My friend Cara,who I met in a Facebook group called “You Know You Have CP When,” posted a Google doc titled “The Spaz Fabulous Pledge.” Not everyone who has CP has spasms, but the title has a definite ring to it. If Cara changes it, I’ll change the title of this post. The pledge goes like this:
“I pledge to shift the way I think about people with CP. People with CP are not burdens on our family and caregivers, nor are we inspirations solely to motivate the nondisabled population. We are beautiful, complex, and wonderful human beings who deserve chances to fulfill our dreams. I pledge to embody SPAZ FABULOUS each and every day!”
Shifting the way that I think about people with CP is one of my main reasons for starting this blog, as well as helping people shift the way they think about CP. Some people who are reading this right now may have stumbled across it having never met someone with CP. If I have the honor and privilege of popping your ceep cherry, you’re in for a wild ride. People often have questions like, “Does your whole body hurt,” “Can you walk,” and “Do your genitals work?” The answers are yes, yes, but not everyone with CP can, and you don’t need to know what’s in my pants unless I let you into them.* If you have a friend or relative with CP, you should feel comfortable asking them questions about their situation as long as they trust you to listen to them. If they’re nonverbal, look into communication tools that could help them and then use your magical listening skills. If you have CP, it’s crucial that you learn to assert your boundaries, jam out on your interests, and stop giving a crap what other people think your limitations are. This, like a lot of things, is much easier said than done. Sometimes, the process is incredibly painful both physically and emotionally, but it ‘s necessary all the same.
Internalized feelings of burden can gum up the works of our growth as people; they sure as hell did for me. I can’t tell you how many times I thought I’d be doing the world a favor by killing myself. I talked about this in my post about Rob, but here I want to emphasize how many of these feelings were directly related to Cerebral Palsy. Once you start thinking of your life as one less thing for someone else to worry about once it’s gone, you’ve given up a great deal of your humanity. I convinced myself that my parents wouldn’t have to argue about who took me from Hebrew school to physical therapy anymore, that I’d never be able to run with my friends anyway, and that those friends only hung out with me out of pity, it really began to grate on me. Hearing it and feeling it day to day from my parents, a few teachers and kids, and media outlets that showed a vast array of impeccable able-bodied people and a smattering of lucky cripples wasn’t easy either, but at a certain point, I got sick of assuming blame for other people’s problems with my disability. If my parents can’t take me where I need to go, I’ll find a way there. If my friends can’t walk with me, I question why they’re hanging out with me, and if they’re genuinely my friends, they’ll wait for me, give me a ride, or even carry me with my permission.** I’m not Cerebral Palsy, but I have to deal with it and the things that go along with it, and yeah, that does suck sometimes, but I don’t define myself by it. Life doesn’t stop when mom, dad, and the caretaker leave the room, that’s when it starts. That’s where I learned my limits and started to stretch them, just out of curiosity. What I’ve found is that interdependence keeps the world going. It’s like Marx said, “From each according to his ability, to each according to his need.” It doesn’t just mean “share the wealth,” or whatever the worlds of 24-hour news and bumper sticker politics would like it to mean, it means that we all have fluctuating strengths and weaknesses and need to learn to accommodate each other. No one asked to be carried like an albatross or hoisted on a pedestal just because of how their body works. No one needs that, but we all need each other. Does that sound Spaz Fabulous to you?
Photo credit: Savannah Staubs
*Paraphrased line from Adhamh Roland’s song, “Bathrooms, Boxes, and Binary.” Definitely worth a listen!
**Consent is important, folks.