- By Stephanie Hickey -
Where disability is concerned, I'll quote Lady Gaga and say, "I was born this way", though my condition didn't manifest itself until I was a toddler. From the age of two on, doctors and therapists were my constant companions. Operations were not scary undertakings but routine ventures and hours of therapy were, sometimes not always my favorite activities, but were as necessary and (honestly) boring as brushing my teeth. These things filled my world, as did my therapists and doctors who treated me simply as a little kid. That's what I was to them: a small child. I never had to see my disability as a difference, let alone as a negative.
But upon entering the outside world, I learned that I'd been kept in a bubble which quickly burst. Outside my family, doctors and therapists, I discovered people I didn't know existed: people who sometimes treat disability as something to patronize, fear and mock. I'd unpleasantly discovered that I was seen as "different" and that, in some individuals eyes', being different was equated with being "bad" in some way.
And upon meeting the real and sometimes nasty world, I was called ugly names, stared at as if I were a bizarre circus attraction from the 1930s, laughed at and taunted. All this disapproval and derision did not change the daily aspects of my being disabled. I still faced surgeries, doctors and hours of therapy with a casual attitude because every part of it was all still customary. Knowing others saw it as "different" couldn't change the fact that it was normal for me because, again I'll say, "I was born this way." The ridicule I endured, although infuriating at times, simply became another facet to being disabled and as routine and monotonous as the rest of it.
I suffered even in my bubble world, dealing with knowledgeable doctors and their pessimistic outlooks regarding the permanency of my status. This occasionally infected me with some hopelessness. They were doctors. Didn't they know best how far I could go, how much I could improve? But I decided to not always listen to their prognoses. So, a large part of why my condition bettered is because I didn't always follow doctors' orders and pushed myself. I grew to understand that they, for all their education and experience, weren't always right. Sometimes my intuition and faith in what I could make my own body do were what I should most trust.
Through trusting myself I reached a point where my disability isn't always noticed. After I've revealed its existence, curious people ask, "Were you born disabled or become disabled?"
Confronted with that blunt question I do wonder, "What's it like on the other side?" How would my life be different if I were still disabled--but not born so. I ask these questions of you now: were you born disabled or did you acquire your disability? Do you think that one scenario is better than the other? What is your opinion of this?
All Rights Reserved for "Born This Way" & Image, Lady Gaga
like you I have been disabled from birth. I dont think one is better then the other. I often wonder tho what the other side is like. I have asked friends before what walking feels like and no one can ansewer. But then again I cant discribe riding. Where differ is excepting everything as normal. Its easy to do but when we do i think it makes it hard to changr all the neg commments and stares, we brush them off and then forget to fight back because its normal. we forget to tell that business to fix their parking, or tell that person not to use the "r" word. so in many ways i dont accept my disability because i think i would start to accept EVERYTHING that goes with it.
ReplyDeleteI had a few major illnesses as a child (rheumatic fever, juvenile arthritis), which kept me out of grade school some, but by the time I got to high school, I seemed "normal" on the outside. It wasn't until I got out of graduate school many years later that my disabilities started to show. Now at age 33, I can't work an 8 hour day. I am in pain all the time and I go to at least 6 specialists in addition to a general doctor. People don't understand my disabilities. They think I am the same person I was. I am not. It is very hard to explain to them. I have ended up loosing friends over this. I feel sometimes like my in laws don't understand me, that they think I'm making it up because they knew me when I was well. It has caused my marriage to be rocky due to the expense of medical care. I think it is harder to become disabled than to be "born this way." But in some ways, I think it is favorable that an adult become disabled instead of a child. Why should a child have to go through so much at such a young age?
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