All the world's a wankstain rant coming up. You have been warned. It's long, and I'm sure most people will find it very boring. You should therefore view reading this next entry as your challenge of the day.
I remember reading something Tanni Grey-Thompson wrote in Disability Now shortly after she had her baby girl in which she remarked that she had never felt more disabled. I'm not surprised... when my Mum went into hospital to have me she wasn't even allowed to take her own wheelchair with her. That was 24 years ago, but some things will never change.
I'm not writing about childbirth though. I'm neither pregnant nor likely to be at any point in the forseeable future. Sorry Mum.
I've felt more disabled in the last couple of weeks than I have done in a very long time.
Here is where I feel the need to point out the difference between disability and impairment. My impairment is Osteogenesis Imperfecta. My disability is the world we live in. For example - the reason I can't get on the tube has nothing to do with me having Osteogenesis Imperfecta, the reason I can't get on the tube is because stairs and escalators are put in my way. This outlook is called 'The Social Model Of Disability'. The alternative is the Medical Model which is bad and wrong and is the idea that an impairment is the disabled person's problem that they need to get over. This is the outlook held by those mean, physiotherapists that would make me walk, despite me howling in pain when I was at school.
Anyway... yes, in the last couple of weeks, my impairment has not been any worse than usual (though if someone could explain the pain in my left hip to me I would be eternally grateful), but I've been more disabled.
It seems that very nearly every new person I've met has been obsessed with the fact that I use a wheelchair. Even people who've known me in the past have suddenly become flustered about me being in a wheelchair before finally going "oh, well, you know what you're doing." Funny that.
I've had people try to open conversations with wonderfully exciting phrases like "I didn't realise you could stand up! I thought you were confined to [pointing to my empty wheelchair] that." (At which point I have to interject that there is nothing confining about a wheelchair. It is a tool of enablement).
Other sentences that stick out in my memory:
"You drive a car? Oh, well done!"
"You have a job too? Oh, aren't you good."
"I've never seen anyone in a wheelchair volunteering before."
"You went to university?"
"You're temping? Oh, they should find you a permanent job." (If anyone knows who "they" are can you let me know, because I want to tell them that I want a permanent job where I can surf the internet and watch TV all day, and yet earn enough to pay the rent of Nice Flat and still be rich enough to get ridiculously drunk every night, and to be able to think of Harrods Food Hall as a reasonably priced supermarket)
Plus, the usual barrage of "Did you have an accident?" that I get all the time ("Plenty. Thank you. I once broke my arm simply eating my dinner. Which accident would you like me to tell you about?"), and all the "aren't you wonderful"'s. No, actually, I'm not wonderful. I'm a fat, foul-mouthed lazy cow.
Of course, these people that think I'm wonderful for going out to work, or driving a car are making a value judgement about my existance. I once had someone come up to me in a club and inform me that I was so brave and wonderful for going clubbing even though I'm in a wheelchair.
"There's nothing brave and wonderful about wanting to get pissed and stick your tongue down someone elses throat, is there?" was my reply.
I'm a cripple, therefore my life is supposed to be so appalling that I can't even face getting out of bed in the morning. I do have trouble with the thought of getting out of bed every morning, but that has nothing to do with being disabled... I'm a fucking lazy cow, I'm in love with my duvet and upon waking up I've gone without caffeine for a whole 8 hours. How is getting out of bed supposed to be easy? I wonder if it's possible to set up an IV drip of Red Bull on a timer, because I think that would be the most satisfying and encouraging alarm clock imaginable.
While these people think I'm so brave, as they are clearly making assumptions about the quality and value of my life, I'm sure that they'd be the first to want to switch off my life support machine if I had an accident "to end my suffering." News stories like this constantly serve to remind me of that. For all the respect The Guardian recieves in our society, they can't report on disability to save their lives. They can't even write a paragraph without throwing in the word "handicapped" just to offend, and they wrote The Most Patronising Story In The World... Ever! on the subject of "the most handicapped [sic] girl ever to get into Oxford". It was written like it had been taken straight out of the pages of The Sun. I read it on the web, so there wasn't a picture of her that they could airbrush out and just show the non-disabled people around her though.
While I was volunteering at the Crisis shelter last week, I had another volunteer wanting to come home with me one evening. Not because she wanted to get into my knickers (people very rarely do... I'm what would be described by Essex folk as 'a minger'), but because she assumed that I lived upstairs and therefore was unable to get into my own house without assistance. Despite the fact that during her probing I'd mentioned that I've been impaired all my life, and that I've only lived in this area for 6 months. She actually thought I didn't have the common sense to select to live somewhere that I could get in and out of independently. (Before any pedants feel the need to Email me about this, yes, I am aware of the statistics of people with mobility impairments that are forced live in inaccessible housing. My father once had to go without a shower for a year because his local social services wouldn't get their finger out to refit my parents bathroom).
This woman is someone that has had a taste of disability. She was telling me that she was mobility impaired for a while following illness. But, she had "physiotherapists to teach me to walk again and uses buses and trains and things," and her comments and things other people have said to me has reinforced my belief that people who have had temporary impairments have had the medical model, that it's "their fault" and "their problem" drummed into them even more than most members of society. Maybe my life calling is running sociology lessons in rehabilitation units to teach people about the social model?
This is all the way people perceive me, of course. I did in addition last week find myself physically barriered by ignorance. My local wheelchair service recently insisted on buying me a new wheelchair (very long story), and the supplier insisted that it had inflatable tyres "to provide a more comfortable ride" (this chair certainly does provide an interesting 'ride' and I've finally found out why tactile paving slabs were really invented. I think people think I'm a really big When Harry Met Sally fan, or rehearsing to do "The Woman Who Loved To Make Vaginas Happy" in The Vagina Monologues). I'd pointed out that it's not practical for anyone to have inflatable tyres in London with all the glass and other detritus of London life on the pavements. Sure enough, on New Years Eve Eve, I found myself having to make my way from Battersea to Golders Green at 1am with a flat tyre. Comfortable ride my arse.
I did warn you that this was a "All the world's a wankstain" rant.
People always want to think that someone has a worse life than them. Which is why I will always remember the man who tried to teach me to cross the road a couple of weeks ago (I've only been driving a car for 8 years. I think if I didn't know the rules of the road by now...). Not only did he feel a compulsion to tell me it was safe to cross, he also felt the need to cheer me with "go on girl, go on, that's it, you can do it, you're nearly there... yes!". He clearly uses road crossing as a sex substitute which may well make him the most socially impaired person on the planet.