Thursday, September 27, 2012

And nobody has to know.

I couldn't hide my disability if I tried. The wheelchair is usually the first thing you see. Even if I'm not in it you can tell by my posture, my movements, my spastic right hand and if you're skilled enough to spot these things, you'd know what I have without even asking. When I was 8 or 10 years old my mom used to put me in regular sits of buses and trams when my stroller was folded. I remember this one time very vividly when a women asked me once and then again to give up one place to one of the standing ladies. Obviously, she didn't know I couldn't walk. It became a bit of a funny story we would tell in the family, but it made me feel good. For once I was like everybody else. For that second in somebody's eyes I didn't have a disability. I wasn't somebody you pity, you feel sorry for, I wasn't one of "them". I was like everybody else. For once I didn't have to deal with and measure up to everyone else's idea of what it was  like to be me. For a lack of a better word I was normal.

I have friends with intellectual conditions that some choose not to reveal. Others are very open about it: This is what I have and these are the pills I take for it. They feel it's better for those around them to understand what they deal with, to see their limitations, to explain the very often unexplainable  behavior. Sometimes it's just a way to say: I'm fine with it. I have it, but it doesn't have me It's a choice, but they have a choice. My mom told be once that a young boy she knew told her that he envied me. Because, he explained people know what I have and they can feel for me. Sympathy is I think the wrong way for it, nobody wants to be looked at that way and patted on the head. Empathy is something everybody should have to try and understand the struggles that other people have. We all want to be appreciated, seen as capable professionals in the face of whatever life throws at us, So, "I feel so bad for you" isn't quite gonna cut it. A useless and patronizing emotion.

I have  friends who choose to hide her disability. Some have manic depression, some have  learning issues and anything between. You could say that it gets in the way of their careers. It interferes with the image they want to put out there. They don't want people to know because they don't want to have a label. They don't want people to feel sorry for them. They don't want to bring that kind of attention to themselves.  Nobody wants to be a story. Nobody wants to seem less capable. I also think coping with your disability means admitting you have limitations. Maybe you can't do it all, maybe you'll do some things differently. Admitting to the world, but mostly to yourself Even if they can't hide it, because they can't always hide it they prefer to be seen as erratic and unreasonable than to reveal something so personal. And  having some people know may help you. If you don't tell anyone then you're all alone in this. Just because you don't doesn't make it any less real. I had a friend who had a learning disability who was mistreated by our school. I've tried to convince him to see me as an attorney, if not me- then somebody else. He chose not to, I think for reasons having nothing to do with the strength of his case. He didn't want go through it, he didn't want attention, he didn't want to deal with  people's assumptions, others seeing them in a different light. But then, there are no guarantees in any legal action. He'd be stuck with consequences either way. I understand wanting to be private. It's not only about  the mental aspect. John W Quinn is the American born with Cerebral Palsy who hid it for 20 years during a Navy career and now writes books about it. Is it brave, is it fear or is it self preservation? Perhaps it just... is. I don't have a choice- I roll into a room and get people's attention. Would I be so guarded that I'd hide it if I could to the extent that I hurt myself? Who knows.

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