News  Symposium panelists redefine disability

New perspectives on Culture, Medicine, & Law

Four McGill academics discussed ways in which they integrate disability into their curricula and research at ”Disability on Location,” a panel at McGill’s Disability Symposium, last Tuesday.

The Symposium’s keynote speaker Lennard Davis introduced the speakers by discussing how the field of disability studies integrates the perspectives of culture, medicine, and biotechnology.

“Trying to explain disability studies in five minutes is a bit like summarizing Proust,” joked Davis. “It raises questions about the nature of identity that other fields can but may not.”

Davis pointed out that in cultural disability studies, “Medical’ is sometimes used as a dirty word. But there are important alliances to be made between people with disabilities and the medical community.”

He added that the category of disability is malleable, and the idea of normality depends on “how close you shrink the tip of the bell curve.”

Davis also discussed the rise of identity studies in the last 34 to 40 years, and the way disability complicates the relationship between identity and the body – as disability exists in the body in very different way from other identity categories, such as race.

The first wave of disability studies aligned itself with other movements such as civil rights struggles and the gay pride movement. The second and third waves focused more on constituting its uniqueness as a category of affiliation.

James McDougall, professor of Psychology at McGill University, discussed legal issues and the hearing impaired. To be declared unfit to stand up in court, one must have a mental disorder; deaf people who do not communicate with sign language would thus pose an issue when on trial.

McDougall cited the example of a Bobby Suwarak, a deaf Nunavat man, to show the faults in our criminal code. He was charged with sexual harassment and was required to plead in court. His form of signing was not considered a language even though it is used commonly by deaf Inuit. Eventually, the court recognized it and found a translator, bringing recognition to the homegrown sign language.

Carolina Pineda discussed Lupus – an auto-immune disease that can attack any tissue or organ, and is most common in women and individuals of non-European descent – as an area of academic inquiry and shared her own personal experience battling the illness.

As an anthropologist, Pineda saw an opportunity to bring visibility to a disease that “holds little social currency, remaining unknown and unimaginable to many.”

Pineda’s talk rendered both the personal and private spheres significant, as well as the biological and social aspects of illness. Her study of disability perceives the body as readily imbued with meaning and particularity, rather than conceptualized “as a machine to be fixed.”

“I will not forget bodies because when you live with a body like mine, sore and tired, I think that would be hard to do,” she said.

Pineda demonstrated how Anthropology rarely mentions disability, and often privileges the able-bodied male as a model of society. Ethnographic research is perceived as weak if overly influenced by the researcher’s own cultural background, and the American Anthropological Association (AAA) also fails to encourage a rigourous academic inquiry. She referred to it as an “association that problematizes race, [yet] naturalizes disability.

“My silence has not protected me,” proclaimed Pineda, moved almost to tears. “It may have protected me from harsh judgements, given me complicity to the isolation… but with complicity there is no change”

Tara Flanagan of the Department of Educational and Counselling Psychology discussed this campaign and the efforts to reduce societal stigmas that are enforced by these types of media representations.

She showed how perceptions of autism centre on victimization of the autistic individual, depicting them as unable to speak for themselves or make fundamental life decisions.

A 2007 ad campaign by the New York Child Study Centre which attempted to raise awareness about psychiatric disabilities by personifying them as violent criminals, and leaving “ransom notes” for the parents of affected children.

One ad read, “We have your son. We will make sure he will not be able to care for himself or interact socially as long as he lives. This is only the beginning. Sincerely, Autism.”

The autistic community fought to end the ransom note campaign in an act of political self-determination, which countered the stereotype of individuals with autism as passive victims.

Carolyn Ells of McGill’s Biomedical Ethics Unit ended the conference with a speech on Intellectual and Developmental Disabilities.

Ells asked the audience to step away from a stark, individualistic view of self-determination and look to a general respect for the human subject that employs a more nuanced view of autonomy and power.