I don’t want a cure for my Cerebral Palsy.
Of course I’d be for prevention - C.P. is mainly caused by dangerous stuff, kids.
But I don’t want to be able bodied. I don’t. I’d be totally different. Where would all my lessons be? Lessons I learned quickly, like:
- It’s OK if you can’t run that fast - everyone has limits
- If you look odd in the eyes of society because of something you can’t control, screw it. Tolerance for other people is important and I can’t control when my clonus happens or where my left eye rolls. If people are actually going to not talk to me just because of that, because of how I look—the ways I can’t control—they aren’t worth conversing with, anyway.
- Acceptance of different methods of communication. Too often, speaking is seen as the only way. There are communication boards, sign language, picture libraries, etc.
- Tolerance of others: economic status, physical abilities, cognitive abilities, etc.
Yes, able bodied people learn this, too, but I learned this pretty fast when I was the object of kid’s jeering or staring. Some people say that a disabled person who wants a cure because people are teasing them is a good idea/justifiable, but I don’t think so. Tolerance is extremely important, and we all have some physical limitation. Without disabled lives, there would be significantly less teaching about tolerance for those with different abilities. Oh, and by the way, anyone that teases someone should be made to read Moby Dick in one sitting.
While on the other hand, I do support research for a cure and stem cells.
For people with Usher Syndrome, they are born deaf and eventually become blind due to retinitis pigmentosa. They almost always want their vision back; I want the vision I lost back as well. However, I know what it’s like to see out of two eyes.
To equate the same conundrum of a person previously able bodied getting a disability, and a disabled person since birth, is not fair. This is all I know. I don’t understand able bodied quirks and I have alternatives for everything. This is all I know. It’s futile trying to make me understand that I would be better without C.P., because I don’t know. Nor can you make a judgment because you don’t have C.P. This is where the tolerance thing comes in.
A doctor is not necessarily a disabled person. They have studied it, but not lived it (you get my idea, I know disabled doctors—my favourite rehab doctor has C.P.). Don’t run to a doctor that’s able bodied and expect to get an accurate assessment of quality of life of a disabled individual, because they’re able bodied and don’t know.
That’s OK. I just expect them, and the rest of the able bodied community, to accept my own assessment of my quality of life and provide treatment for everything.
But wait - what if someone doesn’t think their quality of life is good?
Then they’re probably depressed. Under the Americans with Disabilities Act of 1990, disabled people are entitled to the same treatment—and the same right to refuse it—for depression.
If not, it’s worth asking if all symptoms are being controlled properly. I have a nerve injury that’s extremely painful. But, with pain management medications (all of which are over 500 dollars a month combined), I have a good quality of life.
And for G-d’s sakes, don’t piss on medical weed. If it helps manage the symptom, let them use it.
Rarely, when a person feels their quality of life is low, is it actually about the disability itself—but more about social factors. Teasing, feeling like you’re the only one, feeling a burden, etc.—those are disability issues and many can be resolved by becoming actively involved with other disabled people.
This is why I don’t support the MDA (Muscular Dystrophy Association), and do support United Cerebral Palsy. UCP aims more to help make sure that proper access is ensured, that tools and things manage the symptoms, etc.—rather than “fixing” it. Because a large portion of people in UCP have C.P., so they know life as a person with C.P. isn’t bad.
Not like I’m saying ditch cures—but it’s worth examining what’s the real problem. Spasms? Muscle relaxants, botox, baclofen pump. Teasing? The attitudes of the kids. Muscular Dystrophy is eventually fatal and at that point, can’t be managed—that’s why I support cures for people who want them.
Because remember, I’m going to get my vision back. Legally blind now, but with a way…I will get it back. But for now, let’s talk about my main fears of going blind: being locked in the dark with no support. Well, duh, there’s a rehab centre for the blind in Cincinnati. Driving? Public transportation (and if you wouldn’t ride it, improve it). Not looking “normal…” just an attitude all teenagers have.
So remember - think positively about disabled people’s quality of life. Because really, it’s not all that bad.
