A long time ago, when I first became disabled, a little boy stopped, looked at me, and asked, "Does it hurt?" I knew the question was about my disability and my use of a wheelchair and I was touched by the softness in his voice, he was young enough, still, to care for everyone's well being. I told him that no it didn't hurt and that the wheelchair could even be fun. He smiled. He was glad.
But now, years later, I'm going to tell the truth about disability, "Yes, it hurts."
I am lucky because, for me, my physical disability isn't accompanied much by pain any more. That has reduced significantly over time. So when I say that it hurts, and it really does, I mean a different deeper kind of hurt.
The kind of hurt when you find out at the last minute that the room you booked for that night isn't wheelchair accessible as you were guaranteed. The painful panic that accompanies the next 10 phone calls to be told over and over again that there's no room in any inn. And when you end up having to stay 40 kilometers away from everyone else, in a small town that has a hotel with a room.
The kind of hurt you feel when you've planned to go to an event and have been guaranteed that the place is accessible so you plan to go with a bunch of friends. Only to find out that accessible means a step and a narrow entrance and suddenly you are the problem and everyone's concerned about your feelings and you are tired of having people feel for you and want it all to stop.
The kind of hurt you feel when you find out that people simply don't ask you to join them simply because they don't want to have to worry about accessibility and it's just easier. When you find out they've talked themselves into believing that you don't really want to belong anyways.
Disability hurts.
I lied to that little boy.
I hadn't meant to.
But yesterday I bashed myself around for even being disabled. I didn't want to have to go through the frustration and the energy and the whole whack of shit that comes with needing what people don't care to give, with dealing with sham guarantees, with dealing with the sudden panic of being suddenly a problem again.
I have to keep solving the same problem over and over again.
It hurts because it shouldn't.
It hurts because it shouldn't.
It hurts because it shouldn't.
Doors are heavy, and there's some idiot in the only stall big enough for me and my walker. Happens every time I leave the house.
ReplyDeleteYou get tired of it.
Yes.
ReplyDeleteAnd it hurts that people who should know, people who are paid to know, people who believe that they know - are wrong. They often don't know. They don't have a !@#$% clue.
I am tired of having to explain over and over and over.
And still they don't know. And what really, truly hurts?
They often don't appear to care that they don't know - they don't care enough to find out. If they had asked, I would have told them. Again.