5

line between “normal” and “abnormal” has broad

consequences for everyone. Accordingly, we hope that

the volume will help crystallize debates and problems

internal to disability studies, as well as establish their

importance to many other areas of inquiry across the

disciplines. And we hope that, as with Bauman’s proj-

ect, the structure we have created together will inspire

others not only to build new structures but also to think

more creatively and more inclusively about the people

who will interact with them.

Editors’ note: In the time since we first drafted this

introduction, the field of disability studies suffered two

great losses with the deaths of Adrienne Asch in Novem-

ber 2013 and Tobin Siebers in January 2015. Their work

left its mark on so many of the ideas expressed in this

volume. If we imagine disability studies as a collabora-

tive design, its structure was immeasurably enhanced

by the wisdom, courage, and insight of Adrienne and

Tobin. We hope that our future work in the field will be

a tribute to their legacies, and we dedicate this volume

to their memory.

1DisabilityRachel Adams, Benjamin Reiss, and David Serlin

In the 2009 documentar y film Monica and David,

Monica, a woman with Down syndrome, is asked to

define the word “handicap.” She responds, “When

someone is in a wheelchair,” adding that the term may

also apply to people who cannot hear or walk. “It’s a

sickness,” she concludes. When presented with the

same question, her husband, David (who also has Down

syndrome), says he does not have a handicap. Asked

if he has Down syndrome, he answers, “Sometimes.”

In this brief exchange, Monica and David exemplify

the challenges of defining disability as a coherent

condition or category of identity. Yet David’s assertion

that “sometimes” he has Down syndrome suggests that

he understands a central tenet of disability studies: that

disability is produced as much by environmental and

social factors as it is by bodily conditions. While Down

syndrome may prevent David from driving a car or

managing his own finances, for example, his genetic

condition is not a defining feature of his home and

family life.

These insights by Monica and David remind us that

the meanings we attribute to disability are shifting, elu-

sive, and sometimes contradictory. Disability encom-

passes a broad range of bodily, cognitive, and sensory

differences and capacities. It is more fluid than most

other forms of identity in that it can potentially hap-

pen to anyone at any time, giving rise to the insiders’

acronym for the nondisabled, TAB (for temporarily able-

bodied). As David suggests, disability can be situational;

Copyright 2015. NYU Press.

All rights reserved. May not be reproduced in any form without permission from the publisher, except fair uses permitted under U.S. or applicable copyright law.

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d i s a b i l i t y r a c h e l a d a m s , b e n j a m i n r e i s s , a n d d a v i d s e r l i n6

it can also wax and wane within any particular body.

Disability brings together people who may not agree on

a common definition or on how the category applies

to themselves and others. Yet those same definitional

challenges are precisely what make disability such a rich

concept for scholars, activists, and artists. Because “dis-

ability” is this volume’s organizing term, it is important

that we explore how it became attached to such diverse

experiences and meanings, and produced such a wide

range of social, political, and personal consequences.

The word “disability” has been part of the English

language since at least the sixteenth century. Accord-

ing to the Oxford English Dictionary, the current sense

of “a physical or mental condition that limits a per-

son’s movements, senses, or activities [or] the fact or

state of having such a condition” was first used in

1547. But the term also covered a broad range of “in-

abilities” or “incapacities” that included inability to

pay a debt or to worship God with a full heart, while

some conditions currently treated as disabilities were

not regarded as such. Some—like autism or chronic

fatigue syndrome—had not been discovered (or in-

vented, depending on one’s perspective); others, like

chronic pain or various disfigurements, were simply

considered inevitable facts of life.

For much of its historical r un, “disability” has

brushed up against words like “infirmity” and “afflic-

tion,” both of which held connotations usually ascribed

to disability today, as well as phenomena like poverty,

ugliness, weakness, sickness, or simply subjection to an

unfortunate experience (Baynton 2011). Disability also

shared ground with the early modern term “monstros-

ity” and the classical-era term “deformity”—the former

having supernatural overtones and the latter represent-

ing a falling away from godliness into a particular kind

of moral and physical ugliness (see Helen Deutsch’s

entry on “Deformity” in this volume). By contrast, the

word “cripple,” which derives from the idea of one who

creeps, represented an attempt to characterize various

physical impairments that impeded mobility. Similarly,

“invalid” was an early medical shading of a broad range

of infirmities resulting from injury or illness.

It was in the nineteenth century that disability be-

came firmly linked, through the discourses of statistics,

medicine, and law, to words such as “deviance,” “abnor-

mality,” and “disorder.” Lennard Davis (1995) argues

that during this time the modern conception of disabil-

ity emerged as a by-product of the concept of normalcy.

Earlier human bodies were measured against idealized

and often spiritual standards of perfection and ability

that no earthly individual could match. With the devel-

opment of statistical science and the bell curve, human

ability came to be understood as a continuum, with dis-

ability and disabled people occupying the extreme and

inferior end of the spectrum.

During the late nineteenth and early twentieth

centuries, protecting the normal from the abnormal

became a broad medical and social imperative under-

taken in the name of progress. Vocabulary terms as-

sociated with disability reflect these shifts. Just as the

eugenics movement attempted to rid the world of many

disabilities through sterilization and segregation, dis-

ability terminology emphasized backwardness, atavism,

and interruption: people with disabilities were said to

be “slow,” “retarded,” or in a state of “arrested develop-

ment.” Hereditary explanations stressed the degenerate

threat disability posed to the white race. People with

intellectual disabilities (classified under the broad term

“feebleminded”), in particular, were said both to exem-

plify the debilitating effects of modernity and to repre-

sent instances of exceptional regression (Valente 2013).

At a time when the industrialized world prized speed

and efficiency, the temporal lag associated with disabil-

ity amounted to being “handicapped in the race for life.”

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d i s a b i l i t y r a c h e l a d a m s , b e n j a m i n r e i s s , a n d d a v i d s e r l i n 7

Many of these terms remain as residual signifiers for

disability in contemporary society. As Douglas Baynton

argues, by the early twentieth century, one had only to

say “handicapped” to indicate disability, while in France

the primary translation for disabled remains handicappé

(Baynton 2011; Stiker 1999). On a global scale, however,

“disability” has now become the preferred term. It be-

gan its ascent in the United States during the Civil War,

when “disability” measured one’s capacity to serve in

the armed forces or one’s right to compensation from

injuries incurred in military service. As the welfare state

developed in the twentieth century, the term came to

incorporate chronic illnesses and conditions of impair-

ment that impeded one’s ability to work (Linker 2013,

503–505). But paradoxically, as “disability” has muscled

out older competitors, it has also grown more ambigu-

ous and unstable in its meanings. This is because as the

term has expanded to include new categories of expe-

rience and perception as well as phenomena once la-

beled by other terms, those meanings have simultane-

ously been challenged by scholars and activists (Kudlick

2003).

Although now someone with a visual impairment

may recognize “disability” as the structure that links

her to a wheelchair user or a person labeled as autistic,

it thickens our sense of such alliances to study how

people in earlier times understood—or, alternately, did

not understand—their connections to each other. The

historical record provides glimmers of cross-disability

awareness but also of obstacles to finding common

ground or shared values. A 1641 law in colonial Massa-

chusetts, for instance, provided exemptions from pub-

lic service for settlers who could claim “greatness of age,

defect in mind, failing of senses, or impotency of Limbs”

(Nielsen 2012, 21). Such unfitness for work ultimately

led to organized systems of charity—and, by the nine-

teenth century, institutional quarantining and attempts

at medical “correction” for people with a wide range of

impairments.

Paradoxically, such quarantining sometimes pro-

moted social cohesiveness within and even across differ-

ent types of institutions. In nineteenth-century asylums

and other specialized “total institutions,” blind and deaf

people, people defined as mentally ill or deficient, and

other disabled people often came into contact with

large numbers of other members of their group for

the first time. Thomas Gallaudet, the cofounder of the

American Asylum for the Deaf, characterized the typi-

cal student at his school as “among his countrymen, for

[they] use his native language.” Occasionally, this fel-

low feeling extended across categories of impairment.

A patient-run literary journal published in a public

nineteenth-century asylum for the insane, for example,

records a visit by students from a school for the blind;

another article in the journal speculates on the in-

creased susceptibility of blind and deaf people to men-

tal illness, showing an appreciation for the shared social

vulnerability of all of these groups. Such institutional

dispatches suggest a flickering awareness of institution-

alization as the grounds for identifying a common set

of experiences. Such connections were the grounds

for political activism. Early American deaf-rights activ-

ist John Jacobus Flournoy, for instance, was one of the

first to use the word “disability” in relation to deafness

among a range of physical and mental differences when

he wrote in 1855: “The old cry about the incapacity of

men’s minds from physical disabilities, I think it were

time, now in this intelligent age, to explode!” (Krentz

2007, 155).

As with segregation, colonialism, and apartheid,

shared experiences of social separation and political

disenfranchisement ultimately galvanized many people

with disabilities and their supporters toward a common

purpose. However, before the 1960s, politicized protests

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d i s a b i l i t y r a c h e l a d a m s , b e n j a m i n r e i s s , a n d d a v i d s e r l i n8

against the oppressive features of institutionalization

and discrimination were scattered and generally did not

speak for broad categories of disability. For instance, in

the United States during the 1930s, when the League of

the Physically Handicapped decried the Works Progress

Administration’s policy of failing to employ people with

physical disabilities, it did not include people with men-

tal or developmental disabilities in its list of those who

had suffered discrimination (Nielsen 2012, 132). And

when the league approached leaders of the Deaf com-

munity to make common cause, they were rebuffed on

the grounds that the Deaf were not disabled or unem-

ployable (Burch 2002, 126). (Today, the Deaf commu-

nity tends to regard deafness as a culture; whether it is

also a “disability” is a contentious point.)

In this volume, the entry by Denise Nepveux on “Ac-

tivism” tells how isolated protest movements cohered

into the broad disability rights movement, which, by

the late 1960s, was agitating for inclusion and access

on many fronts, and which strengthened the sense of

disability as a positive identity category rather than

a stigmatized designation of inferiority or lack. Po-

litical organizing within the incipient disability rights

movements of the 1960s and 1970s attempted to shift

“disability” from an exclusively medical concern to a

broadly social one, an effort that eventually won impor-

tant battles. Major legislation and policy initiatives in

the United States and worldwide reflect this shift, with

profound implications for governments, businesses,

and citizens—disabled and nondisabled alike. For exam-

ple, the first two definitional prongs of the Americans

with Disabilities Act (ADA; 1990; amended 2008) locate

the meanings of disability within the body: “A physical

or mental impairment that substantially limits one or

more major life activities of such individual; a record

of such an impairment.” These definitions are surpris-

ingly similar to the long-standing dictionary definition

of “a physical or mental condition that limits a person’s

movements, senses, or activities” or “the fact or state

of having such a condition.” However, the third defini-

tional prong of the ADA, which adds “being regarded

as having such an impairment,” put perceptions and

social attitudes squarely in focus (Emens 2013). The UN

Convention on the Rights of Persons with Disabilities

(2008) goes even further in defining disability’s social

dimensions. Disability, according to the convention,

“results from the interaction between persons with im-

pairments and attitudinal and environmental barriers

that hinders their full and effective participation in so-

ciety on an equal basis with others.” Perhaps most ex-

pansively, the vision of accessibility propounded by Ron

Mace and the universal design movement since the late

1980s was born out of a belief that particular physical

or sensory differences only become disabling when the

environment creates barriers to access. These recent de-

velopments all emphasize meanings of “disability” that

are external to the body, encompassing systems of social

organization, institutional practices, and environmen-

tal structures. Disability studies scholars refer to this

approach as the “social model,” which challenges the

medical understanding of disability as located exclu-

sively in an individual body, requiring treatment, cor-

rection, or cure (Shakespeare 2006b).

Although the social model predominates, in much

recent scholarship, disability refers to a subjective state,

the condition not only of identifying as disabled but

also of perceiving the world through a particular kind

of lens. As Sharon Snyder and David Mitchell (2006)

note, narratives of disability history that focus on legis-

lative triumphs, social inclusion, and the breakdown of

stigma risk losing sight of the distinct, individual, and

subjective experiences that make up disability’s his-

tory. Disability subjectivity, they argue, does not come

either from bodily impairment or from the socially

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d i s a b i l i t y r a c h e l a d a m s , b e n j a m i n r e i s s , a n d d a v i d s e r l i n 9

constructed world outside; instead, they argue for a

“cultural model” of disability that explores the disabled

body’s interface with the environments in which the

body is situated. While it may be true that to lose one’s

leg, or to be visually impaired, or to have a chronic ill-

ness in the twenty-first-century United States is incom-

mensurate with what those impairments or conditions

meant in eighteenth-century Europe or ancient Egypt,

disability itself always begins and ends with the subjec-

tive impressions of the individual who experiences the

world through her body. Despite the lingering popular

sense that disability represents deficiency or defect of

body or mind, the cultural (or, alternately, biocultural)

model of disability as a relationship between body and

society is gaining increasing legitimacy in law, policy,

and the social environment worldwide.

Part of the transformation of “disability” from stigma

and object of medical correction to source of knowl-

edge reflects this new attention to inwardness. Disabil-

ity becomes a mode of situating one’s understanding

of self rather than a marker of isolation, what the late

disability historian Paul Longmore (2003, 246) called

the “social death” sometimes experienced by people

with disabilities. Whereas too often the experience of

disability entered the historical record only through

the words of those who tried to cure, tame, correct, or

end it, disability studies scholarship is now focused

on building—as well as excavating from the past—a

rich and self-conscious record of the perspectives of

disabled people themselves. Memoirs, films, journals,

performance spaces, and online social networks pro-

moting what is sometimes defiantly referred to as “crip”

culture are all regular features of this new landscape of

disability; meanwhile, academic conferences, journals,

and degree programs have made disability studies a

prominent force on many campuses. Such new devel-

opments parallel feminist epistemologies—including

what used to be called “women’s way of knowing”—as

well as postcolonial and critical race theorists’ critiques

of hybrid identities and psychic displacements, and

queer theory’s blending of social analysis and subjective

expression. Each of these political-cultural-academic

movements began with a first wave of identifying and

resisting oppressive structures, which was followed by

attempts to recover a cultural heritage as a backdrop for

individual and collective expression in the present.

Intersectional modes of analysis point to the com-

mon interests, struggles, and pleasures these move-

ments can promote. Deaf artist and activist Joseph

Grigely (2005) works in this vein when he speaks of a

“proactive” disability studies: one that is focused not

just on attaining rights and accommodations for people

with disabilities but also on developing dynamic, inter-

active, and collaborative projects that challenge the

tyranny of “normal” in all areas of social and political

life. To this end, the subjective experiences of people on

the wrong side of “normal” can be used, in the words

of the Dutch educational philosopher Pieter Verstraete,

“to expose the self to the other,” rather than merely to

“reduce the other to the self” (2007, 63). Vivid examples

of this work of mutual “beholding” rather than objec-

tifying “staring” can be found in Rosemarie Garland-

Thomson’s (2009) discussion of disabled artists who

turn the unwanted attention of others into the subject

of their own work.

While some scholars and activists claim or assume

that disability is a category that cuts across cultures,

others have noted that disability studies rests on as-

sumptions derived from and specific to the Western

world, and that its histories and archives continue to

have a strongly Euro-American orientation. Disability

scholarship and activism in Europe and North America

have long sought independence for people with dis-

abilities, a demand that arose in reaction against being

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d i s a b i l i t y r a c h e l a d a m s , b e n j a m i n r e i s s , a n d d a v i d s e r l i n10

treated as passive, voiceless, and dependent. In the

1970s, the independent living movement was born in

Berkeley, California, and quickly took hold throughout

the United States and Europe, with the goal of achiev-

ing greater autonomy and inclusion by providing

people with disabilities with personal assistants and

adaptive technology. However, as Eva Kittay (1999) has

noted, largely overlooked in the quest for autonomy is

the fact that the independence of disabled consumers is

contingent on the labor of personal assistants who are

almost always immigrant women, sometimes with un-

claimed disabilities of their own. “Independence” and

“autonomy” are concepts that are deeply embedded in

the Western philosophical and political traditions of

liberalism and are not universally desirable goals in all

cultural contexts (Nussbaum 2006).

The global ambitions of the universal design move-

ment, which upholds the worthy goal of a barrier-free

environment, also sometimes founder on the realities

of global inequalities: this approach relies on architec-

tural innovations and the use of technologies that may

be too costly to be realistically implemented in many

areas of the developing world. Moreover, the technolo-

gies that enable people with disabilities in the Western

world are often manufactured by workers who cannot

afford to use them, and who may themselves be dis-

abled. For example, the smartphones and computer

tablets that give students with disabilities in the West

tools to learn alongside their nondisabled peers and

that supply increasingly ingenious apps to allow blind,

deaf, and mobility-impaired people to navigate their

environments are likely to have been assembled under

harsh and potentially disabling conditions in China.

Michael Davidson argues that a more global disability

studies must refine the concept of universal design to

account for variations in resources and cultural values.

In this way, disability studies can prompt us to consider

how “many aspects of modernity are founded upon un-

equal valuation of some bodies over others” (Davidson

2008, 171).

Some scholars have offered the concept of “debility”

as a supplement to disability, which they see as entan-

gled with Western ideas about individuality, autonomy,

and bodily integrity. The dictionary meaning of “debil-

ity” overlaps with “disability”: it is the “condition of

being weak or feeble,” in either physical or mental ca-

pacity. But a secondary meaning—“political, social, or

pecuniary weakness”—makes it useful for scholars at-

tuned to populations made vulnerable by political and

economic forces globally: For instance, Jasbir Puar uses

the term to signify an “aggregate” condition in which

some bodies worldwide are made to pay for “progress”

that others enjoy. “Debility,” she writes, “is profitable

for capitalism” (2012, 153). Like Puar, Julie Livingston

uses the term “debility” to supplement the concept of

disability and its attendant assumptions about a lib-

eral, rights-based understanding of personhood. In

Botswana, for instance, AIDS activists have sought the

equal participation of persons with disabilities in the

public sphere, but Livingston shows how the liberal

model of personhood at the heart of their activism is

undercut by Botswanan notions of moral sensibility,

which include both an ethos of communal care and

an intense aversion to certain types of bodily disfigure-

ment or unruliness. While Euro-American versions of

disability rights focus on “enabling persons to partici-

pate equally in rational-critical discourse in the public

sphere regardless of the vagaries of any individual’s

particular bodily state,” such goals collide with cultural

systems that shape the circulation of bodies, emotions,

and values differently (Livingston 2008, 289).

Obscuring these different constructions of disability

and debility, human rights activists and policy makers

around the world tend to idealize Western—and often

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d i s a b i l i t y r a c h e l a d a m s , b e n j a m i n r e i s s , a n d d a v i d s e r l i n 11

specifically American—attitudes and practices concern-

ing disability, while labeling those in the “developing”

world as “backward” (Kim 2011). Certainly, the United

States has done much to bring forward disability rights

as a concept to be emulated elsewhere, but the social

situation of people with disabilities is by no means uni-

formly secure. In the United States, health and physical

beauty are marketed as commodities more aggressively

than in any other culture. The rhetoric of the beauty,

fashion, diet, and fitness industries, illustrated by the

allure of cosmetic surgery, equates falling from these

ideals with moral failure. So, too, in times of economic

scarcity in the United States and other market-driven

societies, people with disabilities and their supporters

are often seen as a burden on public resources. Programs

for education, transportation, and public services for

people with disabilities are often the first to be cut by

budget-conscious politicians. A backlash against civil

rights accomplishments blames disability legislation

for, in effect, “crippling” the economy. And many who

claim accommodation or compensation under the law

are viewed with suspicion of malingering—especially

those whose disabilities are not immediately visible.

The mapping of the human genome has also had am-

bivalent consequences for disability. Research that

promises to cure or prevent disease and to bring new

understanding of human character and potential often

does little more than succeed in producing a new class

of people whose genes tell us that they may someday be-

come disabled by diseases like breast cancer, cystic fibro-

sis, or Huntington’s disease—thereby creating a perva-

sive anxiety about disability as a future risk. So, too, new

technologies for prenatal testing seek to eliminate some

types of genetic disability through the termination of

fetuses. Such tests further stigmatize genetic conditions

by making them seem like preventable mistakes. And in

the eyes of many disability rights advocates, they augur

a new era of eugenics, in which disability is eradicated

before it comes into the world.

Our understanding of disability is enhanced by

awareness of the term’s complex genealogy, as well as

by the enormously varied experiences of embodiment

across cultures and socioeconomic locations. If history

is any indication, the meanings of disability and the

words we use to describe its various manifestations will

no doubt undergo profound shifts as a category of iden-

tity; a social, legal, and medical designation; and an em-

bodied condition. As a way of perceiving the world, it

will help us to understand—and to influence—the way

that future takes shape.

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