| Disability studies ...what is it? |
| "A new course: Disability pride" (By Rita Rubin, USA TODAY) To understand what disability studies is about, it is useful to consider what it's not about: Disability studies is not about building a better prosthesis. Disability studies is not about trying to cure paralysis. Disability studies is not about identifying genes that cause birth defects. Born of the disabilities-rights movement, the new field of disability studies takes a page from women's, African-American, and gay and lesbian studies. The Americans With Disabilities Act, which formally identified disability as a civil rights issue, turns a decade old Wednesday; disability studies in the humanities began to emerge a few years after the ADA's passage. The field turns the common perception of disability on its head. Instead of viewing disability as a problem that needs to be fixed, disability studies scholars, many of whom have disabilities, are focusing on its social and cultural context. "Our society's based around the concept that everybody has to be normal. What does it mean?" asks Lennard Davis, the new English department chairman at the University of Illinois at Chicago. Davis, who has no disability, became interested because of his parents' deafness. In a letter to college teachers interested in attending their summer institute on disability studies, Rosemarie Garland-Thomson and Paul Longmore - whose faculty features scholars in history, literature, philosophy, religion and rhetoric - explain the field's approach: "This view defines 'disability' not as a physical defect inherent in bodies (gender is not simply a matter of genitals), but rather as a way of interpreting human differences. In other words, we inspect 'disability' as a way of thinking about bodies rather than as something that is wrong with bodies." To the able-bodied, that might sound like a way of rationalizing an intolerable situation. "I've had people tell me, 'If I were you, I'd kill myself,'" says Garland-Thomson, who was born with a disability affecting her arms. "I think it's hard for a lot of people ... to wrap their mind around the idea that disability pride might exist, or that all people with disabilities don't want to be cured more than anything else in the world." For fear of calling attention to something that could be used against them, "many academics who have disabilities who have been in the academic world for many years have never mentioned or discussed their disability," she says. Thanks to the emergence of disability studies, she says, many of these academics are "coming out," a phrase borrowed from gay activists. Garland-Thomson says she had always noticed characters with disabilities in literature. She ventured into disability studies by writing an essay about such characters in the novels of Toni Morrison. Longmore, a San Francisco State University history professor who had polio as a child, is studying activism efforts on the part of people with different disabilities. On most college campuses, disability studies courses are scattered among departments, if they're offered at all. "Many of us have been doing this work because it seemed fresh and interesting and provocative to us, but we've been doing it in isolation," Garland-Thomson says. "If you're a Shakespearean, that network already exists for you." Three years ago, the University of Illinois at Chicago became the first -and so far, only - school to offer a doctorate in disability studies. Ten students will enter the program this fall. Syracuse University offers a master's in the field. "It's no longer dismissible as an irrelevant or marginal area of scholarship," says psychologist Simi Linton, head of the Disabilities Studies Project at Hunter College of the City University of New York. "The question is whether institutions will recognize the validity and value of the field and put the support toward it that it needs." But, as did women's, African-American and gay studies, Linton says, the field of disability studies has met with resistance from traditional academic disciplines, mainly medicine, rehabilitation and special education. "I think that occupational therapy and physical therapy and medicine are critical fields of inquiry, and they're very important," Linton says. "My critique is not of the fields themselves. It's of the fields purporting to tell the whole story." Linton and her colleagues argue that people with disabilities are a minority group, not just individuals. According to that line of thinking, society should be trying better to accommodate them, not fix them. "I personally don't begrudge Christopher Reeve his wish to be cured, nor any scientist for pursuing cures," Linton says. "What troubles me deeply is that that seems to dominate public discourse about what the response to disabilities should be." The notion that disability is not something that must be cured or prevented places disability scholars and activists at odds with feminists, says Garland-Thomson, who considers herself to be both. While feminists argue for reproductive choice, she says, society's prejudice against the disabled practically forces women to abort a fetus suspected of having a disability. "That doesn't mean that all disability activists would say there ought not to be genetic testing," she adds. The pendulum that had swung so far from the medical concept of disability may be inching back a bit, though. At the University of Illinois at Chicago, the program in disability studies is a collaboration between the department of disability and human development and two traditional health care departments: occupational therapy and physical therapy. Carol Gill, an assistant professor of disability and human development at the school, says some people with disabilities have asked of disability studies scholars: "Why have you thrown my body out of the equation?" CONTINUED... |