I don’t like being asked two questions:
”What does having CP mean to you?”
”How does CP effect you?”
I don’t mind being asked them, if that’s how you feel you can best verbalize yourself. It’s just difficult to answer. I, like most people don’t like talking about myself, but blogging works somehow.
The first question sounds like I should be in the middle of the interview portion of a special needs beauty pageant. I really want to respond “world peace,” because doesn’t someone use that answer at least once in pageants?
I don’t subscribe to the school of thought that says, “I may have CP, but CP does not have me.” For a very complicated reason, that I won’t get into now, that kind of response leaves a bad taste in my mouth.
But my actual answer to, “What does having CP mean to you?”
It’s part of who I am. Not who I am.
Now on to,” How does CP effect you?”
This is the most generic question you can ask.
Sounds like the best way to leave the door open for sharing right?
Here’s the problem.
Expectations come with the question.
The “asker” has an agenda, usually looking for commonality.
Parents want to know what older CP people were like at their kid’s age; to see the light at the end of the tunnel now. As much as I can understand the need for it I don’t think there’s much thought behind the motivation for asking. CP is vast and varied, I’m wary of what I tell people, especially at first interaction, because I don’t want my successes (or failures) to dictate another kid’s life, and I try to make the point to keep the door open for many possibilities.
I was born in the 80s. SDR was becoming common. There was PT, OT, ST, and a few other things. There was no Botox, Baclofen pumps, Anat Baniel, Feldenkrais, Conductive Education, ABR and CME, (if there was it certainly wasn’t popular) and that’s just the short list I’m guessing.
I should also take the time to mention that my parents made stuff up as they went along, because there were few or no options. My father made my first set of crutches, toe clips for my tricycle, weighted my push toys so when I used them to stand up they wouldn’t land on me, and made adjustments to my AFOs in the kitchen with a blowtorch. (In his defense, as much as mine, he’s an engineer). My first “official” crutches were pink, because they only came in pink, blue, and silver.
There are more options now. For that reason alone you can’t really compare my experience to a child today, although there are parallels. We’ve come along way!
When I answer the “effects” question I’m happier when I happen to discover the family first, usually though blogging since I’m a big lurker. I get context that helps me give answers.
I could give a standard rundown of “me” but it would probably be my GMFCS level, surgical history, list of current medications, GPAs though school, SAT scores, extra curriculars, highest level of education, current job, future career goals, and a 5 year plan.
But that doesn’t tell you how CP affects me. More importantly, it’s not me. I’m not facts, figures, and statistics. I’m a person. I want to tell you about me, and who your child, any child, can become. Leave the facts and figures for the medical pros
Parents aren’t the only ones at fault either. Recently I’ve formed a friendship with another girl with CP (I don’t say CPer, another thing that leaves a bad taste) and during our first conversation she asked, “How does CP effect you?” I had to be honest with her, as another person with CP; I never know how to answer the question. She then shared the same sentiment. So as much as the question isn’t preferred we often fall into the same trap.
Make no mistake. I don’t mind answering questions, within reason of course. I know I’m a rarity, particularly when it comes to blogging. If I don’t take on the responsibility, there are very few people that will. Ask what’s really on your mind. I don’t mind, and if I do, I will tell you.
Now that I’ve gotten off my soapbox, are there any questions?
*A similar version of this post was written on December 1, 2011
I’m participating in WEGO Health’s Health Activist Writer’s Month Challenge. If you want to find out more about Health Activist Writer’s Month Challenge visit their blog, Facebook, Twitter. You can find more posts by searching #HAWMC.