Observations From Below: The Cure

I am often asked if I could be cured, would I choose to be cured? The reason I hesitate to answer is that it is a complicated one. I am securely on the fence, but don’t mistake that for ambivalence.  I am far from that. In my head, I see positives and negatives.  My answer has shifted throughout my life and will probably continue to do so.

As a young person, I was a definite yes. Kids aren’t always the nicest, for one thing.  At that point, I wanted to do everything that they were doing, not realizing that that notion was impractical and there was a much better use for my time and energy.

Later, I became a definite no, when I began attending disability rights activities for young people. I learned about disability pride. I began to see my disability as a strength and as a definite part of my identity that I can’t really get rid of anyway.

Now, I’m a definite maybe, which I know is an oxymoron, but I now see there is a way to split the difference between these two polar opposites. I and other people with disabilities (pwd) can be proud of having a disability, despite there being some parts that we don’t like.

In my case, one major drawback is my speech disability. Even with technology and those good things, it does make it hard to meet new people, and express ideas in such a way that people don’t make the assumption that I have an intellectual disability because my speech is hard to understand.

As an introvert, it is difficult to be so dependent on people. People cut into my “Me” time, which as we all know, important to us introverts. That’s why when my personal care assistant (pca) leaves, I normally hide out in my room. I feel bad for my family, but I have to recharge.

Of course, I don’t like ableism and the fact that the world isn’t built for people like me, especially not for people like me. In some ways, I’m even different from my own kind because I don’t have the intellectual component, which is an even smaller community of people that I fit in very well with.

I’m not saying that I don’t enjoy fighting for rights of all people with disabilities. I’m just acknowledging the fact that there is a smaller community that I can directly interact with.

I don’t like having to go to special therapists and do extra things that people without disabilities don’t have to do. Pain and discomfort is not at all fun, which is why I have to go to therapy. I’m damned if I do, and damned, if I don’t.

There is a much longer list of things that I like, though. I like being unique. Being unique has opened up opportunities for me. I’ve met famous athletes. I’ve been allowed into special places. I get into movies free sometimes. I don’t really know why. Not that I abuse it, but I can get away with a lot, although I try not to. This is an old example, but it popped into my head. I never once got an unexcused tardy slip in high school, even when I was actually late. One time I asked for a tardy slip and they still wouldn’t give it to me.

For a long time, I could cut to the front of the line at Disney. It wasn’t until people started exploiting this nicety that Disney changed their policy. Pwd got smart and offered themselves up to accompany people to Disney, so they didn’t have to wait in line. I don’t necessarily agree with it, but that is pretty darn smart. People with disabilities generally need the money and why not use every contact we have.

All of this being said, my maybe is more towards no than yes. In the case of Cerebral Palsy (CP), the disability comes from the brain, so to cure me, they would have to do something to my brain. I don’t know if this would mean some type of brain surgery or stem cell implant or something else. I don’t like the idea of somebody messing with my brain.

I know people who have had brain surgeries. Most of the time, it hasn’t worked.  What if it didn’t work or made things worse? With experimental things there are often unintended consequences. I like my brain. It’s almost all that I have in terms of having a way to make change and money. The brain is kinda important. Just ask Scarecrow.

I recently attended a Philosophy of Disability symposium. It was very interesting to watch intellectuals without visible disabilities grapple with the same questions. One professor came to almost the same answer as me. I met a professor that is legally blind. He still chooses to sometimes hide his blindness from everyone else. In a similar way, I often downplay mine. I can’t really hide it.

There were a lot of conversations about the medical model, which is that disability is the problem and the doctor can fix it. Then there is the social model, where the disability comes from societies responses. One professor, who I agree with, pointed out that both of these are problematic. The truth is somewhere in between. She calls it a Value Neutral Construction of Disability, meaning some parts of the disability can be negative and how society does play a role.

The idea of a cure is always going to be attractive to some elements of society. The grey area for society is that a cure is, and always will be, a personal choice. I wouldn’t wish a disability on someone. That is morbid. Disability is diversity. It happens. We need to treat people like me who live with a disability with respect and continue this conversation. There is no right or wrong answer.

That’s how I roll.