Wednesday, 1 August 2012

Clubbed to death……. By a Paralympian (By @hossylass)


Yep it’s that time of year again, and even worse, it’s that time of four years. Paralympic year.
Now I love the Paralympics. I love Paralympians. They are my kind of people. I am a bit jealous though, you know, just a tiny bit. About the size of Jupiter jealous.
I’m not jealous about their success, far from it. I shall be holding my breath in the swimming, twitching and clicking through the dressage, and probably shitting myself during the weightlifting. Yep, I get that involved.
I shall weep at every win, and weep at the losses, sob at the medal ceremonies and dissolve completely at the National Anthem. It’s going to be a right snot-fest.
So why am I jealous? To be honest I don’t think I am. I am just a bit wistful. I want that opportunity, I want to be in that huge competition, I want to be a part of it, but it’s never going to happen as I have, quite simply, got the wrong disability.
It’s wrong for society, its wrong for the Paralympics and it’s wrong for me. I need a disability I can overcome. I need a disability that challenges me to find new and adaptive ways to overcome it. I need a disability that requires tenacity and guts, but is ultimately a massive inconvenience.
But like the majority of disabled people, I got a disability that isn’t.
It isn’t a Paralympian disability. It’s a crappy hiding-behind-closed-curtains disability. Is a fucking lie-down-in-a-darkened-room disability. It’s not even a disability. It’s a gang of stuff going wrong, refusing to behave, ASBO disability.
ASBO disability is a condition, it’s a syndrome, and it’s a collection of pain and exhaustion. Its fear and random, and OMG-is-that-ASBO-or-something-else rush me to A&E stuff. It’s Heartsink Doctor, its rogered-up-the-arse-by-an-elephant, it’s pathetic.
And it ain’t Paralympian.
ASBO disability for me is EDS, and FMS, and CFS, and sleep psychosis. It means that sometimes ASBO disability behaves and lets me concentrate on the ordinary stuff, like my eczema, or reading a book, but in the main ASBO disability is there, playing up, being naughty, demanding attention, making me cry.
But ASBO disability exists, and it exists for most disabled people. It’s what makes sick people disabled and disabled people sick. ASBO disability can mean you get a sickness benefit and a disability benefit, or neither, or one but not the other.
ASBO disability is currently turning the media into a whirlpool of sharks, 99% gristle and teeth, 1% intelligence. And you can’t educate gristle – God knows I have tried. We all have. We have stared in disbelief at Heartsink Doctor, realising that yet again most of a consultation will be taken up in a tedious explanation of ASBO disability. We have been left speechless in the face of ignorance from friends, family and neighbours. We have given up by the time it gets to Social Services. ASBO disability wins because we just can’t force ourselves to describe it yet again.
And because of this, because we are so exhausted by our ASBO’s, because people can’t understand it instantly, we could easily lose the battle of hearts and minds.
We may not look very disabled, and we may not look very sick. We won’t get into the Paralympics, unless they invent some very new and special events involving vomit, pain and shaking with exhaustion.
And that is why all the people with ASBO disabilities are about to be clubbed to death by the Paralympians. Or more accurately, clubbed to death by the Paralympics.
Paralympics have a classification system. It’s rough; I’ve tried to fit into it and failed. But it can neatly grade a person into a group, each group being of the same level of loss of function, impairment or absence. Use whichever language you chose. But it’s there.  A quantifiable scale.
ASBO disability refuses to fit on this scale, but it won’t stop Governments and the media using this scale as the only scale.
“Disabled? No you’re not, because look at all these marvellous people who are REALLY disabled, and look what they can do”.
We’ve got weeks of this. Weeks of being told we are not disabled. Weeks of being told that Paralympians are “inspiring” and “genuinely” disabled.
Weeks of being told that we are not. Or a lifetime. But the next few weeks more so.
I can sense the clubs descending already.
Form a Turtle, man the defences, and turn up the heat on the boiling oil pan – we have a battle ahead. Let’s just hope that our friends in the Paralympics will support us as much as we will be supporting them.

13 comments:

Ron Graves said...

I made much the same point last year
http://ronsrants.wordpress.com/2011/05/21/%E2%80%9Cchronically-sick-and-disabled%E2%80%9D-is-not-the-same-as-%E2%80%9Cdisabled%E2%80%9D%E2%80%A6/ probably more apposite this year than ever.

Ron Graves said...

Sorry about the non-working link - a perennial problem with Blogger. If you hi-light it, right-click and click Open Link, it'll work.

MEfly Slowly said...

Brilliant, ya cheered me up a treat,

from another ASBO disability owner,

although I think from a person owned by an ASBO disability is closer.

Debbie Sayers said...

Loved it...my Asbo disability is a right delinquent... Dxxx

Anonymous said...

This one just hit me as so true! http://aukgazetteer.wordpress.com/2012/08/09/how-dare-they-call-tax-payers-benefit-cheats/

How dare they call tax payers benefit cheats9

Aug
It really is a joke when you find ministers, politicians, and ignorant right wing nuts call those who have worked hard and paid into the system not only their taxes but also premiums towards the National Insurance scheme in the country and then to be labelled a cheat. In as far as I understood it was a nationally run insurance that would guarantee myself and my family to have protection when unemployed or sick and provide for a pension when I am retired in addition as payments towards a number of other things. Some people pay double of what others do simply because they earn more and I have no issues with that because it gives us a better society when our pooled resources are used in that way.

Today we are constantly told by this coalition government that this is a state handout ! Excuse me its no such thing it is a premium both I and my employers have contributed and matched too that if the scheme had been run by a private assurance company they would be in court for so much as calling me a cheat. This is the state of play here in the UK after nearly 50 years of contributions and premiums into a insurance scheme the state think they have no social contract and that its servants the ministers and leadership alike think they can simply call people cheats and that people would not be upset !

Damn right I am upset, 30 years of contributions on top of a high rate of taxes is a lot of money and according to my estimate on a salary of 50K a year that is nearly 104,000 pounds in premiums. I am not even detailing the taxes paid during that time as I know it will only make me really upset with not only the coalition and the right but also those many organisations who purport to be standing up on behalf of the tax payer.

To me this is a con job and there really is no other word for it. You pay premiums, and when you fall sick or are unemployed the insurance scheme calls you a cheat and devises all manners to deprive you out of what you have paid into not only for yourself but also for your family.

This whole issue over taking our taxes and premiums is not about scrounging but more about a government bent on cheating and breaking its own social contract set in place for over 50 years

Anonymous said...

I've been identified as a Rio 2016 Paralympics prospect. I have relatively mild cerebral palsy, which is - as you say - mostly an inconvenience. I also have refractory epilepsy, and for much of my life was having many seizures every day. Right now, I'm mostly doing well. Except for the emergency hospitalisation on Tuesday. And the seizure at the pool the week before. And... (you get the idea). I've had about 90% seizure reduction, which has changed my life in almost unimaginable ways, but my seizures are probably still too frequent for most employers to accommodate. And my sport? I may get to Rio. I may get to World Championships in London next year. On the other hand, my current medication cocktail may stop sort-of working, and I may again live my life either seizing, or recovering from seizures. (Oh, and my past months-long severe depressions were much more disabling than my CP, too!)

hossylass said...

Hey anonymous, good luck with the training, and hope you get that ASBO epilepsy nailed.
Huge hugs and wishing you all the best in your sporting endeavours :)

Anonymous said...

Nothing to do with this post but. Cameron said to Claire Rayner on her death bed that he wouldnt dismantle the NHS. She said she would haunt him if he did (i pray she is) The other day I saw the District Nurse. She told me that soon there will be no district nurses within the NHS - She told me they have been sold off to a private company.... So much for having an NHS - The whole thing is being sold off bit by bit under the table. Soon there will be nothing left!

Glynne Powell said...

Please help me to get MPs to retract untrue statements including those which insight hatred.

http://epetitions.direct.gov.uk/petitions/43843

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