Monday, December 23, 2013

Disability front and center

The only times that my disability became a conversation point when I was growing up was when a little child would turn to their parent  and ask: "Why is he in a wheelchair/stroller?" And then after the guardian got uncomfortable for a second, it was perfectly satisfied with the answer: "Because he can't walk". I don't remember ever explaining what my condition was and what it meant to anyone in elementary school. I can't be sure if any of the teachers didn't take upon themselves to have a special conversation with the class, but I never had to answer any uncomfortable questions or deal with anyone staring at me. To that extent nobody had any problems with the way I was. I had limited mobility, I crawled or leaned on furniture to move around, I needed support under my arm to lift my self into a desk chair. I guess you could say it's because I've spent eight years with those kids- a normal length of Polish elementary school at the time- so they got used to it. But the it seemed to make no difference to any of the transfer students I befriended as well. I guess to all of us it was who I  am, my natural state, why would anyone had issues with it. Kids knew that I had limited mobility and knew I did things differently, but seemed to get used to it very quickly. As for me I've had nightmares about ending up in a wheelchair or ending up in a care facility from a very early age, but that was a fear of the future, of what will become of me and how will I manage if my parents are not there. But I  never had to worry about how people see me, what they think when they meet me, do they pity me or my mother. As much as I preferred not to have Cerebral Palsy I got used to it as did everyone around me. I can think of very few occasions when my disability became front and center. Once, I must have been about 11 when an older lady I've never met stopped me and mom. "I feel so bad for you"- she said. I guess my mother wanted to make sure I process the experience in the right way because I remember we had a conversation about it. "Why would she pity me? I feel sorry for her"- I said-" She's very old, doesn't have much time left and can barely move". My mother loved my response and it became one of the family stories we shared over a meal. But I guess at that point I also understood how people project - they make a bigger deal out of something they think they'd miss- like running, dancing, skiing- and they feel I should miss it too, when in reality some of those things I don't even like watching others do- and had no desire to do it myself. And for some reason - like that lady in our lobby- some think that their life is better than mine.

The schedule for my class was  primarily designed so we wouldn't have to switch rooms often. Teachers came to us and we'd mostly be in one place. Back then I insisted on sitting in a school desk chair like any other kid. If I needed to switch rooms my parents came after class as they had my schedule hanging in our living room. They'd just grab me under my arms and walk with me to the next location. But sometimes they were late. There was a boy, a year, maybe two older who was about to have a class in the  room mine just ended. We still had a few minutes and I was waiting for my parents to come and get me. The kid thought I was just trying his patience as I was still sitting in his spot. Not knowing I couldn't walk he came from behind and pulled the chair from under me as I fell to the ground. Friends who waited with me did nothing to explain, just said "Leave him alone". The boy panicked while I was fine and got back up on that chair. I guess he was profoundly affected by it because somehow he looked up our address and showed up at our door. He felt he needed to apologize, I suspect  he had a conversation with his parents and he felt bad. Awkward situation for both of us, I never had a boy bring me flowers before.

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