Early on into my life as a disabled person after pretty much everyone in my life knew that I was now a wheelchair user, I thought the work was done, I was officially out. But that wasn't quite true. I found that when Joe and I were invited to places or events where most of the people would be strangers to us, I would look for excuses not to go. It's not hard when you have a mobility disability to have an excuse for lack of attendance. 90 percent of the places we were invited to were not accessible, "So sorry, hope you understand." As for the other 10 percent of invites, there were other excuses, transportation being the big one, "So sorry, hope you understand."
It took me a while to figure out that the reason I didn't want to attend was that I didn't want to have to go through the experience of showing up disabled. I knew that it would be an issue in so far as people would see me, hold their faces for a second, mold their expressions into one of welcome, not shock, and then say hello. That briefest of pauses killed me. Now, I wasn't unused to being looked at differently because of my weight but, this was difference. The weight was about judgement, this was about value.
A visible difference, or multiple differences, draws attention. It's never really possible to determine what that attention will mean. So, it meant a lot of social work. Work to establish myself as having a place in a place to which I had been invited. It meant somehow, and I'm sorry for this but I was a baby disabled person, getting into the conversation that I work and have a career, that I'm in a relationship, that I contribute. I pushed forward all the parts of me that they would value in hopes that those things would make me worthy in their eyes. I craved that.
I even talked myself into believing that somehow I was doing the 'disabled' a favour. I was breaking stereotypes, even though I was, in fact, reinforcing them. But I did what I did in order to somehow survive the transition from walking to rolling which, if you remember my story, happened overnight. It helped me survive but it certainly didn't help me to thrive in my new life as a disabled person.
I am writing this because a few days ago I had a meeting with someone who didn't know me, hadn't seen me lecture, and who was only vaguely familiar with my work. He was looking to talk about a person with a disability who was in a bit of trouble with the law. He knew that I had done some work on sexuality and disability and wanted to ask some questions. He suggested we meet in the kind of restaurant that I would never go to.
Delicate and refined I am not. But I agreed. I put my notes in my Metro Canada 150 cloth grocery bag that hangs on the back of my chair and I headed off to my meeting. I only wear black jeans, haven't a single other colour or type of trousers in my closet. I wore a newish polo shirt, I'd looked the place up on line and chose a colour that matched the decor - I kid you not, don't forget I am gay.
Rolling through the door, it struck me, it wasn't there any more. I wasn't even slightly concerned about what his face would do, I wasn't even slightly concerned about working hard to be valued by him, it didn't matter. I was there to meet him, he was there to meet me. And I am I and me is me ... all the rest be damned.
I don't know when it ended, my desperation to prove myself worthy of dignity and respect, to prove myself valuable enough to take up public space, I wish I'd heard that particular death knell.
Shame dies quietly, I think.
And, because of that, of course, unmourned.