Thursday, August 02, 2007

Ow.

From the comments on this CNN story, by way of the fantastic Kay at The Gimp Parade blog:

My son was born 9 weeks early. At 6 months, his pediatirican indicated that he was not progressing as he should. This statement started the long journey to the diagnose of cerebral palsy, the endless hours of therapy and multiple procedures and surgeries. In a couple of weeks, my son will be turning 8 years old. We never made any allowances for his disability. We treated him like any other child. We worked with him constantly to learn the activities that come so easy for other children: feeding themselves, dressing themselves, walking, running, climbing stairs and riding a bike. Today after everything he has been through, you would never know that he was different. Has the hard work ended? Definitely not! It will always be a little harder for him to do certain activities. But he faces each new challenge with gusto and an outrageous sense of humor.
[Emphasis mine, comment edited for length, not editorial slant. please do go read it--the whole thread is well-written and thought-provoking]


Ow. Ow ow ow. From what this mom has written over at CNN, it's clear she is devoted to her son, thoughtful, and intelligent. I am so tempted to point out that her son will not always have an eight-year-old's resilient body and boundless energy. To caution her that many people with CP need more and more mobility aids and/or adaptations as they reach adulthood, and that her understandable pride in his passing as able-bodied(ow) might be better downplayed a little. To pose a question: Why does it feel like such a victory to avoid providing kids with CP "any allowances for [their] disability"?

I have decided to refrain from replying to this mom directly, because my own pain is too tied up with her story for me to be effective. I was an eight-year-old with CP once, full of gusto and tackling so many challenges. Her glowing pride and hopefulness is a perfect reflection of my father's, who once looked down at me as I walked beside him aided only by holding his hand--"You know, I bet people can hardly tell that you're handicapped."

I use a power chair these days. When I was thirteen, I finally told my dad the awful truth I had always known but had been afraid to articulate: I was a fraud--I didn't so much walk as fall forward in slow motion, sometimes interrupted by collapsing gratefully into a chair. I worried about falling down all the time. Besides, *gulp* walking wasn't really important to me anyway --I'd rather be able to go farther, to stop and start and "stand around" like able bodied people do.

I thought he'd be furious, or worse, heartbroken. He said something like, "Oh really? I had no idea." We got hold of a wheelchair pretty soon after that, but I was married, a mother, and divorced before I got my first ramp more than a decade later. I can see in hindsight how many social, educational and other opportunities I missed in my walking days, limited to the tiny territory I could cover on my feet. I don't hold it against my parents, but it does make me sad to realize how much more confident and independent I could have been, with accommodations.

If I had my way, I'd sit down with every parent of a newly-diagnosed kid with CP and draw them a picture--a neighborhood map marked with two circles--distance from home I can walk, and the distance from home I can go in my chair. Maybe it wouldn't mean anything to them, but I deeply, desperately want them to understand that appropriate adaptation is not defeat--it's freedom.

2 comments:

Sarah said...

I, myself, got diagnosed when I was 16. I fought using a wheelchair for way longer than necessary because I was afraid. I didn't want to be a victim of wheelchair prejudice. I did get some kind of pleasure from surviving without accommodations, but that's all I did, was survive. When I finally did get a wheelchair, I found I finally could live. I was no longer so tired all the time. I could live. As my health continues to degenerate, I have to remind myself that it is OK to get more help, even if it does have drawbacks; it is more important to live.

Philip. said...

Very interesting!