Please Pass The Tube

I’ve got some recent criticism for not being as happy as I usually am, but I’ve also gotten some praise for being honest. So I am going to continue to speak my truth.

Back in 2001 I was having a philosophical conversation with my friends Grant and Stouty. Grant (T12) and Stouty (T6-T7) happen to have spinal cord injuries. They were both envious of the fact that I didn’t have to catheterize in order to go to the bathroom.

I told them I would gladly catheterize if it meant I could have full use of my hands. I would like to amend that comment nearly eight years later. I would catheterize with pleasure everyday for the rest of my life if people really understood what my hands were and were not capable of.

I am tired of everyone thinking I am just some stupid CP. Every time I mess up it’s because I’m stupid, every time I do something good it is because I have so much function.

Back in early 2008 I had the rugby game of my life to that point. I scored the game tying goal with 3 seconds left to send it into overtime and scored the game winning goal in overtime. Afterwards one of the refs came up to me and said “Man you have a lot of function for a CP.” Is it possible that I’m just a good player? No.

I swear on my life I have below average function for someone with CP. I have worked my butt off since I was nine years old to get every ounce out of my body and I am extremely tired of being punished for it.

Every classification system I can think of is based on the medical world and this is where the problem lies. The medical world has been making terrible assumptions for a long time and it has to stop.

When I was four years old I went to therapy four times a week. At some point I remember just collapsing. I was so tired and so sore I couldn’t stop crying. In my four year old head I was lazy and stupid because I had to go down to therapy twice a week and I still couldn’t walk.

Then when I was seven we did 17 reconstructive surgeries in a very short period of time. During the rehab a substitute therapist pushed me way too hard. It hurt so badly and she wouldn’t let me sit down. I literally punched her in the head four or five times until she would let me sit down. If that wasn’t hard enough my leg reconstruction was cutting edge at the time, so I was the topic at some lecture. Dr. James Fisk actually had the audacity to say I would never live on my own, drive a car or walk. Two of three isn’t bad :) Remember I was SEVEN and sitting right there in the front row. That is emotional child abuse.

I have no idea if that is still happening today, but from talking to many other people with cerebral palsy over the last few weeks I have concluded that it happened for many more years after my formative years.

You can’t miraculously make cerebral palsy go away. I worked and worked and worked and my legs didn’t work and my hands didn’t work. The medical community stripped away my self esteem one session at a time. You don’t grow out of an injury no matter what the origin.

It is a wrong premise that has to stop today. A very experienced rugby player told me if you play like a certain class after three years of hard work you are that class. Same thing is true with therapy, if a kid can’t do something after five years, adapt, don’t just keep pushing. Therapists tried to get me to walk up until I was 16. My four year old self was a genius for just stopping and crying. In twelve plus years it never got any less painful.

No matter what you are going through long sustained pain is a sign to change or reevaluate. Pain is bad.

I know I don’t have medical credentials, but I have lived my life and that should count for a lot. The sad thing is, as I talk to more people with cerebral palsy I realize my story is way more common then I wish it was.

This goes for anyone. The time to change things is now. I refuse to live in a world anymore where it is okay to call me a spazz. I will live in a world where people stop making archaic assumptions and start really seeing what I am capable of. I am a proud quad and what I have accomplished on and off the court is due to my hard work, not because I am some freak who has all these countless advantages.

This is way bigger then sports, this is about life.

I am so hurt because I deal with all the crap from the able bodied world that every disabled person deals with, but I also deal with this constant misunderstanding of who I am from the disabled world too. It is a sad truth that I relish the able bodied world’s prejudices in comparison to what I get from my disabled brothers and sisters.

Please never call me a spazz again and think twice before you make an assumption. I have bladder spasms just like everybody else.

Thanks for reading
Chris