrepresents, or conflicts with oppressive paternalism.”6 the concerns of women with disabilities. For example, One of the most pervasive disabled women must sometimes feminist assumptions that defend against the assessment of undermines some disabled

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women’s struggle is the liberal implications. Feminist Disability of autonomy and Studies can be divided into four independence that fuels the aspects, in which these premises broader impulse toward women’s operate: representation, the . By tacitly body, identity, and activism. incorporating the liberal premise that levels individual Representation: Feminist characteristics to posit an Disability Studies probes the abstract, disembodied subject of issue of representation in its democracy, feminist practice broadest sense to understand the often leaves no space for the saturating of the material world needs and accommodations that with meaning. Indeed, human disabled women’s bodies language itself, which enables require.7 Prominent disability thought and knowledge, is rights and feminist activist Judy representation. In this sense, Heumann’s angry and disability and gender are stories disappointed words reflect the we tell about bodies and are our alienation that results: “When I systematic ways of representing come into a room full of feminists, bodies. Disability and gender are all they see is a .” representations that historians can chart over time, ASPECTS OF FEMINIST interpretations that philosophers DISABILITY STUDIES: can query, images that religious The major work of Feminist scholars can trace, concepts that Disability Studies is to undertake geographers can probe, traditions a complex critique of gender and that rhetoricians can contest, and disability as intertwined fictions that literary critics can exclusionary and oppressive reveal. systems rather than as the natural and appropriate order of These narratives shape the things. The fundamental material world, inform human premises of feminist disability relations, and mold our sense of critical theory are: that who we are. Many cultural representation structures reality; stories simplify disability’s that the margins define the complexities, limit the lives and center; that gender and disability govern the bodies of disabled are ways of signifying women. Indeed, these stories relationships of power; that ultimately undergird the human identity is multiple and exclusionary environment and the unstable; and that all analysis discrimination that and evaluation has political disabled women face and warrant

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the flight from disability so What is less widely recognized, characteristic of our cultural however, is that this collection of moment. Feminist Disability interrelated characterizations is Studies seeks to challenge our precisely the same as is collective stories – our cultural attributed to people with representations – about disabled disabilities. women. Many parallels exist between the Cultural stories about women and social meanings attributed to disability go back to the female bodies and those beginnings of western civilization. assigned to disabled bodies. Classical thought has long Both are cast as deviant and defined women and disabled inferior; both are excluded from people as being the same. For full participation in public as well example, Aristotle defined as economic life; both are defined women as “mutilated males,” thus in opposition to a norm that is suggesting that women be seen assumed to possess natural as disabled men. Indeed, physical superiority. Aristotle describes women in exactly the same terms we now Indeed, equating femaleness with use to describe disability; disability is common, sometimes femaleness is “a departure from to denigrate women and type” and women have “improper sometimes to defend them. form.” We are, in a word, Examples abound: Freud “monstrosit[ies].”8 According to delineated femaleness in terms of this view, women are literally the castration; late 19th century first freaks or what Nancy Tuana physicians defined menstruation calls “misbegotten men.”9 The as a disabling and restricting tradition that Aristotle initiated “eternal wound”; Thorstein envisions women as what we Veblen described women in 1899 might now call “congenitally as being literally disabled by deformed” as a result of their feminine roles and costuming. “genetic disability.” And 20th century feminists invoke negative images of disability to The feminist investigation of describe the oppression of gender since Simone de women; for example, Jane Flax Beauvoir’s landmark 1949 study, asserts that women are , reveals how “mutilated and deformed” by women are assigned a cluster of sexist ideology and practices.10 ascriptions, such as Aristotle’s, that mark us as the “Other.”

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This persistent intertwining of formation, or hypoplasia, disability with femaleness in the meaning underdevelopment. western tradition provides a What Susan Bordo calls the “too- starting point for Feminist muchness” of women also makes Disability Studies, as bodily disabled people equally functioning and configuration threatening in the cultural anchor the way western tradition resonances we give to defines both femaleness and differences.13 Think of the disability. Most fundamentally, excess embodied in the figure of both women and disabled people the monster, the witch or the are imagined as being pure body, madwoman – all enduring cultural unredeemed by mind or spirit. images of disability and often in Women are cast as tethered to its female form. materiality, to “immanence,” in Simone de Beauvior’s analysis.11 Each of these perspectives Moreover, this sentence of measures women and disabled embodiment is conceived as people against a normative either a lack or an excess. standard body and finds them Women, for example, are wanting. Either they are not imagined as castrated or “penis- enough, or they are too much. poor” in Marge Piercy’s wonderful Whether cast as superfluous or term.12 They are hysterical or inadequate, women and disabled have overactive hormones. people are always wrong. Theirs are supposedly the Women have been imagined as ungovernable, helpless, alternately having insatiable dependent, weak, vulnerable, appetite in some eras and as and incapable bodies. This pathologically self-denying in cultural narrative merges the other times. Similarly, disabled female body and the disabled people are portrayed as having body and produces an ideology extra chromosomes or limb that renders women and disabled deficiencies. The differences of people both redundant and disability are cast as atrophy, expendable. Thus, they are the meaning degeneration, or as objects of female infanticide, hypertrophy, meaning selective abortion, eugenic enlargement. Women with programs, assisted suicide, bride abundant body hair are described burning, honor killings, domestic as having hypertrichosis. People violence, and the classical with disabilities have aplasia, practice of exposing disabled meaning absence or failure of infants to die.

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Another aspect of this people, the assumption that they condemnation to materiality that are sexless or are inappropriate defines women and disabled sexual partners.18 These people is their role as spectacles. stereotypical, often unexamined Women are the proper object of stories ultimately undergird the male , while disabled exclusionary environments, people are the proper object of , the stare.14 Beauty contests, sociopolitical marginalization, and girlie shows, freak shows, violence. telethons, and medical theater all testify to an appropriating to-be- Feminist Disability Studies has looked-atness that supposedly challenged these tired but inheres in the female and or the persistent narratives by focusing disabled body. Leering at women on gender and disability as and gawking at disabled people representational systems, as are historical practices that ways of giving meaning to human constitute female and disabled variations. From the earliest personhood in the social world. “images of” surveys to the most nuanced poststructuralist All these social scripts, these critiques of identity, perhaps the systems of representation, these most fundamental goal of collective cultural stories about Feminist Disability Studies is to disability and femaleness shape reimagine women and people the material world, inform human with disabilities. All the tools of relations, and mold our of critical theory are being recruited who we are. For example, the to show that gender and disability voice that rings through the head are discourses to be charted over of Virginia Woolf’s famous time, aesthetic motifs to be character, Lilly Brisco, in To the probed, rhetorical traditions to be Lighthouse, insists that: “Women contested, metaphors to be can’t paint; women can’t write.”15 deconstructed, performances to Think of what the concept of be analyzed, and fictions to be “throwing like a ” tells us about revealed. how women learn that their bodies are objects not actors in The Body: A second aspect of the world.16 Consider the Feminist Disability Studies is its racialism and stigma embedded focus on the body. While in a term such as “mongoloid confronting issues of idiot.”17 Look at what Harlan representation is certainly crucial Hahn calls the pervasive “asexual to Feminist Disability Studies’ objectification” of disabled cultural critique, the field does not

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focus exclusively on that issue. The goal of medicine has been to In fact, what distinguishes both cure, fix, eliminate, or control Feminist Studies and Disability these ostensibly deviant bodies. Studies from many other This ideology of cure is not academic critical paradigms is isolated in medical texts or that both scrutinize a wide range charity campaigns but in fact of material practices involving the permeates cultural attitudes and lived body. practices about disability.

Perhaps because women and Women have endured disabled people so often are clitoridectomies, ovariotomies, closely associated with the body unnecessary hysterectomies, in western thought, their actual radical mastectomies, and drugs bodies have been subjected to regulate their supposedly relentlessly to what Michel deviant sexualities and Foucault calls “disciplining.”19 In personalities. Disabled people as other words, tremendous social well are routinely subjected to pressures enforce practices that invasive surgical procedures and shape and regulate both female medication intended not to bodies and disabled bodies. The improve their lives, but rather to many practices directed at standardize their bodies and making female and disabled eliminate any physical differences bodies conform to cultural from ostensibly normal people. expectations fall into two broad interrelated and ideologically Research on women’s health has loaded categories: medicine and been inadequate or brutal, just as appearance. funding to enhance the economic status of disabled people is The Politics of always outstripped by Medicalization: Feminist investments in medical Disability Studies undertakes a procedures to normalize disabled wide-ranging critique of the bodies. Both women and medicalization of female and disabled people have been disabled bodies as both women institutionalized, forcibly and disabled people have been sterilized, euthanized, mutilated, imagined as medically abnormal and literally reshaped in the – as the quintessential sick ones name of “their own good.”20 – which has entailed distinct consequences in everything from Congenitally disabled people are epidemiology and diagnosis to particularly objects of these prophylaxis and therapeutics. normalizing procedures. Two

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examples of this will-to-correct testing and selective abortion the disabled body are the complicates much of the feminist treatment of conjoined twins and rhetoric about these practices.23 the treatment of intersexed Some disability activists argue individuals, better known as that the “choice” to abort fetuses , who display with disabilities is a coercive form ambiguous genitalia and gender of against the disabled. characteristics. Both of these Similarly, genetic testing and forms of embodiment are such enterprises as the Human congenital variations that Genome Project are often spectacularly violate sacred critiqued as enactments of of western culture. eugenic ideology, what Evelyn Conjoined twins contradict our Fox Keller calls a “ of notion of the individual as normalcy.”24 Aging is also at discrete and autonomous – once a women’s issue and a actually, quite similarly to the way disability issue, since a significant pregnancy does.21 Intersexed majority of elderly people are infants challenge our insistence disabled women.25 Depression, that biological gender is anorexia, and agoraphobia are unequivocal.22 psycho-physical disabilities that are linked to gender roles.26 So threatening to the order of things is the natural embodiment In addition, the politics of of conjoined twins and intersexed prosthetics, a disability concern, people that they are almost enters the purview of women’s always surgically normalized studies when we consider the through and controversial use of breast mutilation. So intolerable is their implants and prostheses for insult to the dominant ideologies breast survivors or other that the testimonies of adults with cosmetic prostheses such as these forms of embodiment who corsets.27 Obesity is a disability say that they are happy the way that qualified women to be freak they are is routinely ignored in show performers in the 19th and establishing the rationale for early 20th centuries; to quote medical treatment. Susie Orbach – “fat is a feminist issue.”28 Indeed, the tyranny of Feminist Disability Studies slenderness is perhaps the most focuses as well on several other virulent of the ideologies of aspects of embodiment. A beauty used to discipline and disability perspective on such control the female body. reproductive issues as genetic

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The Politics of bodies on the basis of their Appearance: Given that the appearance. Focusing on medicalization of female and appearance enables us to disabled bodies is very often critique not only the system of employed in the service of the standards called beauty, but also politics of appearance, beauty is to consider how appearance a system that Feminist norms contribute to , Disability Studies examines and , and other forms critiques. We have been taught of social oppression. Beauty, to assume rather uncritically that then, can be seen in this way as beauty is a relatively fixed a coercive cultural ideology, a set property of the female body, even of values and practices that, like though most of us recognize the disability, has consequences in historical and cultural relativity of the material world. appearance standards. Beauty has been traditionally framed as Lynn S. Chancer asserts that the an aesthetic quality, whether ideology of beauty produces what universal or subjective, and she calls, not without irony, imagined as free from political “looks-ism,” which she defines as implications or relations of power. “a discriminatory phenomenon [that] sets up categorical While many are willing to divisions, placing far greater challenge impossible beauty importance for one sex than the norms, most still tend to think of other on the cultivation and beauty in terms of personal maintenance of particular bodily adequacy or inadequacy. appearances to gain love, status, Beauty, we have learned from and recognition.” Moreover, she our culture, is something continues, these “beauty corporeal that one has or does expectations are systemic”; that not have – just like a disability. is, they are a “social fact,” to use But whereas having a disability Emile Durkheim’s term for an seems a disadvantage, having aspect of culture that “exist[s] beauty seems an advantage. above and beyond the ability of individuals to control.”29 Feminist Disability Studies shifts our received assumptions about Like disability, beauty is a system beauty by suggesting that beauty of representations, a set of has a political dimension. Social practices and meanings, and an discrimination and political historically shifting ideology of the subordination are linked to the female body that we receive upon cultural valuing and devaluing of entering the world. As such, it is

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a way of looking at, thinking instrument of the omnipotent about, and interpreting bodies individual will, an instrument of that is at once culturally agency that is both pliable and determined and yet by no means invulnerable, that we can control unalterable. and alter. This notion is manifested today in the institution Feminist Disability Studies of cosmetic and reconstructive “denaturalizes” beauty and , as is the belief that the normalcy to transcend the usual body is not only imagined to be way of thinking about these value but literally is plastic, almost systems – as an aesthetic quality infinitely transformable, not just in of bodies. Feminist Disability its actions or gestures, but in the Studies moves us from thinking very form of its flesh.30 about bodies as naturally having certain meanings to seeing them Such plasticity takes on moral as social products that are dimensions in a society devoted informed by our cultural to the fantasy of self- interpretations of them. Feminist improvement inflected by the duty Disability Studies shows that to consume that is characteristic beauty and normalcy are a series of late capitalism. Think, for of practices and positions that example, of the moral injunction women take in order to avoid the against fat that is so common stigmatization of ugliness and today.31 What is most important abnormality. for the politics of appearance that includes both beauty and Appearance norms have a long disability in its purview is that history in western culture. While cultural practices shape bodies the classical was designed according to a strict standard of to be worshipped rather than normalcy that is not only imitated, the notion of an ideal privileged but that also is framed has migrated to become the as a moral imperative. standard which we are expected to achieve. The ideological The particularities we call systems called beauty and disability, race, and ethnicity disability both posit a certain kind generally resist this coercive of body, a malleable body that standardization more stubbornly can in some sense assume any than the bodies we imagine as identity or form that it chooses. being nondisabled, white, or This fantasy of the malleable beautiful. They often are not so body conforms to modernity’s plastic or require more invasive notion that the body is a neutral or extreme standardization

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procedures. Moreover, looking” noses, thighs, breasts, postmodern culture draws a line chins, and so on. Thus, women’s between what it posits as fitness and disabled people’s unmodified or cosmetic disciplinary bodies are presented as procedures, which it often unnatural and abnormal while the challenges, and the normalizing surgically altered bodies are procedures it imposes upon portrayed as normal and natural. impaired bodies under the almost never questioned ideological Beauty ideology, and with it banners of health, reconstruction, normalcy, has become more or rehabilitation. coercive over the last 25 years. Ironically, this rising concern with Cosmetic surgery, which is used beauty has occurred exactly at overwhelmingly to standardize the same time as the legal and women’s bodies, now enforces social changes wrought by feminine beauty standards. feminism. This escalation can be Reconstructive surgery, which is documented by the dramatic used exclusively to eliminate increase in the occurrence and disability, enforces the standards reporting of disorders and of normalcy. Both procedures the recent burgeoning commodify the body and are commercialization of beauty presented as enhancements that practices such as dieting (a $33 correct flaws or improve the billion a year industry), cosmetics psychological well being of the (a $20 billion a year industry), patient. and cosmetic surgery ($33 million and growing, with nine times The twin ideologies of normalcy more women than men as and beauty posit female and clients). Naomi Wolf has disabled bodies both as convincingly shown that the spectacles to be looked at and as social demand to configure our plastic bodies to be shaped bodies according to beauty’s infinitely to conform to a set of standards and to create its standards called “normal” and effects with commercial products “beautiful.” In the language of has escalated dramatically in the cosmetic surgery, for example, 20th century, not only as the unreconstructed female body capitalism has demanded is persistently cast as having expanded markets for beauty “abnormalities” that can be products but, more interestingly, “corrected” by surgical as women have achieved political procedures which “improve” gains and more equality. appearance by producing “natural

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Now that women have access to the hardest thing for disabled the vote, education, employment persons to hold onto.”33 opportunities, and legal freedoms, Wolf argues, beauty The 1990s version of Ellen Stohl has come to be the last restrictive is Aimee Mullins, a champion institution and has consequently runner, fashion model, celebrity, had to take over the repressive and double amputee – who also work that an entire system of was one of People Magazine’s 50 restraining institutions Most Beautiful People of 1999. accomplished in the 19th century An icon of disability pride and and before.32 While women have equality, Mullins exposes – in fact been liberated from many calls attention to – the mark of restrictions, they have not been her disability in most photos, freed from the social mandate to refusing to normalize or hide her pursue beauty. disability in order to pass as nondisabled. Indeed, her public Feminist Disability Studies does version of her career is that her not suggest that women and disability has been a benefit – disabled people should not use she has several sets of legs, both modern medicine to improve their cosmetic and functional, and is lives or help their bodies function able to choose how tall she wants more fully. Rather, it illuminates to be.34 This narrative of and explains instead of enforcing advantage works against the set orthodoxy. Feminist Disability traditional narrative of Studies offers a counter logic to overcoming that is usually the powerful cultural mandates to ascribed to disabled people in the be normal/beautiful at any cost. public sphere.

The ideology of beauty in the Identity: A third aspect of context of disability raises critical Feminist Disability Studies is an issues that are complex and inquiry into how identity operates provocative. For example, in society. The most productive questions about gender, challenge that feminist thought sexuality, and disability were has faced is the challenge to the raised by the photo spread of unity of the category “woman,” on Ellen Stohl, a paraplegic actress which the entire feminist who appeared as the enterprise seemed to rest. centerfold of Playboy magazine Recognizing that all women have in 1987. Stohl wrote to editor multiple identities compelled Hugh Hefner that she chose to be feminists to turn away from an in Playboy because “sexuality is exclusive male/female focus.

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Feminism began instead to look gender scripts inflect disabled at the exclusionary, essentialist, identity. oppressive aspects of the category “woman” itself. For example, Feminist Disability Studies illuminates the ways that The kind of rigorous self-critique identity categories operate and feminism has undertaken is at interact within a political and once humbling and heartening. economic context by looking at Expanding our understanding of the Americans with Disabilities how various registers of identity Act of 1990. This historic piece such as gender, race, class, and of civil rights legislation creates sexuality intrude upon and inflect the legal category of “the one another sharpens feminist disabled” by broadly defining a analyses and critiques. Disability person as disabled if she has a is, of course, one such identity condition that substantially limits category that complicates the a major life activity or – in a idea that all women are gesture toward a social model of essentially alike and illuminates disability – is perceived as having the workings of gender in such a condition. particular ways. Indeed, disability disrupts the unity of the category The courts, of course, are “woman” and challenges the scurrying to limit and clarity this primacy of gender. definition on a case-by-case basis. Who is disabled and who As a category of analysis, is able-bodied is being disability poses invigorating determined just as race was questions to feminism about legally codified in the 19th issues such as power relations century, although of course for among women, the status of the different ends. Is one disabled, lived body, the privileges of being for instance, if function is normal, the social construction of normalized by prostheses such the able-bodied, and the uses of as glasses, hearing aids, or identity politics. In turn, gender canes? Is one disabled by a complicates Disability Studies in facial deformity that makes one equally productive ways by “ugly” but does not affect introducing such concerns as functioning? What about power differentials within the premenstrual syndrome, disability community, depression, HIV infection, reproductive and sexuality infertility, aging, chronic pain, differences, and the ways that fetal alcohol syndrome? Suddenly, “them” and “us” are not

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so clear – and gender is feminist practice of explicitly implicated throughout. situating oneself when speaking, allow for complicating inflections Feminist Disability Studies such as disability or, more pressures both broadly, body configuration – and Disability Studies to attributions such as fat, acknowledge physical diversity disfigured, abnormal, ugly, or more thoroughly in the task of deformed – to enter into our exploring identity. Perhaps considerations of identity and feminism’s most useful concept subjectivity. Such a dismantling for Feminist Disability Studies is of the unitary category “woman” standpoint theory, which has enabled feminist theory to recognizes the immediacy and encompass, although not without complexity of physical existence. contention, such feminist Emphasizing the multiplicity of specializations as, for example, women’s identities, histories, and Patricia Hill Collins’ “Black bodies, this theory asserts that feminist thought” or my own individual situations structure the explorations of a “feminist subjectivity from which particular disability studies.” So just as women speak and perceive.35 feminist theory can bring to disability theory strategies for Incorporating postmodernism’s analyzing the meanings of challenge of the objective physical differences and Enlightenment viewpoint – the identifying sites where those supposed view from nowhere – meanings influence other feminist standpoint theory has discourses, it can help articulate reformulated gender identity as a the uniqueness and physicality of complex, dynamic matrix of identity as well. interrelated, often contradictory, experiences, strategies, styles, Feminist Disability Studies and attributions mediated by focuses on the singularity and culture and individual history. perhaps the immutability of the This matrix cannot be separated flesh, and at the same time meaningfully into discrete entities questions the identity it supports. or ordered into a hierarchy. For example, Nancy Mairs explores the politics of self- Acknowledging identity’s naming, a common feminist particular, complex nature allows theoretical practice, in regard to characteristics beyond race, women with disabilities. Mairs class, and gender to emerge. claims the appellation “cripple” Standpoint theory, and the because it demands that others

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acknowledge the particularity of from the constant task of her body. “People…wince at the exposing just how relentless and word ‘cripple’,” Mairs contends. pervasive oppression has been – Even though she retains what and is. has been a derogatory term, she insists on determining its This is a different kind of activism significance herself: “Perhaps I from demonstrations and want them to wince. I want them marches. While less theatrical, to see me as a tough customer, the activism focused on one to whom the integrating education, in the very fates/gods/viruses have not been broadest sense of that term, is no kind, but who can face the brutal less ardent. And higher truth of her existence squarely. education is the grass roots of As a cripple, I swagger.” the educational enterprise. College and university teachers Mairs is not simply celebrating shape the communal knowledge the term of otherness or base that is disseminated from attempting to reverse its negative kindergarten through the connotation; rather, she wants to university. Activist academic call attention to the material practices include exposing the reality of her crippledness, to her workings of oppression, bodily difference and her constructing a tradition of experience of it. Mairs chooses , historical and here to define her identity in textual retrieval, canon terms of the significance of her reformation, finding and being pain and her struggle with an role models, mentoring, environment built for other curriculum reform, course and bodies.36 program development, and integrating disability into existing Activism: Feminist Disability syllabi. Studies also focuses on activism for change, which augments and Part of the activism inherent in remedies the accompanying Feminist Disability Studies focus on negative emerges in its commitment to representations of women and study the lives and artistic disabled people, the products of women with pathologizing of their bodies, and disabilities. To analyze who the politics of appearance. disabled women are and what Important activist strands have they create expands our developed in both feminism and understanding of human variation Disability Studies that shift them and enriches our collective

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knowledge of humankind, in the eye with gnarled fist.” This especially the ways that gender image of the disabled body as a operates. For example, the visual assault, a shocking judgment that the disabled spectacle to the nondisabled eye, woman’s body is asexual and captures a defining aspect of unfeminine creates what Michelle disabled experience. Fine and Adrienne Asch term “rolelessness,” a social invisibility Whereas feminists claim that and cancellation of that women are objects of the can prompt disabled women to evaluative male gaze, Wade’s claim the female identity that the image of her body as “a sock in culture denies them. Cheryl the eye” subtly reminds us that Marie Wade insists upon a the disabled body is the object of harmony between her disability the stare. If the male gaze and her womanly sexuality in a makes the normative female a poem characterizing herself as sexual spectacle, then the stare “The Woman With Juice.”37 sculpts the disabled subject into a grotesque spectacle. The stare As Mairs’ exploration of self- is the gaze intensified, framing naming and Wade’s assertion of her body as an icon of deviance. sexuality suggest, a feminist Indeed, as Wade’s poem disability politics would uphold suggests, the stare is the gesture the right of women to define their that creates disability as an physical differences and their oppressive social relationship. femininity for themselves rather And as every person with a than conforming to received visible disability knows intimately, interpretations of their bodies. managing, deflecting, resisting, or Wade’s poem of self-definition renouncing that stare is part of echoes Mairs by maintaining the daily business of life. firmly that she is “not one of the physically challenged.” Rather, One example of academic she claims, “I’m the Gimp/I’m the activism that is exemplary in Cripple/I’m the Crazy Lady.” Feminist Disability Studies is Affirming her body as at once what might be called a sexual and different, she asserts, methodology of intellectual “I’m a French kiss with cleft tolerance. This is not tolerance in tongue.” Resisting the cultural the more usual sense of tendency not only to erase her tolerating each other – although sexuality but to deprecate and that would be useful as well. objectify her body, she Rather, it is the intellectual characterizes herself as “a sock position of tolerating what has

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previously been thought of as Feminist Disability Studies incoherence. contends that integrating the study of disability – as a category As feminism has embraced the of analysis, as a historical paradoxes that have emerged community, as a set of material from its challenge to the gender practices, and as a system, it has not collapsed into representational system – into chaos, but rather has developed and all a methodology that tolerates educational enterprises will help internal conflict and contradiction. integrate the sociopolitical world This method asks difficult for the benefit of everyone. questions but accepts provisional answers. This method Disability, like gender and race, is recognizes the power of identity everywhere, once we know how at the same time that it reveals to look for it. Integrating it will identity as a fiction. This method enrich and deepen all our both seeks equality and claims teaching and scholarship to difference. This method allows include, for example, the history us to teach with authority at the of the vibrant and variegated same time that we reject notions disability rights and independent of pedagogical mastery. This living movements into studies of method establishes institutional other social justice movements. presences even while it Ethics is a disability issue, as is acknowledges the limitations of the feminist ethic of care. institutions. This method Literature, art, and music also validates the personal but have been shaped by disability implements disinterested inquiry. experience – from Oedipus to This method writes new stories Audre Lorde, from Rembrandt to and recovers traditional ones. Toulouse-Lautrec to Frida Kahlo,

from Beethoven to Stevie Considering disability as a vector Wonder. Many of our most of identity that intersects gender developed historical fields, such is one more internal challenge. as women’s, labor and While it threatens the coherence immigration history, are deeply of the category “woman,” informed by disability. Women’s Studies can accommodate such complication As with gender, race, and and the contradictions it creates. sexuality, to understand how Indeed, Feminist Disability disability operates is to Studies strengthens the critique understand what it is to be fully that is feminism and deepens the human. critique that is Disability Studies.

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NOTES

1. See Diane Price Herndl and Robyn Warhol, Feminisms (2nd ed., New Brunswick: Rutgers University Press, 1997); Marianne Hirsch and Evelyn Fox Keller, eds., Conflicts in Feminism (New York: Routledge, 1990). “Hyphenated Feminism” is used by Judith Grant, Fundamental Feminism: Contesting the Core Concepts of Feminist Theory (New York: Routledge, 1993), p. 3; Brigitta Boucht et al., (Esbo, Finland: Draken, 1991).

2. For an overview of the history of academic feminist theory, see Elizabeth Weed, “Introduction: Terms of Reference,” in Elizabeth Weed, ed., Coming to Terms: Feminism, Theory, Politics (New York: Routledge, 1989), pp. ix-xxxi. For discussion of these debates and bifurcations in feminism, see Linda Alcoff, “ Versus Post-Structuralist Feminism: The Identity Crisis in Feminist Theory,” Signs, 13 (3): 405-36; Hester Eisenstein, Contemporary Feminist Thought (Boston: G.K. Hall, 1983); and , Feminist Theory (New York: Continuum, 1992).

3. Spelman, Elizabeth V. Inessential Woman: Problems of Exclusion in Feminist Thought (Boston: Beacon, 1988).

4. See Collins, Patricia Hill. Black Feminist Thought: Knowledge, Consciousness, and the Politics of Empowerment. (Boston: Unwin Hyman, 1990).

5. Parens, Erik and Adrienne Asch. Prenatal Testing and Disability Rights. (Washington, DC: Georgetown University Press, 2000).

6. Silvers, Anita. “Reconciling Equality to Difference: Caring (f)or Justice for People with Disabilities.” 10, no. 1 (Winter, 1995): 30-55.

7. Fine, Michelle and Adrienne Asch, eds. Women with Disabilities: Essays in Psychology, Culture, and Politics. (Philadelphia: Temple University Press, 1988); Wendell, Susan. The Rejected Body: Feminist Philosophical Reflections on Disability. (New York: Routledge, 1996).

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8. Aristotle. Generation of Animals. Trans. A.L. Peck. (Cambridge: Harvard University Press, 1944).

9. Tuana, Nancy. The Less Noble Sex: Scientific, Religious, and Philosophical Conceptions of Woman’s Nature. (Bloomington: Indiana University Press, 1993).

10. See Patricia Vertinsky, “Exercise, Physical Capability, and the Eternally Wounded Woman in Late Nineteenth-Century North America,” Journal of History 14 (1): 7; Thorstein Veblen, The Theory of the Leisure Class (1899; reprint, Boston: Houghton Mifflin, 1973); Jane Flax, Thinking Fragments: , Feminism, and Postmodernism in the Contemporary West (Berkeley: University of California Press, 1990), p. 136.

11. de Beauvoir, Simone. The Second Sex. 1952. Trans. H.M. Parshley. (New York: Vintage Books, 1974).

12. Piercy, Marge. “Unlearning to Not Speak.” Circles on the Water. (New York: Knopf, 1985) p. 97.

13. Bordo, Susan R. Unbearable Weight: Feminism, Western Culture, and the Body. (Berkeley: University of California Press, 1993), pp. 160-161.

14. Kaplan, E. Ann. “Is the Gaze Male?” In Ann Snitow, Christine Stansell, and Sharon Thompson, eds., Powers of Desire: The Politics of Sexuality. (New York: Monthly Review Press, 1983), pp. 309-25; . “Visual Pleasure and Narrative Cinema” (1975) in Feminisms, eds. Robyn Warhol and Diane Price Herndl. (2nd ed., New Brunswick: Rutgers University Press, 1997); “Staring Back: Self-Representations of Disabled Performance Artists.” American Quarterly 52, 2 (June 2000): 334-8.

15. Woolf, Virginia. To the Lighthouse. 1927. (New York: Harcourt Brace and World, 1955), p. 75.

16. Young, Iris Marion. Throwing Like a Girl and Other Essays in and Social Theory. (Bloomington: Indiana University Press, 1990).

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17. Berube, Michael. Life As We Know It: A Father, A Family, and an Exceptional Child. (New York: Pantheon Books, 1996).

18. Hahn, Harlan. “Can Disability Be Beautiful?” Social Policy (Fall 1988): 26-31.

19. Foucault, Michel. Discipline and Punish: The Birth of the . Trans. Alan M. Sheridan-Smith. (New York: Vintage Books, 1979).

20. Ehrenreich, Barbara and Deirdre English. For Her Own Good: 150 Years of the Experts’ Advice to Women. (Garden City, N.Y.: Anchor Books, 1979).

21. Clark, David L. and Catherine Myser. “Being Humaned: Medical Documentaries and the Hyperrealization of Conjoined Twins.” Thomson, Rosemarie Garland, ed. Freakery: Cultural Spectacles of the Extraordinary Body. (New York: New York University Press, 1996), pp. 338-355.

22. Dreger, Alice Domurat, ed. in the Age of Ethics. (Hagerstown, MD: University Publishing Group, 1999). Fausto- Sterling, Ann. Sexing the Body: Gender Politics and the Construction of Sexuality. (New York: Basic Books, 2000); Kessler, Suzanne. Lessons from the Intersexed. (New Brunswick: Rutgers University Press, 1998).

23. Hubbard, Ruth. “Who Should and Should Not Inhabit the World.” The Politics of Women’s Biology. (New Brunswick: Rutgers University Press, 1990), pp. 179-198; Parens, Erik and Adrienne Asch. Prenatal Testing and Disability Rights. (Washington D.C.: Georgetown University Press, 2000).

24. Keller, Evelyn Fox. Refiguring Life: Metaphors of Twentieth-Century Biology. (New York: Columbia University Press, 1995).

25. Woodward, Kathleen, ed. Figuring Age: Women, Bodies, Generations. (Bloomington: Indiana University Press, 1999).

26. Bordo, Susan R. Unbearable Weight: Feminism, Western Culture, and the Body. (Berkeley: University of California Press, 1993).

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27. Lorde, Audre. The Cancer Journals. (San Francisco: Aunt Lute Books, 1980).

28. Orbach, Susie. Fat is a Feminist Issue: the Anti-diet Guide to Permanent Weight Loss. (New York: Paddington Press, 1978).

29. Chancer, Lynn S. Reconcilable Differences; Confronting Beauty, , and the Future of Feminism. (Berkeley: University of California Press, 1998), p. 83.

30. Bordo, Susan R. “‘Material Girl’: The Effacements of Postmodern Culture.” Unbearable Weight: Feminism, Western Culture, and the Body. (Berkeley: University of California Press, 1993); Featherstone, Mike. “The Body in Consumer Culture.” The Body: Social Process and Cultural Theory, eds. Mike Featherstone, et al. (London: Sage, 1991).

31. Brown, Catrina and Karin Jaspers, eds. Consuming Passions: Feminist Approaches to Weight Preoccupation and Eating Disorders. (Toronto: Second Story Press, 1993); Seid Roberts Pollack. Never Too Thin: Why Women Are At War With Their Bodies. (New York: Prentice Hall, 1989).

32. Wolf, Naomi. The Beauty Myth: How Images of Beauty Are Used Against Women. (New York: William Morrow, 1991).

33. “This Sunny Californian Isn’t About to Let Disability Diminish Her Lust for Life.” Playboy (July, 1987), p. 68.

34. Johnette Howard. “She’s Got Legs.” http://cnnsi.com/womens/features/1997/magazine/gotlegs2.html

35. Collins, Patricia Hill. Black Feminist Thought: Knowledge, Consciousness, and the Politics of Empowerment. (Boston: Unwin Hyman, 1990).

36. Mairs, Nancy. “On Being a Cripple.” Plaintext: Essays. (Tucson: University of Arizona Press, 1986), pp. 9-21.

37. Wade, Cheryl Marie. “I Am Not One of Them.” Ms. 11, no. 3 (Nov/Dec, 1991), p. 57. 25

ABOUT THE AUTHOR

Rosemarie Garland-Thomson is Graduate Associate Professor of English at Howard University in Washington, DC, specializing in American literature, feminist theory, and disability studies. She is the author of Extraordinary Bodies: Figuring in American Literature and Culture (Columbia University Press, 1997), the editor of Freakery: Cultural Spectacles of the Extraordinary Body (New York University Press, 1996) and co-editor of Enabling the Humanities: A Sourcebook for Disability Studies in Language and Literature (Modern Language Association Press, 2001).

In 2000, Garland-Thomson co-directed the first National Endowment for the Humanities Summer Institute for Disability Studies in the Humanities. She has held fellowships from the National Endowment for the Humanities, the Andrew Mellon Foundation, and the American Association of University Women, for example. Her essay on Toni Morrison won the 1989 Modern Language Association’s Florence Howe Award for Feminist Scholarship.

She currently is writing a book on the dynamics of staring and one on the cultural logic of euthanasia.

Garland-Thomson serves on the Research Advisory Board of the Center for Women Policy Studies.

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