A few days ago, I wrote a post about the natural assumption that people with disabilities live their lives alone. That disability equals isolation. I believe that part of the disphobia that people have is from a bone deep fear that if they became disabled they will not only deal with a new way of being in the world, they will deal with loss of family and friends and any social contact at all.
People can't simply, in my life anyway, see the relationships I have.
They see a lonely, probably pathetic, fat guy in a wheelchair.
I was at the hospital getting an iron top up which takes several hours. Several hours to get a vein. Several more hours to pump the stuff into me. Joe comes with me and waits with me a while and then I send him off to do what he needs to do and I read my book. We talk on the phone several times during the hours that I'm there. Then he comes back about a half hour before I'm done and we talk like couples talk about ordinary things: what are we going to have for supper, are we packed and ready for the next trip, were there any emails of importance. Stuff.
The nurse who was disconnecting me from the machine had met Joe, had seen him come with me and come back for me, had been there as we chatted, began telling me that some people get a bit dizzy from the infusion. She said it would be good to have someone with me for a couple of hours.
Then she said, as a statement, not a question, "So, you live alone."
Both of us were startled.
"No," I said, then pointing to Joe, "I live with him."
"Oh, really," she said with surprise in her voice.
The prejudice and stereotype regarding disability is so strong that people can't see anything but their preconceptions. Even when there is clear evidence that what they think about disability and people with disabilities is wrong, they still can't see us.
Really see us.
This is our challenge. Someone has stolen from us the right to have our own narrative, the right to have lives lived as individuals, the right to have a story that's different than the one that was crafted and created in different times by ten fingered hands.
Just because Joe didn't sit there the whole time, he's doing you a favor by bringing you in and picking you up?
"What on Earth makes you say that, after my husband drops me off and picks me up?" is the only response I can think of. With a look of incredulity on your face (are you as good an actor as you are a writer? you must be).
Or the general response, "Why on Earth would you say that?" (so you don't have to think when put on the spot).
Destroying misconceptions, one human at a time, knowing they are but the tiny minority which will open their mouths and let the snake out.
So insulting and hurtful that this happens at all, let alone repeatedly. Hopefully it will get better as more people of all varieties are visible living lives that are boringly typical. :)
I find that very sad. Not for you so much - although I think it sucks you deal with social discrimination on a freakin' daily basis - I mean more for the people like the phlebotomist. You have a life rich and full of relationships and meaning. The fact that some folks don't (or can't) assume that you do is depressing to say the least. It speaks to a gray existence. It's a closed mindedness that comes from somewhere. I suspect it may come from our educational systems really . . . peer groups, peer ostracism, peer and systemic segregation - the kind of stuff based in fear, ignorance, and assumptions. I mean for all the 'strides' that have supposedly been made in modern education - you'd think that true inclusion would be one of them.
I have a (now adult) son with multiple physical issues that make him pronouncedly different looking. He deals with it with aplomb and humor. He talks to me of similar frustrations. The way he puts it is like he's in high school all the time with the way some folks act . . .
Maybe the next generation will see things differently. Sadie and Ruby certainly do because they've been graced with the perspective you give them. Their lives will no doubt be the brighter for it.
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