06 May 2011

♫...So scared of breaking it that you won't let it bend...♫

There's an awareness day for everything these day. And so today is that day for my mobility impairment. Today is Wishbone Day, raising awareness of osteogenesis imperfecta.

There are lots of mythconceptions about OI around. Most notably the lies peddled in the dreadful M. Night Shyamalan film Unbreakable. Despite it being 11 years old, and you'd think most people would expel a film that dire from their memory, I still get people saying "oh, like in Unbreakable?" When they find out I have OI.

No. Not like in Unbreakable. For starters when Samuel L Jackson "explains" OI in the film he claims that type I is the mildest and it's a spectrum through to type IV which is the most severe and usually fatal at birth if not before (no mention of types V to VIII but I think at least some of those hadn't been discovered then). I am a 31 year old type IV. My mum who was also a type IV made it to 70 before dying from her familial predisposition to drop dead from heart failure at a reasonably young age. OI was not a contributing factor in her death.

It's actually type II that's fatal. Type III is usually pretty severe. Type IV varies from very mild to almost as severe as type III. Type I is different to the other 3 well established types. Bone breakage in types II, III and IV is the result of poor quality collagen. Collagen being the protein that provides reinforcement for bones. Type I is the result of a lack of collagen rather than the right amount of crappy quality collagen so it's quite different to types II - IV. There are type ones around who've had more fractures than me so to claim it's the "mildest" type is untrue.

There are many other inaccuracies in the film. By casting a non-disabled actor to play a person with OI he was, unsurprisingly, lacking all the physical characteristics of the condition. Elijah says he's had about 50 fractures; roughly the same number as me. Medical care of people with OI is constantly improving and Elijah was much older than me so he would've had worse medical care than I did when I did the bulk of my breaking as a child. Between not being very sturdy to begin with and then being constantly broken; bones with OI tend to bend. The bones in my right forearm have a bend in the middle of about 80°. The bones in my left leg are bent to about 30°. Had a I received the medical treatment a child with OI would receive today my bones would be less bent. They probably wouldn't be as straight as a person without OI's, but they'd be straighter than they are.

Elijah, being roughly the same as me in severity, should have bent bones. Bones bent more than mine because even less effort would've gone into straightening them. Samuel L Jackson not having OI has perfectly straight bones. Total credibility fail.

The other glaringly obvious characteristic fail is the eyes. Because collagen is the protein that makes the whites of your eyes white, most people with OI have blue scleras. Most, but not all. However, the people that do have white scleras are not type ones. Types ones always have blue scleras (like I said, it's different to the other types). SLJ does not have blue scleras. They could've made his scleras appear blue of course, in many films and TV shows you have demons and other monsters with completely black eyes. Tinting SLJ's scleras wouldn't have been too hard, whether through contacts or SFX in post-production.

So, yes. My impairment is nothing like Jackson in Unbreakable. Also, spending a lot of time in hospital as a child doesn't turn you into a terrorist.

Unbreakable isn't the only film to peddle poor facts about OI. Amélie is considered by many to be a piece of loveliness. It made me want to punch my TV screen. Amélie's neighbour with OI lives in a padded flat. Though perhaps I could do with his padded tellybox so that if I did end up punching it in frustration I'd be less likely to break my fist.

People with OI do not live in padded houses. There's no point. Breaking your bones is such a random thing. I've fractured my spine while sleeping on something soft and padded whilst conversely I've gotten drunk, fallen down a flight of steps in a club, and not broken a thing. Over-cautiousness can actually result in a reduction in bone density so living in a padded house can make you more, not less, likely to break.

I'm a big fan of forensic TV shows so obviously I watch Bones. OI has cropped up a couple of times, once just as a mention with regard to some ancient bones that Brennan had been looking at. In the episode "The Truth in the Lye" in season 2 they found some bones in a bathtub on a building site. Brennan looked at the bones under a microscope and noticed the lack of collagen.

The big fact fail here was with regard to reproducing. Bones said that in all the other types OI is the result of a spontaneous mutation but sometimes it's inherited in type ones. Hello! Type IV child of a type IV right here! And I'm not unique, I know tonnes of types IIIs and IVs who've had kids. When a person with OI has a child there's a 50% chance of the child inheriting it. Yes, OI is often caused by a spontaneous mutation. In the case of my family my mum was the mutant and I inherited it from her. But claiming that it's only type ones that breed is ludicrous.

The most common storyline when OI crops up in film and TV is that of parents being falsely accused of abuse. It's been done in Home & Away, ER, Casualty and many more shows.

It's an incredibly serious issue and unlike the other OI storylines I've mentioned it's one that's usually fairly realistically represented.

The Home & Away storyline was in the days when Pippa had a house full of foster kids. She fostered a child who'd been taken away from his parents because his recurrent broken bones had led to his parents being accused of abuse. Whilst in Pippa's care he broke his arm. Pippa took him to the local hospital where he was treated by a doctor who didn't sleep through the lecture on OI in her medical training. She diagnosed him and he was returned to his parents.

In ER Carter treated a kid who'd been brought in with a persistent cough. A chest x-ray revealed numerous broken ribs. Carter ordered full body x-rays and found that the kid had old and healed, currently healing, and fresh fractures all over. Carter called the police and social services claiming the mother had been beating the child. Carter performed a lumbar puncture on the baby and then took some more x-rays. Looking at the second set of x-rays Carter noticed that there was a new rib fracture not on the first set of x-rays and realised he'd broken one of the kid's ribs whilst doing the lumbar puncture. This resulted in him diagnosing OI and calling off the hounds.

In real life however, these stories don't always have a happy ending with the kids being returned to their parents. In some cases the children end up being adopted before diagnosis and adoption orders cannot be undone. Even when the child is returned to the parents it's often after the psychological scars of the child being fostered have been inflicted on both parents and child.

These days there are many diagnostic tests available for OI, there's no need for families to be destroyed. But it still happens because doctors don't think to check for it and social workers - in this target-driven post-Baby P era - don't mention it because they're desperate to whisk kids away from parents to meet their targets for kids fostered.

Wishbone Day could be a wonderful way to target doctors and social workers, to make them aware of OI, the clinical presentation, how to differentiate it from abuse, and how to test for it. But from what I've seen that level of awareness-raising aimed at the people who need it isn't happening. It's seems the thrust of Wishbone Day is "wear yellow and do the Facebook status meme," which isn't going to raise awareness amongst the people that need to be made aware. I'm aware that even this post picking apart media myths of OI is slightly redundant because it'll mostly only be read by people that know me so aren't gonna be taken in by Shyamalan's bullshit. So I'm being no more helpful to the cause than those who are simply changing their Facebook status and I throw my hands up and admit that. We need awareness targeted where it matters: A&E staff and social workers. Until that happens I think Wishbone Day is a bit wishy washy.

03 May 2011

The #no2av campaign's preying on the uneducated

I've just been talking to my dad on the phone. He has a postal vote so has already voted in the referendum.

My dad will be 77 in July. He grew up long, long, before disabled children had any right to be educated. He was ignored in mainstream school and then sent to a segregated college where he was taught nothing much. No-one taught him to read until a family friend took on the challenge when he was 21.

In addition to poor literacy due to no-one bothering to teach him until he was an adult he's almost certainly dyslexic. They didn't do much diagnosing of that during World War II.

In addition to that it's only been in the last 2 and a half years since my mum died that he hasn't had anyone living with him to help him understand things like the instructions on a polling card. He can read well enough to read the names on a card and identify which are his preferences. He can also count to three so would be capable of ranking his preferences in order.

One of the "no" campaign's loudest cries is that AV is too complicated for the masses. That you need to be some kind of genius to work out how to fill in a polling card under AV.

Out of fear that he wouldn't understand how to vote under AV; out of fear that AV is too confusing and too complicated, my father voted "no".

I am furious that the "no" campaign are preying on people like my dad by telling them they're too stupid to understand AV.

If my dad really believed that FPTP was a better system than AV I'd respect his choice. But that's not why he voted "no". The "no" campaign took advantage of his poor education, of his illiteracy, and his almost certain dyslexia by telling him that under AV he wouldn't be able to understand his polling card. They told him he was stupid and he believed it.

How many more people are going to be tricked into voting "no" because the campaign are preying on their poor education, their learning disability or insecurity about their intellect and telling them that they're just not smart enough to get it?

01 May 2011

♫...Somebody tell me why I'm on my own, if there's a soulmate for everyone...♫

Written as part of Blogging Against Disablism Day 2011.

"You could get a girlfriend, you just need to be more confident..."

...Is a sentence I hear all the time. And it's such a load of horseshit. Women want me about as much as they want a particularly severe case of haemorrhoids and all the confidence in the world can't change that.

On the couple of occasions in life when someone that I don't find attractive has told me they fancy me (I'm 32 this month and it has really has only happened a couple of times) I've been flattered. My ego has been known to break into a little happy dance. But whenever I tell someone that I think they're hot their standard response is to never speak to me again. I really am that repellent to others. It's not being unconfident when people really do think you're repulsive.

But also I'm not lacking in self-esteem; I would totally go out with me. I think I'm smart, funny, reasonably charismatic, interesting, I always smell nice and I enjoy my own company. If anything I'm over-confident to the point of being delusional because it's clear that other people do not view those characteristics in me.

I spent most of my adult life trying to look at the world through "people are innately not disablist bastards" tinted glasses. I wanted to believe that the only reasons people were so repulsed by me were because I'm fat, ugly and annoying. Then I read the results of the 2008 Observer Sex Survey in which 70% of respondents said they'd never shag someone with a "physical disability". And that's only the people disablist enough to admit it to the man from Mori with a clipboard. You can be sure that, actually, many more people would never do one of us but they're too ashamed to admit it because they know that being prejudiced isn't cool.

Accepting that most people would never go out with me because they're disablist was, in a weird way, an exercise in self-acceptance. It made me take off those tinted glasses and accept that the reason I'm perpetually single and haven't had sex for [mumblemumble] years probably isn't because I'm fat, ugly, and annoying (even though I am) but it's because they're discriminatory arseholes.

Of course there are many, many, disabled people in healthy relationships. They managed to find people from that 30% who aren't so prejudiced. With there being so few decent people around I presume that 30% can pick and choose from whoever they want because they're good people. Which does then kinda come back round to the "I'm fat, ugly and annoying" thing. If they've got the pick of the crop then they've got absolutely no reason to choose me.

With gay/bisexual women being a small sector of the population, and only 30% of them being willing to date me on grounds of my impairment there's only going to be a couple of thousand women in the country who would be willing to go out with me. Then you have to take away those that are in relationships, those that wouldn't go out with me because I talk too much, those that might be willing to see past my impairment but wouldn't date a fatty, those who might be willing to give me a chance but geography would make a relationship impossible, etc and there's basically about 12 women left in the country that might be willing to go out with me. And what are the chances that our paths will ever cross or that they'll actually fancy me?

You might think "but surely lesbians would be less disablist than straight people. After all, they understand and experience prejudice too?" Last year a friend cajoled me into trying online dating. It was not a successful experiment. So many women say in their profile "no crazies" and one even said "no strange limps". Disablism is just as ubiquitous among gay people as it is among the rest of the population. And then of course there's all the other reasons women wouldn't want to be with me; they're only interested in skinny women, they have a minimum height requirement (though in my case that's also disablism, my impairment is a form of dwarfism), etc. The experiment lasted a month. I gave up.

Because I've been single for so long people now see me as asexual. Yes there's the general cultural myth that disabled people don't do it, but the perception of me personally goes over and above that. People who know better than to be mythtaken (for example disabled people or people who are currently/have previously dated a disabled person) see me as asexual too. People no longer introduce me to their single lesbian friends because they just perceive me as someone that's alone in perpetuity.

Another area where I think disability/disablism is an issue is around "who is gonna wanna go out with someone who's ill all the fucking time?" You plan a lovely romantic evening out and at the last minute I'm too ill to go. I promise I'm going to cook you an amazing dinner and you get home from work to find me curled up in bed clutching the morphine and gibbering incoherently because I'm in so much pain. You get a cold and know you're going to pass it on to me and that it'll render me useless for 3 weeks because my immune system is so knackered. The only possible perk to dating me is that you know when I say "not tonight love, I've got a headache" that I'm really telling the truth.

If I'd been in a relationship with someone when I got sick I think it'd be a different story, I don't think they'd have dumped me for being ill. But when someone's out looking for their perfect partner is "chronically ill" really going to woo them?

Of course, being too ill to go out a lot of the time and being too poor to go out all the time (because my weekly income on benefits is £67 a week short of the amount recommended by the Joseph Rowntree Foundation for a minimum standard of living.) does mean that my chances of crossing paths with those aforementioned 12 women who might be willing to give me a go is even slimmer.

Another thing that makes me unattractive is that I'm not good at being what I'm supposed to be. There's partly the fact that women are supposed to be quiet and nice and lovely, and I'm loud and sarcastic and rude. But the main issue is the disablist notions of what a disabled person is supposed to be. Disabled people are supposed to be seen and not heard. We're supposed to be all smiles and not tell people who patronise us to "fuck off". We're supposed to be grateful for scraps of access and not complain when we're treated unfairly. We're basically supposed to look and act like we've just rolled out of a Children In Need appeal.

I do make myself heard. All the time. I'm extremely loud and outspoken. I will swear at people who belittle me. I will complain about bad access or poor treatment. I'm rude and sarcastic and misanthropic. Even as a child I was never cute enough for CiN. Instead of getting picked for "make a wish" type trips to Disneyworld, I got banned from school holidays.

Last year I was at an academic conference and one of the speakers was talking about academic theories of cuteness. It was so interesting. One of the things she pointed out was that things that are considered cute are often rendered impaired and she gave the example of Hello Kitty not having a mouth. Hello Kitty is considered cute in part because she can't talk back. I talk back constantly and in a society that says disabled people should only be tolerated if they're adorable I'm a pariah.

As if all this wasn't enough to guarantee me a life of chronic singledom, I'm socio-economically unappealing thanks to the government's benefits bullshit which means that the only women I could ever live with are someone who is also on benefits or someone who's rich enough to "keep" me. And as anyone who's ever met me can confirm; I'm independent almost to the point of self-destructiveness. Me being a "kept" woman would almost certainly result in bloodshed.

At the moment if I were to move in with a partner who had a job I'd lose my Housing Benefit and my Income Support leaving me with my Incapacity Benefit for any contributions to running of the household and anything I wanted for myself (like my addiction to Lush). I'd also still have my DLA to cover the extra costs of being disabled. Losing Income Support would mean I'd lose my free prescriptions, my free NHS dentistry and my subsidised glasses. So I'd be a moderate financial burden on my other half.

But under the plans for Employment and Support Allowance (ESA) I'd only get to keep the non-means tested bit (the equivalent bit to Incapacity Benefit) for the first year of us living together. Then my only income would be my DLA, which is already accounted for because disability is expensive. I would be a total financial burden on my partner. "If we move in together you'll have to financially support me completely," isn't going to win hearts.

A couple of months ago I was having dinner with my doppelgänger/clone/mini-me. She's planning to move to London when she graduates from uni. She said that my inability to get a girlfriend worries her. She'd assumed that being a lesbian in London was like being a kid in a sweet shop. I think that's a really good analogy...

Imagine you're staying at your diabetic dad's sugar-free house. You're lagging in energy, you've got stuff you need to get done and you need a sugar fix. You find a slightly dusty Werther's Original in the back of a drawer. It looks a bit gross but you eat it because it's that or nothing.

Imagine you're in a sweet shop. There's thousands of delicious looking sugary things wall-to-wall. In the corner you spot one lowly, dusty, Werther's Original. You wouldn't touch it with a bargepole when there are so many other wonderful things to choose from.

I'm that dusty Werther's Original. When I lived somewhere less well populated, and certainly with a smaller gay population, the odd woman was willing to go on a date with me. In London any lesbian has a plethora of women to choose from; so why on earth would she choose the sickly cripple who also happens to be fat, ugly, annoying, is rubbish at confirming to social rules and is a financial burden?

With 70% of people being too disablist to date me and the remaining 30% being put off by my looks, my behaviour that doesn't conform to the social roles expected of me, my being a financial burden or simply just not fancying me; how can those people who say "You could get a girlfriend, you just need to be more confident," really believe the words coming out of their mouths? Especially when I'm already confident beyond the level I should be given my lack of hotness?

It's quite depressing that with quite a high level of certainty my future involves dying alone and getting devoured by my 37 cats. There are lots of things that could change that, as a culture we could address the attitudes to disabled people that result in 70% of people being unwilling to shag me. We could fix the benefits system so I wouldn't be forced into being a financial drain on a partner. We could fix our social ideals of what a "good" disabled person is. But telling me to be more confident won't make any difference whatsoever.