The holidays always get us thinking of family, don’t they?
One of the things that has suffered badly since I became disabled is my relationship with my mother.
It’s frustrating in a way, because most of the problems my friends who are young and disabled have with their parents, I don’t have. Mom doesn’t try to protect me from everything. Mom doesn’t ignore my disability and/or the needs that spring from it. Mom doesn’t make fun of my disability. Mom doesn’t lament over the future I won’t have because of it. She doesn’t try to convince me I can do everything and anything, either. I don’t get pushed to do things I can’t. She does little things that help accomodate me – changing the doorknobs to levers instead of those fiddly round ones, making sure I had a bedroom on the main floor of their ‘cabin’ instead of one of the harder to get to ones, asking if I need a different kind of showerhead, etc.
But what she doesn’t get is the emotional side of things.
A few years ago, I’d been sick enough to consider myself disabled for about 4 months and my sister was pregnant. I was home for the holidays. Mom and I went out and bought a new cane because mine had gotten left on a bus and she changed the doorknobs so I could get into the bathrooms and my bedroom. I thought things were going pretty well; my family didn’t give me a hard time about needing more sleep than before, and not being able to do much.
And then it happened. We were in the car one day, and my sister griped about people wanting to rub her pregnant belly – strangers, her landlady, all kinds of people. I said I sympathized, it’s really frustrating when people invade your privacy. Like they do when complete strangers on public transportation ask me about my disability.
My mother then said that I had a very bad attitude and that I should be glad people weren’t just ignoring me, like her coworker in a wheelchair said happens to him.
I tried to explain – it’s my privacy, what are people doing asking about my medical history? Why do they think I should tell them what’s wrong and worse yet they expect me to smile nicely and thank them when they offer yet one more useless ‘try this!’ idea.
No, no, I just have a bad attitude. It’s just people caring. What’s wrong with people trying to express caring?
That’s the thing. They aren’t caring. They’re being nosey curious people poking at the gimp girl with her canes. (then canes, later crutches, now service dog)
Yup, sometimes when people ask me why I have a cane, I tell them that it’s good for whacking annoying people.
Not because I do whack people with it, but because…I didn’t want to discuss with people this strange ailment that was then undiagnosed and a complete mystery to my doctors. I didn’t want another round of suggestions of herbs or vitamins or exercises or healers or doctors or prayer. I had good doctors. We were running tests. If something herbal would’ve solved my problems, my young open-minded GP would have recommended it in a heartbeat. And the last thing I wanted was another person with pitying eyes telling me they’d pray for me.
I’m sure you can imagine what a betrayal it felt like. My mother, who I have used as a sounding board and rational ear for most of my life…on disability issues, is one of Them. The able-bodied people who recognize only the most blatent forms of discrimination as ableism. I’ve tried talking about other disability related issues with her, and it’s all been the same result – I’m over-reacting, it isn’t that bad, why is that a problem?
In the end, I’ve given up talking about what it’s like to be a person with a disability with her because she is certain she already knows, and thus she will not listen to what it’s like to be in my shoes.
Because obviously, I wouldn’t know what it’s like to be in my shoes.