l’azile

Thursday night, I attended a euh, I guess you could call it a gathering, organised by University of the Streets at the Santropol Roulant. The theme of the evening was “Beyond a handicap: Are you and I really that different?“. Michael alerted me to this event and I was curious so despite being dead tired after a very long day and just really looking forward to ripping off my prosthesis as soon as I could, I made my way to St-Urbain street and participated in my first “conversation” (that is what all the cool kids are calling it these days).

About a dozen people participated in the evening: from what I could tell, four or five persons with disabilities, including myself and the two guest speakers, and about eight individuals without disabilities who had for the most part some kind of relationship with people with disabilities, whether professionally or personally.

It was all very pleasant and polite, which I guess is a good thing for these types of things. And I appreciated my evening and left with the sentiment that it had been worthwhile to go. Plus it was really nice seeing Michael again. But… I also felt frustrated by a few things and hopefully I can explain why without coming off as arrogant or insensitive or just odd.

The format was simple: the two guest speakers talked for a few minutes to kind of introduce the subject and then the facilitator started off the discussions where everyone could contribute.

The first guest speaker was Madeleine Picard, a woman with cerebral palsy who was born in 1928 and who is well placed to speak of a lifetime with disability and of how things have evolved in the last 80 years. Who, despite being born in a time when there was no such thing as “equal rights” and “inclusion” for people with disabilities, was able to become independent and make it all the way through to university and obviously beyond. I have to admit that I found her to be quite delicious. There is no other way to say this, she had spunk.

The second guest speaker was Robert Jean, who wrote a book called Les yeux pour le dire. Robert is quadraplegic and his condition prevents him from speaking but he has found a way, with the help of Marc, a life long friend and caregiver, of communicating with his eyes, using a system that, while seeming quite simple though surely demanding for both him and his interpreter, I can not begin to describe. And actually, I had already met Robert and Marc years ago when I was working for a local advocacy organisation and had gone out dancing with them at the Café Campus. But that was definitely another life and it was nice to see them again and to get this big blast from the past.

Anyway, they both started things off by talking a little about their lives and the obstacles they had had to overcome and the accomplishments they had put forth (and they were indeed many). And in the end, their message was essentially both the same: that regardless of their disability and the distinct experiences that they both had had throughout their lives, they were basically just like everybody else, they were not really different from the people in that room.

There were a lot of things they talked about that I could definitely identify with. I could totally understand having parents who pushed you harder because they wanted you to be able to fend for yourself, or how hard it is at times to live with the unrelenting gaze of so many people and how tedious, humiliating and/or total torture it is to have to ask for help, especially for things that, for most people, are just a blip on the radar screen. I could even understand that from a certain perspective, things have evolved regardless of the losses incurred along the way. And why one of the non-disabled participants preferred to talk about how “unique”, instead of different, we are.

And there were a few things in the ensuing discussion that I found interesting. At one point, Michael explained that some years ago, he had been diagnosed with Attention Deficit Disorder (ADD) and that at the time, he had found it quite liberating because, if I understood correctly, he felt like he finally had a reason to be ok with that part of himself, that he no longer had to conform to certain expectations. And indeed, I can truly identify with that, with finally gaining a better understanding of oneself and a license to be true to oneself. And there was a young woman who said that at times she wished her disability were more visible because then perhaps people at large would better understand her situation and her needs. And I could totally understand that because, depending on how well my health is, I am sometimes not identified as a person with a disability and it adds certain pressures that I simply can not, or should not even try to, live up to.

And there was also one person who kind of got on my nerves because a) she doled out a lot of misinformation that I did not feel like correcting because it just was not the time or place to do it (after all, everything was so pleasant and polite and all) and b) despite probably meaning well, had a very interventionnist attitude and I can smell those kinds of people ten miles away. So while I could have done without her comments, she was not the major reason I felt frustrated at times.

The truth is though that I came out of that evening feeling even more different than before going in. And although I do not necessarily see that as a bad thing, it was momentarily disconcerting.

I remember explaining to Michael a while ago that being a person with a disability from a very early age, I had lived most of my life being categorised as part of a very distinct group though, not really knowing other people with disabilities until my early twenties, I was also quite isolated and had to live up to other non-disabled people’s standards and expectations. In the early 90s, I started working for an advocacy group for persons with disabilities and this turned out to be a revelation for me. Through this job, I had found a community, my community and, although this is not something that was clearly articulated or openly promoted in my community at the time (well, certainly not in Québec anyway), I suddenly got the sense that being different was ok.

So for the last 20 years or so, I have felt a sense of belonging to this community in large part because of a particular commonality shared by its members. I am one of the 1 million people in this province and the 650 million people on this planet who, however multi-facetted and heterogeneous we are, on a certain level stray sufficiently enough away from the general accepted standard to warrant our own particular brand of “different”. And ever since I found my gang, I have always promoted, whether personally or professionally, the “right to be different”. As I said to the people at the gathering the other night, I believe that regardless of the similarities we share with our fellow human beings, on some fundamental levels, people with disabilities are different. And there should not be anything wrong with that. And moreover, only when the rest of the planet gets that, only when society truly recognises our right to be different will we make some real progress on so many levels.

And although I can not say it is all that surprising, once again I felt like I was on the fringe of my own community. Like I was pushing for something that many people with disabilities do not seem ready for or are maybe just not interested in. Indeed, I was hoping to hear things that went beyond the standard “we are just like you” sound byte. I was hoping discussions would go beyond inspirational life stories, reflections of courage, exercises in demystification, etc. Which is not to say that what was discussed was not valid or interesting and stuff but I feel like we are still stuck at the same place, that there is not really any profound debate and discussion in Québec on what it means to be disabled, on the particular journey that represents morally, spiritually, physically, politically, socially, culturally, etc.

It seems to me that 20 years later, I am still hearing the same recycled ideas that basically relate to getting the necessary services to accommodate disability in our quest for “a normal life”. And although accommodation is indeed something worth fighting for, I feel that disability is so much more than adapted transportation and home-care services, etc. Disability is an identity, it is a culture even and I believe that if we, as people with disabilities, can not accept, embrace even, that fundamental part of who we are, we surely can not expect others to do the same.

I left almost immediately after the meeting was over because my adapted transport was early and although we are often expected to wait up to an hour for them to show up, they certainly are not expected to wait for us even five minutes past our pick-up time. The driver was nice though and old songs from George Brassens played on the taxi radio. Along the way, we stopped by the Lucie-Bruneau Rehabilitation Centre to pick up another person. While the driver went inside and tried to find her, I took the opportunity to get out of the cab and have a smoke (yes, I know, I know, whatever). As I stood there in the cold night air, enveloped in the smells of autumn, maple leaves scattered all around me on the wet pavement, I thought about my evening and for some reason, I just felt really good. I felt good about who I am. Different and yeah, the same but different, damn it.