Wednesday, November 7, 2012

Do I Hate My Life? No. But I Do Hate My Disability.

I am vocal about hating OI because I want to push back against our cultural tendency to romanticize disability. On the one hand, our culture can undervalue people whose bodies and/or minds don't measure up to cultural norms for beauty, accomplishment, and strength. On the other hand, we put people with disabilities, and their families, up on pedestals. We say things like, "God chooses special parents for special children," and "God won't give you more than you can handle." In a strange way, such platitudes imply that the lives of disabled people are more valuable than other lives; that people with disabilities and their families are stronger, wiser, and tougher than regular people; and that they, in the words of one online commenter writing specifically about Down syndrome, have a "straighter line to God."
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As I've said before, I don't want to be SuperCrip who runs marathons (I wasn't a runner before I got sick).
I don't want my disability romanticized, but it would be nice to find an employer willing to work with me on what I can and can't do.  Yes, I worked full-time 12 years after diagnosis, but there were no accommodations made for my health; if boxes needed to be moved, I moved them.  I was scolded for wasting time when I stood up for a moment to stretch to unkink my bad back, and criticized for spending too much time in the bathroom (guess I should've just thrown up in my wastebasket and let the smell permeate the office).
When I could no longer work full-time, I looked for a part-time job and discovered that I'd be working half the hours for a quarter of the pay -- they don't pay the same hourly rate to part-time paralegals, and you don't get health insurance, either, when you're only part-time.  With no husband to supplement that paycheck, I couldn't make ends meet on what they were offering.  Not that anyone was willing to hire me when my symptoms manifested during interviews.

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