Wednesday, July 9, 2014

CP Tag

1) What kind of CP do you have?

Spastic diplegia.

2) How did you get CP?

I was born prematurely.

3) How did you feel about it growing up?

When I was very young, I didn’t think about it much, because it was what I was used to. But once I started school I did notice differences and often wished I could do as much as “everybody else,” and be treated “the same.”

4) How has CP impacted your life (Good & bad)?

Good: The community of people I’ve been able to meet and talk to has been great. And I really like talking to people and challenging their perspectives and stereotypes about people with CP and other physical disabilities
Bad: A lot of physical pain from surgeries and recoveries and rehabilitation after surgeries. The sheer number and intensity of surgeries, which led me to crave control in my life and led to later issues. Feeling ostracized from my peers because of my CP. Being raised by parents who, though they love me very much, have ableist attitudes that still impact me.

5) Do you ever think about your life without Cerebral Palsy?
There were certain ages when I did. Around age 12, I was convinced that if I worked hard enough with my stretching and other physical exercises, I’d be able to walk without assistance. Around 18, when I started attending church, I really found myself longing to not have CP.

6) How was schooling with Cerebral Palsy

Schooling was both positive and negative. I had great teachers and I had not so great ones. I had adaptive physical education all through school, and an IEP which I really disliked, because though it took me a while longer to write, I was able to keep up academically. I hated being set apart, but dealt with a child in second grade telling me I was “cute” every day. (Cute in a patronizing, dehumanizing sense, not in an “I have a crush on you” sense.) Fourth grade was not great either, because my teacher absolutely did not know how to cope with a student who was disabled. Fifth grade, I had major surgery, but had a fabulous teacher who came to my house to teach me during the two months I was home recovering. I used a walker in elementary school, crutches all through middle school, and because I moved onto a really big high school, I used a wheelchair there.

7) How has your disability changed throughout your life?

 I have noticed more physical pain and that I get tired easier than I did when I was younger.

8) How will things change for people with disabilities?

In my lifetime, things have already changed tremendously. My sister and I were the first kids with disabilities to be integrated into our nursery school teacher’s class. I was nine years old when the ADA was signed into law. So I can only hope that things continue to improve.

9) Do you believe in God? Does that help you deal with having CP?

Believing in God has actually been more harmful than helpful for me. For about ten years (18-27) I attended a church where most of the congregation told me God would heal me, asked if they could pray for my legs, and told me how inspirational I was after a church service (just to name a few instances.) I can’t tell you how damaging it was for me. I eventually stopped going, believing I was a distraction to them. (My biggest mistake was in not realizing that they were in the wrong, and not deciding to leave sooner.)

10) If there was a pill or cure for CP, would you take it?

Honestly? It depends. I’d love to experience daily life the way most people do - able to go about their business without being stared at or asked rude questions. But I also feel like CP is a big part of my identity and that trading it would mean losing an important part of what makes me who I am.

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