When I was 18, I was diagnosed as being autistic. I finally had an explanation for all the social misunderstanding and interpersonal faux pas I’d experienced. I now knew that every time I was punished for some mysterious crime with the all too frequent admonishment ‘It’s not what you said, it’s how you said it” were not my fault. All those hours spent relegated to my bedroom wracking my brain to try and figure out why I was even in trouble suddenly made sense. Diagnosis for me was freeing. It was, however, still a diagnosis which said that I was medically predisposed to be terrible at navigating social situations, particularly in new environments with people I didn’t know.
So, obviously three months later I got on a plane to BC with the full knowledge and intention of moving into a house with eleven strangers.
I did this through a government-funded program called Katimavik which took Canadian or permanent resident youths (between 17-21) from all over Canada and divided them into groups of 11 and over the course of nine months placed them in three communities throughout Canada with a different project leader in each location. The intention was for us to do full-time volunteer work, establish strong links to volunteerism and engage with the varied culture of Canada by immersing ourselves in the communities in which we lived.
It was without question one of the most important experiences of my life. I can say without doubt that I would not be the person I am today without having done it or having known my housemates.
Nearly 12 years later though, I am conflicted about my experiences in Katimavik because I almost didn’t qualify to participate and because I know many more disabled people were denied access to that opportunity.
I have sat quietly with my discomfort over the fact that I was privileged enough to be considered “not disabled enough” to not be deemed ineligible. I was able to do this largely because not long after I left the program, the Conservative government defunded it. First rolling back funding so that it was a ghost of what it had once been and then ultimately shutting it down altogether.
The Conservative government is no more though and the Liberal government led by Justin Trudeau (who was a staunch supporter of Katimavik in his pre-politics days) has reinstated the funding.
Katimavik was originally conceived of in the 1970s. It’s 2018 and I fear the discrimination that was built into the original program with remain in its rebirth.
This is significant not only for the injustice of denying disabled youths the chance at this kind of formative experience but because of the opportunities it leads to.
Prior to Katimavik, I was completely unemployable. I spent the first year after high school futily looking for a job to pay for university. I didn’t find one. I mostly spent the year playing housekeeper for my grandmother. She did pay me but was also clearly more interested in having company. So I did very little work as she constantly derailed my attempts to clean with conversation. I maybe worked 1 hour in every 5 spent at her house. I was only paid for what I worked. I made almost no money.
After Katimavik, with a resume that had been boosted by the volunteer work that I had put in at an elementary school, an employment centre, and a publicly run internet café (many people in the area didn’t have access to computers much less the internet) I found work (of the retail variety) relatively easily.
Katimavik gave me the skills and work history necessary to do that. My physically disabled, undiagnosed autistic self was otherwise just utterly unemployable. This is a reality for far too many disabled people.
One of the great perks of Katimavik is that if you get in, you are guaranteed work throughout the program. It’s just unfortunate that the program aggressively screens out disabled people. I almost didn’t make it in.
They successfully hid behind the fact that the houses were inaccessible as were many of the work placements. An argument that I suspect was helped by the fact that so much of the infrastructure for the program was conceived of and implemented well before the Charter of Rights and Freedoms was added to the constitution.
Will that argument still get made in 2018? When they have the chance to start from scratch?
Part of qualifying for Katimavik hinged on passing a medical inspection. You had to get a doctor to fill out a long and detailed form that was then reviewed by the program itself.
It had questions like:
Do you (the doctor) have any reason to believe this person would have difficulty participating in physical activity?
Does the patient have any disabling conditions? Please describe limitations.
Anyone who used a wheelchair was immediately screened out. My cerebral palsy threw them and they assumed that my doctor must be lying or misrepresenting my physical capabilities. So I had to answer clarifying questions like:
Can you walk? (apparently, by not expressly saying that I could, they assumed that I couldn’t)
Can you run?
Can you swim? (I can, but it seems irrelevant because the nondisabled participants weren’t asked to confirm this and at least one of my nondisabled housemates couldn’t)
These types of questions do two things. They show that people will always assume inability from disabled people if the ability isn’t clearly stated even if other questions directly asking about physical limitations are also answered in ways that indicate ability. It also forced me to confirm that “I wasn’t that kind of disabled”.
As it was, my autism diagnosis came after I had jumped through those hoops so had again had to prove that I could participate. This time by acquiring a letter from the diagnosing psychiatrist saying that I was safe to be around children. A concern that didn’t exist prediagnosis.
I went through all of those indignities and I can’t claim that I didn’t know other disabled people weren’t making the cut. I had read a news story (that I, unfortunately, can’t find anymore) about a wheelchair user who tried and failed to force the program into accepting him.
I knew, that the program excluded other disabled people. I knew that but I went anyway. I went anyway and I reaped the benefits of the experience both at work and in the relationships I created with the people I met.
I absolutely would not be who I am now if I hadn’t. I probably wouldn’t be here feeling discomfort at the benefits of being not disabled enough to exclude.
I am uncomfortable though and Katimavik is back so that discomfort matters. It matters because I know what I got out of the program. I know I wouldn’t have a Masters degree. I wouldn’t be a PhD student.
Disabled people need access to coming of age experiences. Not just the work experience. The lived experience of navigating cohabitation with too many strangers in too small of a house. The experiences of misunderstandings and fights and learning to create boundaries.
Katimavik has always been fundamentally about creating a quintessential Canadian experience and by actively excluding disabled people, it reinforces how not apart of Canada we are unless we fit a narrow standard of “able-bodied enough” and a willingness to leave other disabled people behind.
It’s 2018 and I hope the new Katimavik does better but honestly, I’m not holding my breath.
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