EXCERPTED FROMIntroducing
Disability Studies
Ronald J. Berger

Copyright © 2013
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Contents

Prefaceix

11Disability in Society
Speaking About Disability 5
Defining Disability and the Subject Matter of Disability Studies
The Disability Rights Movement 15

2

Explaining Disability

25

Beyond the Medical Model 26
Disability Culture and Identity 30
The Political Economy of Disability 34
Insights from Feminist and Queer Theory
Disability and Symbolic Interaction 43

3

6

37

History and Law

51

Preliterate, Ancient, and Medieval Societies 51
The Uneven March of Progress 55
Rehabilitation and Reform 62
The Contribution of Franklin Delano Roosevelt 65
The Politics of the ADA 69
The Legal Aftermath of the ADA 72

4

The Family and Childhood
Parental First Encounters with Childhood Disability
Measuring Up to the Norm 89
The Child’s Perspective 93

vii

79
81

viii

Contents

Impact on Family Life 99
The Dilemmas of Special Education

5104

Adolescence and Adulthood
The Trials and Tribulations of Adolescence
The Transition to Adulthood 123
The World of Work 128
Sexual and Emotional Intimacy 132
Health Care and Personal Assistance 137

6

The Bodily Experience of Disability
Perceiving the World Without Sight or Sound
The Phenomenology of Sign Language 154
Navigating the Physical Environment with a
Mobility Impairment 156
Recovery from Spinal Cord Injury 159
Disability Sport and Athleticism
166

7

113
113

145
146

Representing Disability in Literature and Film

181

Lessons from Grimms’ Fairy Tales 182
Classic Literary Characters 183
The Emergence of the Horror Film Genre 188
Postwar Recovery Films
191
The Uneven Progress of Disability Filmmaking 193
Disability and Humor 198

8

The Future of Disability

209

The Paradox of Computer Technology 209
The Problem of Genetic Selection 213
The Problem of Physician-Assisted Suicide 217
Revisiting the Medical Model and Its Place in
Disability Studies 221
Disability and Human Rights 226

References
Index
About the Book

231
259
271

1
Disability in Society

DISABILITY IS A SOCIAL ENIGMA. THROUGHOUT HISTORY

people have felt compelled both to stare at the disabled people intheir midst and then to turn their heads in discomfort. Franklin
Delano Roosevelt is considered by many to be one of the greatest
presidents in the history of the United States, but he had to hide his
polio-induced paralysis and use of a wheelchair lest the public think
him too weak to lead the free world (Fleischer and Zames 2001; Holland 2006). The Hebrew Bible teaches that “thou shalt not curse thedeaf nor put a stumbling block before the blind” (Leviticus) but alsothat “if you do not carefully follow His commands and decrees. . . the Lord will afflict you with madness, blindness and confusionof mind” (Deuteronomy) (cited in Braddock and Parish 2001:14).
The institution of the “freak show,” which reached its heyday inthe nineteenth century but lasted in the United States until the 1940s,
featured people with disabilities as public spectacle. People withphysical disabilities and bodily deformities, as well as tribal nonwhite “cannibals” and “savages,” were displayed for public amusement and entertainment along with sword swallowers, snake charmers, bearded women, and the full-bodied tattooed (Bogdan 1988; see
Chapter 3).
The rise of a medical approach to disability, what disability studies calls the “medical model” (see Chapter 2), helped change thisstate of affairs. People with disabilities were now deemed worthy of
medical diagnosis and treatment and viewed more benevolently12

Introducing Disability Studies(Williams 2001). But benevolence may breed pity, and the pitied arestill stigmatized as less than full human beings. Thus the Muscular
Dystrophy Association’s annual telethon, which was hosted by Jerry
Lewis for more than five decades, features pitiable “poster children”
who help raise money for a preventative cure but does little toimprove the lives of those who are already disabled (Haller 2010;
Shapiro 1993).1 Some may wonder why one would even want to livein such a state. In fact, the storyline of Clint Eastwood’s 2004 Academy Award–winning Million Dollar Baby went so far as to suggestthat euthanasia could be the most humane response to quadriplegia(Davis 2005; Haller 2010).
In Million Dollar Baby, Maggie Fitzgerald, played by Hilary
Swank, is a feisty young woman who wants Frankie Dunn, played by
Clint Eastwood, to train her to become a professional boxer. Frankie
reluctantly agrees to do so, and as Maggie becomes virtually unbeatable in the ring, he becomes her mentor and friend. When Maggie
breaks her neck in a boxing accident (the result of an unscrupulous
opponent) and is severely disabled, she does not want to live withquadriplegia and asks Frankie to administer a lethal dose of adrenaline while she is still recovering in the hospital.
Disability scholars and activists were dismayed that so many
viewers and reviewers of the film seemed to sympathize with thedecision to kill the disabled character, as if her life no longer had
meaning.2 Maggie did not even have the opportunity to receive counseling or physical therapy to adapt to her new condition and consider
her options for living in the world. “Disability Is Not a Death Sentence” and “Not Dead Yet” read protest signs in Chicago, Illinois,and Berkeley, California (Davis 2005; Haller 2010).
Some nondisabled film columnists, such as liberal writers Maureen Dowd and Frank Rich, were equally dismayed at the protesters’
response: What’s all the fuss? Isn’t this just one artist’s view of thesituation? Doesn’t Eastwood, as a filmmaker, have the right to makeany film he wants? People wondered whether the negative reaction to
the film might have been fueled by Eastwood’s opposition to theAmericans with Disabilities Act* (ADA), passed in 1990, which*Key terms and laws are indicated in boldface the first time they appear in the book.

Disability in Society

3

granted civil rights to people with disabilities in the United States.
Appearing before the House Subcommittee on the Constitution in
2000, which was considering a measure to amend the ADA, Eastwood’s testimony was received in the context of a lawsuit that had
been filed against him by a disabled patron who alleged that his Mission Reach Inn resort in Carmel, California, was inaccessible to disabled guests and was therefore not ADA compliant (Cleigh 2005;
Davis 2005; Switzer 2003).3
Lennard Davis (2005), among others, wants people to understandthat disabled people’s opposition to the film was not about Eastwood’s anti-ADA politics, or about the storyline of Million Dollar
Baby alone, but about the entire social and cultural apparatus that
invalidates the experience of people with disabilities. According toDavis, the issue is not simply
that Eastwood is speaking his mind. It’s that he’s speaking themind of a country that is largely ignorant of the issues and politics
around disability. . . . The history of oppression of disabled people
is unknown to most people, and so they see disability as an individual tragedy, worthy of being turned into a movie, and not as political oppression and the struggle to fight that oppression. . . . It’s a
lot easier to make a movie in which we weep for the personal
defeat of a person who loses a leg or two, or cry with joy for thetriumph of an individual with disabilities, than it is to change thewhole way we as a society envision, think about, and deal withpeople who are disabled. (p. 2)

And this is why disability studies—an interdisciplinary field of
inquiry that includes representation from the social sciences, thehumanities, and the medical, rehabilitation, and education professions—is vital to an understanding of humankind. 4 It is a way forpeople with disabilities to stare back at those who have stared atthem (Fries 1997), to turn society’s gaze back on itself and point out
the things that nondisabled people don’t seem to notice because, as
Davis observes, they “see themselves as living in a mirage of being
normal” (2005:3). As a contribution to the advancement of disability
studies, this book represents a distillation of the literature, imbued
with a sociological sensibility, which aims to illuminate disability asa social phenomenon and help us all to see “how interconnected
human beings really are and how very much it diminishes us toassume that any life” is without value (Cleigh 2005:1).

4

Introducing Disability Studies

While understanding that disability is a global issue, this bookwill focus on the United States. Chapter 1 begins our inquiry with aconsideration of how disability is spoken about, defined, and understood sociologically; and it introduces the disability rights movement, the movement that is largely responsible for the very existence
and disciplinary thrust of disability studies as a particular academic
endeavor. Chapter 2 then delineates the diversity of theoretical
approaches to the field, beginning with a critique of the medical
model and the alternative perspectives, including the social model,that constitute the conceptual core of disability studies. This chapter
also examines the question of disability culture and identity, thepolitical economy of disability, the contributions of feminist andqueer theory, and disability and symbolic interaction. Next, Chapter
3 offers historical background, tracing the evolving treatment of people with disabilities from preliterate, ancient, and medieval societies
through the nineteenth-century and twentieth-century United States.
Chapters 4 and 5 examine disability across the life course, with
Chapter 4 focusing on the family and childhood and Chapter 5 onadolescence and adulthood. Chapter 4 considers parental firstencounters with childhood disability, the child’s perspective on disability, the impact of childhood disability on family life, and thechallenges of assessing and receiving special education services forchildren with disabilities. Chapter 5 looks at relationships with peers,
the education system, the world of work, sexual and emotional intimacy, and the receipt of health care and personal assistance.
Chapter 6 takes a phenomenological approach to the subject
matter, examining the disability experience from the vantage pointof those who live with a physiological-based impairment. Here we
consider the ways in which people perceive the world without sightand sound, use sign language, navigate the physical environment
with mobility impairments, experience rehabilitation after a spinal
cord injury, and participate in disability sports and athletics. Chapter 7 draws on selective examples from classic literature and Hollywood films to examine ways in which disability has been portrayedin popular culture. Finally, Chapter 8 concludes the book by considering a range of issues that inform prospects for the future of disability, including the role of computer technology, the problems of
selective abortion and physician-assisted suicide, the place of the
medical model in disability studies, and the question of disability
and human rights.

Disability in Society

5

Speaking About Disability
Before embarking on such a complex subject as disability, we firstneed to consider the language we use to talk about it. To begin with,disability studies asks us to become more aware of the words andphrases we may use, sometimes intentionally and sometimes unintentionally, that demean people with disabilities (such as “gimp,” “spastic,” or “retard”), including metaphors that conflate physical impairment with mental impairment (such as “lame” or “the blind leading
the blind”) or indifference (such as “turning a blind eye” or “turninga deaf ear”). Or take a word such as “invalid,” which is used both torefer to someone with a physical disability and to something that isillegitimate. Nowadays, even the term “handicap” has fallen into disrepute in disability studies. In contrast, disability studies often uses
“people first” language, referring to “people with disabilities” toemphasize the person rather than the disability. However, it is also
common, particularly in Great Britain, to use the term “disabled people” to highlight disability as an affirmative identity, not one to beashamed of, that identifies the common cause of a particular politicalconstituency (Gordon and Rosenblum 2001; Kleege 1999; Linton1998).
To be sure, nondisabled people sometimes find these language
issues tiresome and confusing, especially when disabled people
appropriate such terms as “gimp” or “crip” in an affirmative way,
similar to the way in which gay, lesbian, and transgendered people
appropriate the term “queer” as an affirmative identity.5 Moreover,
we now hear people using terms such as “differently abled,” “physically challenged,” “developmentally challenged,” or “children withspecial needs.” Simi Linton, for one, does not find these euphemisms
or “nice” terms useful, characterizing them as “well-meaning
attempts to inflate the value of people with disabilities [that] convey
the boosterism and do-gooder mentality endemic to the paternalistic
agencies that control many disabled people’s lives” (1998:14). She
notes as well that an entire profession called “special education” hasbeen built around the appropriation of a term, “special,” which may
have been “a deliberate attempt to confer legitimacy on the educational practice and to prop up a discarded group” but nonethelessobscures the reality that society considers “neither the children nor
the education” truly desirable (1998:15; see also Connor and Ferri2007; Wendell 1996).

6

Introducing Disability Studies

More generally, the point to be made here is that disability studies is an attempt to reassign meaning(s) to our use of the term “disability” and the ways we speak about it, and in doing so reveal “thecomplex web of social ideals, institutional structures, and government policies” that impact the lives of people with disabilities (Linton 1998:10). One of our first challenges in this effort is to develop
a more systematic working definition, or definitions, of disability. It
is to this matter that we now turn.

Defining Disability and the
Subject Matter of Disability Studies
To begin with, we need to ask, as does Susan Wendell, “Who defines
disability and for what purposes?” (1996:23). Insurance companies
or government agencies, for example, may have particular administrative criteria they use to define who is eligible for payments or benefits, and it may be in the interest of these providers “to define disability narrowly” in order to save money (1996:24).6 Similarly, lawsthat entitle people with disabilities to services, such as children inschools who need special accommodations, may utilize different criteria. Indeed, anyone who tries to negotiate the administrative-legal
system will often find themselves entangled in a maze of competingand contradictory definitions of what it means to be disabled, or disabled “enough,” to qualify, whereby they fit “some bureaucracies’
definitions of disability and not others” (1996:24; see also Altman
2001; Grönvik 2009).
The field of disability studies, however, is not governed by suchadministrative-legal criteria; and in this field a discussion of definitional issues typically begins with a distinction between impairment
and disability, whereby impairment refers to a biological or physiological condition that entails the loss of physical, sensory, or cognitive function, and disability refers to an inability to perform a personal or socially necessary task because of that impairment or thesocietal reaction to it. Although it has been common in the past to
also use the term handicap to refer to the social disadvantage that
accrues to an individual due to an impairment or disability, handicap
as a concept is rarely used in scholarly or activist circles these days,
largely because it has negative connotations when used to refer toDisability in Society

7

persons with disabilities as inferior or deficient in some way (Miller
and Sammons 1999; Wendell 1996; Whyte and Ingstad 1995).7
For our purposes, therefore, the distinction between impairment
and disability is what is most germane. Thus, for instance, people
who use a wheelchair for mobility due to a physical impairment may
only be socially disabled if the buildings to which they require accessare architecturally inaccessible. Otherwise, there may be nothing
about the impairment that would prevent them from participating
fully in the educational, occupational, and other institutional activities of society. Or take the case of visual impairment. Nowadays people who wear eyeglasses or contacts don’t even think of themselves
as having an impairment, because these corrective devices havebecome commonplace. But if it were not for these technological aids,
which are now taken for granted, their visual impairments might also
be disabilities.
Moreover, people with disabilities often experience prejudice
and discrimination comparable to what is experienced by people ofcolor and other minority groups, and they are therefore socially marginalized and disadvantaged in similar ways (Gordon and Rosenblum
2001; Hahn 1988; Siebers 2008). It remains sadly true that people
whose bodies are different from “a society’s conception of a ‘normal’or acceptable body,” even when it causes “little or no functional or
physical difficulty for the person who has them, constitute majorsocial disabilities” (Wendell 1996:44). Take the case of facial scarring or disfigurement, “which is a disability of appearance only, adisability constructed totally by stigma and cultural meanings”(1996:44). Lucy Grealy, for example, whose face was disfigured due
to surgery for facial bone cancer, recalls with great pain the cruelstares and laughing at her appearance: “I was my face, I was ugliness,” she writes (1997:17). In earlier times, it was even illegal toappear in public if one’s physical appearance offended others’ sensibilities, as in the case of the so-called ugly laws, ordinances thatwere prevalent in various cities across the United States. The oftcited Chicago ordinance passed in 1881 (and not repealed until 1973)
is a good illustration. It read: “Any person who is diseased, maimed,mutilated, or in any way deformed, so as to be an unsightly or disgusting object, or an improper person to be allowed in or on thestreets, highways, thoroughfares, or public places in this city, shallnot therein or thereon expose himself to public view, under the8Introducing Disability Studies

penalty of a fine of $1 [about $20 today] for each offense” (cited in
Schweik 2009:1–2).
More generally, nondisabled people are often uncomfortable,
even fearful, around people with disabilities, as if the disabling condition might be contagious. Robert Murphy thinks that all too many
nondisabled people view people with disabilities as a “fearsome possibility” (1987:117). They displace their fears that the “impairment
could happen to them” onto the other person. In this way, “the disabled person becomes the Other—a living symbol of failure, frailty,
and [for men] emasculation; a counterpoint to normality; a figure
whose very humanity is questioned” (1987:117). Similarly, in his
book Stigma: Notes on the Management of Spoiled Identity (1963),
Erving Goffman argued that disparaging reactions from others serve
to invalidate the disabled person as less than “normal” if not less than“human” beings. Goffman defined stigma as a characteristic of aperson who is “reduced in our minds from a whole and usual person
to a tainted, discounted one” (1963:3). Published the same year as
Howard Becker’s Outsiders: Studies in the Sociology of Deviance(1963), Goffman essentially framed the question of disability within
the labeling theory school of deviance, which posited that“deviance is not a quality of the act a person commits, but rather aconsequence” of others’ reactions (Becker 1963:9). Goffman proffered a general theory of stigma, attributing common devalued statuses to deviants of all types: people with disabilities, gays and lesbians, ex-convicts, mental patients, drug addicts, and alcoholics.8
Nancy Miller and Catherine Sammons (1999) observe that it isnatural for people to notice others who look different. Indeed, theyargue, the human brain is hardwired to scan the environment andnotice differences from the routine or “expected average” (p. 7).
Everybody reacts to differences. In the whole universe of differences, some attract us, some surprise or frighten us, and somearen’t important to us at all. Our reactions to differences are sometimes complex and confusing. We often want to be open-minded
and feel comfortable about other people’s differences but find thatsome unfamiliar differences make us feel tense and judgmental
instead. We are caught off guard when someone with an unexpected difference enters the room, and we may feel awkward as wetry to appear unsurprised. When we see an unsettling difference, it
can cause anxiety, uncertainty, and even a wish to avoid the otherperson. (pp. 1–2)

Disability in Society

9Miller and Sammons believe we can all learn to override thesereactions through habituation to new experiences and exposure toalternative cultural norms, and in this way expand our “personalcomfort zones” about disability and other social differences. Similarly, Spencer Cahill and Robin Eggleston (1995) note that awkward
encounters between able-bodied and disabled-bodied persons often
stem not from malicious intent but from the uncertainty of what is
expected. Should an able-bodied person, for example, offer assistance to someone who uses a wheelchair by opening a door for themor asking them if they need help retrieving something from a shelfin a grocery store? In their study of wheelchair users’ public experiences, Cahill and Eggleston found that able-bodied people sometimes
feared being rebuked for thinking that the wheelchair user mightneed help, finding “that they have judged [them] less competent than[they] want to be considered or consider themselves” (1995:693).
Cahill and Eggleston also learned about occasions in which a wheelchair user was treated as a “non-person,” for instance, when they
were with a group at a restaurant and the waiter or waitress asked
others what the wheelchair user was ordering, as if they were incapable of speaking for themselves. At the same time, the researchers
also learned of many acts of public kindness, where the nondisabledoffered wheelchair users much appreciated assistance, which ran
counter to the view that people with disabilities are uniformly stigmatized and treated badly (see also Bogdan and Taylor 1989; Makas
1988).
All this is to say that it is important to understand “disability” asa social phenomenon, an experience that cannot be reduced to thenature of the physiological impairment. Rather, it is a product ofsocietal attitudes and the social organization of society. This view issometimes referred to as a constructionist, or social constructionist, approach to disability, which understands disability as constructed by or residing in the social environment, in contrast to an
essentialist view, which understands disability as a condition that
resides or is inherent in an individual’s particular impairment (Baker
2011; Omansky 2011; Wendell 1996).
To complicate matters further, disability scholars note that
impairment itself is a product of social definition, as in the case of
medical diagnosis and classification systems that are themselves subject to dispute and change over time (Brown 1995). Take the case of

10

Introducing Disability Studies

autism, for example, which is now understood as consisting of aspectrum of conditions that includes people who are considered very
“low functioning” and very “high functioning.” Autism was discovered separately but nearly simultaneously by Leo Kanner, a US childpsychiatrist, and Hans Asperger, an Austrian pediatrician, in 1943
and 1944, respectively. Both Kanner and Asperger chose the term
“autism” from the Greek word autos (self) to refer to the children’s“powerful desire for aloneness” and “anxiously excessive desire forthe maintenance of sameness” (Kanner 1943:242, 249). People with
autism have difficulty with face-to-face interaction, lacking the ability to empathize with others and appearing emotionally detached.
They become attached to routines and can become anxious whenthese routines are disrupted. They often become focused on specialized, complex topics, which can be associated with a number ofstrengths, as people with autism can be exceptionally skilled at systematizing information, mathematics, computer programming, music,
and art (Cowley 2003; Grandin 2006; Kalb 2005; O’Neil 2008).9
Whereas Kanner went on to become a leading figure in childpsychiatry, Asperger’s clinic was destroyed during the war, and he
was virtually ignored outside of Europe until his work was discovered by British psychologist Lorna Wing and translated into English
in 1991. It was Wing who popularized Asperger’s observation thatthe condition, now called Asperger’s syndrome or Autism Spectrum Disorder, consisted of a range of conditions that are markedly
different from one another (Grandin 2006; O’Neil 2008; Silberman
2001; Singer 1999).
Up until 1980, the term “autism” did not appear as a distinct condition in the Diagnostic and Statistical Manual (DSM), the official
diagnostic guidelines of the American Psychiatric Association. Previously the only mention of it had been as a symptom of childhood
schizophrenia, and Asperger’s syndrome was not included until 1994
(Straus 2010). Thus, Donna Williams (1992), born in 1963, did notunderstand her condition as “autism” until she was twenty-five years
old. She knew she was not like other children, but did not know why.
As a child, she was even thought to be deaf because she avoided eye
contact and was emotionally unresponsive to others. Even today,
there is some controversy about whether autism, Asperger’s syndrome, and a few other disorders should each be characterized as distinct diagnostic conditions, or rather, as constituting a unitary set of
conditions that exist along a continuum. Thus, in the 2013 revision ofDisability in Society

11

the DSM, Asperger’s syndrome was placed under the rubric ofautism, essentially removing the distinction between them (Baker
2011; Grandin 2006).
Another definitional issue that complicates our subject matter isthe distinction between physical, sensory, and cognitive impairments. In some instances one may find the term “physical impairment” being used to refer to both mobility impairments and sensory
impairments such as vision and hearing loss, and in other instances
only for mobility and not sensory impairments. As for “cognitive
impairment,” this term is generally used to refer to a wide range ofconditions such as autism, traumatic brain injury, and mental illness.
Within this broad category, a distinction is also made between intellectual disabilities, the term that is now used to refer to mental retardation and that involves limitations “rooted in sub-average intellectual and adaptive functioning occurring early in life,” and learning
disabilities, a term that refers to limitations involving “the brain’s
ability to receive, process, analyze, or store information” (Carey
2009:190; see Box 4.3).10
Still another issue that complicates our subject matter is the distinction between illness and disability, a distinction some disability
scholars and activists insist on making, in part because they wantpeople to know that people with disabilities are often perfectly
healthy, requiring no particular medical care.11 Wendell (1996) thinksthat the adamancy by which some have opposed including people
with illnesses among the constituency of disabled people may stemfrom the desire to avoid the additional stigma that is associated with
illnesses such as AIDS and cancer. Nevertheless, it remains true thatmany people with disabilities are also ill, and chronic or life-threatening illnesses, as well as the normal process of aging, can have disabling consequences for individuals (Bury 2000; Zola 1991). 12
Indeed, most anyone who lives long enough can expect to have anexperience with disability before they die. Joseph Shapiro adds thatfewer than 15 percent of those who are disabled are actually bornwith their impairment, and therefore anyone at any time, “as a resultof a sudden automobile accident, a fall down a flight of stairs,” or theacquisition of a serious illness, can join the ranks of people with disabilities (1993:7). One national poll taken in 2004 found that themedian age for the onset of disability in the United States was 35.7
years, with 47 percent acquiring their disability after the age of forty(National Organization on Disability/Harris Poll 2004).

12

FURTHER EXPLORATION

Box 1.1 Counting Disability
Studies that try to count the number of people who have a disability are complicated by the question of how disability is defined,
but with this caveat in mind, we can still get an idea of what thisnumber may be. The US Census Bureau, for example, reported thatin 2005 about 19 percent of the US population indicated that they
had at least some level of disability, with about 12 percent having
a severe disability. The census found that nearly 4 percent of people six years of age and older needed assistance with everyday
activities such as showering or bathing and getting around insidetheir homes. While the majority of disabilities were physical innature, about a third of all those reporting a disability were classified as having difficulty with cognitive, mental, or emotional functioning. Not surprisingly, older Americans reported a higher levelof disability than younger Americans, with adults over sixty-four
years of age comprising about a third of all those reporting disabilities (Moore 2009).
In addition to census data, a study by the Centers for Disease
Control and Prevention (CDCP) reported that in 2005 about 22
percent of US adults had a disability, with about 10 percent indicating they had difficulty walking three city blocks or climbing aflight of stairs. The top ten causes of disability were listed as thefollowing (in order of most common to least common): arthritis or
rheumatism, back or spine problem, heart trouble, mental or emotional problem, lung or respiratory problem, diabetes, deafness or
hearing problem, stiffness or deformity of limbs/extremities, blindness or vision problem, and stroke (CDCP 2011).
The US Department of Health and Human Services (USDHHS) also collected survey data on adults with disabilities in the
United States between 2001 and 2005, operationalizing disability
as having difficulty with basic actions and complex activity. Basicaction difficulty was defined in terms of limitations in movement
or sensory, emotional, or mental functioning, while complex activity difficulty was defined in terms of limitations in self-care tasks,
ability to work, or ability to fully participate in social activities.
About 30 percent of Americans reported some kind of basic actiondifficulty, with the most common related to movement, such ascontinues

Disability in Society

13

Box 1.1 continued
walking, bending, reaching overhead, or using their fingers to
grasp something. About 13 percent reported noticeable vision orhearing difficulties, and 3 percent reported emotional or cognitivedifficulties. Work limitation was the most commonly reported complex activity limitation (12 percent), followed by social limitation(7 percent) and self-care limitation (4 percent). Adults over sixtyfive years of age made up about 33 percent of those with basic limitations and 36 percent of those with complex activity limitations(USDHHS 2008).
Internationally, the World Health Organization (2011) reported
that in 2010 there were more than one billion disabled people
around the globe, about 17 percent of the world’s total population.
Other international data indicate that disabled people are more likely than nondisabled people to live in poverty, as is true in the
United States, although poverty in less developed, nonindustrialized countries is more severe. About 80 percent of the world’s disabled population lives in such countries, where just 20 percent of
the world’s health-care dollars are spent. In many places around theglobe, war and armed conflict are major causes of disability. Today,
there are millions of disabled refugees and displaced persons inplaces such as the Middle East, the Balkans, Central Africa, andSoutheast Asia; and at least 2,000 people are killed or injured every
month by landmines that are buried in more than seventy countries(Albrecht, Seelman, and Bury 2001; Priestley 2001).

Be that as it may, contemporary approaches to disability try to
avoid the pejorative connotations of the term and reframe it as a matter of social difference. As Miller and Sammons argue:
Everybody’s different. Some of us have differences that no one
notices, while others are different in very apparent ways. We alllook different from others, sometimes by chance, sometimes bychoice. Some people move on foot, while others use wheelchairs orother ways of getting around. We communicate in a variety of languages and dialects and also by using hand signs. Our behavior
patterns have incredible variety, even within our own families. We
all have unique physical strengths and limitations as well as different learning abilities, creative talents, and social skills. (1999:1)

14Introducing Disability Studies

In this way, Christina Papadimitriou (2008b), among others,
rejects a conception of disability as undesirable deviance, as a “perversion of the human condition” or unrelenting tragedy that propels
people into the depths of despair (Camilleri 1999:849). Rather, disability should be understood as a form of diversity that can be appreciated as a different way of being embodied in the world. Papadimitriou does not view disability and normality as polar opposites but as
falling “along a continuum of . . . humanly possible ways” of being(2008b:219), or in Richard Scotch and Kay Schriner’s (1997) terms,
the natural variation that occurs among human beings. While impairments may never be wished for and are often the source of great suffering (for physical and social reasons), people with disabilities differ quite dramatically in the nature of their conditions, which are not
as “wholly disastrous” as people often imagine (Fine and Asch
1988:11). They commonly learn to appreciate and enhance theirremaining abilities and to strive for goals and qualities of humanworth that are within their grasp (Gill 2001; Potok 2002; Wright1960). According to Tobin Siebers, “People with disabilities want tobe able to . . . live with their disability, to come to know their body,to accept what it can do, and to keep doing what they can for as longas they can. They do not want to feel dominated by people on whomthey depend for help, and they want to be able to imagine themselvesin a world without feeling ashamed” (2008:69). In almost every case,
Siebers adds, people with disabilities have a better chance of enjoying a fulfilling life if they accept their disability as a positive aspectof their identity that provides them with a unique and at times contentious way of being in and viewing the world.
At its core as a scholarly discipline, disability studies rejects
approaches to disability that seek to eradicate it. This does not necessarily mean that it opposes rehabilitative interventions that mightenhance a person’s ability to live the life she or he most wants tolive. What it does aim to do is critique “the widespread belief thathaving an able body and mind determines whether one is a quality
human being” (Siebers 2008:4). In doing so, it identifies a source of
oppression, ableism, which is comparable to racism, sexism, and heterosexism in constituting a system that subjects people to “political,
economic, cultural, or social degradation” (Nowell 2006:1179).
Ableism assumes that some people (and bodies) are “normal” andsuperior while other people (and bodies) are “abnormal” and inferior,and it entails institutional discrimination on the basis of this distinction (Linton 1998; Papadimitriou 2001).13 Siebers calls this the “ide-Disability in Society

15

ology of ability,” which in its simplest form constitutes a preference
for able-bodiedness, but in its most radical form “defines the baselineby which humanness is determined, setting the measure of body andmind that gives or denies human status to individual persons”(2008:8). As a dominant or hegemonic ideology, ableism is so taken
for granted that it remains unconscious and invisible to most people,
even though it constitutes an overarching regime that structures the
lives of people with disabilities. Disability studies aims to unmask
the ideology of ableism, to deconstruct it, to bring it out in the open
for all to see.

The Disability Rights Movement
One cannot begin to approach disability studies without crediting itsvery existence and conceptual thrust to the contemporary disability
rights movement.14 The social movement for disability rights is aninternational phenomenon, but the movements in the United Statesand Great Britain are most notable for their contribution to disability
studies (Bickenbach 2001; Fleischer and Zames 2001; Shakespeare
and Watson 2001). In the United States this movement emerged in
the context of other “oppositional movements” of the 1960s, such as
the civil rights movement, women’s movement, consumer movement, and gay and lesbian movement, which advocated on behalf ofpreviously marginalized and underrepresented political constituencies (Mansbridge and Morris 2001).
We will explore this movement in more detail in Chapter 3, but
it is worth noting here that unlike some of the other movements ofthis era, the disability rights movement does not have a widely
known figure with name recognition such as a Martin Luther King
Jr., Rosa Parks, Betty Friedan, Gloria Steinem, or Ralph Nader. But
Ed Roberts is arguably someone deserving of comparable recognition. Roberts, who was severely disabled from polio—he was a quadriplegic who had some minimal use of his hands—had gained admission to the University of California, Berkeley (UCB), in 1962, thesame year that James Meredith became the first African American toattend the University of Mississippi. As a youth, Roberts had had tofight to get his high school “diploma because he had not completed
the driver’s education and gym requirements. . . . [Then] California’s
Department of Rehabilitation [CDR] refused to pay for his college
education, as it did for other, less disabled students, because

16Introducing Disability Studies

Roberts’s [CDR] counselor . . . believed that spending taxpayer
money on [him] would be wasted since it was ‘infeasible’ he could
ever work” (Shapiro 1993:44). Roberts took his case to the media,
eventually forcing the CDR to relent (Braddock and Parish 2001;
Fleischer and Zames 2001; Scotch 2001b).
Roberts’s success ushered in opportunities for other students
with disabilities at UCB. Influenced by the political radicalism of theday, Roberts and this cohort of activists lobbied for accessibility
reforms both on campus and in the larger Berkeley community. They
questioned the conventional definition of “independence,” which
defined it in terms of the tasks a disabled person could perform without assistance. Known as the independent living movement,
activists wanted to define independent living in terms of the qualityof life that people with disabilities could achieve with or without
assistance. They argued that people with disabilities did not simply
need custodial care but wanted “to be fully integrated [into] theircommunities” (Shapiro 1993:52). They also aimed to reverse thepower relationship between themselves and the medical, educational,
and social service professionals whose services they required. People
with disabilities no longer wanted to be treated as clients who weretold by professionals what to do. Instead, they wanted to be treated as
self-advocates and consumers of services who could decide what was
best for themselves. To achieve these ends, Roberts and his allies
established the first Center for Independent Living in the UnitedStates, which eventually evolved into a nationwide network of consumer-controlled, community-based centers that provide independent
living skills training, peer counseling, information and referral, andadvocacy for people with disabilities (Fleischer and Zames 2001;
Shapiro 1993).
As this type of political activism spread throughout the country,
the US Congress eventually responded by passing a landmark pieceof federal disability legislation, the Rehabilitation Act of 1973,
which, among other things, mandated reasonable accommodations inpublic education and employment, required public institutions to initiate architectural accessibility reforms, and “made it illegal for any
federal agency, public university, defense or other federal contractor,
or any other institution or activity that received federal funding, todiscriminate against anyone solely” for reason of disability (Shapiro
1993:65). Most politicians who had voted for the act, however, had
not seriously considered its broader implications and potential costs

FURTHER EXPLORATION

Box 1.2 Judy Heumann: Disability Rights Activist
In addition to Ed Roberts, one of the notable figures in the early
disability rights movement is Judy Heumann. Heumann was bornin Brooklyn, New York, in 1947, contracting polio when she waseighteen months old. Like Roberts, she became a quadriplegic. One
physician advised her parents to put her in an institution, which
they did not, and relatives told them that “their misfortune musthave been the result of some sin on their part” (Shapiro 1993:56).
For three years during elementary school, Heumann was required
to receive home instruction because the principal said her presence
in a wheelchair was a “fire hazard.” But her parents were determined to give their daughter a sound education. They placed her ina school for disabled children, where Heumann soon “realized thatthe parents of her classmates had low expectations for their children, and that the teachers, when not prodded by pushy parents,
respond accordingly” (Shapiro 1993:56). Nevertheless, Heumann
graduated high school and was accepted to Long Island University,where she had to fight for “everything from the right to live in adormitory to getting someone to lift her wheelchair up the steps tothe classroom buildings. She organized other disabled students tofight for ramped buildings . . . [and] took part in protests against
the Vietnam War” (p. 57).
In 1970, one year after graduating from college with a teachingdegree, Heumann was denied a license to teach in New York City’s
public schools because she could not pass the medical exam. The
testing physician questioned whether Heumann could get to the bathroom by herself or help children out of the building in an emergency.
A media campaign resulted in her receiving her teaching license. A
newspaper headline read, “You Can Be President, Not Teacher, with
Polio,” and quoted Heumann as saying, “We’re not going to let ahypocritical society give us a token education and then bury us”(Shapiro 1993:57). Still, no one would hire her until the principal of
the elementary school she had attended offered her a job.
Heumann formed her own disability rights activist group,
Disabled in Action. In 1972, she traveled to Washington, DC, todemonstrate at the Lincoln Memorial after President Richard Nixon
vetoed a spending bill to fund federal disability programs. In theclosing days of the presidential election, she joined with a group of
disabled Vietnam veterans to take over Nixon’s New York reelection
headquarters to demand an on-camera debate with the president himself. The following year, Roberts invited her to come to California towork for the Center for Independent Living that he had just opened(Fleischer and Zames 2001; Scotch 2001b; Shapiro 1993).

18

Introducing Disability Studiesof implementation. Thus the Department of Health, Education, andWelfare (HEW) under presidents Gerald Ford and Jimmy Carter tried
to stall the development and implementation of enforcement provisions (Braddock and Parish 2001; Fleischer and Zames 2001; Scotch
2001b).
When Joseph Califano, Carter’s secretary of HEW, tried to pushthrough regulations that would have allowed “some disabled children
to be educated in special schools rather than [in] regular schools
adapted for them,” disability activists derided the measure as “separate but equal” (Shapiro 1993:68). And when Califano also came out
for exceptions to rules requiring wheelchair ramps in schools andhospitals, the activists organized demonstrations around the country,
particularly in the ten cities where HEW regional officers werelocated—Atlanta, Boston, Chicago, Dallas, Denver, Kansas City,
New York, Philadelphia, San Francisco, and Seattle, in addition to
Washington, DC.
Until this time, the disability rights movement in the UnitedStates had been local and disparate; it now became a national andcross-disability movement of diverse groups working together forsocial change. It was this movement that later culminated in the passage of the ADA, which further expanded the rights of disabled people in both the public and private sectors. Although the implementation of the ADA, like previous progressive legislation for disabled
people, has been plagued by controversy over its interpretation andimplementation, it marked a seminal point in the legal rights andexpansion of opportunities for people with disabilities in the UnitedStates (Braddock and Parish 2001; Fleischer and Zames 2001; Scotch
2001b; Switzer 2003).
Joan Tollifson (1997), who is missing her right hand and half ofher right arm, describes how exhilarating and empowering it was tobe part of this movement. Tollifson writes that while growing up she“used to dream about being in a world where being disabled was no
big deal, where no one considered it a tragedy, [where] no one
thought you were inspiring or felt sorry for you, [where] no one
stared at you” (1997:105). All too many times she experienced complete strangers coming up to her on the street to inquire about her
physical appearance and children gasping in horror. People would
tell her with tears in their eyes how amazingly well she did things,
such as tying her shoes, or that they didn’t think of her as disabled—
she guesses because they thought that a “real cripple” would haveDisability in Society

19

been totally incompetent. Others would “try desperately to pretendthat they [didn’t] even notice.” People would “swallow their curiosity and conceal their discomfort.” Adults would tell children who
asked her about her arm, “ssshhhhhhh!” (1997:105–106).
Growing up, Tollifson recalls, she intentionally avoided otherdisabled people, “dis-identifying” with them and refusing to see herself as part of that group. Still, she was in a great deal of emotional
pain. While in therapy, she reluctantly joined a group of “marvelous,
dynamic” disabled women who shared many of the same experiences
she had. She no longer felt isolated and alone and began to realizethat her private pain was a social phenomenon, “part of a collective
pattern that was much larger than any one of us” (1997:105–106).
Indeed, what Tollifson now realized is the essence of what C. WrightMills (1959) famously called the sociological imagination, that personal or private troubles are actually public issues.
In the late 1970s, Tollifson got involved in the disability rights
protest movement, participating in a month-long occupation of the
San Francisco Federal Building, demanding that the Carter administration sign into law the regulations they had been opposing.
We created a whole society in microcosm inside that building,with work committees, church services, study groups, wheelchairraces, long strategy meetings. People laughed, argued, shared theirlives; some even fell in love and later married. In this society, younever had to worry about being discriminated against because ofyour disability. No one was going to tell you that you couldn’t doa particular task because you only had one hand or were in awheelchair. At last, here was a society where being disabled wasno big deal. . . . After a lifetime of isolating myself from other disabled people, it was an awakening to be surrounded by them. . . .
Finally identifying myself as a disabled person was an enormous
healing. (1997:107)

To be sure, the social category of “people with disabilities” isconstituted by a diverse set of conditions and people who “may havelittle in common except the stigma society imposes on them” (Engeland Munger 2003:14). Moreover, Nick Watson (2002) found thatmost of the disabled people he interviewed did not consider “disability” a salient part of their identity. They did not dismiss their impairment as irrelevant—it was an undeniable fact of their lives—but neither did they internalize its significance. Although the disability
rights movement has aimed to advance an affirmative view of dis-

20

FURTHER EXPLORATION

Box 1.3 Autism and the Neurodiversity Movement
The concept of neurodiversity, which first appeared in print in anarticle by Harvey Blume that was published in The Atlantic magazine in 1998, originated among self-aware members of autistic
communities (Baker 2011; Singer 1999). Nowadays neurodiversity
is used to refer to a variety of atypical cognitive styles due to neurological differences, including autism, intellectual disabilities,
learning disabilities, attention deficit hyperactivity, epilepsy, posttraumatic stress disorder, bipolar disorder, Tourette’s syndrome,and schizophrenia (Antonetta 2005; Baker 2011; Fenton and Krahn
2007). But the impetus for neurodiversity as a social movement
arguably comes from the community of relatively high-functioning
people on the autism/Asperger’s spectrum. Within this community,
people with conventional styles are referred to as “neurotypicals”
or “normies,” while people with atypical styles are viewed as partof the normal variation of human beings (Baker 2011; Singer
1999).
Dana Lee Baker notes that autism groups dedicated to neurodiversity evolved to help promote the view of neurological difference
as a difference that “can be understood and experienced as much asa source of community and communal identity as can differencesmore routinely associated” with other forms of diversity such as
those based on race, ethnicity, gender, and sexual orientation(2011:20; Fenton and Krahn 2007). Although functioning at thelower end of the autistic spectrum may entail deficits that can
include intellectual disabilities and difficulty with speech, functioning at the high end is not viewed as a “disorder” or as a “fundamentally undesirable” element of the human condition and is, in fact,credited with contributing positively to human innovation (Baker
2011:20; Baron-Cohen 2000). Thus evidence from biographicalaccounts of notable figures in human history, innovators in theirrespective fields—such as Albert Einstein, Charles Darwin,
Wolfgang Amadeus Mozart, Vincent van Gogh, Ludwig
Wittgenstein, and Thomas Jefferson—strongly suggests that theymeet the criteria now classified under the rubric of autism orAsperger’s syndrome (Grandin 2006; O’Neil 2008). Judy Singer(1999) thinks that the development of computer technology and theInternet itself may very well have been, in large part, the product ofneurodiversity, and those who at one time were denigrated in popucontinues

Disability in Society

21

Box 1.3 continued
lar culture as “nerds” or “geeks,” such as Bill Gates himself, may
have been (are) high-functioning cognitive atypicals. Temple
Grandin (2006), who is known for her contributions to animal psychology and the development of humane methods of handling livestock, thinks that many atypical children are being wrongly tracked
into special education curriculums in school rather than into programs for the gifted and talented (see Box 6.1). In doing so, boththese children and our society are being done a disservice.

ability identity, the people in Watson’s study preferred to “negate
impairment as an identifier” altogether (2002:524). Siebers, on theother hand, thinks that the notion of disability identity will continue
to be useful for advancing the collective interests of disabled people
and helping all of us think about “fundamental democratic principles
such as inclusiveness and participation” (2006:25). Carol Gill hopes
for the day, not when her impairment will be deemed irrelevant, butwhen disability will provoke “a respectful curiosity about what I
have learned from my difference that I could teach society. In such aworld, no one would mind being called Disabled. Being unable to dosomething the way most people do it would not be seen as something
bad that needs curing. It would be seen as just a difference”(1994:45). And John Hockenberry wonders, “Why aren’t people withdisabilities a source of reassurance to the general public that although
life is unpredictable and circumstances may be unfavorable, versatility and adaptation are possible; they’re built into the coding of
human beings” (quoted in Fleischer and Zames 2001:205).

Summary
In this opening chapter of the book, we raised the question of why
disability is vital to an understanding of humankind—as a life experience, as a scholarly endeavor, and as a subject for students taking
courses in disability studies. We began by considering the language
we use to talk about disability, both appropriately and inappropriately. We then raised the thorny issue of defining disability, noting
the distinction between administrative-legal definitions and sociolog-

22Introducing Disability Studies

ical approaches, the latter including a social constructionist view thatlocates the defining feature of disability as residing in the social
environment and that reframes disability as a matter of social difference existing along a continuum of humanly possible ways of being
embodied in the world. We also introduced the concept of ableism,
the ideology and institutional practice that devalues people with disabilities as inferior and subjects them to discriminatory treatment.
Finally, we considered the emergence of the disability rights movement in the United States, which is arguably responsible for the very
existence and thrust of disability studies as a distinct academic
endeavor. In doing so, we also discussed the independent living
movement and the activism that revolved around the federal Rehabilitation Act of 1973, which culminated in the Americans with Disabilities Act of 1990, the landmark civil rights legislation for people withdisabilities that we will examine more fully later in the book.

Notes
1. Muscular dystrophy is a group of genetic muscle disorders thatweaken the musculoskeletal system and impede movement. The condition isprogressive, worsening over time. See Box 8.2 for further discussion of
Lewis and the telethon issue.
2. We will discuss the question of physician-assisted suicide in Chapter 8.
3. Eastwood’s resort had just undergone a $6.5 million renovation thatstill left hotel washrooms inaccessible to wheelchair users. The proposed
amendment would have required defendants in lawsuits to take corrective
actions within 90 days. Eastwood lost the lawsuit and was required to pay
the plaintiff’s attorney’s fees and make his resort accessible.
4. Sharon Snyder (2006) associates the origins of disability studies in
the United States with sociologist Irving Zola and the formation of the Society for the Study of Chronic Illness and Disability, later the Society for Disability Studies, in the early 1980s (see also Zola 1982).
5. Robert McRuer (2006, 2010) advances a theoretical perspective hecalls “crip theory,” which applies insights from feminist and queer theory todisability studies (see Chapter 2).
6. The ADA defines disability as a physical or mental impairment that
substantially limits one or more of an individual’s major life activities.
7. Two international organizations, the UN and the World Health Organization, were influential in propagating the distinction between impairment,
disability, and handicap (Altman 2001; Wendell 1996; Whyte and Ingstad
1995).
8. In this list, Goffman also included women and people of color—
indeed, anyone who was not an “unblushing” American male, that is, “aDisability in Society

23

young, married, white, urban, northern, heterosexual Protestant father of college education, fully employed, of good complexion, weight, and height, anda recent record of sports” (1963:128).
9. Autism is marked by rapid brain growth between the first 6 to 14
months of life. Researchers now think that this growth process may generate
more sensory neurons than the brain can integrate into a coherent network,
accounting for why people with autism feel anxious around too much stimuli and new situations. Autism appears to have a genetic component, but
environmental toxins have been implicated as well (Cowley 2003; Grandin
2006; Kalb 2005; King and Bearman 2011). For further discussion ofautism, see Box 2.1 and Box 4.2.
10. In her history of intellectual disabilities, Allison Carey (2009) traces
the evolution of such terms as “idiot,” “moron,” and “feeble-minded,” andby the twentieth century, their replacement with “mental retardation,” whichat the time was considered less of a pejorative. By the 1970s, the term
“developmental disabilities” came to be seen as less pejorative than mental
retardation and used as an umbrella term for multiple types of disabilities.
Nowadays some school systems also identify a category of “emotional disabilities,” which is used interchangeably with emotional disturbances or
behavioral disorders (Virginia Department of Education 2012).
11. Robert Murphy and colleagues (1988) characterize disability as acondition of social liminality that resides “betwixt and between” the social
states of sickness and health (see also Cahill and Eggleston 1995). The illness versus disability question also involves mental illnesses and includes
conditions such as schizophrenia (Baker 2011).
12. Gary Albrecht (2010) characterizes the “sociology of disability” in
the United States as a subspecialty of medical sociology. He also notes that
US scholars have drawn less from the social constructionist tradition thantheir British counterparts. For further discussion of the US and British traditions in disability studies, see Meekosha (2004), Omansky (2011), andShakespeare (2006).
13. Davis (1995) argues that the study of disability necessarily entails thestudy of normalcy.
14. Snyder describes disability studies as the “theoretical arm” of the disability rights movement (2006:478).