But Why You Wouldn't To?

This was the question I kept being asked today by a family member as we sat outside her front porch just talking. Let me start by saying that for those of you who don't know this already, my family is rather religious. My grandfather is a pastor and for many years ran a small church in the backwoods of Georgia, along with my grandmother who was the Church Mother. They in turn, kept telling my father that the calling of the Lord was on his life to be a pastor, and like Jonah, he fled all the way to the other side of life just trying to find a way to live his own life.

I find this incredibly ironic, considering how hellbent they've been in trying to ensure that I lead a life that is rather close to the one that they've decided for me, but hey, they're parents so what can you do? All of that is irrelvent to my point in this particular blog. I bring that up because our conversation started out rather innocently enough. We were talking about my upbringing and how nice it was that being black and growing up in nice white neighborhoods, I got exposed to a lot more things than many people in my same situation. But then, we started talking about my disability, and others might see us with it.

I was once told, that my disability has essentially shaped my family and that by my having it, it has changed the way that everyone in my family operates. In one such opinion, my Cerebral Palsy was responsible for the fact that my brother has grown to be really introverted. Apparently as the bigger brother, it was MY responsibility to teach him things like baseball, football, flirting with girls and how to drive a car, none of which I currently do.

That was how things started.

Then the conversation turned to how perhaps all of these things could've changed if perhaps I didn't have a disability, or more aptly, how if when I was growing up, if I had worked harder to become like a normal person (her words) then I could've done those things after all. And NOW we get to where things started to get heated.

Let me take a minute and say that when I was growing up, my parents used to take me to Shriner's Hospital a lot, and during those visits, the doctors repeated over and over (and I heard more times than I care to admit) that medicine could only do so much. That it was MY responsibility to do the excersizing and to endure the pain of physical therapy and so on and forth. That I had to WANT to walk like everyone else. But even as she was talking, something hit me. Why was she so fascinated on why I wanted to be like everyone else? As a person with Cerebral Palsy, what if I had instead, wanted to embrace the ideal that I was a person with a disability? Couldn't I have gotten therapy for THAT instead? And it came to that all-defining moment in which the title of this blog is, when she asked me: But why? Why Wouldn't You Want To Walk?

And this is the problem. Her question echoes the fundamental problem with society today. As she sat there looking at me with an absolutely puzzled expression on her face, I countered back, "What's wrong with being me? Being a person with a disability?" To which she responded, "But who would WANT to have a disability? I wouldn't want my child to have a disability." Now I'm not going to sit here and sat that I would want my child to be born with disability, but the way in which the answer was framed was put in such a way that would signify that to have a child with a disability, was to have something that was broken, or incomplete, or marred in such, that it was beyond the reach of living a normal life.

I stress that my family member did not mean anything by her responses. They were simply questions she uttered in the moment, and I realized that she is simply repeating what she hears from everyone else. In America, I think we need to have another conversation about disability. Not with doctors and insurance companies and therapists about how to fix a person's life, but rather we need to have a conversation with the PERSON to decide what it is they want to do.

It's a lot like when I was performing with the gay men's chorus that I sing with in D.C. in June. The artistic director refused to let me lay on the stage with everyone else (who was on the floor) because he felt, that by leaving me in my wheelchair, that he was in fact, "doing me a favor." I feel like this is essentially the attitude that the medical profession has when assessing someone's condition when it comes to them having a disability (and I mean this strictly in terms of the disability. If a person is born with a congenital heart defect, then OBVIOUSLY that person needs medical intervention.)

But I told her that if I were a parent, and my child had a disability, depending on the severity and the type of disability, when my child reached a certain age, rather than force various types of therapies, drugs and equipment on them, I'd prefer to have a candid conversation about the nature of the disability and their life. What did THEY want? What would I have to do as a parent to ensure that they had the life fulfilling to THEM? I just feel that people should be asking about how they can help a person feel their best, instead of how they be the perceived version of NORMAL.