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| Middle-aged man sitting in a wheelchair, on a street, holding a cardboard sign that reads: IT'S NOT AS BAD AS YOU THINK! |
We spotted each other on the street, her in her scooter, me in my power chair. We both pulled aside to have a bit of a chat. I hadn't seen her in a long time and I told her how well she looked.
"I sure get different responses from the disabled people I know when we run into each other after an absence," she paused then continued, "almost all the non-disabled people I know always say, 'Oh, I haven't seen you in a couple of weeks, I thought you died. And then they laugh. I don't know what that laugh is about but, they think I'm on the edge of death, all the time!"
I told her that I haven't had that experience often, but occasionally, through the year, I get the 'I heard you were dead' or the 'I thought you were dead,' kind of responses from people. I agreed it was a weird response.
"Well, it's more than weird," she said. "It's frightening. They keep assuming that disability is some kind of disease that we are suffering through and the last step before death are wheelchairs and walkers. They don't seem to get that it's just that my legs don't fucking work, the rest of me is fine."
I burst into laughter because this is a woman who looks like, and is, the kind of woman who thinks that 'damn' is harsh. She swears seldomly and therefore effectively.
After laughing, in surprise at her language, I agreed with her. "The confusion between disability and disease is a frightening one. It means that there is a cure for every disability and the cure is either getting up and doing an Irish jig, or popping off and diving to the ground."
"I'm healthier than I have been in years," she said, "I'm going to be disappointing people for years."
"Well, good for you!"
"Being disabled,?" she said, "is strange. All it takes to be an advocate is to live happily. That's what confuses them. Living abundantly, living happily, is an act of provocation for those who want to see us as suffering victims."
"And fuck that," I said.
"Couldn't have said it better," she said, laughing as she rolled away.
I fight my weight, and I fight to remain as mobile as possible, but it's not because I fear being disabled or dying once I end up permanently in a wheelchair - it is only because it's more convenient to be able to get around on my own.
ReplyDeleteThat's all. And it would be nice if my husband doesn't have to push me - he has his issues, too.
When I need it, I'll get the scooter or the chair. I know I can get really lazy and let the weight creep up, especially around the holidays (and then the pants don't fit!), but they are just self-management issues, not moral ones.
Having, among other things, an invisible illness (CFS) is difficult, but the motto of our support group is, "How well you look!" Because only in our support group do we know exactly what that means: CONSIDERING how crappy we feel all the time, and how hard it is to live like this, we look far better than we feel.
Out in the 'real world,' the same words mean, "Oh, you must be getting better. You look almost normal." Which is nowhere near true. We almost feel defensive for not LOOKING worse, when that's not where it hits: exhaustion, pain, swollen glands, brain fog, etc., aren't visible signs that anyone can measure by looking at us.
I fully expect to get the title of 'World's Oldest Woman' in my turn.
Love this post!
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