Monday, June 27, 2005

Object Lesson

I've been having some physiotherapy sessions to improve my 'core stability' (and hopefully see off a little pot belly which I need to curb before it really gets going)... This is the first time in my life I've had a physiotherapist understand my condition. We have read the same books, and are getting on quite well despite a few teething problems. Initially, I found the whole thing very emotional, and every little setback had me being weepy and wanting to give it all up. Now I'm realising that setbacks are the nature of the beast. I am so over the whole crying thing - until next time, of course.

This week, I have been an object lesson for some trainee therapists. They'd read the book and seen the photographs. Having a real live specimen do the moves in front of their very eyes brought forth a range of reactions - and there the physiotherapist and I had to stop them.

With hypermobility and hyperextensible skin, you can contort into some positions which others with a more - shall we say, average constitution - simply cannot manage. Many EDS/HMS people spent their childhoods grossing out their friends, not to mention audiences at the circus. I even saw someone who had to have been an EDS person on 'You've Been Framed' recently. It does my disability pride no harm at all to learn that people with similar genetic conditions to mine were circus performers. I even had a doctor tell me to run away and join the circus once.

But in one of the books we'd recently both read, a 'patient's perspective' chapter talks about being proud of a hyperextensible range of movement instead of finding it repulsive.... I'd never in my life thought of that idea!

When you do the contortionist act, either at school or to anyone who wants to know what hypermobility is, people will often react with disgust. This is not very self-affirming.

Instead, the book suggests we hypermobiles should be complimented for our range of movement - and this is what the trainess had to stop and consider. Patients do not want to be told they are gross, especially as they are probably in your care because of a problem and are feeling vunerable. Some of the postures are not horrible to look at - for example, a full foot arch is what ballerinas strive for - we can pretty much do it from first being able to walk. For any joint, although it may look sinister to someone who can't achive it, it is simply our bodies way of moving.

So, whilst I've been working on my exercises, my physiotherapist has been working on her compliments. We demonstrated for the trainees.
"What a lovely full stretch in that leg" she tells me. "Goodness grac- erm, I mean, what a long way, a fantastic long way back your fingers go," and so on.

It really feels good. I never realised I was missing it. To be the freakshow girl did have a sort of attraction, you sort of revel in it... So how can I put this new experience of being complimented instead of being an object of horror? It's like spending your life being poked with a stick, then someone comes up and tries stroking you instead.


Tuesday, June 21, 2005

My Life As A Token Crip

Several years back I worked in a community arts organisation. I'd just finished Uni and was starting my working life as a disabled person. I'd been through the mill as a junior un-politicised crip with my Senior Citizen's art group (who all considered themselves able-bodied, but thats a whole 'nother article....). Every week I'd get cuttings from their newpapers promising extra strength vitamins on special offer, or occasionally, from the group's most eccentric member, a pomegranate.

In contrast, workshops with other disabled people meant I wasn't faced with a room full of people constantly trying to diagnose or cure me. I began to think working with other disabled people might be something I'd like to develop.

As time went by, word a bona fide crip was working for community arts got through to the local council, who paid our wages. Big Dogs in the main office began to ask me to occasionally sit on panels and advisory groups for the benefit of local disabled people. I was wide eyed and naive back then, was grateful to anyone who threw me a boon workwise, and had never heard of the phrase 'token crip', so I did it.

I have to admit here and now that I wasn't some kind of 'aware' assertive activist by any means. I was a civil service numpty who didn't have much of a clue, and shit-scared of offending the people who paid my wages (which were part-time due to my crip-ness). I just wanted to get paid the little money I (and others) thought I was barely capable of earning, thank-you-very-much (doffs cap). I was disabled, I was tame - all in all, it was a winning combination with my employers.

Plenty of times, the meetings and ideas panels would be little more than a back-patting exercise that had little appeal to the local disabled community - maybe it didn't go far enough to meet their needs or interests, or wasn't widely accessible, or not enough money was spent on publicising it. This wasn't always a bad outcome for the council - a backdoor benefit of these failure was a good reason not to spend any more time or money funding another, or sometimes, evidence that disabled people weren't particularly interested anyway. As long as rumours of its short life got into the council's newsletter, they could be seen to be 'doing something' regarding their responsibilities and targets for inclusion. I began to stop feeling optimistic when something I'd been a panel member on suddenly disappeared without trace, or people I'd met through community arts went on it and told me how awful it was. I felt guilty, started questioning whether I was selling people down the river by turning up to things and giving my support when they were well short of equal access to arts in the area.

My little insulated crip-work-boat was floating closer towards the iceberg of reality... how do you bring about change when you being to see things differently?

The worst of these meetings, the final wake-up call - and most bitter of my regrets, was to sit on a county panel who were handing out funding to small local groups to provide arts activties for disabled people. My boss, who was a bit deaf in one ear, (and so a desirable trophy for these things too) was supposed to go, but her boy fell out of a tree and banged his head. I went in her place.

At this particular meeting there was a thousand pounds to allocate to local disabled groups in a small, rural area up in one corner of the borough. It was the kind of gentle, but totally banal place where entire families of people lived, never left, then quietly died. But it had been earmarked for 'disability arts' funding. Frankly, whatever or whoever got the money in that marginal place wasn't going to get the council people any admiration or kudos, and they weren't in any disability arts networks who would give them credit for allocating the money well, so they didn't really care where it went. Strictly duty for the less fortunate, ladies and gentlemen.

Unfortunately, for any discreetly burgeoning disabled talent in that place, there was one group in the district who were front runners to get the money. They were a small group of disabled people who ran an arts magazine, feted as "by disabled people for disabled people". This is a phrase that generally means good things, so I relaxed - until they showed me copies of the magazine.

It wasn't actually a disability arts magazine in an informed sense of the word. The people from the council didn't know this, and neither did the people producing it. I was only just beginning to subscribe to DAIL magazine , but even so, I got the feeling something wasn't quite right.

What it actually was, was a magazine for a group of friends in the area who were disabled. Nice for them, but only for them and their families. I'm not saying this sort of project shouldn't get support too, but disability arts money is disability arts money. Drawings of dogs, poems to dogs, about dogs, budgies, cats or fish, photographs of cats, and more cats, even disabled cats, ain't disability arts.

This time, I thought, could be a turning point. I could speak out, question, change minds! Help make sure the money got allocated to true, red-blooded disability arts projects. My first strike for the awakening activist inside!

It didn't go as planned... I took a deep breath.

What was disability arts all about? I started by asking them if they knew. "This is it!" they said, shaking copies of the magazine at me "It's by disabled people for disabled people, isn't it?"

"Y-es," I said, "but it isn't disability arts. Look at the content. It's about their pets, mostly... and some puzzles, and some nice drawings, but none of them are about disability..." this trailed off into a kind of silence where I could feel horrified vibes seep towards me that whispered "This woman is insulting cripples...."

I fought for some poise. Like a poker game that suddenly gets serious, stacks of silence built up in the air. The action was back on me, but nobody thought I had a hand worth playing. This is bad news whatever the game. Your opponents will stomp all over you.

I rallied. "What I mean is," I said, fighting for some eye-contact "this magazine is recreational pastime stuff, things like pets, recipes, puzzles, advice on buying computers (a truly mind boggling article about 'how the internet is accessible TO YOU' that included a diagram of a computer workstation with labels pointing to 'mouse', 'desk' and 'chair', and a little statement underneath saying how they couldn't give specific advice because you had to get the right thing for you, which might be difficult if you were disabled....) I held it up.
"This is the most disability specific thing in the whole publication, but it doesn't contain any real information that helps disabled people specifically."

(Another whole other blog entry is quality in disability arts It shouldn't follow that if disabled people do something that isn't very good, everyone should pretend it's brilliant so not to upset any feelings - another hurdle with this, although I wasn't brave enough to go on and say it at the time)...

Blank looks. I was on thin ice, starting a long skid sideways.

"Look at the content," I reasoned "This isn't about disability." Blank looks. "It's the same sort of things any group of people might write about - it could be by older people, kids, any group of friends - which is nice, don't get me wrong - but it's not about their experiences as disabled people. This is what disability arts is, and its not disability arts."

A frosty silence now gripped the room. A radiator shook noisily. I thought I could see the surprise on people's faces that I'd said anything at all. A couple of people broke embarrassed little smiles, raised eyebrows - as though they were dealing with a child. I felt totally, utterly alone. They didn't want to hurt me, but I was so far behind on this it someone was going to have to put me straight.

A big, flowerclad housebrick of a woman took control with another of those little smiles.
"These are very disabled people, who write this magazine as a way of forgetting their problems," she said carefully. "We think it's brilliant they've managed to get this far - some are real characters!" She gave another little laugh and sat back. Uh-oh. I was messing with real characters!
I paused, which was a big mistake. Like a well-honed pack, a youngish man lept into the gap.
"We know it has its shortcomings," he said in an ever-so-reasonable voice, rubbing his nose fiercely, (and a little self conciously, I thought), "but it's not our job to judge these people. They are making the best of it, and at the end of the day, they are an active group who really want this money. I must admit," here with a bit more more nose rubbing, "that I had a conversation with their editor yesterday - and," here he looked around to make sure he had his collegue's support - "I might have hinted to her that the decision was... in the bag, um, well, that is to say, I told her no-one else was in the running. And she has promised to improve the quality by publishing the next three issues In Colour."
"Oooh, that'd be lovely" another lady chimed in "I could really see that looking pretty! They'd really love it..."
I could feel my junior self sagging. I didn't know where to go with my argument without sounding like I was depriving these poor very-disabled cripples and taking away their one joy in life. I was being a jobsworth, invited into their decision making process to see how supportive they were of disabled people, and bloody cheek upstart that I was, I was biting the hand that fed me, getting all nasty and political, and standing (well, sitting) in the way of other disabled people's artistic pleasure.
How could I deny them that small pleasure?
I managed a little croaky noise. "Quality is important..." I said, one hand resting limply on the magazine's cover.
"Yes, fair enough. But this is it. They are all disabled..." said flowery housebrick woman, clanking a heavily braceletted hand on to her own copy. "No-one else has applied for this money anyway, so we if we don't give it to them, no-one'll get it and it'll be carried over in the accounts to Christmas, when they'll only apply again anyway." Her eyes narrowed. I had nothin'
I managed one strangled last gasp under the weight of the glares
"Ok then..."

And left that odd rural office with the sense I'd lost...

I learned the hard way what a useless, thankless and souless exercise it is to be the tokenistic-crip-panel-whore. Say yes to every panel who ask, who only want you only because you walk funny, who will be horrified if you try any big moves - like sentences. Or reasoning. Or opinion. Just eat the biscuits like a good crip and be grateful you're being paid to be the mascot...

I stopped doing panels after a while. As I began to speak out, sometimes getting it right, sometimes getting it wrong, I began increasingly to feel like working within the system only took you so far. Could I really change things by going to a meeting and ranting at people who simply didn't understand, however good their intentions were? On occasions people looked at me if I were mooting the drowning of puppies. If you want to bite hard, it's hard to simultaneously have your neck in the noose.

However, it wasn't a completely useless experience. It made me decide which side of the fence I wanted to be on. Mine. Ours!