Friday, January 16, 2015

OK With Being That Girl in the Wheelchair...duh.

The other day I was going to meet my best friend at the hospital after work and bring her some fudge and leftover Christmas presents for sweet baby Claire, who is still getting chemo treatments. We thought we might miss each other so she told the front desk worker, who happens to be disabled, to look out for "her friend in a wheelchair." The front desk worker, just kind of looked at her and said, "You mean Kimmie." Oops.

When I arrived we all had a good little laugh about it, but it then led me and my friend to have a conversation about how A-ok I am with being "That Girl in the Wheelchair" [Tangent: I mean...obviously.] Is it all I am? No. But is it easier than saying "That girl with the glasses" or "the girl who sometimes forgets to brush her hair" or "that girl that wears leggings as pants nearly everyday of the winter?" ABSOLUTELY! Why dance around it?
fuzzy hasty photoshopping...

[Tangent: I can only liken it to when all of my college roommates were black, and being the awkward naive white person I was at the time, I would always tiptoe around the word "black" when describing someone. Ex: I would say almost every other term to narrow down a population..."wears shirts sometimes"...."has hair"..."with the nice personality". Eventually I got slightly more savvy and would use phrases like "light skinned" or "with the braids" when applicable if I couldn't remember the name of someone.  This was until eventually I realized it was dumb of me to dance around the word "black." It's not derogatory unless you make it so. It's a factual part of a human being.]

After thinking about it for a few minutes today, within seconds, I was  pulling up for reference the blog of my friend in real life and online Mary Evelyn. Recently she had this post go ridiculously viral about it being OK for her son's disability to define him [Tangent: Of course that statement is gonna spark some controversy...mostly stemming from those that are not disabled or from those that live to get their panties in a twist. UGH!!! Those people! ] I saw her point crystal clear,  and it got me thinking if my disability defines me. And is that a bad thing to acknowledge? Does that make me one of those people that is constantly like "hey remember this bummer thing...let's keep talking about it and let me remind you about it every five seconds"?

Let me explain why I identified so much with her statement. Because I was diagnosed when I was two,  I don't ever remember living in a world where I wasn't disabled. [Tangent: I do remember being able to walk and sit on the floor and all that jazz, and truly I wish I could say that losing those abilities was tragic and laced with Lifetime movie soft jazz background music, but that's not entirely true. I am sure it was hard on my parents who had the adult burden of worry and foresight. To me being a small child, and thus not the brightest crayon in the box, I just kind of assumed that's how life was.]  It's just a thing that is part of much a part of me as being a brunette or loving to sing despite having the world's most grating singing voice.

Also to say I wasn't limited by it would also be a falsity. I didn't say stifled by, I said limited by. TOTALLY DIFFERENT!  I never grew up thinking I would be a figure skater or a competitive roller blader, which seemed to be a legit profession in my youth. I had realistic goals. [Tangent: I know I know there is always gonna be that inspirational story on the Today show about a person with a disability climbing Mt. Kilimanjaro, but if you are around me for 5 minutes you realize I would rather channel my competitive nature into scrabble or pub trivia than any athletic pursuit.] I don't think that's bad. By having to find creative solutions to everyday problems, like picking up something off the floor with a hanger, I think i found out that I was capable of being a creative human and thinking about things a completely different way.  This made me good (reasonably) at writing and problem solving, which is part of what I do now....which happens to be with a disability organization. Disability defined my profession.

I thought, "Ok, I am probably not gonna do A, so let me just be the best at B." I knew my body was never gonna be super strong, and my entire life I was going to have to put people at ease, so I became somewhat outgoing to nip in the proverbial bud of ignorant assumpion. I feel like because I'm in a wheelchair, I have a sense of humor and have had to prove myself intellectually...much more so than if I wasn't disabled. Things were hard 99% of the time so I became so effing stubborn. [Tangent: Not always a good thing.] Ever since I was wee, I was hyper aware of somewhat scary concepts like spinal fusions and muscle biopsies, so I kind of became unable to take most things incredibly serious. That became my coping mechanism. My disability defined my personality.

There are certain personality traits that I have prioritized in the people that I surround myself with. Qualities like empathy and patience supercede having a good job or cool hair in my list, although most of the people I love have awesome locks. Even though friends are a mixed bag of lovable freaks, the majority of them have the following in common: open minded, unafraid of public opinion, helpful and stable. I like to think I have made them more thoughtful when dealing with people who are slightly different. [Tangent: I mean they aren't necessarily the types of people to interrupt a stranger eating a meal at a restaurant to tell randomly tell them, "I just wanted to tell you I have a friend in a chair too." Rather they may be more likely to hold a door.] My disability has dictated my friendships.

I kinda think if I weren't in a wheelchair that there's no way in hell I would be exactly the same human being, only the walking around version. [Tangent: Honestly, I am afraid of the bizarro version of myself and what that would entail.] Although I understand there is no Twilight Zone portal that would let me know for sure there what  I would be like or what my friends would be like or what kind of job I would have or who I would be dating. I can affirm wholeheartedly that I would be completely different if I wasn't born with MD. I like me better this I'm ok with letting my disability dictate who I am. Being That Girl in the Wheelchair has been pretty badass so far.

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