Wednesday, May 4, 2011

Cure

Morning all.

If you've been around here a while, you know one of my pet peeves in novels with disabled characters is when an author "cures" the character's disability at the end of the book. I've argued mixed messages and realism.

But maybe I'm a hypocrite, because I am NOT one of those disability advocates who believes that a child with a disability should not be given every possibility to improve. Many people say the world should have to change--the disabled should not have to be "normal", because they have their own ways of giving back. This is SO true. Every person with a disability I've ever met has a unique worldview, and something that makes them so interesting to be around--just like every person. But that doesn't mean they shouldn't be given a chance to succeed even more.

This article in Disability Scoop details the possibilities of an antibiotic improving life for people with Fragile X syndrome. The findings might be able to be extrapolated and applied to other intellectual disabilities. When I read about the boy who is the focus of the article, the way he's now able to succeed in school and that his mother hopes he'll be able to "complete high school, have a job, an apartment, a girlfriend — with just a little help from family and social services." I was so happy for him. And to the people who argue that this is in some way forcing the kids under the umbrella of "normal" well...

I have a little brother. His name is Jacob and he's eleven. He's diagnosed as emotionally mentally handicapped, ADHD and epilepsy. He's a hilarious, loving, fun kid. When his ADHD meds were obviously overpowering his personality, we were quick to get him reevaluated. He wasn't Jacob, but if there were a medication that would reduce the amount of support he'll need to function in the adult world one day... yeah, I'd advocate for it. Because he says he wants to be a pilot. He wants to go to college. He wants to do so many things that are outside of his intellectual capacity--all the accomodations in the world can't change that. He deserves a chance to be the best person he can be.

I'm not anti-accomodation. The boy in the article still leaves class every thirty minutes to reduce the amount of sensory overload he gets in the classroom. Kids whose cerebral palsy has been helped by botox still use mobility aids. They're not cured, but they're helped.

Can anyone really say they don't want to help?

NOTE: I know this argument goes deeper in many cases. The Cochlear implant debate--over the implant which allows children with some forms of Deafness to hear--in the Deaf community has roots in the long-standing Deaf culture questions. I'm not qualified enough to speak on it, except to say this: immigrants want their children to learn the language of the native country as well as the mothertongue to give them the best chance at functioning within BOTH societies.

I think there are similarities, but I also think it's important to remember that not all forms of Deafness can be helped with the implant, just like Jacob's disability probably wouldn't be helped by this medication. So, should captioning and ASL and other accommodations be more widespread and improved OF COURSE. Not everything works for everyone, and maybe that's why I'm so anti-"cure" in literature. Because maybe it could happen, but it's not always going to happen and we must remember that.