Disability Studies: huh? – My experiences in higher education as a student in Disability Studies Nathan Chan PhD student in Disability Studies University of Illinois at Chicago

A bit about myself… Person w/ invisible disability – learning disabilities & ADHD Registered w/ disability student service centre I use accommodations in my schooling From traditional Chinese family Disability = failure, shame, problems!

What led me to disability studies? Interest & deep appreciation in diversity issues Took courses that developed my appreciation for different types of diversity that I embodied Disability – hardest identity for me to accept because of stigma & also invisible disability

What is a disability? No universal consensus of what constitutes a disability Medical Model of Disability Blame on disability Goal: cure, fix, manage illness so person can be “normal again” Social Model of Disability Blame on society & environment People are disabled by socially constructed variables in environment

Disability and Society (film I co-produced) Q: What is a disability? A: Yikes, I don’t know how to answer that A: Something that prevents you from doing what you want to do. A: Anyone who is not a white Anglo-Saxon male A: I dunno, really, it can be anything really. If you’re in your class and you’re ‘disabled’ now right?

Disability and Society People w/ and w/o disabilities have a narrow definition as what “counts” as a disability What counts? Amputees, people who use wheelchairs, crutches, canes

The research undertakings I will talk about today involve: People with HIV/AIDS People who Stutter People with Psychiatric Disabilities People who are Fat People with Celiac Disease

People with HIV/AIDS (Masters Thesis) HIV/AIDS viewed as shameful Associated w/ certain behaviours & minority groups Protection exists under laws for people with: asymptomatic HIV, full blown AIDS, perceived to be infected w/ HIV/AIDS

People who Stutter (Literature Review) Type-casted Contrive individual relationships to gain entry into group Role entrapment:Token Identification, Clown Negatively affected performance evaluation Limited educational opportunities Found to be less competent than peers/colleagues Judged as afraid, tense, nervous, immature, unconfident, uneducated

People w/ Psychiatric Disabilities Low availability of services for people to live independently Barriers at service provision & public policy- level Barriers: social isolation, loss of social networks, rejection by friends/family, lack of financial resources, limited opportunities for socialization (collaborative project)

People who are Fat Participants w/ BMI > 30 Perceptions of fat: disgusting, comical, hideous, dirty Barriers: Social Told to lose weight “Who would want to have sex with you?” Physical: chairs w/arms, restaurant booths Fat persons must pay for two airplane seats on flights ( Co-principal investigator, Qualitative Research Study)

People with Celiac Disease (Mentor) Autoimmune disease, intolerance to gluten Require a gluten-free diet Low availability of gluten-free food Lack of understanding & awareness of celiac disease (family, friends, etc) Gluten-free products 6-7X more expensive Poorly labeled products Pressured to eat “normally”

Summary All five research projects surround unconventional disabilities Sometimes they do not consider themselves ‘disabled’  disability associated w/ shame, weakness, stigma Do not feel they belong to disability community What is your disability? What are you doing here? Uncomfortable with using disability laws, disability identity, and marching w/ Disability Pride Parade

So Disability Studies? Flexible Not as rigid as you think Evolving over last 30 years Inclusion of ppl w/ unconventional disabilities Work together! Join forces!

I leave you with two quotes… “There is a hierarchy of disability, and if you have a spinal cord injury, you are the king. If you have invisible disabilities, people tend to look at you suspect, but I still think that people with disabilities will look at [people with invisible disabilities] with the same sort of humph.” “I think there’s a certain hierarchy. We [people with unconventional disabilities] are like low men on the totem pole.”