Wednesday, February 6, 2013

Disability: other kids, confusing message

When I was eleven, perhaps twelve,  my mother would arrange play dates for me with other kids with my disability. She felt I needed yo have bonds with others "like me" whatever that meant. The problem was, that aside from being born prematurely, we've had very little in common. I was still in school, these children stayed at home. I read a lot,  played computer games, watched TV, was immersed in pop culture, they did none of that. It was always  very difficult for me to force myself to have a conversation with someone I have very little in common with. Cerebral Palsy alone is not enough to have a friendship. As a teenage boy I wanted to do what teenage boys did. Be around the cool kids. It took me years to understand, that to the girl from my apartment complex that rarely left her apartment perhaps I was the cool kid. When my parents insisted to take me to a regular public school, essentially carrying me up the stairs every week others followed. Many then given up and apparently some of those other kids ended up emotional and depressed. Imagine somebody wiggling a promise of a semi-normal life in front of front of you and then pulling it from under your feet because you're too big and to heavy. I was the only one of the kids with Cerebral Palsy that stayed and succeeded in a "normal" school. It was not only my smarts, it was my parents' will and the strength of their backs. As for other kids... We din't see each other much, a few times a year if that. I would always try to force some chit chat, not because I wanted to, but because  it was expected of me. My mom then would tell me their parents felt I seemed to feel be better than their children. That really wasn't the case. I just didn't know how to relate to them. Perhaps on some subcutaneous level I was scared I'd end up like that- trapped in a top story apartment without a friend to visit, maybe this was what I feared my life would be if my parents gave up on me. But realistically, I was just a kid.  I could play with the latest toy, my Game Boy or Atari, but not to have a discussion about life over tea. I was never mean, just never really into it. Now I feel I should have done something to make their life brighter. It is an accident, a lucky strike that I am were I am.  But to be quite honest the whole rehabilitation system wasn't something that helped me to come to terms with my disability. For the most of my life Cerebral Palsy felt like my enemy, something I had to beat through hours and hours of Conductive Education. Then, I was told to relate somehow to other kids "like me".  Then, my father told me, accusing me me of not being "ambitious" when he felt that I wasn't applying myself during my exercises, that I'll end up at home like those other kids, that I'll gain weight on nobody will visit me if I don't work harder. How can you have a coherent image of your disability, how can you come to terms with what it is, when on one hand you're told to rise above it and become "normal" with other kids used as examples to scare you while on the other you're told this is who you are, accept it. If I was confused about how to feel about Cerebral Palsy when I was ten or eleven I had a good reason to. But I don't think my mom was right. The odd thing was, when I was at the Peto Institute some of the other kids in my group where not only only my friends, but also  my first crushes. At Warsaw University I jumped at the chance to work with other students in wheelchairs when I joined Rector's disability advisory board. But quite frankly, I don't think the emotional maturity to deal with those issues when I was a little boy. I wasn't perfect. Even today, when I choose friends I go for people fun, spontaneous, energetic. My dad is very good at having a conversation about anything with anyone no matter how he detests them, while those who know me well can easily tell that I'm bored or forcing myself into a stretched out conversation.

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