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.
This is not a comment about today's blog. Recently my husband became a wheelchair user. My problem is that if we go out to a store or restaurant and he needs to use the bathroom he needs my assistance. Do we use the men's room or the woman's room? Do we seek the assistance of the manager to "stand guard" to warn others entering the facility? Most places do not have a family restroom. Any suggestions are appreciated.
ReplyDeleteThe realization that you are moving 'deeper and deeper" into your life - to paraphrase Mary Oliver - is powerful.
ReplyDeleteSitting here smiling.
ReplyDeleteI know when I've hit certain milestones like that; others have been lost to the mists of time.
When you're different - something I can't help being - you eventually get used to it. Then you try something new, where you're STILL different, and it comes again.
The writing milestones have happened in the last five years, so I noticed them, and wrote them down, but many of the others only come into memory when something triggers them.
Hope you enjoyed your meal, too. And were able to help.
I admit I like to somehow make it known in a conversation with people I don't know that I work because I know it is not expected. Just to somehow get it out there, which is usually pretty easy to do, lots of people discuss work. Sometimes still feel uneasy when I am going to meet people who do not know I use a wheelchair but I think I can hide it. I am sure there is a difference in my demeanor from when I first became disabled. For instance, at my last job interview. I did not expect it to affect my getting the job, I have a needed skill and wheelchair use is irrelevant to the job, but I am sure they were surprised. For the lady who it not sure what do do about her husband using the restroom, I am not sure too as I don't need assistance in the restroom but I guess in the absence of a family restroom notify a staff member of his need for assistance from you and privacy.
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