Feminist Disability Studies PDF

Feminist Disability Studies
Author(s): Rosemarie Garland‐Thomson

Source: Signs , Vol. 30, No. 2 (Winter 2005), pp. 1557-1587
Published by: The University of Chicago Press
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Rosemarie Garland-Thomson
Feminist Disability Studies
J ust what is feminist disability studies? It is more than research and

scholarship about women with disabilities, just as feminist scholarship
extends beyond women to critically analyze the entire gender system.
Like feminist studies itself, feminist disability studies is academic cultural
work with a sharp political edge and a vigorous critical punch. Feminist
disability studies wants to unsettle tired stereotypes about people with
disabilities. It seeks to challenge our dominant assumptions about living
with a disability. It situates the disability experience in the context of rights
and exclusions. It aspires to retrieve dismissed voices and misrepresented
experiences. It helps us understand the intricate relation between bodies
and selves. It illuminates the social processes of identity formation. It aims
to denaturalize disability. In short, feminist disability studies reimagines
disability.
Feminism challenges the belief that femaleness is a natural form of
physical and mental deficiency or constitutional unruliness. Feminist dis-
ability studies similarly questions our assumptions that disability is a flaw,
lack, or excess. To do so, it defines disability broadly from a social rather
than a medical perspective. Disability, it argues, is a cultural interpretation
of human variation rather than an inherent inferiority, a pathology to cure,
or an undesirable trait to eliminate. In other words, it finds disability’s
significance in interactions between bodies and their social and material
environments. By probing the cultural meanings attributed to bodies that
societies deem disabled, feminist disability studies does vast critical cultural
work. First, it understands disability as a system of exclusions that stig-
matizes human differences. Second, it uncovers communities and iden-
tities that the bodies we consider disabled have produced. Third, it reveals
discriminatory attitudes and practices directed at those bodies. Fourth, it
exposes disability as a social category of analysis. Fifth, it frames disability
as an effect of power relations. Feminist disability studies shows that dis-
ability—similar to race and gender—is a system of representation that
I wish to thank Catherine Kudlick for helpful suggestions.
[Signs: Journal of Women in Culture and Society 2005, vol. 30, no. 2]
䉷 2005 by The University of Chicago. All rights reserved. 0097-9740/2005/3002-0004$10.00

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1558 ❙ Garland-Thomson
marks bodies as subordinate, rather than an essential property of bodies

that supposedly have something wrong with them.
Feminist disability studies often uses two critical practices that might
seem counterintuitive. First, it tends to avoid impairment-specific or med-
ical diagnostic categories to think about disability. Certainly, feminist dis-
ability studies acknowledges communities of people based on shared dis-
ability experience, and it recognizes the differences among the wide variety
of stigmatized forms of embodiment that constitute disability in its broad-
est conceptualization—from blindness to intersex to dyslexia, for instance.
Nevertheless, it focuses on examining the patterns of meaning attributed
to those bodies rather than specific forms, functions, and behaviors. Fem-
inist disability studies scrutinizes how people with a wide range of physical,
mental, and emotional differences are collectively imagined as defective
and excluded from an equal place in the social order. Social categories
parallel to “disabled,” such as “people of color” or “queer,” also embrace
a wide range of varying physical characteristics, identities, and subjective
experiences, even while they risk flattening significant differences. Such
social—rather than biological—labels accurately capture the single, re-
ductive, exclusionary social category that conflates and stigmatizes a range
of differences according to a subordinating discourse. Similarly, disability
brings together traits that may have little in common in order to create
a social class of people designated as defective and politically, economically,
and socially discriminated against. Thus, people with chronic or acute
illnesses, appearance impairments such as birthmarks or fatness, traumatic
injuries, congenital impairments or anomalies, sensory impairments, latent
conditions such as HIV or hereditary conditions, learning disabilities, and
mental, developmental, or emotional illnesses are grouped together under
the medical-scientific rubric of abnormality and its accompanying cultural
sentence of inferiority. This process of interpellation and its material con-
sequences are the major critical concerns of feminist disability studies.
Second, feminist disability studies questions our assumptions by using
precise language that may seem convoluted when talking about disability.
I use phrases such as “the traits we think of as disability,” for example,
rather than words like “deformities” or “abnormalities.” We say things
like “bodies that violate the normative standards and expectations of bodily
form and function” not to obfuscate but rather to clarify by insisting that
readers do not fall back on essentialist definitions of disability as inferior
embodiment. Sometimes it is important to say “people who identify as
disabled” or “people who identify as nondisabled” or even “people who
are considered disabled” to make clear the important difference between
bodies themselves and the ascribed or achieved identities attached to them

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S I G N S Winter 2005 ❙ 1559
in social relations and cultural representations. This language calls atten-

tion to the hidden norm that lurks behind our understandings of disability,
one that makes some bodies seem naturally deficient or excessive and
others seem superior. In addition, language about “figuring” and “rep-
resenting” or “narratives” can dislodge the pervasive negative notions we
all learn about disability and shake up our assumptions about what con-
stitutes happiness, attractiveness, suffering, dignity, or a livable existence.
Feminist disability studies thus reveals both the cultural work and the limits
of language.
Disability proves to be an especially useful critical category in three
particular concerns of current feminist theory. First is probing identity;
second is theorizing intersectionality; third is investigating embodiment.
Feminism questioned the coherence, boundaries, and exclusions of the
term woman—the very category on which it seemed to depend. Con-
sequently, it expanded its lexicon beyond gender differences to include
the many inflections of identity that produce multiple subjectivities and
subject positions. Our most sophisticated feminist analyses illuminate how
gender interlocks with the race, ethnicity, sexuality, and class systems. This
focus on how identity operates prompted an interest in the relation be-
tween bodies and identity. As a category of analysis, disability provides
fresh ways of thinking about the complexity of embodied identity. Feminist
disability studies defines disability as a vector of socially constructed iden-
tity and a form of embodiment that interacts with both the material and
the social environments. Considering disability sheds light on such fem-
inist concerns as the politics of appearance, the ethics of selective abortion
and genetic testing, the relation between femininity and embodiment, the
commercialization of health and fitness, issues of caretaking and caregiv-
ing, the surgical normalization of bodies, the ideology of normalcy, re-
productive rights and responsibilities, the stigmatizing of age, and the
politics of access and inclusion. Feminist disability studies questions the
dominant premises that cast disability as a bodily problem to be addressed
by normalization procedures rather than as a socially constructed identity
and a representational system similar to gender.
All the works discussed here interrogate the category of disability in
ways that parallel feminist challenges to patriarchal assumptions about
gender. My aim is to register, sort, and organize this work, reaching back
through more or less the last ten years. To varying degrees, each of the
citations gathered here unsettles the way our collective consciousness
frames disability and being disabled. Rather than attempting a compre-
hensive review of work on women and disability, I have selected repre-
sentative books, recent critical articles, and special issues of leading journals

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that most trenchantly address feminist disability studies’ central critical

points. While most of the extensive work on women’s health issues crit-
icizes patriarchal structures and social inequality, what I am claiming here
as feminist disability studies undertakes a deeper critique that proble-
matizes and politicizes ideological concepts such as health, disease, nor-
malcy, cure, and treatment. I have included only a sample of women’s
life-writing on illness and impairment, which is an important topic for
another review essay. The studies here marshal the critical tools that can
reshape teaching, research, and scholarship about gender.
I have organized this selected body of critical and creative work into
the broad categories of retrievals, reimaginings, and rethinkings. Within
those headings are additional groupings to provide coherence to a large
and diverse selection of work. Because I have quite intentionally cast a
very broad net here to suggest the diversity of what counts as disability
and as feminist, my analysis of each individual work is brief. My aim is to
provide readers with a sense of how pervasive a presence disability is in
cultural discourse, once one knows how to look for it.
Retrievals
Narrative retrievals
Feminist theory’s recent concern with multiple identities emphasizes the
diversity of women’s voices, standpoints, and experiences—including
those of women with disabilities. This project of narrative recuperation
has yielded several anthologies of writings by women with disabilities that
follow the generic conventions of such collections. Although these vol-
umes are not scholarly analyses, they nevertheless offer underrepresented
perspectives for women’s studies courses. The immediacy of personal nar-
rative conveys disabled women’s distinct perspectives on sexuality, repro-
ductive issues, appearance biases, and other shared struggles. No More
Stares, edited in 1982 by Ann Cupolo Carrillo, Katherine Corbett, and
Victoria Lewis—now out of print—is an early and powerful feminist telling
of disabled women’s stories as a form of self-advocacy, role modeling, and
disability pride. The in-your-face politics of No More Stares gave way in
the mid-1980s and early 1990s to personal testimonies such as Voices from
the Shadows: Women with Disabilities Speak Out (Matthews 1983), a series
of interviews with Canadian disabled women; Women with Disabilities:
Found Voices (Willmuth and Holcomb 1993), a collection of essays fo-
cusing on psychology; and With the Power of Each Breath: A Disabled
Women’s Anthology (Browne, Connors, and Stern 1985), a blend of sta-
tistical studies, personal narratives, epistolary essays, interviews, and poetry

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on identity, community, anger, parenting, and body acceptance. All these

collections are more valuable for the perspectives they convey than their
literary merit.
A more belletristic collection is With Wings: An Anthology of Literature
by and about Women with Disabilities, edited in 1987 by disabled activist
Marsha Saxton and by Florence Howe under the imprimatur of Howe’s
Feminist Press. Composed of poetry and autobiography, this volume both
retrieves and recruits. What I call recruitment is the strategy of finding
and claiming work that is not explicitly announced as being about disability
or that is not authored by women who identify as disabled but that nev-
ertheless captures disability experience. With Wings, for example, recruits
canonical feminist authors with disabilities, such as Adrienne Rich, Muriel
Rukeyser, Alice Walker, and Mary Wilkins Freeman, placing them along-
side lesser-known disabled activists, writers, and academics. This gentle
outing of disabled writers not only strengthens the canon of feminist
disability writing, but it suggests that even though the experience of dis-
ability is almost universal, disability identity goes unclaimed by and un-
ascribed to accomplished people. Because the identity “disabled” acts as
a disqualifier, it is often not associated with success or competence. Thus,
claiming authors such as Adrienne Rich as disabled feminist writers be-
comes a significant political move that anthologies can make.
Several anthologies of disability writing by both men and women can
be counted as feminist because they challenge normative perspectives. One
is an uneven but pedagogically useful collection with the terrific title
Staring Back: The Disability Experience from the Inside Out, edited by
Kenny Fries in 1997. This volume contributes to disability canon for-
mation by recruiting established authors such as Rich, Marilyn Hacker,
Lucy Grealy, Andre Dubus, John Hockenberry, and Ved Mehta—all writ-
ers with disabilities. These authors lend authority to lesser known disabled
writers such as Anne Finger, Terry Galloway, Victoria Ann Lewis, Nancy
Mairs, and Susan Nussbaum.
Two collections of Deaf writing represent the voluminous work by the
Deaf community, whose indigenous language is American Sign Language
(ASL).1 Because English is often a foreign or second language to Deaf
people, these writers have an adversarial relationship with written English
or any spoken language. As linguistic outsiders, whether they use ASL or
struggle with speaking, Deaf writers often provide a unique critical per-
1
Another collection of Deaf writing is Bragg 2001. “Deaf” with a capital “D” indicates
a cultural and linguistically distinct identity, whereas “deaf” is a description of physical hearing
loss.

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spective. The 1992 anthology No Walls of Stone: An Anthology of Liter-

ature by Deaf and Hard of Hearing Writers, edited by Jill Jepson, collects
contemporary poetry and prose by several Deaf women writers. A Mighty
Change: An Anthology of Deaf American Writing, 1816–1864, edited in
2000 by Deaf studies scholar Christopher Krentz, gathers for the first time
Deaf writers from the nineteenth century. One of two women writers
included is Adele Jewel, a homeless deaf woman who sold her brief au-
tobiography on the antebellum streets to support herself. Jepson’s an-
thology exemplifies literary retrievals, while Krentz’s represents historical
recoveries. Both open up an often overlooked world to the dominant
hearing culture.
Scholarly retrievals
Historians, literary scholars, and theater critics are recovering unnoticed
or lost histories and probing cultural representations of women with dis-
abilities. Much new work, for example, reexamines renowned figures such
as Helen Keller from a disability identity perspective, trying to pry loose
such icons from the stereotypical scripts that limit how we understand the
lives and politics of women with disabilities. For example, in The Radical
Lives of Helen Keller, historian Kim E. Nielsen (2003) revisits Keller’s
progressive radical politics. Nielsen argues that Keller’s political views were
informed by a disability perspective but that this fact was stifled by over-
determined sentimental portrayals of Keller as the courageous deaf-blind
girl.
Other scholarly studies recover histories of disabled individuals or
groups. Two recent books stand out as particularly effective examples.
First is Reflections: The Life and Writings of a Young Blind Woman in Post-
revolutionary France, written by the resourceful and ardent twenty-two-
year-old blind novelist Thérèse-Adèle Husson ([1825] 2001). Adroitly re-
searched, presented, and translated by Catherine J. Kudlick and Zina
Weygand, this volume is a historical and narrative gem in the tradition of
“lost” African-American texts such as Harriet Jacobs’s Incidents in the
Life of a Slave Girl ([1861] 1988). This critical genre demonstrates that
the seeming historical silence of women is an effect of sexism. Like Jacobs’s
emancipation narrative, Reflections is a rhetorical feat that witnesses the
dignity of a disenfranchised group while simultaneously overturning the
dominant order’s oppressive views of that group. Addressed to a sighted
audience whose resources Husson desperately needs, this commanding
manifesto advocates independence and education for blind people. Like
Jacobs, Husson eschews the marriage plot, recognizing that what the

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multiply disenfranchised need is economic and political inclusion rather

than conformity to traditional gender scripts.
A second exemplary historical retrieval is Emily K. Abel’s study, Hearts
of Wisdom: American Women Caring for Kin, 1850–1940 (2000). This
history of American women’s caregiving mounts a disability critique
against the ideology of autonomy that casts people with disabilities as
helpless foils to the supposedly independent, ruggedly masculine figure
that Western individualism vaunts as its ideal. Feminist disability studies
enters the controversy about whether feminists should celebrate or be
liberated from the ethic of care by accentuating the perspective of the
receiver of care and the potential for asymmetry in relationships of caring.
Abel frames the history of care as a cultural benefit for women rather than
as exploitation. She discusses maternal advocacy for children labeled as
mentally defective and for Deaf children, highlighting mothers’ resistance
to oppressive authorities who would devalue their children. Abel avoids
romanticizing caring, recognizing the limits of this maternal support in
the face of both internalized and imposed cultural prejudices against
disability.
The New Disability History: American Perspectives, a collection of essays
edited by Paul Longmore and Lauri Umansky (2001b), offers an excep-
tionally incisive introduction (2001a) that lays out major issues and per-
spectives in disability history and illuminates the parallels between the
development of disability history and U.S. women’s history.2 The volume’s
leading chapter, “Disability and the Justification of Inequality in American
History,” by Douglas C. Baynton (2001), exemplifies the feminist method
of intersectional analysis. Baynton shows how the concept of disability has
repeatedly been used to argue both for and against unequal treatment of
women and people of color. This work illustrates the ways in which the
categories of disability, gender, and race intertwine and inflect one another
in such major U.S. historical discourses as slavery, abolition, immigration,
and suffrage.
Whereas historians retrieve voices and figures of disabled women from
the past, literary critics examine both familiar and obscure textual rep-
resentations of women with disabilities. Such investigations extend and
deepen earlier images of women. Female biology and feminine ideology
have both traditionally been interpreted as forms of disability in Western
culture. Aristotle, after all, pronounced women to be “mutilated males”
2
Other historical studies on disability are Ott, Serlin, and Mihm 2002 and Rose 2003.
For a review essay on other disability history books, see Kudlick 2003.

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(1944, bk. 2, 175). This gendering of disability—and this disabling of

gender—is being scrutinized thoroughly by feminist literary critics. One
of the best examples of early feminist disability studies is Diane Price
Herndl’s Invalid Women: Figuring Feminine Illness in American Fiction
and Culture, 1840–1940. Appearing in 1993, just at the time when the
field of disability studies was gaining recognition in the humanities,
Herndl’s book does not explicitly announce itself as disability studies.
Nevertheless, by retrieving the pervasive figure of the invalid to insist on
the connection between the social and textual, it does the critical work
of feminist disability studies. Representations of invalid women are not
simply metaphors, Herndl confirms; rather, they shape how our culture
understands illness, femininity, and normality.
Several studies follow Herndl in using literary critical methods to probe
the semiotics of disability and the capacity of representation to construct
reality. Although some of this work focuses on the textual construction
of specific impairments such as blindness or deafness, disability functions
as an explicit identity category and social system in these analyses. Mary
Klages’s study, Woeful Afflictions: Disability and Sentimentality in Vic-
torian America (1999), for example, recognizes the previously unre-
marked centrality of the disabled figure to sentimental literature, which
was perhaps the primary genre of women’s writing in the nineteenth
century. Klages centers on blindness, not as impairment but as the par-
adigmatic trope of disability in the nineteenth century, explicating Helen
Keller and her predecessor Laura Bridgman as poster children, iconic
objects appropriated by the empathetic self that developed during the
Enlightenment.
Fictions of Affliction: Physical Disability in Victorian Culture, by Martha
Stoddard Holmes (2004), also examines the key place of the disabled
figure in the culture of sentiment, illuminating the operation of both
disability and femininity in Victorian culture and its canonical texts.
Holmes shows that sentimental culture instructs readers how to feel about
disability. Fictions of Affliction is a model study that exemplifies perhaps
the most important critical work of disability studies: it always approaches
disability as a historical category rather than as a metaphor.3
Feminist disability studies politicizes and historicizes textual represen-
tations of disability. Indeed, this explicit connection between word and
world animates all feminist scholarship. Just as critics have come to rec-
ognize that the blackness of an Othello or the madness of an Ophelia,
3
For my own analysis of disability in sentimental literature, see Thomson 1997, esp.
chap. 4, and 1998.

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for example, goes beyond metaphor to do the cultural work of racism and
sexism, so feminist disability studies understands that textual figures of
disability both register and materialize social patterns of bias and exclusion
based on ability norms that operate similarly to gender and racial systems.
A good deal of feminist theory misses this political potential inherent in
a feminist disability studies approach. The prominent interest in hybrid
theoretical figures such as cyborgs, monsters, and grotesques—led by
Donna Haraway, Rosi Braidotti, Susan Stewart, and Mary Russo—squan-
ders such a critical opportunity by failing to recognize and politicize the
relation between these figures and actual women with disabilities. Arrested
in the theoretical and metaphorical, these figures for feminist liminality
escape confronting the social meanings ascribed to the particularities of
embodiment by disregarding the disability system’s entanglement with
the gender system. One major aim of all of my own work in both literary
and feminist studies is to show that the always overdetermined metaphoric
uses of disability efface and distort the lived experience of people with
disabilities, evacuating the political significances of our lives and mitigating
the influence of disability culture.
An exemplary recent collection counters such tendencies to generalize
the body that is theorized. “Defects”: Engendering the Modern Body, edited
by Helen Deutsch and Felicity Nussbaum (2000), focuses on the eigh-
teenth century as the historical point at which the modern conception of
disability emerges. This volume collectively argues that the cultural mean-
ings of ideological concepts such as “defect,” “monstrosity,” and “de-
formity”—all variations of disability and entangled with notions of gender
and race—shift as a modern concept of self emerges from early modern
and Enlightenment thinking. Rigorous historical accountability, coupled
with critical methods such as close readings of literary and cultural texts,
yields nuanced analyses of the intersectional alliances among femininity,
coloredness, and monstrosity. The volume shows that the monstrous and
deformed are antecedents to modern notions of race and are paradigms
for understanding sexual and racial differences as well as ugliness and
beauty.
Also in the area of literary studies, the Modern Language Association
has recently brought out a wide-ranging volume of critical essays called
Disability Studies: Enabling the Humanities (Snyder, Brueggemann, and
Garland-Thomson 2002), which serves as a good introduction to disability
studies in a women’s studies context. Suitable for graduate and under-
graduate teaching in the humanities, this collection includes chapters on
topics such as the politics of breast prostheses, disabled fashion models,
a spiritual autobiography of a fifteenth-century deaf and disabled Castilian

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nun, disabled women’s sexuality, the question of so-called physician-as-

sisted suicide, Victorian fiction’s use of the twin structure in which one
twin is nondisabled and one is disabled, and the radical potential of a
queer disability studies.4 This volume fully integrates feminist disability
studies into its contents and critical perspective.
Disability and Contemporary Performance: Bodies on the Edge, by Petra
Kuppers (2003), offers an excellent introduction to the performance of
disability. Kuppers points out that the monstrous and freakish have pro-
vided the conventions of disability performance. The book focuses on the
place of the disabled body as both spectacle and subject in medical theater,
disability dance, trauma theory, and community artwork produced in men-
tal health settings. Firmly linking embodiment and representation, Kup-
pers addresses the central question in identity studies: that is, how to
trouble the identity category “disabled” without evacuating it as a position
of communal endeavor and identity politics.
Rachel Adams’s study, Sideshow U.S.A.: Freaks and the American Cul-
tural Imagination (2001), urges as well an explicit relation between cul-
tural tropes and material conditions. Adams’s study recognizes that freak
shows are the literal performance of disability as well as part of the labor
history of people with disabilities. Adams’s book is careful always to de-
naturalize freaks, insisting on the humanity and materiality of her subjects.
Thus she politicizes the social identities of people such as the contem-
porary bearded lady, Jennifer Miller, as people with disabilities rather than
appropriating them as metaphorical figures.5
Collectively, these historical and literary retrievals characterize what I
take to be the unique strengths of a vibrant feminist disability studies.
They theorize identity not as essential but as a product of a complex and
intersecting social construction that has profound political implications.
At the same time, these retrievals scrupulously address the materiality of
bodies firmly embedded in the contexts of their environment and their
history. The feminist theoretical concerns of representation, embodiment,
identity, and intersectionality are thus elaborated in fresh ways by feminist
disability studies.
4
For a thorough examination of physician-assisted suicide, see Battin, Rhodes, and Silvers
1998.
5
For more on disability and freak shows, see Thomson 1996, 1997, esp. chap. 10, 1998,
1999.

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Reimaginings
Feminist disability studies not only retrieves overlooked experiences and
undertheorized critical perspectives, it strives to rewrite oppressive social
scripts. The stories we collectively know shape the material world, inform
human relations, and mold our sense of who we are. Because prevailing
narratives constrict disability’s complexities, they not only restrict the lives
and govern the bodies of people we think of as disabled, but they limit
the imaginations of those who think of themselves as nondisabled. Ster-
eotypical, often unexamined narratives ultimately undergird exclusionary
environments, employment discrimination, and social marginalization.
Women with disabilities, even more intensely than women in general,
have been cast in the collective cultural imagination as inferior, lacking,
excessive, incapable, unfit, and useless. In contrast to normatively feminine
women, women with disabilities are often stereotypically considered un-
desirable, asexual, and unsuitable as parents. Disability life-writing re-
peatedly attests that adjusting to an acquired impairment is not as difficult
as adjusting to the stigmatization and lowered social status that comes
from moving into the community of the disabled. Virulent biases and
negative associations discourage one from identifying as disabled. Accom-
plished women who have physical, mental, or psychological impairments
not infrequently flee the category, sometimes proclaiming proudly that
they are not “disabled.” Nevertheless, a positive identity politics for
women with disabilities is nascent, even though not as developed as the
early black-is-beautiful racial politics, cultural feminism, or the more recent
queer pride movement.
Tearing down such attitudinal barriers is one of feminist disability stud-
ies’ aims. Consequently, interpreting disability as human variation rather
than essential inferiority is one of its most fully developed critical strategies.
Reinterpreting disability involves not only working toward ending disa-
bility discrimination but also formulating a logic that allows people to
claim the identity of disabled without having to conceive of it as a di-
minishment of the self. To this end, much feminist disability studies centers
on revising cultural narratives.
The available, received cultural narratives of disability—similar to those
of the gender and race systems—are prejudicial, oppressive, and disem-
powering. Five narratives of disability dominate our collective understand-
ing of disability. First is the biomedical narrative that casts the variations
we think of as impairment as physiological failures or flaws, as medical
crises that demand normalization through technology or other allopathic
measures. Second is the sentimental narrative that sees people with dis-

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abilities as occasions for narcissistic pity or lessons in suffering for those

who imagine themselves as nondisabled. Third is the narrative of over-
coming that defines disability as a personal defect that must be compen-
sated for rather than as the inevitable transformation of the body that
results from encounters with the environment. Fourth is the narrative of
catastrophe that presents disability as a dramatic, exceptional extremity
that either incites courage or defeats a person. Fifth is the narrative of
abjection that identifies disability as that which one can and must avoid
at all costs. Seldom do we see disability presented as an integral part of
one’s embodiment, character, life, and way of relating to the world. Even
less often do we see disability presented as part of the spectrum of human
variation, the particularization of individual bodies, or the materialization
of an individual body’s history. Instead we learn to understand disability
as something that is wrong with someone, as an exceptional and escapable
calamity rather than as what is perhaps the most universal of human ex-
periences. After all, if we live long enough, we will all become disabled.
A feminist disability perspective suggests that we are better off learning
to accommodate disabilities, appreciate disabled lives, and create a more
equitable environment than trying to eliminate disability.
In one of disability studies’ germinal critical works, The Disabled God:
Toward a Liberatory Theology of Disability, theologian and sociologist
Nancy L. Eiesland (1994) calls for a reimagining of disability through the
powerful cultural tool of religious iconography. Eiesland asserts that the
way we imagine disability and disabled people must shift in order for real
social justice to occur. In addition to requiring legislative, economic, and
social changes, achieving equality for people with disabilities requires what
she terms resymbolization (98). Pointing to the paradox that Jesus, the
central religious figure of Western culture, is portrayed as disabled while
actual people with disabilities are often devalued and excluded from Chris-
tian communities, Eiesland urges Christian narrative to resymbolize dis-
ability through the “liberatory realism” of acknowledging disability as the
human condition, embodied in the figure of Christ (103). Eiesland’s call
draws on feminist thought by interpreting the disabled god as a figure
for human interdependence and mutuality of care. Such reimagining can
lead to a theology that liberates both disabled and nondisabled people
from the estrangement from our bodies that oppressive narratives of dis-
ability perpetuate.
Situated theory
Feminist disability studies often counters our received stories by reima-
gining disability. The retrievals discussed above challenge oppressive nar-

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S I G N S Winter 2005 ❙ 1569
ratives primarily by exposing them to critical analysis or offering perspec-

tives emerging from disabled experience. Several exemplary works develop
what I call situated theory. These are complex, sophisticated explorations
of disability issues elaborated not in the genre of the traditional critical
study but rather as analyses that are thoroughly situated from the position
of the disabled woman subject. Grounding theory in life-writing, these
works model feminist standpoint practice at its most effective. Situated
theory is not simply disability memoirs or illness narratives, both of which
are growing and compelling genres that are beyond the scope of this essay.
Rather, situated theory offers a feminist disability epistemology that pro-
tests the disability system. Taken together, the books I have singled out
here probe most of the central issues of feminist disability studies: ap-
pearance, identity, reproduction, sexuality, genetics, passing, access, dif-
ference, stigma management, and social interaction.
Perhaps the best known and most often taught of the books I am
highlighting is Lucy Grealy’s lyrical and wrenching Autobiography of a
Face (1994), a classic female bildungsroman. Grealy tells her own story
of growing into womanhood with significant facial disfigurement resulting
from her many surgeries to treat jaw cancer. Following the critical tradition
of Audre Lorde’s 1980 autobiography, The Cancer Journals, Grealy’s text
goes beyond a powerful illness narrative to become feminist disability
studies as it interrogates the gendered politics of appearance and the beauty
system. The appallingly painful treatments, the ghastly surgeries, the dis-
rupted life, and the shadow of death are all less oppressive to Grealy than
the relegation to “ugly” that comes from a world full of both cruel and
clumsy onlookers. Her story makes clear that the limitations impairment
imposes are not as disabling as the social prejudices Grealy absorbs so
proficiently and naively as she forms her sense of a feminine self according
to the mirroring she gets from a society devoted to narrow appearance
standards and hostile to human differences. Disability discrimination, not
cancer, threatens her life.
Nancy Mairs is a nationally recognized disability author whose work
exemplifies situated theory as well. A maestra of the personal essay, she
wields the genre with wry wit and passion. “On Being a Cripple,” from
her collection of essays, Plaintext (1986), is probably disability studies’
most canonical, if somewhat reductive, meditation on the politics of self-
naming. Mairs recuperates “cripple” for its transgressive power, as gay
and lesbian activists have reclaimed “queer.” “Cripple,” Mairs declares,
evokes a “wince” from those who imagine themselves as nondisabled.
“As a cripple,” she avers, “I swagger” (9). Much of Mairs’s work enlists
a narrative of catastrophe that makes for compelling reading but risks

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playing into a kind of disability voyeurism that can be politically counter-

productive and reinforce stereotypes of disability as unredeemed suffering.
Mairs’s strongest, most overtly political collection of situated theory is
Waist-High in the World: A Life among the Nondisabled (1996), which
she irreverently considered calling “Cock-High in the World.” Mairs de-
velops most fully here what I have called a “feminist disability sitpoint
theory” by articulating a perspectival account of experiencing the world
from a wheelchair.6 As a perhaps clunky allusion to the well-developed
concept of feminist standpoint theory, my use of sitpoint particularizes
standpoint theory to disabled women by calling attention to the normative
assumption that one perceives the world from a standing rather than sitting
position. Although the personal narrative that Mairs plies so poignantly
is still central, an acknowledgment of group consciousness and wider
sociopolitical commitments infuses Waist-High in the World. We still learn
of the struggles to maintain dignity that disabled—and aging—women
face. We see here a deep sexuality that many would deny her. We note her
ambivalent relationship with appearance, a kind of sweet vanity that she is
at once critical of and nostalgic about. We witness most fully in this book
a profound understanding of and moving meditation about embodiment.
Another virtuosa of the personal essay as social critique is Georgina
Kleege, whose Sight Unseen (1999b) expands on Mairs’s implicit project
of articulating an epistemology of disability. Ranging from blind figures
to film, art, and teaching, each chapter gracefully explicates Kleege’s per-
spective on and experience of blindness and womanhood. Scrupulously
eschewing the Helen Keller genre of inspirational overcoming narrative,
Kleege moves seamlessly from the personal to the political, revealing how
she “became blind,” punning smartly on her development of a disability
consciousness and claiming of “blind” as an identity category. One of the
strongest chapters (Kleege 1999a) is about the stigma-management prac-
tice of faking eye contact—which I take to be the disabled equivalent of
faking orgasm, the former to feign normative sightedness, the latter to
simulate normative feminine heterosexuality.
Whereas Kleege queries blindness, Brenda Jo Brueggemann interro-
gates deafness in Lend Me Your Ear: Rhetorical Constructions of Deafness
(1999). Both Kleege and Brueggemann open up a critical gap between
identity and biology by exploring the distinctions between the corporeal
experience of being legally blind and hard of hearing, respectively, and
embracing the politicized identities of Blind and Deaf. Brueggemann is
particularly incisive in her elaboration of the politics of passing that those
6
For an elaboration of my version of feminist disability theory, see Thomson 2002.

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in between Deaf and hearing culture must negotiate. In a manner similar

to Kleege’s sweep of blind figures and tropes, Brueggemann reaches back
through classical rhetoric’s privileging of “a good man speaking well” (2)
as the dominant model of eloquence, from which she ponders the position
of a Deaf woman signing and writing within the rhetorical tradition. Lend
Me Your Ear also surveys Deaf culture, introducing the rich genre of Deaf
poetry—or sign poetry—much of which is produced by women. Sign
poetry, a literature of presence performed in ASL, is one of the most
distinctive and vibrant of the cultural products arising from disability cul-
ture.
Eli Clare’s brief but eloquent Exile and Pride: Disability, Queerness,
and Liberation (1999) is more manifesto than memoir. Clare calls on the
personal experience of growing up with cerebral palsy as a sexually abused
daughter in virulently homophobic rural Oregon to create a vivid portrait
of outsiderness reminiscent of Gloria Anzaldúa’s Borderlands (1987). This
narrative of coming into political consciousness captures the complexities
of intersectional identity and the challenges of repudiating one’s origins
while accounting for the strengths they provided. This aching but affir-
mative book is at once a revelation and a sustained critique of such disability
stereotypes as the super crip, the disabled figure that assures, soothes, and
inspires the nondisabled. Exile and Pride explores the politics of naming
as well, probing the ambivalent power of terms such as freak, queer, and
cripple. What is freshest here is Clare’s fusing of queer, disabled, and
environmentalist activism in a reworking of ecofeminism that extends dis-
ability critique in new directions.
As Clare’s impassioned narrative witnesses, one of the most vibrant
areas of feminist disability studies is queer disability studies. Two an-
thologies from disabled lesbians have emerged recently that fall between
what I call here retrievals and reimaginings. Each collection is an in-
your-face, explicitly political manifesto about a queer disabled perspec-
tive. First is a Canadian collection, Pushing the Limits: Disabled Dykes
Produce Culture, edited by Shelley Tremain (1996). This aptly titled an-
thology, consisting mostly of poetry, validates the “existence of disabled
dykes” by addressing the cultural contradiction that lesbian is a sexual
identity while disabled women are considered asexual (15). Second is
Restricted Access: Lesbians on Disability, edited by Victoria A. Brownworth
and Susan Raffo (1999). Complementing the poetry-dominated earlier
collection, Restricted Access has a less provocative framing that addresses
the important questions of what constitutes disability and access. Despite
the conventional overview introduction, the prose pieces are radical in
content, creating fuller narratives than the poetry makes possible. For

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example, fat and disability activist, zine writer, and queer performer Nomy
Lamm (1999) gives us “Private Dancer: The Evolution of a Freak,” which
she begins by recounting a drag show she performs in which her partner
masturbates with Lamm’s prosthetic leg, which she has removed on stage.
While most of the essays are tamer, all challenge the assigned abnormality
and asexuality against which disabled lesbians must struggle.7
Another use of autobiography to articulate a feminist disability per-
spective is Past Due: A Story of Disability, Pregnancy, and Birth by dis-
ability activist, feminist, and writer Anne Finger (1990). Reproductive
rights take on different valences with regard to disabled women. Whereas
nondisabled women must often struggle to escape the mandate of moth-
erhood, disabled women must often battle to claim motherhood. Finger’s
straightforward narrative reveals the deeply entrenched prejudice against
disabled women as mothers as it probes the complexities of an activist
disabled woman’s giving birth to a disabled child. As with many feminist
disability memoirs, Past Due challenges the medicalization of bodies and
birthing, countering that a sociopolitical interpretation of disability is a
point of departure for feminist politics.
Alice Wexler’s Mapping Fate: A Memoir of Family, Risk, and Genetic
Research also explores the medicalization of family relations. Her use of
standpoint epistemology transforms medical history into feminist disability
theory. Wexler situates this 1995 study in her own story of “the drama
of families with Huntington’s disease” to reveal the intricate ethical and
interpersonal dilemmas involved in genetic testing for disabling conditions
(xi). Wexler critically examines how the “dream of prediction” that ge-
neticists and families adhere to so intransigently translates into the lived
experience of embodying risk status for disability (xiii). By probing sisterly
entanglements, a daughter’s ambivalent genetic and emotional relation to
her ill mother, and the corrosive family scripts of silence and secrecy,
Mapping Fate narrates how the biomedical personal is political.
The politics of bioethics Wexler elaborates through memoir as medical
history is expanded on in several volumes that blend situated theory with
academic critical research. Prenatal Testing and Disability Rights, edited
in 2000 by Erik Parens of the Hastings Center and bioethicist and dis-
ability rights activist Adrienne Asch, comprehensively lays out the context
and debates on prenatal genetic testing. A feminist disability perspective
that extends Finger’s account of motherhood emerges from several pieces
7
Another informative work on disabled sexuality in general is Shakespeare, Gillespie-
Sells, and Davies 1996.

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in the collection. Deborah Kent’s (2000) meditation on being a blind

mother giving birth to a seeing child captures effectively the ambiguities
and contradictions disabled mothers face. The volume witnesses most
potently the situated knowledge that informs the politics of selective
abortion, from Marsha Saxton’s (2000) carefully argued position pa-
per on “Why Members of the Disability Community Oppose Prenatal
Diagnosis and Selective Abortion,” to Adrienne Asch’s (2000) “Why
I Haven’t Changed My Mind about Prenatal Diagnosis,” Mary Ann
Baily’s (2000) “Why I Had Amniocentesis,” and Eva Feder Kittay and
her son Leo Kittay’s (2000) conversation about the effect her signifi-
cantly disabled daughter has on family life and self.8
One of the most provocative examples of situated theory is the recent
cover article in the New York Times Magazine by disabled civil rights
lawyer and activist Harriet McBryde Johnson (2003), whose stunning and
dignified portrait on the cover is overlaid with the rhetorical question,
“Should I Have Been Killed at Birth? The Case for My Life.” In this
persuasive piece, Johnson recounts her engagements with the controversial
Princeton ethicist Peter Singer, who, intransigently reasoning from prag-
matist philosophy, advocates euthanizing disabled newborns. Although
Johnson’s arguments have been made by such disabled scholars and ac-
tivists as Asch, Saxton, and the organization Not Dead Yet, her use of
personal narrative to wield sitpoint perspective impels the reader to con-
clude that Singer’s chilling logic is indeed a eugenic form of genocide.
Situated scholarship
Much feminist disability theory takes the form of discipline-specific studies
and special issues on disability in professional journals. Whether the au-
thors identify as disabled or nondisabled, they generally situate the critic
in relation to the subject of study. This method of locating the perspective
from which the analysis emanates serves to humanize disabled subjects
and to demetaphorize and depathologize disability.
Feminist anthropologist Rayna Rapp addresses the pressing disability
question of selective abortion in her ethnographic study, Testing Women,
Testing the Fetus: The Social Impact of Amniocentesis in America (1999).
Like Asch and Saxton, Rapp extrapolates the complexities and contradic-
tions between the feminist claim to reproductive freedom and disability
rights. Rapp’s interviews with women who had prenatal testing and her
own situated critical perspective as a woman who aborted a disabled fetus
8
For more on selective abortion for disability, see Hubbard 1990 and Saxton 1998.

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produce a nuanced account of how the discourses, practices, and as-

sumptions of biomedicine shape the choices women make regarding abor-
tion and disability.9
As Rapp’s study suggests, the academic genre of feminist ethnography
can illuminate the lived experience of disability. Geyla Frank’s Venus on
Wheels: Two Decades of Dialogue on Disability, Biography, and Being Fe-
male (2000) is a life study of Diane DeVries, a woman with quadruple
congenital limb reduction.10 Frank negotiates the risky terrain of describ-
ing DeVries’s life and subjectivity as a disabled woman without appro-
priating her or misrepresenting her experience. Scrupulously unpatron-
izing, Frank renders DeVries as neither victim, freak, sentimental poster
child, nor supercrip; rather, she is sexual, feisty, capable, vulnerable, fem-
inine, often difficult or manipulative, and always dignified.
Several special issues of influential academic journals capture current
work in feminist disability scholarship. Hypatia: A Journal of Feminist
Philosophy published two issues on feminist disability studies under the
senior editorship of Eva Feder Kittay, Anita Silvers, and Susan Wendell
(2001, 2002), the three leading feminist disability philosophers. In fall
2002, a National Women’s Studies Association Journal special issue edited
by Kim Hall on feminist disability studies appeared; GLQ: A Journal of
Lesbian and Gay Studies, edited by Robert McRuer and Abby L. Wilkerson
(2003), followed with a special issue defining queer disability studies.
Packed with interdisciplinary and multidisciplinary essays, these special
issues collectively lay out an intricate and fresh matrix of disability theory
that will speak to scholars and teachers across feminist disciplines. The
Hypatia volumes enlist the methods of philosophical inquiry to probe
such disability issues as the ethic of care, the healthy/unhealthy dichotomy,
trauma, cognitive ableism, developmental disability, genetic counseling,
disability in Indian feminism, and disability in public education. The
NWSA Journal issue gathers interdisciplinary analyses and represents the
most explicitly feminist work emerging, ranging from feminist theoretical
concerns such as performance, visibility, madness, embodiment, and fat-
ness to sexual agency. The GLQ issue critically addresses the intersections
of what Carrie Sandahl (2003) calls “queer and crip identities,” thus
9
For other not explicitly feminist examinations of prenatal and genetic testing, see Roth-
man 1993, 1998.
10
I have struggled with how to describe DeVries’s (and my own) form of embodiment.
Medical terms such as limb deficiency and amputation are normative and suggest a lack that
those of us born with unusual bodies do not feel. To be born with an atypical body does
not translate into a sense of not being whole.

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focusing on issues such as HIV/AIDS, visual culture and the politics of

appearance, both crip and queer coming out, and what Robert McRuer
has called “compulsory ablebodiedness” (2002, 88).
The collective reimaginings I have highlighted here—whether the genre
is life-writing, personal essay, or situated scholarship—not only critically
challenge oppression and reductive assumptions about disabled people
and their lives but provide us all with new and complex understandings
of disability. All of this work refuses the narratives of pathology, senti-
mentality, catastrophe, overcoming, and abjection that work to circum-
scribe our lives, limit our imaginations, and crush our spirits. By honoring
disability perspectives, such reimagining does feminist cultural work that
has potentially wide-ranging consequences in the larger world.
Rethinkings
Constructivism
Perhaps the key critical concept used to analyze disability has been social
constructivism. The counterintuitive, epiphanic notion that gender is a
social construction still holds tremendous power to liberate for newcomers
to gender studies, as those of us who teach undergraduates so often wit-
ness. Such a concept is even more provocative when applied to disabililty,
which is still generally understood as a natural biological form of inferiority
rather than a culturally fabricated, binary, politicized identity category.
The feminist disability studies I have discussed so far tacitly views disability
as a social construction but draws primary critical force from perspectivism.
However, a body of writing—largely from the social sciences, where con-
structivism is most explicitly articulated—elaborates disability as a social
construction, often using gender as a touchstone to mount such an ar-
gument. This scholarship collectively focuses on the social context that
constructs disabled subjects—in particular, disabled women.
Simi Linton’s Claiming Disability: Knowledge and Identity (1998)
makes the case for expanding the social science–dominated disability stud-
ies into a more capacious cultural critique by developing humanities-based
analyses. As the title suggests, Claiming Disability persuasively and elo-
quently argues for a wide-ranging and multidisciplinary disability studies
firmly rooted in liberatory identity politics, informed by the consciousness
of the disability rights movement, and anchored in the perspectives of
disability communities. Linton invites disability studies to construct a cul-
tural narrative that is “an account of a world negotiated from the vantage
point of the atypical” (5). Linton’s groundbreaking theoretical treatise

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defines a new disability studies and shapes the sociopolitical scholarship

and teaching that follow it.
The foundational collection of critical essays that specifically addresses
disabled women is Women with Disabilities: Essays in Psychology, Culture,
and Politics (1988) by Michelle Fine and Adrienne Asch. This volume
“discovers” disabled women by contextualizing the facts of their lives
within social constructivist theory. Fine’s introduction, “Beyond Pedes-
tals” (1988), remains one of the definitive analyses of how the gender
and disability systems converge. The chapters cover multiple disciplinary
approaches, including psychology, ethnography, public policy, oral histo-
ry, and social science, addressing issues such as dependence, subjectivity,
medicalization, embodiment, sexuality, and relationships. Every essay uses
a constructivist framework and is grounded in a political consciousness
about disabled women’s lives.
Almost all of the work that I consider feminist disability studies con-
tinues the project that Fine and Asch’s Women with Disabilities initiated.
The collection Double Jeopardy: Addressing Gender Equity in Special Ed-
ucation (2001), edited by Harilyn Rousso and Michael L. Wehmeyer, is
a successor to Fine and Asch’s volume. Centering its critique on the
politically fraught notion and field of “special” education, Double Jeopardy
reflects the transformation in feminist theory from women’s studies to
gender studies. The essays in this book—especially the five crucial chapters
authored or coauthored by Rousso, a national expert on disabled girls—
focus on educational equity for disabled women. The volume addresses
as well the functioning of the whole gender system, recognizing how
gender affects disabled boys and how the race and class systems intersect
with gender and disability. Rousso is particularly eloquent on the impor-
tance of role modeling and mentoring in her insistent critique of the
segregationist assumptions that underpin special education. The logic of
the feminist difference/equality debate informs this interrogation of gen-
der equity, posing questions about sexual harassment, gender bias, and
restrictive stereotyping.
Several cornerstone monographs authored by disabled women advance
a constructivist reading of disability. These recent studies mobilize feminist
and critical theory to replace the pervasive medical model of disability
with a social model. One is Jenny Morris’s 1991 Pride against Prejudice:
A Personal Politics of Disability. Always contextualizing her critique
through her own experience as a disabled woman, Morris covers much
ground: the devaluation of disabled lives, the conflict in feminism between
disability and abortion rights, representations of disability, the politics of
community and residential care, and the politicization of disability com-

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munities. She draws on history to forge a social definition of disability

that intertwines the development of feminism and the disability rights
movement. Particularly well formulated is her argument—often resisted
by skeptics as overstatement—that selective abortion and euthanasia are
forms of genocide not unlike the racial hygiene program of the Nazis.
Throughout, Morris draws on and challenges feminist theory and politics
to consider disabled women in its analyses.
Susan Wendell’s 1996 study, The Rejected Body: Feminist Philosophical
Reflections on Disability, uses the careful reasoning of philosophical dis-
course to lay out a constructivist logic of disability. She addresses partic-
ularly well the definition of disability and the question of who counts as
disabled. Feminist theoretical concepts such as standpoint epistemology,
difference, othering, caring, body theory, and the politics of language
provide Wendell with a set of concepts familiar to feminists, which she
productively applies to a disability analysis. The Rejected Body targets
adeptly the ideological concept of normalcy crucial to the construction
of disabled identity.11 Normal is the category obscured by its own privi-
lege—its normalcy—that casts people with disabilities into pathologized
others. Normal grounds the oppressive system of representation that
makes cripples and freaks from the raw material of human variation.
Marta Russell’s 1998 book, Beyond Ramps: Disability at the End of the
Social Contract, is a call to activism that presents America’s betrayal of
disabled people as emblematic of how the politics and policies of late
capitalism have ravaged the democratic project. While carefully explicating
the particular sociopolitical issues that involve disability, Russell argues
persuasively that the failure—indeed the refusal—of our government to
honor the American social contract with regard to disabled people indi-
cates the failure of the democratic ideal on which this country was
founded. Her economic and political critique of an ethos of economic
efficiency used to strip disabled people of access to resources and privilege
echoes feminist explications of gender inequities embedded in American
liberal ideologies.
The late Mairian Corker’s 1998 treatise, Deaf and Disabled, or Deafness
Disabled? Towards a Human Rights Perspective, wields poststructuralist
theory to examine the relation between the Deaf and the disabled com-
munities. She calls for a fuller inclusion of Deaf people in the disability
community and of Deafness into disability theory. Her book is self-con-
sciously thick with critical terms such as essentialism, phonocentrism, her-
meneutics, power, and liminality—all of which are clearly defined in the
11
For critiques of normalcy, see Davis 1995 and Thomson 1997.

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text and in a useful glossary. Readers unfamiliar with disability can thus
adeptly mobilize critical theory concepts to deconstruct such disability/
Deaf issues as the normalization of cochlear implants, the problematics
of “helping,” and the relation between individual and communal identity.
Carol Thomas’s 1999 sociological study, Female Forms: Experiencing
and Understanding Disability, most fully deals with the construction of
a gendered disabled subject. Covering similar theoretical terrain and build-
ing on the previous work of Morris, Wendell, and the well-developed
disability theory of British sociologists, Thomas advances a constructivist
critique that centers on disabled women. Not only does she put forward
the concept of disability standpoint theory, she practices it by including
generously throughout her account the voices of actual disabled women
describing their experiences of disability. Thus the women she quotes
become not just data or case studies but active theory builders, exactly in
the way that feminist standpoint theory suggests.
While these five books traverse similar theoretical territory, each ap-
proaches the sociopolitical construction of disability with a distinctive
emphasis or from a particular disciplinary perspective, and each can stand
alone as a full explanation and critique of the disability system. Each is
useful for teaching and provides a complex yet accessible introduction to
the often unrecognized notion that disability is an identity category con-
structed similarly to race and gender.
The politics of care

An important feminist disability conversation bristles about the dynamics
of caregiving and care getting and the power relations between the givers
and receivers of care. Two books on the ethic of care emerge from the
perspective of the maternal caretakers of daughters with disabilities. First
is Barbara Hillyer’s much too capaciously titled 1993 book, Feminism and
Disability, which is actually a very polemical, personalized account of the
relational and institutional dynamics between disabled women and their
female—often maternal—caretakers. Hillyer deals with such topics as
mother blaming, grief, denial and normalization, caregiving and women,
and codependence. Most forcefully, though, she enlarges the notion of
the disability community by insisting on the authority of “nondisabled
people who nevertheless live with disability” (107). She rejects the positive
identity politics that disability rights activists often employ to counter the
traditional perception of all disabled people as helpless dependents. She
argues that such a rhetoric of enablement harms significantly disabled
persons like Hillyer’s daughter by elevating her own and others’ expec-
tations and by minimizing her limitations.

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Eva Feder Kittay offers a counternarrative to Hillyer’s critical polemic

by interrogating the ideology of independence that renders their disabled
daughters problematic burdens and devalues their lives. In Love’s Labor:
Essays on Women, Equality, and Dependency (1999), Kittay moves from
the personal—her experience of mothering a disabled daughter—to the
philosophical and political, framing a persuasive “dependency critique of
equality” (4). She asserts that the ideal of equality under liberalism re-
pudiates the fact of human dependency, the need for mutual care, and
the asymmetries of care relations. By arguing for care not from an essen-
tialist, cultural feminist perspective but as a critique of liberalism’s mas-
culinist excesses, Kittay asserts that disability demands that human inter-
dependence and the universal need for assistance be figured into our
dialogues about rights and subjectivity.12
The philosopher Anita Silvers offers a sharp and convincing critique of
the feminist politics of care from the perspective of the disabled subject.
Her germinal 1995 essay, “Reconciling Equality to Difference: Caring
(f)or Justice for People with Disabilities,’’ which appeared in Hypatia,
argues that being the object of care forestalls the equality that a liberal
democracy depends on and undermines the claim to justice as equality
that supports the civil rights argument intended to counter discrimination.
The politics of appearance

The social system of stigmatizing disability goes well beyond those who
might be called the classically disabled, such as the blind, deaf, or so-
called retarded and crippled people who are the stock figures of literature,
art, and religious inspiration. Although variations and limitations in func-
tioning are often the core experience of disability, appearance tends to be
the most socially excluding aspect of disability. Bodies whose looks or
comportment depart from social expectations—ones categorized as vi-
sually abnormal—are targets for profound discrimination. Bodily forms
deemed to be ugly, deformed, fat, grotesque, ambiguous, disproportion-
ate, or marked by scarring or so-called birthmarks constitute what can be
called appearance impairments that qualify as severe social disabilities.
Perhaps the most virulent form of bodily disciplining in the modern world
is the surgical normalization of bodies that deviate from configurations
dictated by the dominant order. Although this ostensibly corrective sur-
gery often permits otherwise unsustainable lives—as in the case of cleft
12
For an excellent examination of dependency, see Fineman 1995. Martha Albertson
Fineman distinguishes between “derivative dependency” (161–63) and the “inevitable de-
pendency” that every person encounters at some point in a life.

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palates or open heart valves—such procedures frequently mutilate in the

name of normality. The vast majority of surgical standardizing takes the
form of aesthetic procedures such as “Westernizing” Asian eyes, extending
the limbs of people with dwarfism, removing so-called blemishes, aug-
menting breasts, stapling stomachs, and lifting faces. Whether cast as re-
constructive or cosmetic, such surgical reshaping of ambiguously or atyp-
ically embodied persons is often in fact a sacrifice to modernity’s fierce
drive to limit human variation and to its intolerance toward contradictory
bodies.13
Nowhere is this will to normality more evident than in the medical
protocols directed at three regularly occurring, if infrequent, forms of
human variation: intersexed newborns, conjoined twins, and people whose
bodies are deemed deformed. The ambiguous genitalia of intersexed peo-
ple disturbs modernity’s conviction that gender is naturally binary. Con-
joined twins upset the notion of discreet and autonomous individuals.
The supposedly deformed unhinge the belief that the world is predictable
and calculable. These embodiments are congenital variations that are dis-
abling not so much in that they present functional limitations—which all
embodiment does to one degree or another—but rather in that they are
corporeal configurations that violate the dominant culture’s standards.
Of these culturally transgressive, yet biologically natural, embodiments,
intersexuality has by far garnered the most study within feminist schol-
arship, due in part to intersexuality’s contradiction of the gender system.
While feminist scholars have taken up intersexuality’s challenge to a nat-
uralized gender division, the self-advocacy movement among intersexed
people that challenges the silence and mutilation directed against them is
less recognized.14 The logic of this movement for acceptance, dignity, and
humane treatment emerging from the radicalized intersex community in-
forms the scholarship on intersexuality that I am claiming here as a part
of feminist disability studies. The activist argument against surgical gender
assignment and the history of what might be called the intersex rights
movement are most powerfully disclosed in the essay “‘Cultural Practice’
or ‘Reconstructive Surgery’: U.S. Genital Cutting, the Intersex Move-
ment, and Medical Double Standards,” written by Cheryl Chase (2002),
an intersexed person and founder of the Intersex Society of North Amer-
ica. Practicing feminist standpoint theory to make her case, Chase reveals
13
For an incisive analysis of aesthetic surgery—the term that encompasses cosmetic and
so-called reconstructive surgery—see Gilman 1998, 1999.
14
For critiques of the normalization of ambiguous genitalia, see Kessler 1990 and Dreger
1998, 1999.

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the psychological and physical violence to which intersexuals are subjected

and the salvific potential of an activist identity politics movement to trans-
form ideology, practices, and consciousness. The placement of Chase’s
essay in an anthology titled Genital Cutting and Transnational Sisterhood:
Disputing U.S. Polemics (James and Robertson 2002) is strategic to her
sharp criticism that feminism has protested third-world female genital
cutting while ignoring precisely the same kind of mutilation routinely
done to intersexed infants by U.S. medicine.
In Sexing the Body: Gender Politics and the Construction of Sexuality,
biologist Anne Fausto-Sterling (2000) expands her influential early essay
on intersexuality, “The Five Sexes: Why Female and Male Are Not
Enough” (1993), into a sustained feminist analysis of the ways that the
interpretive environment literally shapes the body. While many feminist
theorists—notably Judith Butler—have made a strong but often abstract
argument for strict constructivism that often neutralizes bodies, Fausto-
Sterling addresses how this actually operates on the materiality of living
bodies. Intersexuality is the case study she uses to explore the intricate
and complex relation between body and world.
In One of Us: Conjoined Twins and the Future of Normal, Alice Domurat
Dreger (2004) uses the case of conjoined twins to trouble the notion of
normal—perhaps the most unchallenged, seemingly commonsensical,
foundational idea of Western modernity. She exposes the cultural logic
that understands conjoinment as a personal tragedy to be undone by
medical intervention at any cost and the view of conjoined people as
suffering intensely because they are not singletons. Dreger is exemplary
at crafting semantics and syntax that call into question the dominant
perspective and accord her subjects dignity and full humanity. In discussing
intersexuality, she says that babies “become” boys or girls rather than
simply “are” boys or girls (1998). Similarly, she uses terms like unusual
anatomies, socially challenging bodies, and anatomies that don’t fit the social
rules instead of deformed, abnormal, or defective (1998, 1999, 2004). This
is not euphemism; rather, it is a rhetorical refusal to participate in the
oppressive attitudes and practices that she is challenging. Such linguistic
choices work to reframe the dominant understanding of human variation
and keep her argument from falling into the typical appeal to a normative
“we” who are urged to look with sympathy or disgust on disabled people
as unfortunate victims or droll curiosities. Dreger scrupulously avoids
inviting “us” to learn from “them.” Rather, she challenges the exclu-
sionary boundaries culture sets up around a normative version of “us.”
Perhaps the most common bodily form vehemently imagined as failed
or incorrect is the fat body. As Susie Orbach famously said, fat is a feminist

132.248.9.41 on Tue, 28 Apr 2020 17:15:01 UTC
issue (1978). But it is also a disability issue. Fat is sometimes a physical

impairment, but it is always an appearance impairment. The fat body is
disabled because it is discriminated against in two ways: first, fat bodies
are subordinated by a built environment that excludes them; second, fat
bodies are seen as unfortunate and contemptible.
Fat studies is an emerging field that draws primarily from feminist and
disability theory. The abundant scholarship on the slenderness imperative
critiques the ways femininity disciplines and pathologizes the female
body.15 The newest scholarship on fatness similarly challenges oppressive
body size norms, but it adds a feminist element that slenderness analyses
cannot: that is, fat pride as a kind of trangressive positive identity politics.16
New scholarly work in fat studies uses disability theory to examine the
stigmatizing of female fat that replicates the prejudicial dominant view of
the conditions we think of as disabilities. For example, Jana Evans Braziel
and Kathleen LeBesco’s edited collection, Bodies Out of Bounds: Fatness
and Transgression (2001), captures a feminist disability studies perspective
on fatness by infusing fat pride and advocacy into scholarly critiques of
body size demands. The volume historicizes modernity’s developing prej-
udice against fat particularly well, even attempting to imagine a culture
in which fat is celebrated. LeBesco’s book, Revolting Bodies? The Struggle
to Redefine Fat Identity (2004), redefines fat identities by challenging
conventional understandings of nature, health, and beauty, asserting that
the bearer of a fat body is marked as a failed citizen. Fat studies frames
fatness as a form of disability, not simply as an aesthetic state or a medical
condition but as a political issue.
From exclusion to inclusion

Feminism benefits from considering how disability operates as an inter-
secting vector of identity along with gender, race, sexuality, and class.
Feminist disability studies helps us understand in more complex ways that
the particularities of human variation are imbued with social meanings
and that those meanings comprise narratives that justify discriminatory
practices that shape the lives of both disabled and nondisabled women.
Most profoundly, feminist disability studies can make us all reimagine more
deeply what it means to have a dynamic and distinct body that witnesses
its own perpetual interaction with the social and material environment.
15
The prolific feminist work on anorexia and eating issues, a disability topic treated by
so many feminist analyses, is not possible for me to survey here. The most incisive critique
of body image and eating issues is Bordo 1993.
16
On fat pride, see Wann 1998.

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S I G N S Winter 2005 ❙ 1583
A feminist disability studies moves from exclusion to inclusion. It would

have us accommodate disabled bodies rather than eliminate them.
Department of Women’s Studies

Emory University
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