Monday, July 26, 2010

Evidence

The theme of this month’s Disability Blog Carnival is Evidence. This comes up a lot for me, but I’ve never thought of it in that term. One example is providing evidence to parents of kids without disabilities that my son, when out and about walking with his crutches, constantly gets stared at. “But he is sooo cute—that’s why they stare! I’d stare, too, because he is sooooo cute!” is the main explanation I get. This makes me second guess it, too, because I know he is the most handsome boy who ever lived! Yet I still notice that when he is sitting down at a table and no one sees the crutches, no one is swooning over his movie star good looks. They only look up and have their eyes popping out of their heads when he starts to walk. They only offer alms for the poor handicapped boy ughghh and ask Jesus to cure him UGHGHGH when they see him walk.

Oh but wait, to them, he can’t actually walk. “Why can’t he walk?” kids often say as he walks by. When he used to use a walker, we’d get this question a lot: “Why is he WALKING with that WALKER? Can’t he WALK?” “Uh, he is walking,” I’d reply. “See him?” More evidence I must present—one foot in front of the other equals walking.

I also feel like I have to provide evidence that he is doing well, that no one should feel sorry for him or for us. That would be terrible to me, if anyone pitied him. So I have promoted him as being totally all good, well behaved, and happy at all times. Because if he isn’t happy all the time or if he misbehaves, won’t people think he “hasn’t accepted his disability?” That he “hates being different?” Won’t they think he isn’t that inspirational disabled person we all prize so much but instead is a “miserable cripple” who “hasn’t accepted his fate?” Well guess what, a confession—he sometimes has his meltdowns, too. But the meltdowns are not over having to wear braces or walking with crutches. They are about regular kid things like when we make him stop playing video games or when we tell him it’s time to go to bed.

Then at his school, I have to provide conflicting evidence. He just finished kindergarten, so last year I had to present evidence that he was capable of being independent in a classroom and throughout the school building. But I had to temper this evidence with his being too well off because we didn’t want to lose his physical therapy time. The PTs presented evidence that he was doing so much better than expected, that he is “extraordinarily functional for his level of impairment.” I felt like I had to tone that down somewhat and present evidence that perhaps his keeping active through PT and other exercise is what is keeping him so functional. It’s hard because I want people to know he’s doing well, but I don’t want them to think he’s doing so well so that we lose the supports that are perhaps contributing to how well he’s doing. Phew.

Overall, all this evidence providing is exhausting. I think sometimes if we didn’t have to do all this, what would we be doing? What would fill our time? Could we just exist in the world, not so much under the lens that we seem to be under from medical professionals, the school system, and the Stare Patrol? We are doing well but would do a lot better without all this pressure. I rest my case.

1 comment:

Spaz Girl said...

It is a peculiar catch-22, being disabled but not disabled enough for services. Often you have to make yourself (or your child, if you're a parent) seem more disabled then you really are, because if you don't, there's no support. It's extraordinarily frustrating.