Dishing on disability

My dad was in a wheelchair—due in part to the disease I’ve inherited—for the last ten years of his life, so I thought I knew a lot about public reaction to a disability.

I’ve had my share of yelling matches with perfectly able-bodied jerks who park in the handicap zones, stared down serving staff whose sensibilities were ruffled by the presence of a wheelchair in their section and apologized for accidentally steering him into store end caps. What I learned from him is screw them all, do what you want and be where you want to be.

My love, whose own father was challenged with Parkinson’s disease, was good at grabbing my dad by the back of his belt and hoisting him out of our then very low to the ground Mustang. I’m sure there were times he was nearly spitting cotton, but it didn’t matter. He was enjoying an outing. He was having fun.

But it turns out there is so much more to learn. Nothing about my recent education would be news to anyone who has had to deal with any sort of physical, mental or psychological challenge, but it’s all new to me and therefore a little fascinating. Here are just a few of the things I have picked up.

This may be racial profiling, but young women of Asian and Middle Eastern descent are my best friends on public transportation. I have had young female Chinese students race to give up their seat and once a teen girl in a hijab nearly cleared the entire front of a bus for me. She yelled, people scattered. I think it might have something to do with their upbringing and cultures that actually value aging relatives who might need a little extra consideration now and then. Makes me wonder—when we talk about diversity and tolerance—many we should be taking about how much these new Canadians have to tolerate from us.

Like anyone else, I appreciate you holding the door for me. It’s definitely preferable to getting hit in the face with it. However, understand that you are making a commitment and you should do so graciously. I’d rather open my own door when I get there on my own time than feel the need to step up the pace to get that disappointed look off your face.

Understand that no matter how close you walk or stand behind me, it’s not going to make me more flexible or quick. Doesn’t work like that. If it did, I would hire someone to walk very close behind me just to keep me in motion.

Don’t give me that look when I eschew the stairs for the elevator. Yes, I look healthy, relatively young for my age, I’m usually fairly neat and well dressed and I don’t use a cane or any other sort of aid. I’m not lazy, seeking sympathy or feeling sorry for myself. Trust me, attempting those stairs is going to ruin my night.

Yes, I do know you’re in a hurry and you want to get around me, but try not to dart left and right; just pick a path and go. Whether I see you coming at me, or feel you behind me, I can’t react to your sudden motion and it makes me freeze in place. Which does neither of us any good.

And to the several people out there who seem disappointed that I’m still working—get over it. Currently, the toughest thing about my workday is getting my tights or stockings on—and that’s only because the bend-ability of both knees is less than ten percent of what it should be. Summer, with cute dresses that can be flung over one’s head and wriggled into, along with bare legs and slip-on flats sans socks will make the mornings much easier. Besides, it’s my brain that makes the money—and as long as I can limp, wheel, crawl or roll up to a laptop, I’m working.

Take note—there will be times when I am simply not myself. Dealing with even low grade chronic pain can cause brain fog, mood swings and feelings of frustration and exhaustion. The pain pills can sometimes cause headaches or stomach woes. All temporary. It all could be so much worse. It’s not cancer. It’s not dementia. It’s not any one of many other horrible things one can get. It’s just hurts to walk. Sometimes. But only until the doctors and I figure out how to fix it.

And that point is never lost on me.

 

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