Many of its leaders see their interdisciplinary research as a form of civil-rights activism
When he was a sixth grader, Paul Longmore recalls, his teacher arranged for him to move from a special-education class to a “regular” class at the local junior-high school the following year. “She called me over to her desk and said, ‘You have to succeed. If you don’t, they won’t provide the opportunity for other students like you.'”
He had similar experiences right through college and graduate school, says Dr. Longmore, who is now an associate professor of history at San Francisco State University, and who has what he will describe only as a “pretty extensive” disability.
When he became a historian, he says, “I not only didn’t study disability in any formal way, I didn’t want to be around people with disabilities. I carried a good deal of prejudice myself.”
Now, at 51, his voice registers surprise that his “principal strategy to gain some kind of validity for myself was to try to pass as not at all disabled.”
That changed, but not until “pretty far into adulthood,” he says. “I began to encounter people with disabilities, and I wanted to spend some time with them. They were civil-rights activists.”
Disability-rights activism alerted him to the potential for new academic approaches. Now he is one of a growing number of researchers taking novel interdisciplinary approaches to the study of physical disabilities.
These scholars are challenging established approaches in the biological, social, and cognitive sciences.
The researchers, many of whom are people with disabilities themselves, consider disability not from a medical or social-service perspective, but in terms of cultural formulations and depictions. They look at a range of cultural expression as varied as novels and movies, public policy, architecture, urban planning, philosophy, and law. They gauge how stereotypes-talk of “abnormalities,” “defects,” “invalids,” even “monstrosities”-have come to be accepted.
When they do focus on the medical model of disability, they suggest that it has, in fact, played a role in the segregation of people with disabilities, and in the labeling of those people-often as aberrant, deviant, or contaminated, and certainly as abnormal. In that way, the researchers argue, the medical model has discouraged full citizenship for people with disabilities.
Dr. Longmore and other new-style disability researchers, for their part, view disability as a category akin to race, ethnicity, class, and gender.
Recently published collections of essays demonstrate the range of current disability research. Routledge, whose cultural-studies collection a few years ago heralded the arrival of that field, last year issued The Disability Studies Reader, edited by Lennard J. Davis, a professor of English at the State University of New York at Binghamton.
Also last year, the University of Michigan Press published The Body and Physical Differences: Discourses of Disability, edited by David T. Mitchell and Sharon L. Snyder, assistant professors of English at Northern Michigan University.
Those collections demonstrate how the new, humanities-oriented approach to disability studies borrows from many fields and movements, including cultural studies, area studies, feminism, race-and-ethnic studies, and gay-and-lesbian studies. It is extensively informed by literary and cultural criticism, particularly of the post-structuralist variety, in so far as it pulls apart concepts about disability to see what cultural attitudes, antagonisms, and insecurities went into shaping them.
In an essay from the Michigan collection, for example, Dr. Longmore offers some unsparing words about telethons for disabilities, with fading celebrities pitching for funds and flanked by visiting athletes, corporate officials, and perhaps a recent Miss America. These combinations of “patriotic rally and religious revival” serve as “moral allegories of cleansing and renewal” to demonstrate “the persistence of public virtue” — even though an estimated 80% of viewers watch without ever giving, he notes.
Like the fields it resembles, disability studies also often embrace political activism. Polls show that disabled people have become a crucial voting bloc; the Americans With Disabilities Act passed with bipartisan support in 1990.
Legal prohibitions against job discrimination, and assurances of “reasonable accommodation,” insure increased access to academia and other public realms, researchers believe. So do such technological advances as voice-activated computers and e-mail. What’s more, they add, as the population ages, Americans have become more mindful of disabilities and more sympathetic toward them.
Apparently, disability researchers suggest, the cultural and historical moment is right for their field. “It’s like the gay-and-lesbian slogan, ‘We’re here, we’re queer,'” says Simi Linton, a psychologist who is co-director of the Disabilities Studies Project at Hunter College of the City University of New York. “One of our rallying cries is, ‘Nothing about us without us.'”
Academic publishers are listening. Dr. Linton’s Claiming Disability: Knowledge and Identity has just appeared in the New York University Press Series “Cultural Front,” edited by Michael Berube, a professor of English at the University of Illinois at Urbana-Champaign — whose own book Life As We Know It (Pantheon, 1996) chronicles his family’s raising a child with Down syndrome.
Other publishers are scrambling to issue books and essay collections in disability studies, on the nature of stigma; sexuality and disability; and the historical development of notions of categories-such as “deaf”-that are now often deemed self-explanatory.
Among the major publishers in the field, Temple University Press has long featured disability-related titles on its list, most of them of the medical, social-service, or public-policy varieties, but some now with a humanities angle as well. Michigan has just begun a series, to be edited by Dr. Snyder and Dr. Mitchell, titled “CORPO (REALITIES): Discourses on Disability.” Other active houses in the area include Verso, the University of California Press, and Columbia University Press.
Just how much the cultural views of disabilities have changed is apparent from the phenomena studied by recent authors. The freak show, a thoroughly discredited staple of the 19th and early 20th centuries, has proved to be a gold mine for researchers. Last year, Rosemarie Garland Thomson, an associate professor of English at Howard University, edited a volume of essays for the N.Y.U. press called Freakery: Cultural Spectacles of the Extraordinary Body. She took up the subject again in Extraordinary Bodies, published by Columbia last year.
Scholars who are themselves disabled argue that they have a vantage point from which to make singular observations. A telling example, Dr. Thomson’s colleagues say, is her insight on one aspect of the work of a few prominent black female novelists, including Toni Morrison. She noticed that they have put disability to a distinctive, and surprising, use: They construct female characters whose disabilities force them to make their own way, so that they find alternatives to the kinds of subservient role that American society has often forced on women, black women in particular.
Such uplifting metaphoric uses of disability are rare, Dr. Thomson notes. However, she adds, they do provide her with a chance to point out to students that various cultures have, at times, ennobled rather than derided people with disabilities.
While fellow literary critics call Dr. Thomson’s insights fresh and striking, she like Dr. Longmore, at first hesitated to present perceptions shaped by her own disability. “It was a little scary. I felt vulnerable. I felt exposed. It was difficult for me to talk about an issue that I had imagined as being very personal, perhaps even embarrassing, sort of shameful.”
But the context of academic discourse provided relatively safe grounds for “coming out,” she says.
Now the field is taking on the trappings of academic acceptance. The Modern Language Association has a Committee on Disability Issues in the Profession. The M.L.A.’s annual meeting, and those of many other academic groups, now includes sessions on disability studies.
Some 300 academics have joined the Society for Disability Studies (SDS), which was founded in 1982 but has had its greatest growth in recent years.
Officers of SDS, which is based at the University of Texas at Dallas, say its initials are no accident: As was the case with the ’60s-era Students for a Democratic Society, members intend their work to forge social change. Current issues that many members take every opportunity to flag include prenatal testing, abortion, and “physician-assisted suicide,” which most disability-studies researchers refer to as euthanasia, arguing that those who submit to it are almost always in a state of overwhelming hopelessness that could be relieved by other, supportive remedies.
Another sign of acceptance is that “Disability and Culture,” “History of Disability,” “Basic Concepts and Methodologies in Disabilities Research,” and similar courses are cropping up around the country. The country’s first Ph.D. program in disability studies is to begin next year at the University of Illinois at Chicago.
Even that modest acceptance has not been won without struggle-sometimes over the objections of feminists and other advocates of diversity, who have proved to be equally as resistant as many other groups are to disability perspectives. Disability-studies researchers have been more successful at including their perspectives in existing courses.
Accounts of the origins of a humanities approach to disability studies vary. The biological and cognitive-sciences models are well-established. In the early 1980s, the first signs of a cultural-studies approach emerged, generally with a social-science emphasis. Extensive work has been done on the nature of stigma, for example. At the annual meetings of the SDS, however, the social-science approach still predominates.
The work of the French philosopher Michel Foucault was essential to the development of a new take on disabilities. Among other things, he uncovered the unacknowledged imposition of power over people, that is inherent in the medicalized view of human beings. Many writers went on to advance the approach known as “body criticism,” the study of the ways in which cultures impose various meanings and conditions on the human body.
Some personal accounts, too, have been influential, providing new perceptions as they persuaded many researchers to press on to a formalized social critique. One of the first such works was Irving Kenneth Zola’s Missing Pieces: A Chronicle of Living with a Disability (Temple, 1982).
As an editor at Temple, Zola encouraged the press to expand its publications on disability. In 1988, it issued Women With Disabilities: Essays In Psychology, Culture, and Politics, edited by Michelle Fine and Adrienne Asch, which was acknowledged to have made groundbreaking connections between feminism and the study of disability.
Among contemporary writers of personal accounts of disability, the most influential is certainly Nancy Mairs, an Arizona-based author. She writes in a compellingly frank way about her disabilities, both physical and psychological. Her most recent book, Waist-High in the World (Beacon Press, 1997), describes her life with multiple sclerosis.
“On Being a Cripple,” an essay she wrote in 1986 that has been widely anthologized, prompted many researchers and activists with disabilities to emulate colleagues in queer studies who had seized upon old, derogatory terms to reflect social attitudes back at those who advanced them thoughtlessly.
For many, “cripple” and even “crip” have come to be insider terminology. Researchers say some performance artists with disabilities are plumbing “the history of delegitimization” to reclaim such terms — “gimp,” for instance.
Just as tellingly, many practitioners of the new disability studies strategically decline to detail the nature of their disabilities. “I tend not to say, because I think it’s a distraction,” explains Dr. Linton, of Hunter College. “It’s not totally irrelevant,” but often it is not the real issue, she says. “When I say I’m a disabled woman, I’m not talking about the fact I have an impairment. I’m talking about my identity.”
San Francisco State’s Dr. Longmore is convinced. He likes her argument in part because it gives him a reason to refuse to be the subject of any more feature stories that ask, in tones of amazement, “How does Paul Longmore do such and such? How does he write and prepare lectures?”
“People with disabilities are very resourceful, and they figure out ways to do things,” he says. “Let’s get on to more important questions.”
Copyright 1999, the Chronicle of Higher Education. Reprinted with permission.