Cerebral Palsy is not a disease.
A few people have been sending me emails and leaving comments on this blog and I am thankful beyond words that my words have moved them to do so.
It’s still a bit bizzare to know that my words provoke emotion, that others are moved to comment. I think this is the wonderful thing about words and it’s what helps me to write this blog.
The fact that others reading it can know what it is like to have a disability, really know what it is like for someone living with one, that makes all of worth it.
Which brings me to some of the comments. I wanted to make sure that people understood, that they really comprehended what I have inside me, what rests inside my body.
Cerebral Palsy means brain paralysis. It is a disability that affects movement and the position of the body. It comes from brain damage from before the baby was born, during birth or as a baby.
The whole brain is not damaged, only parts of it and mainly the parts that control movement.
I just want to make sure that everyone knows it’s not a disease. While a disability can seem like a disease (and even I have called it so on this blog) it’s not. It’s a physical and mental disability that affects my life; one that I live with every day.
It’s funny; when I was younger and growing up I used to think of myself as damaged goods because of my having Cerebral Palsy. I used to wish and wish and WISH that I could be like others.
I would watch them walking and think to myself: I want to walk like them. I would admire my twins feet as he walked in front of me.
Heel toe. Heel toe. Heel toe.
Something as simple as walking properly, walking gracefully, seemed unobtainable to me. I kept thinking that maybe if I concentrated harder, if I found comfortable enough shoes, if I wished hard enough, I would be like everyone else.
It seems silly to me that something as simple, as casual as walking would set me apart from others; that it would isolate me and mark me, scar me on the inside and the outside.
But it did.
Adults can be cruel but children are even worse. They are taught by their parents to hate and criticise and shun anything that is different. And children can take to these beliefs with a vengence.
I remember waiting at the local mall in line to see a movie. I can’t remember the movie (and I wouldn’t want to date myself; I want to be ageless) but I remember walking towards my twin brother.
There were two kids, boys my age, that started walking with limps and they began to slap their hands against their chests and mumble as if they were incapable of proper speech. They were pointing and laughing at me and I felt much like the circus sideshow freaks might have felt: under a spotlight and hating the brightness of it.
I approached them and asked them what was so funny. They said it was the way I walked. “You look like a Jerrys kid,” one said. “You walk like a cripple.”
“I have Cerebral Palsy.” I told them. “I’m physically disabled.” My voice was quiet; anger seethed in me.
The two boys had the grace to look shamed. They apologized. “We didn’t know you really actually had a problem.” one said.
“Why should that make a difference?”
It’s taken me years not to view myself as damaged goods, as something that was made broken. As something that no one would want.
I no longer wish to walk like everyone else, though I still find it fascinating, watching how others walk; I just know that I don’t want to be like them anymore.
Instead, I think of myself as abled; not disabled.
For there is really nothing different about me at all.
I admire the fact that, even when in your youth, you had the moxie to confront people who were ignorant and say, “what do you find so amusing here” when they were mocking a person who had a disability. It’s not every adult who would have the power of self-confidence to do that. I find it incredible and admirable that a youth would do it. You constantly amaze me. And I think the memoir you’re preparing is going to inspire an awful lot of people.
I can’t wait to help you promote the stuffin’s out of it.
“Some days, I just want the dragon to win.”