Wednesday, May 18, 2005

Crip Logistics

I know the day is coming when I have to hand over my car keys (largely) to a support assistant. I say largely because I will do short distance domestic driving occasionally, but driving for my work will be done by someone else in future.

I often need to go out of town for projects now. This is a good thing for me as an artist, cos it gets me around and networking. It was something I had to decide to do, or not to do for career development recently - basically, stay local and work with organisations because they were close by and I was being a limited crip, or go large, and travel to more versatile opportunities and meet people. Not that I work in projects all the time, but if I want to be paid independently by funders like the arts council, I also have to be prepared to travel to their offices and events they organise so I can raise my profile.

Hence all the hotel rants springing up lately... there's more on the cards!

I'm ambitious. For a while, all that was really holding me back were the crip logistics of going places. I'd worry about long journeys, the driving, the staying overnight and pacing myself. At first I convinced myself instead I would be happy contributing to local arts things, painting or printing 'pretty fine art furniture' - souless contemporary art pieces people could hang on the walls of their trendy homes.

But I'm too much of an old tumb-thumping-whinge-bag of an artist to be really content doing this. I don't like begging people to look at my portfolio and be worrying about making regular profits. That bit in particular is hard to sustain if you have a fluctuating condition. Anyway, I'd rather make art that reflects my life, and as a crip I have a lot to say. Artwork that travels round for a while means I have a burst of activity, then I can flop for a bit. In the meantime it gets out and about so people don't forget who I am, and I sit at home in my dressing gown writing a blog and plotting the next one, hoping to make it less strenous - in October last year I truly went to bed so exhausted I thought I might die. It doesn't make for a long career to do that too often.

Disability Arts has got my heart and soul, and it's an exciting time to be out and about as a disabled artist. Sod trying to be in with the local snobby artists who look down on me cos I'm disabled. People are beginning to wake up to the fact disabled society has been under-represented in the arts and art history (in history and the human race too, I hear you cry...). The Arts Council is thinking seriously about supporting disabled artists properly. Like me! Just gotta go get it.

Now at this point, I should say re. Disability Arts -it is not a situation I can explain fully as part of these few musings. Politically there are a lot of ins and outs, right ways and wrong ones, and if you're interested you may be aware of these, or maybe if you have a growing interest you'll look for them. But for this blog entry understand that I intend to develop my career to be a part of this world, in fact I am already making progress, and I want it to continue. Crip logistics are not going to stop me - realise what a huge revalation this is - it's still happening long after I thought things would be sorted. Will they ever be? Possibly not. But for the first time I can say decisively I am in for the long haul. yes. Thinking big. National. International?

As any crip will know, organising your life can be complex. Around January time this year, I was seriously questioning myself as to whether to go onto Incapacity Benefit instead, in the light of fully understanding my condition and the prognosis. My doctor would have signed me of no problem. Stress free. That, versus making major changes - as I've already said, house, wheelchair, car, bed all have to happen - and on top of that, work. Mainly driving.

As I can't drive alone anymore, for an artist with an unpredictable, oddball career, imagining how that might work is a nightmare. My timetable isn't regular. I might need someone driving me for a week, a weekend, a couple of hours a day, one day a month for six months, overnight stops, and on short notice for conferences and the like. It always makes me laugh when I read about Mariah Carey and Jennifer Lopez having entourages, because this is kind of how I view the way I need people to work for me. My care needs in themselves aren't complex, so this person would be mainly a packhorse and driver. We'd spend hours together, so we'd have to get on - it would help if we had similar interests. Similar tastes in music - and similar attitudes to driving.

This has been one of my biggest stumbling blocks over organising somebody. I love driving myself. I don't want to sit and watch someone else do it instead. I'm shit at navigating, but I love speeding around places. I'm currently working somewhere that is a 120 mile round trip - much too exhausting, but also wonderful to be alone in the car, in the sunlight, driving fast, stereo on, ipod hooked up.

Music is the next big issue here. If I'm employing them and they're working for me, can I insist on my music being played? Would we have to share eartime? What if they liked, say, Brynn Terfel or Johnny Mathias (an old childhood nemesis)? The atmosphere could get nasty. I need Muse, White Stripes and Jeff Buckley - would it be cruelty if they didn't?

And the speed. Now, in some ways, getting off my speeding habit might be good for me. Not that I've got points or anything - my current car is a little supermini thing, 1.4 - basically, put your foot down, it goes. I know some men reading this might be laughing, but what the hell, I'm more of a town cafe racer than a motorway racer - the little car hasn't got the kick over 70 mph. But at town speeds, well, I can say with confidence some years ago I did an arts project with some boy racers in my town and I beat plenty of 'em off the lights. Yes. I was an honorary girl member by the end. I think it made me cool with a bunch of 18 year old chavs. Hmm. Because if I am speedgirl, and if my new driver is not, might it drive me a little bit round the twist? Overtaking stuff will not longer be my decision - what if my new driver is a granny? It will be best to interview / advertise on driving skills and not care needs, so I might avoid the granny factor there. But god, I'm just nervous we won't get on and they'll hate me, or I'll hate them, or there's a power struggle between me thinking I'm the boss because I'm employing them, and them thinking they're the boss because I'm a poor helpless crip who can't drive...

We'll just have to see how this one pans out. At least I can sack any insubordinate ones - because these are my crip logistics, and I'll be in control... at least that's the plan.


kezzykat said...

Hi AF,

I hear ya girl. I have been musing myself this week about a lesser evil, but still a side step for AUTOMATIC car. Right now my pain and instability in my hip make it almost impossible to drive on a bad day..heck a good day is hard..All because my clutch leg is my 'bad'/worse one.

For me this is hard to contemplate..I am in reality not that bothered about the automatic per se, but the fact that JUST beacause of my impairment I am HAVING to think of it..I also fear that one day I will be looking for a designated driver....

What struck a chord was the power struggle ref in your post, the 'whos the boss'? thing..As bad as it sounds I would feel beholden and in debt to someone who was driving me....even though I would be the emplyoer......

let us know how it pans out


The Goldfish said...

Well I don't have any advice, Fang, but I must say what an inspiration you are. Sorry in all that. You're not brave or anything, I wouldn't go that far, but I was feeling really glum today and thinking that I'm never going to be able to achieve what I want to achieve against my particular set of obstacles, but then I read this and thought, by golly, why not?

You can tell I'm very ill because terms like "by golly" appear in my internal monologue...

Thanks for being such an old tumb-thumping-whinge-bag of an artist. :-)

Eliza said...

Sorry, Fang. It's exciting that you have such cool stuff that you NEED to get to, but I know having to give up the independence and depend on someone else to shlep your ass around is hard.

I stopped driving about a year and a half ago 'cause I realized I had no business being on the road, and it sucks. (Fortunately, I currently live in NYC, so I can get by without a car just fine, but city living (walking/dealign with ten billion stairs on the subway) is wearing me out, but I feel like I'm a prisoner here since I can't imagine how I'd live, as a single person, in a sprawling suburb or even a city with subpar public transport (I know I couldn't/wouldn't have given up driving if I were still in Oakland: I really should NOT have been driving during the first month or two when my body first fell apart, but I didn't have much of a choice).
(Although, I'm hoping to get back to driving at some point. My vertigo is one of the few things that my surgery really DID help, so I don't think I'd be likely to kill people as I felt before. But, I can't turn my head now, so I guess I'd need some giant mirrors or something. I don't know. And I just can't imagine holding my arms out like that for the steering wheel. So, who knows? But, at least now, I'd probably just be hurting myself and not killing other people).

Btw, I don't know if I just forgot or I never read that one post from Feb. or what, but all this time, I thought you had never mentioned your diagnosis/condition here, so I was just blown away to come across that old post today (on a Technorati search) and realize that you have EDS (as I do, too). Wacky.

(Of course, now I'll probably discover that I've commented on this very thing all over the place and just completely forgot, and then I'll have to hide in embarassment).

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