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.
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.
