The Hidden Village of Aspergers

September 18, 2012

This is going to be a political post, sorry.

Filed under: fuckwittage,m.e. awareness — kankurette @ 8:26 pm

I’ve neglected this blog for too long, especially recently as. I need to start posting again, particularly as I spent the weekend at my mum’s house, reading a boxful of letters and cards and obituaries that she kept after Dad died. I plan to get in touch with two of the writers of the obituaries, as they are old friends who we haven’t heard from for years; I have already found one through Linkedin. Thank G-d for the internet. Anyway, being reminded of how respected my father was in matters energy, and the way his writing touched so many people, inspired me to write again. The other thing that inspires me to write this blogpost is anger.

I am extremely grateful that I am able to work. Compared to other people with Asperger’s, and certainly other people with ME, I am privileged as hell. I am able to hold down a job, take care of myself – showering, making sure I have clean clothes, etc. – talk to people and manage to spend four hours a day working without feeling sick (most of the time). I am able to cope with minor changes in routine and I spend my afternoons resting. One of my greatest fears is my health deteriorating, because I worry that even if I was bedridden, this government would try to force me into work. After all, my mum’s friend Lizzie has severe back problems, caused by a lifetime of working with disabled children, that forced her to give up her job. She is barely mobile and can only walk short distances. And yet, her benefits were stopped and she was declared fit to work, even though she is no way near fit. Lizzie is not a unique case by far.

I’ve subscribed to the black triangle campaign on Facebook and day after day, I read horror story after horror story of people who are barely able to move or take care of themselves losing their benefits. Some have committed suicide. I wonder how many more people will die, either naturally or through taking their own lives, as a result of this.

I have always liked Elvis Costello’s albumĀ Spike, which was played to me throughout my childhood, and one of my favourite songs on that album is ‘Tramp The Dirt Down’, an anti-Thatcher tirade that makes me cry whenever I hear or cover it. The line that makes me well up is ‘I never thought for a moment that human life could be so cheap’. Never has it rang so true. Crazy though this sounds, I sometimes wonder if disabled people are even considered human by the current government. Do they even care if we die? After all, we’re expendable. We’re a burden, a drain on society, and most of us are probably faking it anyway, especially if we have an invisible illness – at least, that’s what the papers claim, and then we wonder why hate crimes against disabled people are on the rise. There were 2095 crimes against disabled people recorded last year, compared to 1559 in 2010. That’s pretty worrying. How many will there be this year? Even if the Paralympics does raise the profile of disabled people like never before, will it be enough?

When George Osborne presented medals at the Paralympics – which were sponsored by ATOS, which is kind up there with, say, McDonalds supporting an event promoting kindness to animals – I thought, “Well, Chris Morris, you and your fellow satirists can retire now. Satire is dead.” It is both darkly hilarious and disgusting to see the very people who are taking benefits away from disabled people, Paralympic athletes included, giving medals to disabled people and sponsoring an event concerning them. For two weeks, disabled people are heroes, inspirational figures, and then it’s back to normal. I’m not having a go at the Paralympic athletes. I think they’re incredible and they deserve acclaim for their hard work, just like their able-bodied counterparts. I just find the hypocrisy of the government around the Paralympics absolutely sickening, just like Cameron praising the Olympic athletes while funding towards sporting activities is being cut.

Disabled people deserve better than this. The many should not be punished for the actions of the few idiots who do fake disability. It is not practical to have people basically coerced into working jobs that they are not physically capable of doing, especially if said jobs only make them worse. And with jobs disappearing due to cuts and becoming harder and harder to obtain, what is left for the people taken off benefits? Are they just expected to starve to death? Does Cameron think relatives will help them out or something? I’m lucky enough to have a great network of relatives who will take care of me – my mum and auntie took turns looking after me in the week after my eye operation, and made sure I was OK – but not everyone else is. Maybe I’m sounding hysterical, but I’m tired – I’ve had a bit of a flare-up this week – and I’m angry. I miss my dad like crazy but the one good thing about his death is that he’s not around to see what this country is turning into. I just hope to G-d that we never lose the NHS and become like the US; I have heard so many horror stories from American friends, and it terrifies me to think that, in the event of an operation like my last one, I’d be forking out thousands of pounds, which I do not have.

While this lot are in control, I pray that my health does not get worse. I have an invisible illness, and good days and bad days. Sometimes I can get through my shifts OK, but on other days, like today, I’m not so lucky. My Asperger’s shouldn’t hold me back too much, but my ME does, and although Asperger’s is a lot more in the mainstream than it was in 1994, so many people still think ME is fake. Invisible illnesses are more complex than they seem. They are not black and white. Just because I have good days does not mean I am faking. Hopefully, it will never come to the point where I am too ill to work. Hopefully. The consequences are too horrible to think about.

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