ragged edge magazine online



Issue 1


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Disability studies at the crossroads

By Mary Johnson

photo of books on disability studies

"Disability studies is about discrimination," Harlan Hahn, professor of political science at the University of Southern California, told the over 200 people who crowded into the National Press Club conference room in October.

"What is "disability studies?" What is its relationship to rehabilitation? Is it "studies" or "indoctrination?" Who should teach it? At last October's National Institute on Disability and Rehabilitation Research-hosted conference, "Disability Studies: A Global Perspective," the questions were raised but not answered.

Video of the conference sessions are available online for viewing with RealPlayer software (free; downloadable at site); there are captioned and un-captioned versions. Go to www.connectLive.com/events/disabilitystudies

"It's referred to as an 'emerging' field," panel moderator Carol Gill of the University of Chicago at Illinois told her audience. "That word gets attached to things that elude definition because they're complex, or because their parameters are open to interpretation, or because we know the thing in question is different from the more traditional things that it resembles, but we're not exactly sure how it differs."

Disability studies evolved along with the disability rights movement, David Pfeiffer, resident scholar at the University of Hawaii at Manoa, reminded the group. "Viewing the disability experience as one of discrimination is the most fruitful for both research and advocacy," he said. "It unifies both the disability movement and disability studies."

The disability rights movement has been "absolutely crucial" to the development of disability studies in Britain as well, said Mike Oliver of the University of Greenwich, "providing the main ideas and shaping the academic agenda.

"But as disability studies becomes codified and encapsulated and buoyed by its own success, it spawns conferences like this one," he continued. "The very point at which women's studies was accepted as a legitimate academic discipline in its own right was precisely the point at which it seemed to lose its radical, cutting edge."

David Mitchell, an associate professor in the Department of Disability and Human Development at the University of Illinois at Chicago, questioned whether the field of disability studies would be able to evolve without "oppressing those it studies." Mitchell, like many of the speakers, was a past president of the Society for Disability Studies, or SDS. The group had the same acronym as the 1960s radical student group, Students for a Democratic Society. "It was not by accident that the Society for Disability Studies chose that name" with its imitative acronym, Wellesley college bioethicist and former SDS president Adrienne Asch told the group.

Disability studies "has to be based in our own experiences, and that means that we, disabled people, have some priority, some privilege, in writing about and theorizing about and teaching about disability," said Hahn.

"We have an 'experience' that hardly anybody else has. With the emergence of chronic health conditions as a medical priority, we can offer a wealth of material on how to get from here to there -- we can tell future generations how to resolve these questions. And it's terribly important that we keep this notion central."

You could look it up . . .

It may be an emerging academic field, but it's hard to find online.

"Disabilitystudies.org" isn't even a website yet. The www.disabilitystudies.com site is home to Disability Studies Online Magazine. SDS.org takes you to a religious organization; SDS. com is a technology company. The Society for Disability Studies' official website -- www.uic.edu/orgs/sds/ -- is anything but intuitive.

And it's nearly impossible to locate disability studies departments on university websites. At some schools, it's part of the Rehabilitation Department, part of the medical college. At others, it's under Sociology, or Political Science, or Humanities. At a number of universities, "university affiliated programs" on developmental disabilities host the school's disability studies program. In yet other places, it's part of the speech therapy department.

"We can't pretend that rehab science and disability studies are just different ways of saying the same thing -- in fact they are really at loggerheads," said Oliver.

"It's a war," said Thomas Strax, Medical Director of the RFK Johnson Rehabilitation Institute in Edison, New Jersey, "and you're either on one side or the other."

"In trying to speak to two communities, the academy and disabled people, disability studies faces the difficult task of producing work that the disabled person on the street will understand as well as trying to satisfy the academy of its academic credentials," said Oliver, who edits the British academic journal Disability and Society. "Writing for two such diverse audiences is not always easy and disability studies has not always succeeded."

"We talk about a 'disability community,'" Asch told the conference. "But we have to face the fact that plenty of people who have impairments don't think of themselves as part of the disability community; don't know of it; and don't want to be part of it. Yet they too have things to tell us; we are studying this group of people as well.

"We need to spend less time arguing about 'who has the right model' and more time figuring out where each model works best in which situations."

We've heard a lot about how we should teach but we do not talk about what we teach," Hahn observed at the meeting's end. The conference had heard panelists discuss access, administration issues, and concerns that online "distance learning" might be used to duck campus accessibility issues. They'd heard discussions on disability studies in developing nations, where the issues, they were told, were quite different. But there had been a "serious lack of discussion as to the content of disability studies," Hahn pointed out.

"What are the substantive issues of disability studies?" he asked. "We have talked all around that; but we have not addressed this central issue.

"I have a serious concern that this may be about an effort to steal our name," he continued. "We have an established body of literature in disability studies that is quite different than the literature of rehabilitation. I find very little relation between the two. And I think the worst possible outcome of this conference was that we talked about disability studies and rehabilitation and we confused people with the idea that they have something in common."

Earlier in the day, the World Institute on Disability's Simi Litvak had remarked that she feared disability studies would "come to be like 'independent living,' where we have nursing homes that are called 'independent living centers.'"

"There's almost come to be a consensus that disability is a detriment to the 'quality of life,'" said Hahn, who last year received a NIDRR Switzer Fellowship to study the use of "quality of life" measures. "A lot of people think that the 'solution' to disability is to 'cure 'em or kill 'em.'

"This is why the experience of people with disabilities needs to be at the core of the discipline."

"Disability studies has got to get off its backside and do something to change the conditions in which people with disabilities find themselves," said Oliver. "The purpose of disability studies is to change the world."

Mary Johnson is editor of Ragged Edge magazine.



At the 3-day conference on Disability Studies, more than one speaker noted the need for academic rigor to forestall critics.. And the newly emerging field certainly has its share of those. Scholar Leonard Cassuto wrote to the Chronicle of Higher Education that the field needed "to choose openness as the way to legitimacy. " Salon.com writer Norah Vincent called disability studies theory a "surreal ideology," "useless to disabled people" and "self-contradictory."

"Does the empowerment model enlighten us about disability's real role in the lives of individuals and society? Or does it simply obfuscate an unpleasant truth with feel-good oxymorons?" she wrote in her Aug. 18, 1999 story.


When establishing a disability studies program at a university, one needs to ask...

  • What's in it for the institution? Colleges and universities no longer establish new programs just because they're a good idea. The general worth of the proposition isn't good enough. You have to know the strategic plan for the university, and be able to show how this fits into it.

  • How will the program attract new resources? How will a disability studies program bring in revenue through grants, contracts and increased tuition?

  • How will the program attract new and highly qualified students? Enrollments and SAT scores count.

  • How will the program raise the level of scholarship at the institution? It must insure that the scholarship generated by the faculty of the new program will be excellent.

  • How will the program increase the institution's national, international reputation? We must hire the most visible scholars.

  • Will the proposed structures be flexible enough to promote interdisciplinary study? We must be able to attract scholars from varied fields. Virtual structures tend to promote interdisciplinary approaches.

    Edna Mora Symanski, Dean, College of Education,
    University of Maryland


    There are programs in disability studies . . .


  • Ryerson Polytechnic University


  • Suffolk University
  • University of London
  • University of Leeds
  • University of Sheffield

    IN THE U.S. AT

  • Georgetown University
  • Northern Arizona University
  • Syracuse University
  • Temple University
  • University of Arkansas
  • University of Hawaii at Manoa
  • University of Illinois at Chicago
  • University of Maine-Orono

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