Monday, March 28, 2016

K Says: Cerebral Palsy Awareness Month Interview #6

As a part of Cerebral Palsy Awareness Month, I interviewed some friends with CP.  (My own interview will be posted at the end of the month.)  I wanted to get our impressions on some aspects of having a disability, but I also wanted to include general questions, to normalize those of us with CP.  I think it's important to realize our perspectives about things may be similar, but we are also our own unique people.

Next up, my friend, K:


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What is the most important thing you have learned about yourself? 

I think the most important thing I have learned about myself is something that I have known for as long as I can remember, and yet I am still learning it each and every day: I am ABLE. We have a home video of when I was about three years old…I was fiddling with a cap to open something and my mom said, “Let me help you with that.” I looked her (and her video camera, by extension) fiercely in the eye and declared, “No. I CAN DO IT.” She laughed and said, “That’s my can-do girl!” That’s what she always called me, her “can-do girl,” because “I can do it” was something that I repeated over and over—partly as a truth that I have always held close, but partly, I think, as a way of convincing myself of that. College has been an amazing way for me to confirm that truth for myself, though—time and time again, it has given me the opportunity to prove to myself and others how capable I really am.  

What is your favorite thing about the month of March?

Would it be a cop-out to say that my favorite thing about the month of March is that I get two weeks off from school for spring break? My favorite thing about THIS month of March has been binge-watching Grey’s Anatomy with you and Tara!

What is your favorite thing about yourself relating to your disability? 

I was originally going to say my tenacity, but I think my disability has given me a certain perspective and depth that I wouldn’t otherwise have. It’s impossible to know whether this is a direct consequence of my CP, but I think it is. Growing up, I always appreciated when people stopped staring at my legs and instead really tried to get to know the real ME, the whole of who I am as a person. It meant so much to me when I was no longer labeled as simply “the girl with CP” or “that kid who walks funny” – so even as a child, I made a conscious effort to reciprocate that…to look past outward appearances and to really get to know people for who they are. Oftentimes people are surprised when I wave to the cleaning staff or stop to talk to the woman who does outdoor maintenance work on our campus—especially because I’m not a very outgoing person—but I think it’s important to take a few moments to get to know the people you pass by every day, to listen to their stories and SEE them. If I didn’t have CP, I don’t know if I’d be as empathetic towards others in the same way.

How do you deal with people's invasive questions, comments, or stares?

I’m still working on this! Especially if it’s a child, I’ll answer as best as I can, because I don’t want him or her to grow up thinking that people with disabilities should be avoided (I HATE when kids stare and then the parent whispers, “Don’t stare!!” I get that it’s well-intentioned, but I’d much rather them ask politely than to avoid me or wonder and spread false rumors.). As far as stares go, I remember distinctly in high school when a teacher (!) was staring blatantly at my legs for the longest time, and it was making me uncomfortable….so the next time she did it, I stared at HER with the same intensity….she got the hint and looked away abruptly, and then never stared at me like that again! 

What is your favorite song?

Right now it’s a contemporary classical piece called Divenire by Ludovico Einaudi. I’m learning how to play it on the piano and it’s beautiful!

What is one thing you want people to realize once they meet you? 

I want people to know that CP is a part of who I am as a person, but it’s just that—ONE PART. I understand that if I’m standing or walking when someone first meets me, it’s very likely that my CP is the first thing they’re going to see, and that’s okay. But as one of my friends said to me recently, “Yeah, this [your CP] is a part of who you are, but you are also so much MORE than that. [Your CP] is not the biggest part of you.” My hope is that others will see me in this way as well…that they’ll be able to look past their initial impression of my unsteady gait and pay attention to the other aspects of who I am that are just as valid and just as important as my disability, if not more so. 

Do you have a role model or a favorite celebrity in the disability community? If so, who are they, and share a little about them.

I love Bill Klein  and Jen Arnold from The Little Couple—their show always makes me smile, and I LOVE that they adopted children who are little people as well!

Have you ever watched TV, movies or a music video and thought, "That person's just like me!"? What was the show/movie/video? Describe the moment that made you feel the most seen, heard or validated as a disabled person/person with a disability?

I can’t pinpoint a specific TV show, movie, or music video (and I wish I could…but disability isn’t often portrayed in the media!), but reaching out to other people who have CP and similar conditions (e.g., you and Tara, among others!) has made a world of a difference for me. It has been so validating to share stories with them and to realize that there are so many others out there who have gone through similar experiences. 

What is your favorite scent?

There are so many!! I love the smell of pine needles because it reminds me of when I was a little kid and I used to press my face against the branches of our Christmas tree and breathe in the scent of Christmas…but I also love the sweet, yeasty scent of fresh bread, just before it goes into the oven. 


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[Image shows K as a
child.  She is wearing
a hat and smiling.
Photo credit: K]




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