Zander's Place

June 4, 2008

I've been engaged in discussion with someone via email over how Cerebral Palsy affects me. And it wasn't the stupid questions like, "Why do you walk funny? Did other kids make fun of you?" Nor did he do the whole, "Oh wow, you're so brave and inspirational." bullshit.

It was real discussion, and for the very first time in a discussion on disability, my thoughts could be properly articulated and heard and read and understood. I was understood for the first time in 21 years.

I was asked to elaborate on my negative experiences with physical therapy growing up, and this guy, unlike others, was not judging or blaming me for any part of those experiences. But I also made sure to emphasize what good PT had done for me when it was done correctly.

We discussed my gait, mobility aides, how able-bodied people, including most physical and occupational therapists can't or won't understand how emotionally and physically taxing it is to be disabled.

Currently, I'm on the search for a CP community that consists of folks above the age of 12. Moreso, I want to find people who are not in treatment, who won't judge me or invalidate mine or anyone elses' feelings towards everything being disabled encompasses.

My interviewer asked me if I had ever studied physical therapy or any particular field of medicine and it made me laugh. I'm supposed to be mentally retarded. Well, I'm supposed to be, and I'm not supposed to be. Most cases, as I told the guy, whose name is Dave, people think that if a CP patient can walk, then the rest of the problems they have will disappear and all will be right and 'normal' with them. That is the goal. Not necessarily to maintain or just slightly improve range of motion and speech, but to make us all normal. At age seven, my IQ tested at 75, which was supposed to mean that I was going to be "stupid" all of my life. More testing showed, at age 7 still, I had the reading level of a third grader. So logically, if I just pushed myself and stopped being 'lazy,' I could optain an IQ of 500 or something. I barely graduated high school a month late.

I never had anything to do with physical therapy outside of my treatment for several years. Why would I when for so long questions concerning it seemed forbidden? I always had to just shut up and do the exercises because my walking funny was so horrible, and doctors threatened eternal ridicule from my peers at school. And there was ridicule. Hell, my classmates were all assholes. But that's another thing that I think needs to change is that people need to learn that disability is not just some poor, pathetic, dependant cripple in a wheelchair. And I hated their taunts and grilling sessions but I hated the physical therapy too. I hated not being able to educate people on my disability. I hated being expected to be "normal" and I feel my enrollment in "normal" classes was a plan by my parents to push me to be something that I can't and don't want to be.

And disability doesn't have to mean that a person will live a horrible and unfulfilling life. If our lives do suck at all, it's because of the people that enforce that sentence. You know what? It's not horrible and unfulfilling that I walk with a cane, and it's not horrible that I have cognitive delay problems, and it's not horrible that I need this and that accommodation and alterrations just to live independantly. But it is horrible that I'm seen as brave for being disabled, or I'm lazy for not putting myself through treatment so that I can walk a little straighter and look a little more "normal" so all the other "normal" people won't stare so much and be made uncomfortable.

I want to yell these thoughts from the rooftops and speak at hospitals and talk to kids and parents who deal with CP so that they can feel, for once, that it's okay to be crippled, and they don't HAVE do physical or occupational therapy if that's not what they want. I want to tell kids what I was never told. I want them to think about wheelchairs not as a death sentence, but a cool way to stay active. And mostly, I want people to be able to call doctors out on their crap when it's obvious they're spewing it.

When I was 14 I started wishing I could be in a wheelchair so my family and doctors would get off my back about my exercises. Now, I can't wait for that day to come so that maybe I could get into sports, like bike riding and baseball and stuff I really couldn't do well because I couldn't run or balance properly. This is what I want. I don't want to run marathons or try to obtain the goal of being a calculus teacher when I can only do basic math. I want to be proud in my disabilities and let go of the shame and guilt forced upon me. I want to live my life and prove that I am not a pathetic, retarded cripple.

Please do not copy without my permission!