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Integrating Disability, Transforming Feminist Theory

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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.
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Integrating Disability, Transforming Feminist Theory
ROSEM ARI E GA RLA ND-THOMSON
This essay aims to amplify feminist theory by articulating and foster-
ing feminist disability theory. It names feminist disability studies as an
academic fi eld of inquiry, describes work that is already underway, calls
for needed study and sets an agenda for future work in feminist disabil-
ity 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 cat-
egory 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
elds of medicine, social work, and rehabilitation to become a vibrant
new fi eld 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, subjugated knowledges, and collective action.
Even though disability studies is now fl ourishing in disciplines such as
history, literature, religion, theater, and philosophy in precisely the same
way feminist studies did twenty-fi ve years ago, many of its practitioners
do not recognize that disability studies is part of this larger undertaking
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’s Stud-
ies. All too often, the pronouncements in disability studies of what we
need to start addressing are precisely issues that feminist theory has been
grappling with for years. This is not to say that feminist theory can be
2 ROS EMA RIE GA RLA ND-THO MSO N
transferred wholly and intact over to the study of disability studies, but
it is to suggest that feminist theory can offer profound insights, methods,
and perspectives that would deepen disability studies.
Conversely, feminist theories all too often do not recognize disabil-
ity in their litanies of identities that infl ect the category of woman.
Repeatedly, feminist issues that are intricately entangled with disabil-
ity—such as reproductive technology, 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 disabil-
ity 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 under-
standing 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 nd feminist theory
and those familiar with it quick to grasp the broad outlines 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 fl exible. 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 benefi t from feminist theory and feminist
theory can benefi t 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 posi-
tion 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-
INT EGR ATIN G DISABILITY, TR ANS FOR MIN G F EMI NIS T THEO RY 3
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. Trans-
formation 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 politi-
cized 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 foster-
ing feminist disability theory. In naming feminist disability studies here
as an academic fi eld of inquiry, I am sometimes describing work that is
already underway, some of which explicitly addresses disability 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 femi-
nist 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 repre-
sentation deepens, expands, and challenges feminist theory.
Academic feminism is a complex and contradictory matrix of theories,
strategies, pedagogies, and practices. One way to think about feminist
theory is to say that it investigates how culture saturates the particu-
larities 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,
infl ect, 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
4 ROS EMA RIE GA RLA ND-THO MSO N
into this diverse and diffuse enterprise. It aims to extend current notions
of cultural diversity and to more fully integrate the academy and the
larger world it helps shape.
A feminist disability approach fosters 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 technolo-
gies, 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). Dis-
ability—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 multi-
plicity of foci we now call feminisms is not a group of fragmented, com-
peting subfi elds, 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 disabil-
ity 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 sys-
tems intertwine, redefi ne, and mutually constitute one another. Integrat-
ing disability clarifi es 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 fi gure 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 toward the dual scholarly tasks of unmasking and re-
imagining disability, not only for people with disabilities, but for every-
one. As Simi Linton puts it, studying disability is “a prism through which
one can gain a broader understanding of society and human experience”
(1998, 118). It deepens our understanding of gender and sexuality, indi-
INT EGR ATIN G DISABILITY, TR ANS FOR MIN G F EMI NIS T THEO RY 5
vidualism and equality, minority group defi nitions, autonomy, whole-
ness, independence, dependence, health, physical appearance, aesthetics,
the integrity of the body, community, and ideas of progress and perfection
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 dis-
ability as “an issue 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 disabili-
ties: 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 under-
standing 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 fabricated narrative of the body, similar
to what we understand as the fi ctions of race and gender. The disability/
ability system produces subjects by differentiating and marking bodies.
Although this comparison of bodies is ideological rather than biologi-
cal, it nevertheless penetrates into the formation of culture, legitimat-
ing an unequal distribution of resources, status, and power within a
biased social and architectural environment. As such, disability has four
aspects: fi rst, it is a system for interpreting and disciplining bodily varia-
tions; 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, af icted, mad, abnormal, or debilitated—all of which
disadvantage people 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, fi t, competent,
6 ROS EMA RIE GA RLA ND-THO MSO N
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 dis-
ability 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
developed and complex critique of gender, class, race, ethnicity, and sexu-
ality as exclusionary and oppressive systems rather than as the natural
and appropriate order 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 defi ne the center,
3) that gender (or disability) 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 order to elaborate on these premises, I discuss here four fundamen-
tal 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 rather tend to be synchronic.
Representation
The fi rst domain of feminist theory that can be deepened by a disability
analysis is representation. Western thought has long confl ated female-
ness and disability, understanding both as defective departures from
a valued standard. Aristotle, for example, defi ned women as “muti-
lated males.” Women, for Aristotle, have “improper form”; we are
“monstrosit[ies]” (1944, 278, 8–9). As what Nancy Tuana calls “misbe-
gotten 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 embod-
ied 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 retarded people, and the elderly
INT EGR ATIN G DISABILITY, TR ANS FOR MIN G F EMI NIS T THEO RY 7
were all judged as being similarly incompetent. Such a study suggests
that intensely normatively feminine positions—such as a housewife—
are 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 femi-
nist 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’s display, however, are the ways that the language and assump-
tions 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 affi xed
to people with disabilities.
The gender, race, and ability systems intertwine further in represent-
ing subjugated people 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 hysteri-
cal or have overactive hormones. Women have been cast as alternately
having insatiable appetites in some eras and as pathologically self-deny-
ing in other times. Similarly, disabled people have supposedly extra chro-
mosomes or limb defi ciencies. 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
8 ROS EMA RIE GA RLA ND-THO MSO N
are performances of disability. Women and the disabled are portrayed as
helpless, dependent, weak, vulnerable, and incapable bodies. Women, the
disabled, and people of color are always ready occasions for the aggran-
dizement of benevolent rescuers, whether strong males, distinguished
doctors, abolititionists, or Jerry Lewis hosting his telethons. For example,
an 1885 medical illustration of a pathologically “love defi cient” woman,
who ts the cultural stereotype of the ugly woman or perhaps the lesbian,
suggests how sexuality and appearance slide into the terms of disability
(Fig. 1). This illustration shows that the language of defi ciency and abnor-
mality simultaneously to devalue women who depart from the mandates
of femininity by equating them with disabled bodies. Such an interpre-
tive move economically invokes the subjugating effect of one oppressive
system to deprecate people marked by another system of representation.
Subjugated bodies are pictured as either defi cient or as profl igate. For
instance, what Susan Bordo describes as the too-muchness of women
also haunts disability and racial discourses, marking subjugated bodies as
ungovernable, intemperate, or threatening (1993). The historical fi gure 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
corporeal aberration, monster originally described people with congenital
impairments. As departures from the normatively human, monsters were
Fig. 1. 1885 physiogometric drawing of a supposedly pathologically “Love Defi cient”
woman
INT EGR ATIN G DISABILITY, TR ANS FOR MIN G F EMI NIS T THEO RY 9
seen as category violations or grotesque hybrids. The semantics of mon-
strosity are recruited to explain gender violations such as Julia Pastrana,
for example, the Mexican Indian “bearded woman,” whose body was dis-
played in nineteenth-century freak shows both during her lifetime and
after her death. Pastrana’s live and later her embalmed body spectacularly
confused and transgressed established cultural categories. Race, gender,
disability, and sexuality augmented one another in Pastrana’s display to
produce a spectacle of embodied otherness that is simultaneously sen-
sational, sentimental, and pathological (Thomson 1999). Furthermore,
much current feminist work theorizes gures 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 fi gures often refer to the actual bodies of people with disabilities.
Erasing real disabled bodies 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 appearance impairments, 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, coer-
cive rehabilitation, domestic violence, genocide, normalizing surgical
procedures, racial profi ling, and neglect. All these discriminatory prac-
tices 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. Understand-
ing how disability functions along with other systems of representation
clarifi es how all the systems intersect and mutually constitute one
another.
The Body
The second domain of feminist theory that a disability analysis can illu-
minate is the investigation of the body: its materiality, its politics, its
lived experience, and its relation to subjectivity and identity. Confront-
ing 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
10 RO SEM ARI E GARL AND- THO MSO N
practices involving the lived body. Perhaps because women and the dis-
abled are cultural signifi ers for the body, their actual bodies have been
subjected relentlessly to what Michel Foucault calls “discipline” (1979).
Together, the gender, race, ethnicity, sexuality, class, and ability systems
exert tremendous social pressures to shape, regulate, and normalize sub-
jugated bodies. Such disciplining is enacted primarily through the two
interrelated cultural discourses of medicine and appearance.
Feminist disability theory offers a particularly trenchant analysis of
the ways that the female body has been medicalized in modernity. As I
have already suggested, both women and the disabled have been imag-
ined as medically abnormal—as the quintessential sick ones. Sickness is
gendered feminine. This gendering of illness has entailed distinct conse-
quences in everything from epidemiology and diagnosis to prophylaxis
and therapeutics.
Perhaps feminist disability theory’s most incisive critique is revealing
the intersections between the politics of appearance and the medicaliza-
tion of subjugated bodies. Appearance norms have a long history in West-
ern culture, as is witnessed by the anthropometric composite fi gures of
ideal male and female bodies made by Dudley Sargent in 1893 (Fig. 2). The
classical ideal was to be worshiped rather than imitated, but increasingly,
in modernity the ideal has migrated to become the paradigm that is to be
attained. As many feminist critics have pointed out, the beauty system’s
mandated standard of the female body has become a goal to be achieved
through self-regulation and consumerism (Wolf 1991; Haiken 1997).
Feminist disability theory suggests that appearance and health norms
often have similar disciplinary goals. For example, the body braces devel-
oped in the 1930s to ostensibly correct scoliosis, discipline the body to
conform to dictates of both the gender and the ability systems by enforc-
ing standardized female form similarly to the nineteenth-century corset,
which, ironically, often disabled female bodies. Although both devices
normalize bodies, the brace is part of medical discourse while the corset
is cast as a fashion practice.
Similarly, a feminist disability theory calls into question the separa-
tion of reconstructive and cosmetic surgery, recognizing their essentially
normalizing function as what Sander L. Gilman calls “aesthetic surgery”
(1998). Cosmetic surgery, driven by gender ideology and market demand,
now enforces feminine body ideals and standardizes female bodies
toward what I have called the “normate”—the corporeal incarnation of
culture’s collective, unmarked, normative characteristics (1997, 8). Cos-
metic surgery’s twin, reconstructive surgery, eliminates disability and
enforces the ideals of what might be thought of as the normalcy system.
Both cosmetic and reconstructive procedures commodify the body and
parade mutilations as enhancements that correct aws to improve the
psychological well-being of the patient. The conception of the body as
INT EGR ATIN G DISABILITY, TR ANS FOR MIN G F EMI NIS T THEO RY 11
what Susan Bordo terms “cultural plastic” (1993, 246) through surgical
and medical interventions increasingly pressures people with disabili-
ties or appearance impairments to become what Michel Foucault calls
“docile bodies” (1979, 135). The twin ideologies of normalcy and beauty
posit female and disabled bodies, particularly, as not only spectacles to be
looked at, but as pliable bodies to be shaped infi nitely so as to conform to
a set of standards called normal and beautiful.
Normal has in ected beautiful in modernity. What is imagined as
excess body fat, the effects of aging, marks of ethnicity such as sup-
posedly Jewish noses, bodily particularities thought of as blemishes or
deformities, and marks of history such as scarring and impairments are
now expected to be surgically erased to produce an unmarked body. This
visually unobtrusive body may then pass unnoticed within the milieu of
anonymity that is the hallmark of social relations beyond the personal in
modernity. The purpose of aesthetic surgery, as well as the costuming of
power, is not to appear unique—or to “be yourself,” as the ads endlessly
promise—but rather not to be conspicuous, not to look different. This
ight from the nonconforming body translates into individual efforts to
look normal, neutral, unmarked, to not look disabled, queer, ugly, fat,
ethnic, or raced. Beauty, then, dictates corporeal standards that create
not distinction but utter conformity to a bland look that is at the same
Fig. 2. 1893 anthropometric composite
gures by Dud ley Sargent of normative
man and woman in European culture.
(Courtesy of the National Museum of
American History.)
12 RO SEM ARI E GARL AND- THO MSO N
time unachievable, so as to leash us to consumer practices that promise
to deliver such sameness. In the language of contemporary cosmetic
surgery, the unreconstructed female body is persistently cast as having
abnormalities that can be corrected by surgical procedures which suppos-
edly improve one’s appearance by producing ostensibly natural-looking
noses, thighs, breasts, chins, and so on. Thus, our unmodifi ed bodies
are presented as unnatural and abnormal while the surgically altered
bodies are portrayed as normal and natural. The beautiful woman of the
twenty-fi rst century is sculpted surgically from top to bottom, generi-
cally neutral, all irregularities regularized, all particularities expunged.
She is thus nondisabled, deracialized, and de-ethnicized.
In addition, the politics of prosthetics enters the purview of feminism
when we consider the contested use of breast implants and prostheses
for breast cancer survivors. The famous 1993 New York Times Magazine
cover photo of the fashion model, Matushka, baring her mastectomy
scar or Audre Lorde’s account of breast cancer in The Cancer Journals
challenge the sexist assumption that the amputated breast must always
pass for the normative, sexualized one either through concealment or
prosthetics (1980). A vibrant feminist conversation has emerged about
the politics of the surgically altered, disabled breast. Diane Price Herndl
(2002) challenges Audre Lorde’s refusal of a breast prosthesis after mas-
tectomy and Iris Marion Young’s classic essay “Breasted Experience”
queries the cultural meanings of breasts under the knife (1990a).
Another entanglement of appearance and medicine involves the spec-
tacle of the female breast, both normative and disabled. In January 2000,
the San Francisco-based The Breast Cancer Fund mounted a public
awareness poster campaign, called Obsessed with Breasts, which showed
women boldly displaying mastectomy scars. The posters parodied famil-
iar commercial media sites—a Calvin Klein perfume ad, a Cosmopoli-
tan magazine cover, and a Victoria Secret catalog cover—that routinely
represent women’s breasts as only sexual in nature. The posters replace
the now unremarkable eroticized breast with the forbidden image of the
amputated breast (Fig. 3). In doing so, they disrupt the visual convention
of the female breast as sexualized object for male appropriation and plea-
sure. The posters thus produce a powerful visual violation by exchanging
the spectacle of the eroticized breast, which has been desensationalized
by its endless circulation, with the medicalized image of the scarred
breast, which has been concealed from public view. The Breast Cancer
Fund used these remarkable images to challenge both sexism in medical
research and treatment for breast cancer as well as the oppressive repre-
sentational practices that make everyday erotic spectacles of women’s
breasts while erasing the fact of the amputated breast.
Feminist disability theory can press far its critique of the pervasive
will-to-normalize the nonstandard body. Take two related examples:
INT EGR ATIN G DISABILITY, TR ANS FOR MIN G F EMI NIS T THEO RY 13
rst, the surgical separation of conjoined twins and, second, the surgical
assignment of gender for the intersexed, people with ambiguous genitalia
and gender characteristics. Both forms of embodiment are regularly—if
infrequently—occurring, congenital bodily variations that spectacularly
violate sacred ideologies of Western culture. Conjoined twins contradict
our notion of the individual as discrete and autonomous, quite similarly
to the way pregnancy does. Intersexed infants challenge our insistence
that biological gender is unequivocally binary. So threatening to the order
of things is the natural embodiment of conjoined twins and intersexed
people that they are almost always surgically normalized through ampu-
tation and mutilation immediately after birth (Clark and Myser 1996;
Dreger 1998a; Kessler 1990; Fausto-Sterling 2000). Not infrequently, one
conjoined twin is sacrifi ced to save the other from the supposed abnor-
mality of their embodiment. Such mutilations are justifi ed as preventing
suffering and creating well-adjusted individuals. So intolerable is their
insult to dominant ideologies about who patriarchal culture insists that
we are, that the testimonies of adults with these forms of embodiment
who say that they do not want to be separated is routinely ignored in
establishing the rationale for medical treatment (Dreger 1998b). In truth,
these procedures benefi t not the affected individuals, but rather they
Fig. 3. Obsessed with Breasts
poster. “It’s No Secret.
(Courtesy of The Breast Cancer
Fund.)
14 RO SEM ARI E GARL AND- THO MSO N
expunge the kinds of corporeal human variations that contradict the ide-
ologies the dominant order depends upon to anchor truths it insists are
unequivocally encoded in bodies.
I do not want to oversimplify here by suggesting that women and dis-
abled people should not use modern medicine to improve their lives or
help their bodies function more fully. But the critical issues are complex
and provocative. A feminist disability theory should illuminate and
explain, not become ideological policing or set orthodoxy. The kinds of
critical analyses I am discussing offer a counterlogic to the overdeter-
mined cultural mandates to comply with normal and beautiful at any
cost. The medical commitment to healing, when coupled with moder-
nity’s faith in technology and interventions that control outcomes, has
increasingly shifted toward an aggressive intent to fi x, regulate, or eradi-
cate ostensibly deviant bodies. Such a program of elimination has often
been at the expense of creating a more accessible environment or provid-
ing better support services for people with disabilities. The privileging of
medical technology over less ambitious programs such as rehabilitation
has encouraged the cultural conviction that disability can be extirpated;
inviting the belief that life with a disability is intolerable. As charity
campaigns and telethons repeatedly affi rm, cure rather than adjustment
or accommodation is the overdetermined cultural response to disability
(Longmore 1997). For instance, a 1949 March of Dimes poster shows an
appealing little girl stepping out of her wheelchair into the supposed
redemption of walking: “Look, I Can Walk Again!” the text proclaims,
while at once charging the viewers with the responsibility of assuring her
future ambulation (Fig. 4). Nowhere do we nd posters suggesting that
life as a wheelchair user might be full and satisfying, as many people
who actually use them fi nd their lives to be. This ideology of cure is not
isolated in medical texts or charity campaigns, but in fact permeates
the entire cultural conversation about disability and illness. Take, for
example, the discourse of cure in get well cards. A 1950 card, for instance,
urges its recipient to “snap out of it.” Fusing racist, sexist, and ableist
discourses, the card recruits the Mammy fi gure to insist on cure. The
stereotypical racist gure asks, “Is you sick, Honey?and then exhorts
the recipient of her care to “jes hoodoo all dat illness out o you.
The ideology of cure directed at disabled people focuses on changing
bodies imagined as abnormal and dysfunctional rather than on chang-
ing exclusionary attitudinal, environmental, and economic barriers. The
emphasis on cure reduces the cultural tolerance for human variation
and vulnerability by locating disability in bodies imagined as fl awed
rather than social systems in need of fi xing. A feminist disability studies
would draw an important distinction between prevention and elimina-
tion. Preventing illness, suffering, and injury is a humane social objec-
tive. Eliminating the range of unacceptable and devalued bodily forms
INT EGR ATIN G DISABILITY, TR ANS FOR MIN G F EMI NIS T THEO RY 15
and functions the dominant order calls disability is, on the other hand, a
eugenic undertaking. The ostensibly progressive socio-medical project of
eradicating disability all too often is enacted as a program to eliminate
people with disabilities through such practices as forced sterilization,
so-called physician-assisted suicide and mercy killing, selective abortion,
institutionization, and segregation policies.
A feminist disability theory extends its critique of the normalization
of bodies and the medicalization of appearance to challenge some widely-
held assumptions about reproductive issues as well. The cultural man-
date to eliminate the variations in form and function that we think of as
disabilities has undergirded the reproductive practices of genetic testing
and selective abortion (Saxton 1998; Parens and Asch 2000; Rapp 1999).
Some disability activists argue that the “choice” to abort fetuses with
disabilities is a coercive form of genocide against the disabled (Hubbard
1990). A more nuanced argument against selective abortion comes from
Adrienne Asch and Gail Geller, who wish to preserve a woman’s right
to choose whether to bear a child, but who at the same time object to
the ethics of selectively aborting a wanted fetus because it will become
a person with a disability (1996). Asch and Geller counter the quality-of-
life and prevention-of-suffering arguments so readily invoked to justify
Fig. 4. March of Dimes poster
child, 1949. (Courtesy of the
March of Dimes.)
16 RO SEM ARI E GARL AND- THO MSO N
selective abortion, as well as physician-assisted suicide, by pointing
out that we cannot predict or, more precisely, control in advance such
equivocal human states as happiness, suffering, or success. Neither is any
amount of prenatal engineering going to produce the life that any of us
desires and values. Indeed, both hubris and a lack of imagination charac-
terize the prejudicial and reductive assumption that having a disability
ruins lives. A vague notion of suffering and its potential deterrence drives
much of the logic of elimination that rationalizes selective abortion
(Kittay 2000). Life chances and quality are simply far too contingent to
justify prenatal prediction.
Similarly, genetic testing and applications of the Human Genome
Project as the key to expunging disability are often critiqued as enact-
ments of eugenic ideology, what the feminist biologist Evelyn Fox Keller
calls a “eugenics of normalcy” (1992). The popular utopian belief that all
forms of disability can be eliminated through prophylactic manipulation
of genetics will only serve to intensify the prejudice against those who
inevitably will acquire disabilities through aging and encounters with
the environment. In the popular celebrations of the Human Genome
Project as the quixotic pinnacle of technological progress, seldom do
we hear a cautionary logic about the eugenic implications of this drive
toward what Priscilla Wald calls “future perfect” (2000, 1). Disability
scholars have entered the debate over so-called physician-assisted suicide
as well, by arguing that oppressive attitudes toward disability distort the
possibility of unbiased free choice (Battin, Rhodes, and Silvers 1998). The
practices of genetic and prenatal testing as well as physician-adminis-
tered euthanasia, then, become potentially eugenic practices within the
context of a culture deeply intolerant of disability. Both the rhetoric and
the enactment of this kind of disability discrimination create a hostile
and exclusionary environment for people with disabilities that perhaps
exceeds the less virulent architectural barriers that keep them out of the
workforce and the public sphere.
Integrating disability into feminism’s conversation about the place of
the body in the equality and difference debates produces fresh insights
as well. Whereas liberal feminism emphasizes sameness, choice, and
autonomy, cultural feminism critiques the premises of liberalism. Out
of cultural feminism’s insistence on difference and its positive interpre-
tation of feminine culture comes the affi rmation of a feminist ethic of
care. This ethic of care contends that care giving is a moral benefi t for
its practitioners and for humankind. A feminist disability studies com-
plicates both the feminist ethic of care and liberal feminism in regard to
the politics of care and dependency.
A disability perspective nuances feminist theory’s consideration of the
ethics of care by examining the power relations between the givers and
receivers of care. Anita Silvers has argued strongly that being the object
INT EGR ATIN G DISABILITY, TR ANS FOR MIN G F EMI NIS T THEO RY 17
of care precludes the equality that a liberal democracy depends upon and
undermines the claim to justice as equality that undergirds a civil rights
approach used to counter discrimination (1995). Eva Kittay, on the other
hand, formulates a “dependency critique of equality,” which asserts that
the ideal of equality under liberalism repudiates the fact of human depen-
dency, the need for mutual care, and the asymmetries of care relations
(1999, 4). Similarly, Barbara Hillyer has called attention to dependency
in order to critique a liberal tendency in the rhetoric of disability rights
(1993). Disability itself demands that human interdependence and the
universal need for assistance be gured into our dialogues about rights
and subjectivity.
Identity
The third domain of feminist theory that a disability analysis com-
plicates is identity. Feminist theory has productively and rigorously
critiqued the identity category of woman, on which the entire feminist
enterprise seemed to rest. Feminism increasingly recognizes that no
woman is ever only a woman, that she occupies multiple subject posi-
tions and is claimed by several cultural identity categories (Spelman
1988). This complication of woman compelled feminist theory to turn
from an exclusively male/female focus to look more fully at the exclu-
sionary, essentialist, oppressive, and binary aspects of the category
woman itself. Disability is one such identity vector that disrupts the
unity of the classifi cation woman and challenges the primacy of gender
as a monolithic category.
Disabled women are, of course, a marked and excluded—albeit quite
varied—group within the larger social class of women. The relative
privileges of normative femininity are often denied to disabled women
(Fine and Asch 1988). Cultural stereotypes imagine disabled women as
asexual, un t to reproduce, overly dependent, unattractive—as gener-
ally removed from the sphere of true womanhood and feminine beauty.
Women with disabilities often must struggle to have their sexuality and
rights to bear children recognized (Finger 1990). Disability thus both
intensifi es and attenuates the cultural scripts of femininity. Aging is
a form of disablement that disqualifi es older women from the limited
power allotted females who are young and meet the criteria for attracting
men. Depression, anorexia, and agoraphobia are female-dominant, psy-
chophysical disabilities that exaggerate normative gender roles. Feminine
cultural practices such as footbinding, clitorectomies, and corseting, as
well as their less hyperbolic costuming rituals such as stiletto high heels,
girdles, and chastity belts—impair women’s bodies and restrict their
physical agency, imposing disability on them.
18 RO SEM ARI E GARL AND- THO MSO N
Banishment from femininity can be both a liability and a benefi t. Let
me offer—with some irony—an instructive example from popular cul-
ture. Barbie, that cultural icon of femininity, offers a disability analysis
that clarifi es both how multiple identity and diversity are commodifi ed
and how the commercial realm might offer politically useful feminist
counter images. Perhaps the measure of a group’s arrival into the main-
stream of multiculturalism is to be represented in the Barbie pantheon.
While Barbie herself still identifi es as able-bodied—despite her severely
deformed body—we now have several incarnations of Barbie’s “friend,”
Share-A-Smile Becky. One Becky uses a cool hot pink wheelchair;
another is Paralympic Champion Becky, brought out for the 2000 Sydney
Olympics in a chic red-white-and-blue warm-up suit with matching
chair. Most interesting however is Becky, the school photographer, clad
in a preppy outfi t, complete with camera and red high-top sneakers (Fig.
5). As she perkily gazes at an alluring Barbie in her camera’s viewfi nder,
this Becky may be the incarnation of what Erica Rand has called “Barbie’s
queer accessories” (1995).
A disabled, queer Becky is certainly a provocative and subversive
fusion of stigmatized identities, but more important is that Becky chal-
lenges notions of normalcy in feminist ways. The disabled Becky, for
example, wears comfortable clothes: pants with elastic waists, sensible
shoes, and roomy shirts. Becky is also one of the few dolls with fl at feet
and legs that bend at the knee. The disabled Becky is dressed and poised
for agency, action, and creative engagement with the world. In contrast,
the prototypical Barbie performs excessive femininity in her restrictive
sequined gowns, crowns, and push-up bras. So while Becky implies, on
the one hand, that disabled girls are purged from the feminine economy,
on the other hand, Becky also suggests that disabled girls might be lib-
erated from those oppressive and debilitating scripts. The last word on
Barbies comes from a disability activist who quipped that he would like
to outfi t a disabled doll with a power wheelchair and a briefcase to make
her a civil rights lawyer who enforces the Americans with Disabilities
Act (1990). He wants to call her “Sue-Your-Ass-Becky.”2 I think she would
make a very good role model.
The paradox of Barbie and Becky, of course, is that the ultra-feminized
Barbie is a target for sexual appropriation both by men and beauty prac-
tices while the disabled Becky escapes such sexual objectifi cation at the
potential cost of losing her sense of identity and power as a feminine
sexual being. Some disabled women negotiate this possible identity crisis
by developing alternate sexualities, such as lesbianism (Brownworth and
Raffo 1999). However, what Harlan Hahn calls the asexual objecti -
cation” of people with disabilities complicates the feminist critique
of normative sexual objectifi cation (1988). Consider the 1987 Playboy
magazine photos of the paraplegic actress Ellen Stohl. After becoming
INT EGR ATIN G DISABILITY, TR ANS FOR MIN G F EMI NIS T THEO RY 19
disabled, Stohl wrote to editor Hugh Hefner that she wanted to pose nude
for Playboy because “sexuality is the hardest thing for disabled persons to
hold onto” (“Meet Ellen Stohl” 1987, 68). For Stohl, it would seem that the
performance of excessive feminine sexuality was necessary to counter
the social interpretation that disability cancels out sexuality. This con-
rmation of normative heterosexuality was then for Stohl no Butlerian
parody, but rather the affi rmation she needed as a disabled woman to be
sexual at all.
Ellen Stohl’s presentation by way of the sexist conventions of the porn
magazine illuminates the relation between identity and the body, an
aspect of subject formation that disability analysis can offer. Although
binary identities are conferred from outside through social relations,
these identities are nevertheless inscribed on the body as either manifest
or incipient visual traces. Identity’s social meaning turns on this play of
visibility. The photos of Stohl in Playboy both refuse and insist on mark-
ing her impairment. The centerfold spread—so to speak—of Stohl nude
and masturbating erases her impairment to conform to the sexualized
conventions of the centerfold. This photo expunges her wheelchair and
any other visual clues to her impairment. In other words, to avoid the cul-
tural contradiction of a sexual, disabled woman, the pornographic photos
must offer up Stohl as visually nondisabled. But to appeal to the cultural
Fig. 5. Barbie’s friend Becky, the
School Photographer
20 RO SEM ARI E GARL AND- THO MSO N
narrative of overcoming disability that sells so well, seems novel, and
capitalizes on sentimental interest, Stohl must be visually dramatized
as disabled at the same time. So Playboy includes several shots of Stohl
that mark her as disabled by picturing her in her wheelchair, entirely
without the typical porn conventions. In fact, the photos of her using
her wheelchair invoke the asexual poster child. Thus, the affi rmation of
sexuality that Stohl sought by posing nude in the porn magazine came at
the expense of denying, through the powerful visual register, her identity
as a woman with a disability, even while she attempted to claim that
identity textually.
Another aspect of subject formation that disability con rms is that
identity is always in transition. Disability reminds us that the body is,
as Denise Riley asserts, “an unsteady mark, scarred in its long decay”
(1999, 224). As Caroline Walker Bynum’s intriguing work on werewolf
narratives suggests, the body is in a perpetual state of transformation
(1999). Caring for her father for over twenty years of Alzheimer’s disease
prompted Bynum to investigate how we can understand individual iden-
tity as continuous even though both body and mind can and do change
dramatically, certainly over a lifetime and sometimes quite suddenly.
Disability invites us to query what the continuity of the self might
depend upon if the body perpetually metamorphoses. We envision our
racial, gender, or ethnic identities as tethered to bodily traits that are
relatively secure. Disability and sexual identity, however, seem more
porous, although sexual mutability is imagined as elective where disabil-
ity is seldom conceived of as a choice. Disability is an identity category
that anyone can enter at any time, and we will all join it if we live long
enough. As such, disability reveals the essential dynamism of identity.
Thus, disability attenuates the cherished cultural belief that the body is
the unchanging anchor of identity. Moreover, it undermines our fantasies
of stable, enduring identities in ways that may illuminate the fl uidity of
all identity.
Disabilitys clarifi cation of the body’s corporeal truths also suggests
that the body/self materializes—in Judith Butler’s sense—not so much
through discourse, but through history (1993). The self materializes in
response to an embodied engagement with its environment, both social
and concrete. The disabled body is a body whose variations or transforma-
tions have rendered it out of sync with its environment, both the physical
and the attitudinal environments. In other words, the body becomes dis-
abled when it is incongruent both in space and in the milieu of expecta-
tions. Furthermore, a feminist disability theory presses us to ask what
kinds of knowledge might be produced through having a body radically
marked by its own particularity, a body that materializes at the ends of
the curve of human variation. For example, an alternative epistemology
that emerges from the lived experience of disability is nicely summed up
in Nancy Mairs’s book title, Waist High in the World (1996), which she
INT EGR ATIN G DISABILITY, TR ANS FOR MIN G F EMI NIS T THEO RY 21
irreverently considered calling cock high in the world.”3 What perspec-
tives or politics arise from encountering the world from such an atypical
position? Perhaps Mairs’s epistemology can offer us a critical positional-
ity called sitpoint theory, a neologism I can offer that interrogates the
ableist assumptions underlying the notion of standpoint theory (Harstock
1983).
Our collective cultural consciousness emphatically denies the knowl-
edge of vulnerability, contingency, and mortality. Disability insists
otherwise, contradicting such phallic ideology. I would argue that dis-
ability is perhaps the essential characteristic of being human. The body
is dynamic, constantly interactive with history and environment. We
evolve into disability. Our bodies need care; we all need assistance to
live. An equality model of feminist theory sometimes prizes individu-
alistic autonomy as the key to women’s liberation. A feminist disability
theory, however, suggests that we are better off learning to individually
and collectively accommodate bodily limits and evolutions than trying
to eliminate or deny them.
Identity formation is at the center of feminist theory. Disability can
complicate feminist theory often quite succinctly by invoking estab-
lished theoretical paradigms. This kind of theoretical intertextuality
infl ects familiar feminist concepts with new resonance. Let me offer
several examples: the idea of “compulsory ablebodiedness,” which Robert
McRuer (1999) has coined, extends Adrienne Rich’s famous analysis of
“compulsory heterosexuality” (1986). Joan Wallach Scott’s germinal work
on gender is recruited when we discuss disability as “a useful category of
analysis” (1988, 1). The feminist elaboration of the gender system informs
my use of the term disability system. Lennard Davis suggests that the
term normalcy studies supplant the name disability studies in the way
that gender studies sometimes succeeds Women’s Studies (1995). The
oft-invoked distinction between sex and gender clari es a differenta-
tion between impairment and disability, even though both binaries are
fraught. The concept of performing disability cites (as it were) Judith
Butler’s vigorous critique of essentialism (1990). Reading disabled bodies
as exemplary instances of “docile bodies” invokes Foucault (1979). To
suggest that identity is lodged in the body, I propose that the body haunts
the subject, alluding to Susan Bordo’s notion regarding masculinity that
“the penis haunts the phallus”(1994, 1). My own work has complicated
the familiar discourse of the gaze to theorize what I call the stare, which
I argue produces disability identity. Such theoretical shorthand impels us
to reconsider the ways that identity categories cut across and redefi ne one
another, pressuring both the terms woman and disabled.
A feminist disability theory can also highlight intersections and con-
vergences with other identity-based critical perspectives such as queer
and ethnic studies. Disability coming-out stories, for example, borrow
from gay and lesbian identity narratives to expose what previously was
22 RO SEM ARI E GARL AND- THO MSO N
hidden, privatized, and medicalized in order to enter into a political
community. The politicized sphere into which many scholars come out
is feminist disability studies, which enables critique, claims disability
identity, and creates affi rming counternarratives. Disability coming-out
narratives raise questions about the body’s role in identity by asking how
markers so conspicuous as crutches, wheelchairs, hearing aids, guide
dogs, white canes, or empty sleeves be closeted.
Passing as nondisabled complicates ethnic and queer studies’ analy-
ses of how this seductive but psychically estranging access to privilege
operates. Some of my friends, for example, have measured their regard
for me by saying, “But I don’t think of you as disabled.” What they point
to in such a compliment is the contradiction they nd between their
perception of me as a valuable, capable, lovable person and the cultural
gure of the disabled person whom they take to be precisely my opposite:
worthless, incapable, and unlovable. People with disabilities routinely
announce that they do not consider themselves as disabled. Although
they are often repudiating the literal meaning of the word disabled, their
words nevertheless serve to disassociate them from the identity group of
the disabled. Our culture offers profound disincentives and few rewards
to identifying as disabled. The trouble with such statements is that they
leave intact, without challenge, the oppressive stereotypes that permit,
among other things, the unexamined use of disability terms such as crip-
pled, lame, dumb, idiot, moron as verbal gestures of derision. The refusal
to claim disability identity is in part due to a lack of ways to understand
or talk about disability that are not oppressive. People with disabilities
and those who care about them ee from the language of crippled or
deformed and have no other alternatives. Yet, the Civil Rights Move-
ment and the accompanying black-is-beautiful identity politics have
generally shown white culture what is problematic with saying to black
friends, “I don’t think of you as black.” Nonetheless, by disavowing dis-
ability identity, many of us learned to save ourselves from devaluation
by a complicity that perpetuates oppressive notions about ostensibly real
disabled people. Thus, together we help make the alternately menacing
and pathetic cultural fi gures who rattle tin cups or rave on street corners,
ones we with impairments often fl ee from more surely than those who
imagine themselves as nondisabled.
Activism
The fi nal domain of feminist theory that a disability analysis expands is
activism. There are many arenas of what can be seen as feminist disabil-
ity activism: marches; protests; The Breast Cancer Fund poster campaign
I discussed above; action groups such as the Intersex Society of North
INT EGR ATIN G DISABILITY, TR ANS FOR MIN G F EMI NIS T THEO RY 23
America (ISNA); and Not Dead Yet, which opposes physician-assisted
suicide, or the American Disabled for Accessible Public Transit (ADAPT).
What counts as activism cuts a wide swath through U.S. society and the
academy. I want to suggest here two unlikely, even quirky, cultural prac-
tices that function in activist ways but are seldom considered as poten-
tially transformative. One practice is disabled fashion modeling and the
other is academic tolerance. Both are different genres of activism from
the more traditional marching-on-Washington or chaining-yourself-to-a-
bus modes. Both are less theatrical, but perhaps fresher and more interest-
ingly controversial ways to change the social landscape and to promote
equality, which I take to be the goal of activism.
The theologian and sociologist, Nancy Eiseland, has argued that in
addition to legislative, economic, and social changes, achieving equal-
ity for people with disabilities depends upon cultural “resymbolization”
(1994, 98). Eiseland asserts that the way we imagine disability and dis-
abled people must shift in order for real social change to occur. Whereas
Eiseland’s work resymbolizes our conceptions of disability in religious
iconography, my own examinations of disabled fashion models do similar
cultural work in the popular sphere, introducing some interesting com-
plications into her notion of resymbolization.
Images of disabled fashion models in the media can shake up estab-
lished categories and expectations. Because commercial visual media
are the most widespread and commanding sources of images in modern,
image-saturated culture, they have great potential for shaping public con-
sciousness—as feminist cultural critics are well aware. Fashion imagery
is the visual distillation of the normative, gilded with the chic and the
luxurious to render it desirable. The commercial sphere is completely
amoral, driven as it is by the single logic of the bottom line. As we know,
it sweeps through culture seizing with alarming neutrality anything it
senses will sell. This value-free aspect of advertising produces a kind of
pliable potency that sometimes can yield unexpected results.
Take, for example, a shot from the monthly fashion feature in WE Mag-
azine, a Cosmopolitan knock-off targeted toward the disabled consumer
market (Fig. 6). In this conventional, stylized, high fashion shot, a typical
female model—slender, white, blonde, clad in a black evening gown—is
accompanied by her service dog. My argument is that public images such
as this are radical because they fuse two previously antithetical visual
discourses, the chic high fashion shot and the earnest charity campaign.
Public representations of disability have traditionally been contained
within the conventions of sentimental charity images, exotic freak show
portraits, medical illustrations, or sensational and forbidden pictures.
Indeed, people with disabilities have been excluded most fully from the
dominant, public world of the marketplace. Before the civil rights initia-
tives of the mid-twentieth century began to transform the public archi-
24 RO SEM ARI E GARL AND- THO MSO N
tectural and institutional environment, disabled people were segregated
to the private and the medical spheres. Until recently, the only available
public image of a woman with a service dog that shaped the public imagi-
nation was a street-corner beggar or a charity poster. By juxtaposing the
elite body of a visually normative fashion model with the mark of dis-
ability, this image shakes up our assumptions about the normal and the
abnormal, the public and the private, the chic and the desolate, the com-
pelling and the repelling. Introducing a service dog—a standard prop of
indigents and poster children—into the conventional composition of an
upscale fashion photo forces the viewer to reconfi gure assumptions about
what constitutes the attractive and the desirable.
I am arguing that the emergence of disabled fashion models is inad-
vertent activism without any legitimate agent for positive social change.
Their appearance is simply a result of market forces. This both troubling
and empowering form of entry into democratic capitalism produces a
kind of instrumental form of equality: the freedom to be appropriated by
consumer culture. In a democracy, to reject this paradoxical liberty is one
thing; not to be granted it is another. Ever straining for novelty and capi-
talizing on titillation, the fashion-advertising world promptly appropri-
Fig. 6. Blind model with service
dog. (Alberto Rizzo, photographer.
Courtesy of WeMedia Inc.)
INT EGR ATIN G DISABILITY, TR ANS FOR MIN G F EMI NIS T THEO RY 25
ated the power of disabled gures to provoke responses. Diversity appeals
to an upscale liberal sensibility these days, making consumers feel good
about buying from companies that are charitable toward the traditionally
disadvantaged. More important, the disability market is burgeoning. At
54 million people and growing fast as the baby boomers age, their spend-
ing power was estimated to have reached the trillion-dollar mark in 2000
(Williams 1999).
For the most part, commercial advertising presents disabled models
in the same way as nondisabled models, simply because all models look
essentially the same. The physical markings of gender, race, ethnicity,
and disability are muted to the level of gesture, subordinated to the
overall normativity of the models’ appearance. Thus, commercial visual
media cast disabled consumers as simply one of many variations that
compose the market to which they appeal. Such routinization of disabil-
ity imagery—however stylized and unrealistic it may be—nevertheless
brings disability as a human experience out of the closet and into the
normative public sphere. Images of disabled fashion models enable people
with disabilities, especially those who acquire impairments as adults, to
imagine themselves as a part of the ordinary, albeit consumerist, world
rather than as a special class of excluded untouchables and unviewables.
Images of impairment as a familiar, even mundane, experience in the
lives of seemingly successful, happy, well-adjusted people can reduce
the identifying against oneself that is the overwhelming effect of oppres-
sive and discriminatory attitudes toward people with disabilities. Such
images, then, are at once liberatory and oppressive. They do the cultural
work of integrating a previously excluded group into the dominant
order—for better or worse—much like the inclusion of women in the
military.
This form of popular resymbolization produces counterimages that
have activist potential. A clearer example of disability activism might
be Aimee Mullins, who is a fashion model, celebrity, champion runner,
Georgetown University student, and double amputee. Mullins was also
one of People Magazine’s 50 Most Beautiful People of 1999. An icon of
disability pride and equality, Mullins exposes—in fact calls attention
to—the mark of her disability in most photos, refusing to normalize or
hide her disability in order to pass for nondisabled. Indeed, the public ver-
sion of her career is that her disability has been a benefi t: she has several
sets of legs, both cosmetic and functional, and so is able to choose how
tall she wants to be. Photographed in her functional prosthetic legs, she
embodies the sexualized jock look that demands women be both slender
and fi t (Fig. 7). In her cosmetic legs, she captures the look of the high fash-
ion beauty in the controversial shoot by Nick Knight called Accessible,
showcasing outfi ts created by designers such as Alexander McQueen (Fig.
8). But this is high fashion with a difference. In the jock shot, her func-
Fig. 7. Aimee Mullins using functional
legs. (Courtesy of Nick Knight.)
Fig. 8. Aimee Mullins using cosmetic
legs. (Courtesy of Nick Knight.)
INT EGR ATIN G DISABILITY, TR ANS FOR MIN G F EMI NIS T THEO RY 27
tional legs are brazenly displayed, and even in the voguishly costumed
shot, the knee joints of her artifi cial legs are exposed. Never is there an
attempt to disguise her prosthetic legs; rather all of the photos themati-
cally echo her prostheses and render the whole image chic. Mullins’s
prosthetic legs—whether cosmetic or functional—parody, indeed proudly
mock, the fantasy of the perfect body that is the mark of fashion, even
while the rest of her body conforms precisely to fashion’s impossible
standards. So rather than concealing, normalizing, or erasing disability,
these photos use the hyperbole and stigmata traditionally associated with
disability to quench postmodernity’s perpetual search for the new and
arresting image. Such a narrative of advantage works against oppressive
narratives and practices usually invoked about disabilities. First, Mullins
counters the insistent narrative that one must overcome an impairment
rather than incorporating it into one’s life and self, even perhaps as a ben-
efi t. Second, Mullins counters the practice of passing for nondisabled that
people with disabilities are often obliged to enact in the public sphere.
Mullins uses her conformity with beauty standards to assert her disabil-
ity’s violation of those very standards. As legless and beautiful, she is an
embodied paradox, invoking an inherently disruptive potential.
What my analysis of these images reveals is that feminist cultural cri-
tiques are complex. On the one hand, feminists have rightly unmasked
consumer capitalism’s appropriation of women as sexual objects for male
gratifi cation. On the other hand, these images imply that the same capi-
talist system in its drive to harvest new markets can produce politically
progressive counterimages and counternarratives, however fraught they
may be in their entanglement with consumer culture. Images of disabled
fashion models are both complicit with and critical of the beauty system
that oppresses all women. Nevertheless, they suggest that consumer cul-
ture can provide the raw material for its own critique.
The concluding version of activism I offer is less controversial and sub-
tler than glitzy fashion spreads. It is what I call academic activism, the
activism of integrating education, in the very broadest sense of that term.
The academy is no ivory tower but rather it is the grassroots of the educa-
tional enterprise. Scholars and teachers shape the communal knowledge
and the pedagogical archive that is disseminated from kindergarten to
the university. Academic activism is most self-consciously vibrant in
the aggregate of interdisciplinary identity studies—of which Women’s
Studies is exemplary—that strive to expose the workings of oppression,
examine subject formation, and offer counternarratives for subjugated
groups. Their cultural work is building an archive through historical and
textual retrieval, canon reformation, role modeling, mentoring, curricu-
lar reform, and course and program development.
A specifi c form of feminist academic activism can be deepened through
the complication of a disability analysis. I call this academic activism the
28 RO SEM ARI E GARL AND- THO MSO N
methodology of intellectual tolerance. By this I do not mean tolerance in
the more usual sense of tolerating each other—although that would be
useful as well. What I mean is the intellectual position of tolerating what
has been thought of as incoherence. As feminism has embraced the para-
doxes that have emerged from its challenge to the gender system, it has
not collapsed into chaos, but rather it has developed a methodology that
tolerates internal confl ict and contradiction. This method asks diffi cult
questions, but accepts provisional answers. This method recognizes the
power of identity, at the same time that it reveals identity as a ction.
This method both seeks equality, and it claims difference. This method
allows us to teach with authority at the same time that we reject notions
of pedagogical mastery. This method establishes institutional presences
even while it acknowledges the limitations of institutions. This method
validates the personal but implements disinterested inquiry. This method
both writes new stories and recovers traditional ones. Considering dis-
ability as a vector of identity that intersects gender is one more internal
challenge that threatens the coherence of woman, of course. But femi-
nism can accommodate such complication and the contradictions it cul-
tivates. Indeed the intellectual tolerance I am arguing for espouses the
partial, the provisional, the particular. Such an intellectual habit can be
informed by disability experience and acceptance. To embrace the sup-
posedly awed body of disability is to critique the normalizing phallic
fantasies of wholeness, unity, coherence, and completeness. The disabled
body is contradiction, ambiguity, and partiality incarnate.
My claim here has been that integrating disability as a category of
analysis, an historical community, a set of material practices, a social
identity, a political position, and a representational system into the con-
tent of feminist—indeed into all—inquiry can strengthen the critique
that is feminism. Disability, like gender and race, is everywhere, once we
know how to look for it. Integrating disability analyses will enrich and
deepen all our teaching and scholarship. Moreover, such critical intellec-
tual work facilitates a fuller integration of the sociopolitical world—for
the benefi t of everyone. As with gender, race, sexuality, and class: to
understand how disability operates is to understand what it is to be fully
human.
Rosemarie Ga rland-Thomson is Associate Professor in the Women’s
Studies Department at Emory University in Atlanta, Georgia. Her work
focuses on feminist theory and disability studies in the humanities. She
is the author of Extraordinary Bodies: Figuring Physical Disability in
American Literature and Culture, editor of Freakery: Cultural Spectacles
of the Extraordinary Body, and co-editor of Disability Studies: Enabling
the Humanities. She is currently writing a book on staring and one on
the cultural logic of euthanasia.
INT EGR ATIN G DISABILITY, TR ANS FOR MIN G F EMI NIS T THEO RY 29
Notes
1. Interestingly, in Fiske’s study, feminists, businesswomen, Asians, North-
erners, and black professionals were stereotyped as highly competent, thus
envied. In addition to having very low competence, housewives, disabled
people, blind people, so-called retarded people, and the elderly were rated as
warm, thus pitied.
2. Personal conversation with Paul Longmore, San Francisco, California, June
2000.
3. Personal conversation with Nancy Mairs, Columbus, Ohio, 17 April 1998.
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Bireysel ve toplumsal boyuta sahip olan engellilik kavramının anlaşılmasında bazı güçlükler bulunmaktadır. Bu çalışma engellilik hakkındaki kavramsal karmaşanın nedenlerini, Türkçe literatürdeki durumu tespit etmeyi, karmaşanın giderilmesi için çözüm önerileri getirmeyi ve böylece engellilik çalışmalarının daha iyi anlaşılmasını ve ilerlemesini amaçlamaktadır. Bu karmaşanın iki temel nedeni vardır. Birincisi; engellilik modellerinin ve sınıflandırmalarının engelliliğin bireysel ve toplumsal boyutunu ifade etmede zaman içinde değişen kavramları kullanmış olmalarıdır. İkincisi; engelliliğin tanımlanmasında çeşitli güçlüklerin bulunmasıdır. Bunun güçlükler arasında "engelliliğin bireysel ve sosyal yönünün ifade edilmesindeki eksiklikler; engelliliğin çok boyutlu, dinamik yapısının kültürün de etkisiyle engelliliğin tanımını güçleştirdiği ve bu nedenle ulusal ve uluslararası ortak bir tanımın zorluğu; farklı yorum ve alt kategorilere sahip olan engelliliğin yasal metinlerde ve sosyal politikalarda ihtiyaca göre farklı tanımlarının olması" gelmektedir. Bu kavramsal karmaşa Türkçe literatürde çok belirgindir. Sorun sadece hangi kavramın kullanılacağında değil, aynı zamanda kavramların nasıl tanımlanacağındadır. ABSTRACT: There are some difficulties in understanding the concept of disability, which has individual and social dimensions. The aim of this study is to determine the causes of conceptual confusion about disability, the situation in the Turkish literature, to offer solutions to eliminate the confusion, and thus to provide a better understanding and progress of disability studies. There are two main reasons for this confusion. First; Disability models and classifications have used concepts that have changed over time to express the individual and societal dimensions of disability. Latter; There are several difficulties in defining disability. These difficulties can be listed as follows: "There are deficiencies in expressing the individual and social dimensions of disability. The multidimensional and dynamic structure of disability makes the definition of disability difficult with the influence of culture, and therefore a national and international common definition is difficult. Disability, which has different interpretations and subcategories, is found in legal texts and It is defined differently in social policies according to needs." This conceptual confusion is very evident in Turkish literature. The problem is not only in which concept to use, but also in how to define the concepts.
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This new edition of Eva Feder Kittay's feminist classic, Love's La,bor, explores how theories of justice and morality must be reconfigured when intersecting with care and dependency, and the failure of policy towards women who engage in care work. The work is hailed as a major contribution to the development of an ethics of care. Where society is viewed as an association of equal and autonomous persons, the work of caring for dependents figures neither in political theory nor in social policy. While some women have made many gains, equality continues to elude many others, as in large measure, social institutions fail to take into account the dependency of childhood, illness, disability and frail old age and fail to adequately support those who care for dependents. Using a narrative of her experiences caring for her disabled daughter, Eva Feder Kittay discusses the relevance of her analysis of dependency to significant cognitive disability. She explores the significance of dependency work by analyzing John Rawls' influential liberal theory and two examples of public policy-welfare reform and family leave-to show how theory and policy fail women when they fail to understand the centrality of dependency to issues of justice. This second edition has updated material on care workers, her adult disabled daughter and key changes in welfare reform. Using a mix of personal reflection and political argument, this new edition of a classic text will continue to be an innovative and influential contribution to the debate on searching for greater equality and justice for women.
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As prenatal tests proliferate, the medical and broader communities perceive that such testing is a logical extension of good prenatal care—it helps parents have healthy babies. But prenatal tests have been criticized by the disability rights community, which contends that advances in science should be directed at improving their lives, not preventing them. Used primarily to decide to abort a fetus that would have been born with mental or physical impairments, prenatal tests arguably reinforce discrimination against and misconceptions about people with disabilities. In these essays, people on both sides of the issue engage in an honest and occasionally painful debate about prenatal testing and selective abortion. The contributors include both people who live with and people who theorize about disabilities, scholars from the social sciences and humanities, medical geneticists, genetic counselors, physicians, and lawyers. Although the essayists don't arrive at a consensus over the disability community's objections to prenatal testing and its consequences, they do offer recommendations for ameliorating some of the problems associated with the practice.
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In my first chapter there were allusions to what I called the peculiar temporalities of ‘women’. But what are the consequences of this for feminism; what does it mean to insist that ‘women’ are only sometimes ‘women’, and wouldn’t this suggestion undercut feminism anyway? As part of my argument that it would not, we could start with a fairly straightforward version of what this temporality might be.