I was just about to push myself over to the ramp, from which the young boy, with autism and in distress, had exited with his staff. The boy was calmer now, at the end of the tunnel than he had been at the beginning, due to the support given him by his staff. As my hands touched my wheels a woman coming up the stairs beside the ramp caught my eye and said, in a loud but conspiratorial whisper, “At least you don’t do that!” Then, she was gone.
It had happened in the blink of an eye.
Yes, the boy with autism had been loud and yes he was in distress and yes his behaviour was different from all those around him at that moment. All that’s true. But her comment seemed to imply that though I’m in the disability pool with that guy, I’m not in THAT deep. The disability hierarchy at it’s worst, some are more valuable than others, some are more acceptable than others, some have lives that are more worthy than others.
“I didn’t mean YOU,” was a comment made when someone commented to me about how much in taxes are gobbled up by support for people with disabilities who, “take but don’t give back.” I’m always shocked to hear this attitude but I’m particularly perplexed when it’s stated by a direct support professional. Really? I’m supposed to be glad that you exempt me from the general category of ‘useless eaters,’ to borrow a phrase from a former regime.
The woman probably thought that she was giving me a compliment. Letting me know that she saw me as ‘different’ and ‘better’and, to a greater degree, ‘acceptable.’ But she was also saying that there are the kinds of differences that are worse to the point of being ‘unacceptable’ and therefore unworthy of … what? … public space? … respect? … life? I don’t know.
I see this hierarchy sometimes within the disability community itself. I’ve had people with intellectual disabilities say they feel sorry for me because I use a wheelchair. I’ve heard people who use wheelchairs who really want it made clear that they don’t have an intellectual disability. I’ve heard parents make it clear that ‘at least my child isn’t or doesn’t or won’t…’ We’re good with who we are but we really want people to know who we aren’t.
I identify more with that young man with autism than I do with the woman who spoke to me. I know what it’s like to have my body and my presence scream out my arrival at an event. The stares and the fear and the confusion that are resultant simply of me coming into the lobby of a theatre, the entrance way of a grocery store, or even rolling out of my building and on to the street. I get it.
I’m as loudly visible as a scream in a tunnel.
Which is why I spoke up when … (part three to follow)
