Nathan Chan is fascinated by the issues persons with disabilities face in the workplace and recognized the potential that persons with disabilities have through his undergraduate studies. Nathan holds a B. Commerce (concentrations in Human Resources/Organizational Behaviour and Entrepreneurship) from McGill University and a M.A. in Critical Disability Studies from York University. He has also co-produced a documentary, entitled “Disability and Society,” that serves as a commentary about how persons with disabilities have yet to be given full human rights. Nathan is currently working towards his PhD in Disability Studies at University of Illinois at Chicago.
Disability Studies, Huh? - Experiences in Higher Education as a Student in Disability Studies
Nathan Chan, PhD candidate, University of Illinois at Chicago
Nathan Chan presented his perspective on disability studies, beginning with some information about his own experience as a student with a disability. He noted that, even after discovering that his problems at school were rooted in learning disabilities and ADHD, he found it difficult to accept the accommodations that he was entitled to. In his traditional Chinese family, disability was equated with failure, shame, and problems. But, with the encouragement of guidance counselors and tutors, Chan was able to finish his degree.
A deep appreciation of diversity issues led Chan into disability studies. He noted, however, that disability was the hardest identity for him to accept on a personal level because of stigma and because his was an “invisible” identity.
To illustrate the diversity of perspectives on disability, Chan surveyed the audience for answers to the question “What is a disability?” Students and service providers gave a variety of responses. Chan noted that no universal consensus has emerged about what constitutes a disability. He reviewed the two predominant theoretical models analyzing disability: the medical model and the social model.
The medical model puts the “blame” on disability, viewing the person with a disability as a “problem” and suggesting that that person needs to adapt to the world. Disability is seen as the result of a physical condition, and the goal is to cure or manage the condition so that the person can have a “normal life.”
In the social model, the “blame” is shifted to society and the environment: people are disabled by socially constructed variables in the environment. For example, a person is not disabled because they cannot walk, but because they cannot enter a building.
Chan explained that, in one project, he surveyed people about their definitions of disability. Of the range of responses he received, the most interesting one, he said, suggested that a disability could be anything: “If you don’t have a pen in your class ... you’re disabled now, right?”
People with and without disabilities have narrow definitions of what counts as a disability. They typically associate the term with physical disabilities, said Chan. But using his understanding of the social model of disability, he explored several unconventional disabilities:
HIV/AIDS is still viewed as shameful and is associated with certain groups and behaviours. However, protection under law exists for people with everything from asymptomatic HIV to full-blown AIDS, and even for those simply perceived as having HIV/AIDS.
People who stutter are often typecast and fall into certain roles. Studies have found that these people have limited educational and employment opportunities.
People with psychiatric disabilities face barriers to service provision and low availability of services for independent living. The result is social isolation and a lack of financial resources.
In regard to people who are obese, Chan said that he was an investigator in a qualitative research study involving seven participants who had a body mass index above 30, to see whether they viewed their fatness as a disability. Many felt excluded from society, and they shied away from many activities. People who are fat face many barriers, including social barriers (such as being insulted by strangers) and physical ones (such as having to pay for two airplane seats on some airlines).
People with celiac disease also face disabling experiences. This autoimmune disease centers on an intolerance to gluten and requires a gluten-free diet. One important barrier is a lack of availability of gluten-free food. Another is the lack of understanding and awareness and the pressure to eat “normally” by friends and family.
All five conditions are unconventional disabilities. Some people in these groups do not consider themselves disabled, because disability is associated with shame, weakness, and stigma. Some do not feel that they belong to the disability community or “qualify” as being disabled. If they do associate with the community, they may be asked, “What is your disability? What are you doing here?”
Chan concluded that the field of disability studies “is not as rigid as you think.” It has been evolving over the last 30 years, expanding beyond conventional disabilities. People with unconventional disabilities also need to be sheltered under this common umbrella.
During the subsequent discussion, one participant asked how to conduct participatory action research in the most respectful way possible. Chan commented that one approach is to publish with the participants, who may even write parts of the publication. Chan and Hansen both emphasized the value of including the participants in every step of the project.