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The Little Annoyances in My Life With Cerebral Palsy

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People have often come up to me and ask if I need help with anything. In my mind I scream “Hell to the no! I can do it myself!” but out loud, that turns into “no thanks, I can can handle it.”

As I get older (and somewhat wiser) I have come to realize a few things about having a disability in an “able-bodied” world. I could start a list a mile long, but I won’t. I will only discuss two things.

First, people often assume because I am fully capable of living on my own and looking after myself, I must have been in an accident that left me without the use of my right arm and made me walk with a limp. I can see them staring and imagining all of the terrible accidents I could have been in to get this way, one of which I hope is, I was riding my unicorn and drinking my coffee at the same time when blam! A dragon came along and knocked me off, spilled my coffee and I landed on some honeysuckles. When they finally pipe up and ask and find out that I was, in fact, born with right hemiplegia cerebral palsy, they get this look of utmost disappointment in their face and the classic “Oh. Wow. You function so well.”

Well, duh! I have learned to adapt many things so I can function as a member of society. I work hard to prove to others (and sometimes myself) that I am not just a typical status quo. If I get hired for a job, get an achievement or I am to be classed as an “inspiration” (which is one of my biggest pet peeves, by the way) you best believe I have worked hard to earn that title and I refuse to have something just handed to me because I am a person with a disability.

The second realization, and one of the most annoying in my book, is that after you turn into an adult with cerebral palsy, there is little medical support. Most of the studies, surgeries and what have you are done with children with cerebral palsy. I walk into a doctor’s office and say I have cerebral palsy and get “that look” from the doctor. The look most adults with CP have seen numerous times in their life, the look of “Oh crap, I am going to have to Google this when I get home.”

Heaven forbid you go in with a pain. The general answer is “It’s your CP, here is your anti-inflammatory, feel better.” Because my right hand curls inward towards my wrist, watching doctors try to figure out an x-ray is always fun. I remember once I had banged my bad arm off a wall after a CP spasm from a loud noise on the TV. I kid you not, there were five ER doctors looking at my x-ray trying to read it to see if I had broken anything. The diagnosis: it’s probably not broken, just bruised… blah blah blah.

I’m sad to say I now avoid the doctor’s office as much as I can — and if I feel like this, how many people out there feel the same way? Attention medical profession: children with disabilities grow into adults with the same disability. Don’t leave us in the cold after the age of 18.

Living in the “able-bodied” world can be stressful. I will persevere through it. How? Lots of caffeine, a mind full of sarcasm and writing the occasional venting article.

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Getty image by Lolostock.


Originally published: January 17, 2018
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