Integrating Disability, Transforming Feminist Theory


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Integrating Disability, Transforming Feminist Theory Author(s): Rosemarie Garland-Thomson Reviewed work(s): Source: NWSA Journal, Vol. 14, No. 3, Feminist Disability Studies (Autumn, 2002), pp. 1-32 Published by: The Johns Hopkins University Press Stable URL: http://www.jstor.org/stable/4316922 . Accessed: 25/02/2013 15:58 Your use of the JSTOR archive indicates your acceptance of the Terms & Conditions of Use, available at . http://www.jstor.org/page/info/about/policies/terms.jsp . JSTOR is a not-for-profit service that helps scholars, researchers, and students discover, use, and build upon a wide range of content in a trusted digital archive. We use information technology and tools to increase productivity and facilitate new forms of scholarship. For more information about JSTOR, please contact [email protected] .
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Integrating Disability, Transforming Feminist Theory
ROSEMARIE GARLAND-THOMSON
This essay aims to amplify feminist theory by articulating and fostering feminist disability theory. It names feminist disability studies as an academic field of inquiry, describes work that is already underway, calls for needed study and sets an agenda for future work in feminist disability studies. Feminist disability theory augments the terms and confronts the limits of the ways we understand human diversity, the materiality of the body, multiculturalism, and the social formations that interpret bodily differences. The essay asserts that integrating disability as a category of analysis and a system of representation deepens, expands, and challenges feminist theory. To elaborate on these premises, the essay discusses four fundamental and interpenetrating domains of feminist theory: representation, the body, identity, and activism, suggesting some critical inquiries that considering disability can generate within these theoretical arenas.
Keywords:aesthetic surgery/ body / conjoined twins / disability studies! fashion models / feminist studies / identity / intersexuality / queer theory
Over the last several years, disability studies has moved out of the applied fields of medicine, social work, and rehabilitation to become a vibrant new field of inquiry within the critical genre of identity studies. Charged with the residual fervor of the Civil Rights Movement, Women's Studies and race studies established a model in the academy for identity-based critical enterprises that followed, such as gender studies, queer studies, disability studies, and a proliferation of ethnic studies, all of which have enriched and complicated our understandings of social justice, subject formation, subjugatedknowledges, and collective action.
Even though disability studies is now flourishing in disciplines such as history, literature, religion, theater, and philosophy in precisely the same way feminist studies did twenty-five years ago, many of its practitioners do not recognize that disability studies is part of this largerundertaking that can be called identity studies. Indeed, I must wearily conclude that much of current disability studies does a great deal of wheel reinventing. This is largely because many disability studies scholars simply do not know either feminist theory or the institutional history of Women'sStudies. All too often, the pronouncements in disability studies of what we need to start addressingareprecisely issues that feminist theory has been grappling with for years. This is not to say that feminist theory can be
?2002 NWSA JOURNAL, VOL. 14 No. 3 (FALL)
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transferredwholly and intact over to the study of disability studies, but it is to suggest that feminist theory can offerprofoundinsights, methods, and perspectives that would deepen disability studies.
Conversely, feminist theories all too often do not recognize disability in their litanies of identities that inflect the category of woman. Repeatedly, feminist issues that are intricately entangled with disability-such as reproductivetechnology, the place of bodily differences, the particularities of oppression, the ethics of care, the construction of the subject-are discussed without any reference to disability. Like disability studies practitioners who are unaware of feminism, feminist scholars are often simply unacquainted with disability studies' perspectives. The most sophisticated and nuanced analyses of disability, in my view, come from scholars conversant with feminist theory. And the most compelling and complex analyses of gender intersectionality take into consideration what I call the ability/disability system-along with race, ethnicity, sexuality, and class.
I want to give the omissions I am describing here the most generous interpretation I can. The archive, Foucault has shown us, determines what we can know. There has been no archive, no template for understanding disability as a category of analysis and knowledge, as a cultural trope, and an historical community. So just as the now widely recognized centrality of gender and race analyses to all knowledge was unthinkable thirty years ago, disability is still not an icon on many critical desktops. I think, however, that feminist theory's omission of disability differs from disability studies' ignorance of feminist theory. I find feminist theory and those familiar with it quick to grasp the broadoutlines of disability theory and eager to consider its implications. This, of course, is because feminist theory itself has undertaken internal critiques and proved to be porous and flexible. Disability studies is news, but feminist theory is not. Nevertheless, feminist theory is still resisted for exactly the same reasons that scholars might resist disability studies: the assumption that it is narrow,particular, and has little to do with the mainstream of academic practice and knowledge (or with themselves). This reductive notion that identity studies are intellectual ghettos limited to a narrow constituency demanding special pleading is the persistent obstacle that both feminist theory and disability studies must surmount.
Disability studies can benefit from feminist theory and feminist theory can benefit from disability studies. Both feminism and disability studies are comparative and concurrent academic enterprises. Just as feminism has expanded the lexicon of what we imagine as womanly, has sought to understand and destigmatize what we call the subject position of woman, so has disability studies examined the identity disabled in the service of integrating people with disabilities more fully into our society. As such, both are insurgencies that are becoming institutional-

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ized, underpinning inquiries outside and inside the academy.A feminist disability theory builds on the strengths of both.

Feminist Disability Theory
My title here, "Integrating Disability, Transforming Feminist Theory," invokes and links two notions, integration and transformation, both of which are fundamental to the feminist project and to the larger Civil Rights Movement that informed it. Integration suggests achieving parity by fully including that which has been excluded and subordinated.Transformation suggests re-imagining established knowledge and the order of things. By alluding to integration and transformation, I set my own modest project of integrating disability into feminist theory in the politicized context of the Civil Rights Movement in order to gesture toward the explicit relation that feminism supposes between intellectual work and a commitment to creating a more just, equitable, and integrated society.
This essay aims to amplify feminist theory by articulating and fostering feminist disability theory. In naming feminist disability studies here as an academic field of inquiry, I am sometimes describing work that is alreadyunderway,some of which explicitly addressesdisability and some of which gestures implicitly to the topic. At other times, I am calling for study that needs to be done to better illuminate feminist thought. In other words, this essay, in part, sets an agenda for future work in feminist disability theory. Most fundamentally, though, the goal of feminist disability studies, as I lay it out in this essay, is to augment the terms and confront the limits of the ways we understand human diversity, the materiality of the body, multiculturalism, and the social formations that interpret bodily differences. The fundamental point I will make here is that integrating disability as a category of analysis and a system of representation deepens, expands, and challenges feminist theory.
Academic feminism is a complex and contradictorymatrix of theories, strategies, pedagogies, and practices. One way to think about feminist theory is to say that it investigates how culture saturates the particularities of bodies with meanings and probes the consequences of those meanings. Feminist theory is a collaborative, interdisciplinary inquiry and a self-conscious cultural critique that interrogates how subjects are multiply interpellated: in other words, how the representational systems of gender,race, ethnicity, ability, sexuality, and class mutually construct, inflect, and contradict one another. These systems intersect to produce and sustain ascribed, achieved, and acquired identities-both those that claim us and those that we claim for ourselves. A feminist disability theory introduces the ability/disability system as a category of analysis

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into this diverse and diffuse enterprise. It aims to extend current notions
of cultural diversity and to more fully integrate the academy and the largerworld it helps shape.
A feminist disability approachfosters complex understandings of the cultural history of the body. By considering the ability/disability system, feminist disability theory goes beyond explicit disability topics such as illness, health, beauty, genetics, eugenics, aging, reproductive technologies, prosthetics, and access issues. Feminist disability theory addresses such broad feminist concerns as the unity of the category woman, the status of the lived body, the politics of appearance, the medicalization of the body, the privilege of normalcy, multiculturalism, sexuality, the social construction of identity, and the commitment to integration. To borrow Toni Morrison's notion that blackness is an idea that permeates American culture, disability too is a pervasive, often unarticulated, ideology informing our cultural notions of self and other (1992). Disability-like gender-is a concept that pervades all aspects of culture: its structuring institutions, social identities, cultural practices, political positions, historical communities, and the shared human experience of embodiment.
Integrating disability into feminist theory is generative, broadening our collective inquiries, questioning our assumptions, and contributing to feminism's intersectionality. Introducing a disability analysis does not narrow the inquiry, limit the focus to only women with disabilities, or preclude engaging other manifestations of feminisms. Indeed, the multiplicity of foci we now call feminisms is not a group of fragmented, competing subfields, but rather a vibrant, complex conversation. In talking about feminist disability theory, I am not proposing yet another discrete feminism, but suggesting instead some ways that thinking about disability transforms feminist theory. Integrating disability does not obscure our critical focus on the registers of race, sexuality, ethnicity, or gender, nor is it additive. Rather, considering disability shifts the conceptual framework to strengthen our understanding of how these multiple systems intertwine, redefine, and mutually constitute one another. Integrating disability clarifies how this aggregate of systems operates together, yet distinctly, to support an imaginary norm and structure the relations that grant power, privilege, and status to that norm. Indeed, the cultural function of the disabled figure is to act as a synecdoche for all forms that culture deems non-normative.
We need to study disability in a feminist context to direct our highly honed critical skills towardthe dual scholarly tasks of unmasking andreimagining disability, not only for people with disabilities, but for everyone. As Simi Lintonputs it, studying disability is "aprism through which one can gain a broaderunderstanding of society and human experience" (1998, 118). It deepens our understanding of gender and sexuality, indi-

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vidualism and equality, minority group definitions, autonomy, wholeness, independence, dependence, health, physical appearance,aesthetics, the integrity of the body,community, and ideas of progressandperfection in every aspect of cultures. A feminist disability theory introduces what Eve Sedgwick has called a "universalizing view" of disability that will replace an often persisting "minoritizing view." Such a view will cast disability as "anissue of continuing, determinative importance in the lives of people across the spectrum" (1990, 1). In other words, understanding how disability operates as an identity category and cultural concept will enhance how we understand what it is to be human, our relationships with one another, and the experience of embodiment. The constituency for feminist disability studies is all of us, not only women with disabilities: disability is the most human of experiences, touching every family and-if we live long enough-touching us all.

The Ability/Disability System
Feminist disability theory's radical critique hinges on a broad understanding of disability as a pervasive cultural system that stigmatizes certain kinds of bodily variations. At the same time, this system has the potential to incite a critical politics. The informing premise of feminist disability theory is that disability, like femaleness, is not a natural state of corporeal inferiority, inadequacy, excess, or a stroke of misfortune. Rather,disability is a culturally fabricatednarrative of the body, similar to what we understand as the fictions of race and gender.The disability/ ability system produces subjects by differentiating and marking bodies. Although this comparison of bodies is ideological rather than biological, it nevertheless penetrates into the formation of culture, legitimating an unequal distribution of resources, status, and power within a biased social and architectural environment. As such, disability has four aspects: first, it is a system for interpreting and disciplining bodily variations; second, it is a relationship between bodies and their environments; third, it is a set of practices that produce both the able-bodied and the disabled; fourth, it is a way of describing the inherent instability of the embodied self. The disability system excludes the kinds of bodily forms, functions, impairments, changes, or ambiguities that call into question our cultural fantasy of the body as a neutral, compliant instrument of some transcendent will. Moreover, disability is a broad term within which cluster ideological categories as varied as sick, deformed, crazy, ugly, old, maimed, afflicted, mad, abnormal, or debilitated-all of which disadvantagepeople by devaluing bodies that do not conform to cultural standards.Thus, the disability system functions to preserve and validate such privileged designations as beautiful, healthy, normal, fit, competent,

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intelligent-all of which provide cultural capital to those who can claim such statuses, who can reside within these subject positions. It is, then, the various interactions between bodies and world that materialize disability from the stuff of human variation and precariousness.
A feminist disability theory denaturalizes disability by unseating the dominant assumption that disability is something that is wrong with someone. By this I mean, of course, that it mobilizes feminism's highly developedand complex critique of gender,class, race, ethnicity, and sexuality as exclusionary and oppressive systems rather than as the natural and appropriateorder of things. To do this, feminist disability theory engages several of the fundamental premises of critical theory: 1) that representation structures reality, 2) that the margins define the center, 3) that gender(ordisability) is a way of signifying relationships of power, 4) that human identity is multiple and unstable, 5) that all analysis and evaluation have political implications.
In orderto elaborateon these premises, I discuss here four fundamental and interpenetrating domains of feminist theory and suggest some of the kinds of critical inquiries that considering disability can generate within these theoretical arenas. These domains are: 1) representation, 2) the body, 3) identity, and 4) activism. While I have disentangled these domains here for the purposes of setting up a schematic organization for my analysis, these domains are, of course, not discrete in either concept or practice, but rathertend to be synchronic.

Representation
The first domain of feminist theory that can be deepened by a disability analysis is representation. Western thought has long conflated femaleness and disability, understanding both as defective departures from a valued standard. Aristotle, for example, defined women as "mutilated males." Women, for Aristotle, have "improper form"; we are "monstrosit[ies]" (1944, 27-8, 8-9). As what Nancy Tuana calls "misbegotten men," women thus become the primal freaks in Western history, envisioned as what we might now call congenitally deformed as a result of what we might now term genetic disability (1993, 18). More recently, feminist theorists have argued that female embodiment is a disabling condition in sexist culture. Iris Marion Young, for instance, examines how enforced feminine comportment delimits women's sense of embodied agency, restricting them to "throwing like a girl" (1990b, 141).Young concludes that, "Women in a sexist society are physically handicapped" (1990b, 153). Even the general American public associates femininity with disability. A recent study on stereotyping showed that housewives, disabled people, blind people, so-called retardedpeople, and the elderly

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were all judged as being similarly incompetent. Such a study suggests that intensely normatively feminine positions-such as a housewifeare aligned with negative attitudes about people with disabilities (Fiske, Cuddy, and Glick 2001).1
Recognizing how the concept of disability has been used to cast the form and functioning of female bodies as non-normative can extend feminist critiques. Take, for example, the exploitation of Saartje Bartmann, the African woman exhibited as a freak in nineteenth-century Europe (Fausto-Sterling 1995; Gilman 1985). Known as the Hottentot Venus, Bartmann's treatment has come to represent the most egregious form of racial and gendered degradation.What goes unremarked in studies of Bartmann'sdisplay,however, are the ways that the language and assumptions of the ability/disability system were implemented to pathologize and exoticize Bartmann. Her display invoked disability by presenting as deformities or abnormalities the characteristics that marked her as raced and gendered.I am not suggesting that Bartmann was disabled,but rather that the concepts of disability discourse framed her presentation to the Western eye. Using disability as a category of analysis allows us to see that what was normative embodiment in her native context became abnormal to the Western mind. More important, rather than simply supposing that being labeled as a freak is a slander, a disability analysis presses our critique further by challenging the premise that unusual embodiment is inherently inferior. The feminist interrogation of gender since Simone de Beauvoir (1974)has revealed how women are assigned a cluster of ascriptions, like Aristotle's, that mark us as Other. What is less widely recognized, however, is that this collection of interrelated characterizations is precisely the same set of supposed attributes affixed to people with disabilities.
The gender, race, and ability systems intertwine further in representing subjugatedpeople as being pure body, unredeemed by mind or spirit. This sense of embodiment is conceived of as either a lack or an excess. Women, for example, are considered castrated, or to use Marge Piercy's wonderful term, "penis-poor" (1969). They are thought to be hysterical or have overactive hormones. Women have been cast as alternately having insatiable appetites in some eras and as pathologically self-denying in other times. Similarly, disabledpeople have supposedly extra chromosomes or limb deficiencies. The differences of disability are cast as atrophy, meaning degeneration, or hypertrophy, meaning enlargement. People with disabilities are described as having aplasia, meaning absence or failure of formation, or hypoplasia, meaning underdevelopment. All these terms police variation and reference a hidden norm from which the bodies of people with disabilities and women are imagined to depart.
Female, disabled, and dark bodies are supposed to be dependent, incomplete, vulnerable, and incompetent bodies. Femininity and race

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Fig, 128. Lo:R DzEF;Cx:T. .
Fig. 1. 1885 physiogometric drawing of a supposedly pathologically "Love Deficient" woman
are performances of disability. Women and the disabled are portrayedas helpless, dependent, weak, vulnerable, and incapable bodies. Women, the disabled, and people of color are always ready occasions for the aggrandizement of benevolent rescuers, whether strong males, distinguished doctors, abolititionists, or JerryLewis hosting his telethons. Forexample, an 1885 medical illustration of a pathologically "love deficient" woman, who fits the cultural stereotype of the ugly woman orperhapsthe lesbian, suggests how sexuality and appearance slide into the terms of disability (Fig.1).This illustration shows that the language of deficiency and abnormality simultaneously to devalue women who departfrom the mandates of femininity by equating them with disabled bodies. Such an interpretive move economically invokes the subjugating effect of one oppressive system to deprecate people marked by another system of representation.
Subjugatedbodies are pictured as either deficient or as profligate. For instance, what Susan Bordo deasscaribes the too-muchness of women also haunts disability and racial discourses, marking subjugatedbodies as ungovernable,intemperate, or threatening (1993).The historical figure of the monster as well, invokes disability, often to serve racism and sexism. Although the term has expanded to encompass all forms of social and corporealaberration,monster originally describedpeople with congenital impairments. As departuresfrom the normatively human, monsters were
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seen as category violations or grotesque hybrids. The semantics of monstrosity are recruited to explain gender violations such as Julia Pastrana, for example, the Mexican Indian "beardedwoman," whose body was displayed in nineteenth-century freak shows both during her lifetime and after her death. Pastrana'slive and later her embalmed body spectacularly confused and transgressed established cultural categories. Race, gender, disability, and sexuality augmented one another in Pastrana'sdisplay to produce a spectacle of embodied otherness that is simultaneously sensational, sentimental, and pathological (Thomson 1999). Furthermore, much current feminist work theorizes figures of hybridity and excess such as monsters, grotesques, and cyborgs to suggest their transgressive potential for a feminist politics (Haraway 1991; Braidotti 1994; Russo 1994). However, this metaphorical invocation seldom acknowledges that these figures often refer to the actual bodies of people with disabilities. Erasingreal disabledbodies from the history of these terms compromises the very critique they intend to launch and misses an opportunity to use disability as a feminist critical category.
Such representations ultimately portray subjugated bodies not only as inadequate or unrestrained but at the same time as redundant and expendable. Bodies marked and selected by such systems are targeted for elimination by varying historical and cross-cultural practices. Women, people with disabilities or appearanceimpairments, ethnic Others, gays and lesbians, and people of color are variously the objects of infanticide, selective abortion, eugenic programs,hate crimes, mercy killing, assisted suicide, lynching, bride burning, honor killings, forced conversion, coercive rehabilitation, domestic violence, genocide, normalizing surgical procedures, racial profiling, and neglect. All these discriminatory practices are legitimated by systems of representation, by collective cultural stories that shape the material world, underwrite exclusionary attitudes, inform human relations, and mold our senses of who we are. Understanding how disability functions along with other systems of representation clarifies how all the systems intersect and mutually constitute one another.

The Body
The second domain of feminist theory that a disability analysis can illuminate is the investigation of the body: its materiality, its politics, its lived experience, and its relation to subjectivity and identity. Confronting issues of representation is certainly crucial to the cultural critique of feminist disability theory. But we should not focus exclusively on the discursive realm. What distinguishes a feminist disability theory from other critical paradigms is that it scrutinizes a wide range of material

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Integrating Disability, Transforming Feminist Theory