Wednesday, 1 August 2012
Yep it’s that time of year again, and even worse, it’s that time of four years. Paralympic year.
Now I love the Paralympics. I love Paralympians. They are my kind of people. I am a bit jealous though, you know, just a tiny bit. About the size of Jupiter jealous.
I’m not jealous about their success, far from it. I shall be holding my breath in the swimming, twitching and clicking through the dressage, and probably shitting myself during the weightlifting. Yep, I get that involved.
I shall weep at every win, and weep at the losses, sob at the medal ceremonies and dissolve completely at the National Anthem. It’s going to be a right snot-fest.
So why am I jealous? To be honest I don’t think I am. I am just a bit wistful. I want that opportunity, I want to be in that huge competition, I want to be a part of it, but it’s never going to happen as I have, quite simply, got the wrong disability.
It’s wrong for society, its wrong for the Paralympics and it’s wrong for me. I need a disability I can overcome. I need a disability that challenges me to find new and adaptive ways to overcome it. I need a disability that requires tenacity and guts, but is ultimately a massive inconvenience.
But like the majority of disabled people, I got a disability that isn’t.
It isn’t a Paralympian disability. It’s a crappy hiding-behind-closed-curtains disability. Is a fucking lie-down-in-a-darkened-room disability. It’s not even a disability. It’s a gang of stuff going wrong, refusing to behave, ASBO disability.
ASBO disability is a condition, it’s a syndrome, and it’s a collection of pain and exhaustion. Its fear and random, and OMG-is-that-ASBO-or-something-else rush me to A&E stuff. It’s Heartsink Doctor, its rogered-up-the-arse-by-an-elephant, it’s pathetic.
And it ain’t Paralympian.
ASBO disability for me is EDS, and FMS, and CFS, and sleep psychosis. It means that sometimes ASBO disability behaves and lets me concentrate on the ordinary stuff, like my eczema, or reading a book, but in the main ASBO disability is there, playing up, being naughty, demanding attention, making me cry.
But ASBO disability exists, and it exists for most disabled people. It’s what makes sick people disabled and disabled people sick. ASBO disability can mean you get a sickness benefit and a disability benefit, or neither, or one but not the other.
ASBO disability is currently turning the media into a whirlpool of sharks, 99% gristle and teeth, 1% intelligence. And you can’t educate gristle – God knows I have tried. We all have. We have stared in disbelief at Heartsink Doctor, realising that yet again most of a consultation will be taken up in a tedious explanation of ASBO disability. We have been left speechless in the face of ignorance from friends, family and neighbours. We have given up by the time it gets to Social Services. ASBO disability wins because we just can’t force ourselves to describe it yet again.
And because of this, because we are so exhausted by our ASBO’s, because people can’t understand it instantly, we could easily lose the battle of hearts and minds.
We may not look very disabled, and we may not look very sick. We won’t get into the Paralympics, unless they invent some very new and special events involving vomit, pain and shaking with exhaustion.
And that is why all the people with ASBO disabilities are about to be clubbed to death by the Paralympians. Or more accurately, clubbed to death by the Paralympics.
Paralympics have a classification system. It’s rough; I’ve tried to fit into it and failed. But it can neatly grade a person into a group, each group being of the same level of loss of function, impairment or absence. Use whichever language you chose. But it’s there. A quantifiable scale.
ASBO disability refuses to fit on this scale, but it won’t stop Governments and the media using this scale as the only scale.
“Disabled? No you’re not, because look at all these marvellous people who are REALLY disabled, and look what they can do”.
We’ve got weeks of this. Weeks of being told we are not disabled. Weeks of being told that Paralympians are “inspiring” and “genuinely” disabled.
Weeks of being told that we are not. Or a lifetime. But the next few weeks more so.
I can sense the clubs descending already.
Form a Turtle, man the defences, and turn up the heat on the boiling oil pan – we have a battle ahead. Let’s just hope that our friends in the Paralympics will support us as much as we will be supporting them.