CP Tag

589 words

5 minute read

Hey, guys!  It's been a while.  It's National Novel Writing Month, which means I am writing something besides a blog.  (Weird.)  At the end of October I did a Twitter review of Out of My Mind by Sharon Draper.  You can check that out here if you missed it.

Otherwise, I just saw a post by my friend Zahraa, at The Disabled Muslim where she recently shared Two Tags and An Explanation for Where I've Been.  

I really liked the CP Tag, and decided to do it here:




What kind of Cerebral Palsy do you have?

I'm not altogether sure!  Early reports identified me as having spastic quadraplegia (extra tension in all four limbs.)  I've gotten used to saying I have spastic diplegia (because of my wheelchair.)  But I feel like I have CP in my legs and my right arm / hand as well.  So...

How did you get Cerebral Palsy?

Born prematurely at 31 weeks.  I was the second-born of twins, 15 minutes after my sister.

How did you feel about Cerebral Palsy growing up?

On one hand, it felt very normal.  Both my sis and I have CP.  On the other hand, no one else in our family did.  And my sis could pass as nondisabled, so she was raised that way.  I often viewed myself as a kind of subpar nondisabled.  "Just like everyone else" except that I used a walker / crutches / a wheelchair.

The more ableism I was around, the more I resented my CP.  Being raised in a (largely) nondisabled world, by nondisabled parents to achieve a nondisabled standard of "normal" was very difficult.

How has Cerebral Palsy impacted your life?

It affects everything in my life.  From where I live right on down the line. 

Do you ever think about what your life would be like without Cerebral Palsy?

As a young adult into my 20s I thought about it quite a bit.  On one hand, I wanted to not have CP to be more acceptable to people around me, but on the the other hand?  The idea of NOT having CP terrified me.  I often wondered, if I didn't, would I be able to even recognize myself?

How was schooling with Cerebral Palsy?

Difficult.  Though I did reasonably well academically (graduated with a 3.8 GPA), it was hard to deal with ableism and accessibility issues on a regular basis.  Friends houses were not accessible, so I didn't spend as much time with other kids.

How has your disability changed throughout your life?

I've noticed increased pain in the past couple of years.  It's more difficult to move around.  Cold weather is much more of a trigger for limited mobility than it used to be.  The increased wear and tear of a lifetime of spasticity on my body is evident.

How will things change for people with disabilities?

I hope that in the future, we will be safer, as a community.

If you believe in God, does that help you deal with having Cerebral Palsy?

Honestly, believing in God made having CP exponentially more difficult.  

If there were a pill or cure for Cerebral Palsy, would you take it?

I honestly don't know.  Because I don't know if I'd care to be cured of CP just to gain the acceptance and love of people who could not love or accept me the way I am.

Tara (in the wagon) and me (pushing her) age 6.  We are both smiling.

***

Don't forget to connect on Facebook / Twitter / Instagram