Monday 24 October 2011

30 Pieces of Silver - The International Paralympic Committee and ATOS Origin

The following is the text of a letter I have just sent to the International Paralympic Committee (info@paralympic.org) regarding their partnership with ATOS Origin - they of the appalling record for disability assessments and cavalier attitude toward disability rights, not to mention freedom of speech. If you aren't familiar with ATOS, you can read the full and unpleasant story of my encounter with them here, and mine was a relatively positive example in comparison to many of the tales of abuse out there. I literally cannot think of a worse company for the International Paralympic Committee to partner with, yet there they are, taking their 30 pieces of silver, kicking disabled people and everything the Paralympics movement stands for in the teeth.

If you don't think this is good enough, if you think the IPC should know better than to partner with a company that promotes the perception of disabled people as scroungers, refuses to meet our most basic access needs and rolls out the lawyers when disabled people complain, then I urge you to write to the International Paralympic Committee at info@paralympic.org and copy it to your national paralympic committees (see here). Feel free to borrow from what follows, but the message will be stronger in your own words and experiences.


Dear Sir,

  As a disabled person I have no option other than to write and express my utter disgust that the International Paralympics Committee have entered into a partnership with ATOS Origin. With less than a year to go to London 2012, the worldwide disability community is increasingly focused on the United Kingdom, but it is in the United Kingdom that ATOS Origin are known to every disabled person for their disablist activities. Awarded the contract to assess disabled people for disability related benefits, ATOS Origin have left a massive trail of distress and a string of suicides behind them, as their contempt for disabled people results in assessment after assessment at which not even the ‘facts’ reported by their assessors can be taken at face value

I can perhaps best illustrate the repellent attitudes of this company towards disabled people by describing my own experiences with them, and I write as someone who passed their assessment rather than as someone who failed it, meaning I have no axe to grind for being rejected. Their first attempt at an assessment for me got no further than the door to the assessment room, they had failed to provide the reasonable adjustments to my disability needed to get me through the assessment – adjustable seating, nothing too outrĂ© – adjustments that they were required by law to provide. When questioned over this, the ATOS doctor admitted ‘We have complained about the seating before, but regional management just tell us to make do with what we have’. This clearly indicates an utter contempt for the needs of disabled people existing at higher levels of management within ATOS Origin. ATOS then proceeded to tell the Department of Work and Pensions that I had failed to attend the assessment, resulting in my benefits being frozen. I leave it to you to judge the attitudes to disabled people this less than honest report reflects. The stress this caused led to a massive flare-up in my disability that lasted for months. When I was finally able to challenge the decision DWP immediately accepted my points, they had heard them far too often before, and a second assessment was arranged.

The second assessment was a clash of wills, between an ATOS doctor who clearly wasn’t prepared to listen to yet another disabled person annoying him with facts and my own refusal to be browbeaten. I was criticised for not giving ‘yes’ or ‘no’ answers, even when neither would have been true, I was criticised for knowing the structure of the assessment, I was criticised for insisting on giving the information that indicated I automatically qualified for my benefit, even though he had failed to ask for it, even though the information to say he needed to ask for it was on the form in front of him, I was even criticised for my description of the effects of my disability, a description shown to be completely accurate just a few minutes later when the still inadequate seating left me unable to continue other than by balancing on one leg in the middle of the room, hanging desperately onto the back of the chair. I was even criticized for being unable to bend my knee so that he could test my reflexes. I have met bad doctors before, but only at ATOS have I met doctors who criticised me for my disability. Surprisingly I passed the assessment, but many, many disabled people would not have been able to override the opinions of an abusive, close-minded doctor in the way that I did. As an engineering professional I understand the legal duty of care when acting professionally, in each of my two assessments ATOS Origin aspired to a level of professional competence and care that was utterly farcical.

And yet my assessments were far more professional than many that are reported. Outright falsehoods in assessments seem positively common, while ATOS personnel have been caught in homophobic rants, abuse of their patients as scroungers and a whole range of other abuses that would seem absurd if they weren’t demonstrably true. Even if we disregard the many, many reports of outright disablist behaviour, their true attitudes towards their disabled patients (though their staff are urged by ATOS management not to think of disabled people in those terms, even as they conduct medical assessments and delve into the most intimate details of their disabilities) can be illustrated by the fact that many of their assessment centres, centres whose entire clientele will be disabled, do not have on-site disabled parking, are not wheelchair accessible and lack even such basics as accessible seating.

The statistical results of ATOS Origin assessments demonstrate that their professionalism towards disabled people is clearly questionable, in any other industry a failure rate of 1 in 8, as demonstrated by successful appeals at independent tribunals, rising to almost 1 in 4 with representation from advocacy groups, would be an utter catastrophe, never mind in an industry where each of those failures represents an individual disabled person put through intolerable stress at considerable risk to their health, but ATOS Origin continue merrily onwards, not just refusing to acknowledge that they have a problem, but actively trying to stifle debate by bringing legal actions against disabled people who dare to complain publically.

ATOS Origins have demonstrated their attitude towards disabled people in tales of abuse stretching from one end of the UK to the other. If they chose to associate themselves with the IPC, it is not to demonstrate that they care for disabled people, that they do not is demonstrated by their refusal to admit that they have a problem, but because they see the goodwill that people around the world hold for the Paralympics Movement and hope to leech away some of that for themselves, hiding their disablism by wrapping it in the Paralympic Flag. Is the IPC really willing to sell the reputation of the Paralympic Games to whitewash the abuse of disabled people? Are ATOS Origin's 30 pieces of silver really worth the betrayal of everything the International Paralympic Committee stands for?

As a disability rights activist, if the IPC choose to retain their connection with such an actively disablist firm as ATOS Origin then I will have no option than to throw my weight behind the protest campaign at London 2012 and stand in line with other disabled people saying ‘Not in our name’. Disabled people picketing the Paralympics in a stand against disablism, could any sight be more disturbing?

Yours in sadness,

David Gillon

Sunday 23 October 2011

Flattened

I've just had a forcible reminder of how disabling my back problems are, and seeing as the flying monkeys reminded me how little of disability many people understand, I thought it might be interesting to describe how it's affected me the last couple of days.

For someone with disabling levels of back pain, I actually manage fairly well most of the time, so long as I don't do more than potter around the house and spend most of my time flat. It's just the parts of life that involve getting out and doing things that I have problems with.

I woke up on Friday with a touch of back ache, roughly over my right kidney - no idea why, but these things come and these things go and I'm used to being in pain, often far more than this, so I didn't pay it a great deal of attention. This one didn't go, it was still there on Saturday morning, but by this point I was ignoring it, or at least I was until I popped out for coffee with friends - which is often enough the only time I get out of the house during the week.

We meet in town, so that means a five minute drive and a short walk to the bar where we meet. I don't use my crutches in the house - the distances are shorter than my unsupported endurance, but they aren't shorter by much so I'm absolutely dependent on them outside. Almost as soon as I walked away from the car, that niggling pain over my kidney transformed itself into a stabbing dagger of pain running from shoulders to waist, my spine locking itself so rigid that even breathing becomes interestingly different, and it was patently obvious that it was using the crutches that was causing the problem. For someone else that level of pain might be completely disabling (especially as this is what I'm feeling past the opiates!), but I'm used to it, so it's extremely unpleasant rather than absolutely catastrophic. Coffee was a welcome distraction, but the walk back to the car was more of the same and I knew that I needed to get off my feet.

Back at the house I spent a couple of hours flat on my back listening to the football, which seemed to calm things down. With things settled I thought I'd go and finish downloading some software I'd just bought. My computer seat is oddly suited to me, wide enough to sit in cross-legged, which always helps, and with the tilt lock left open I can constantly adjust the way I'm sitting. I'm still severely restricted in time upright (I've hardly been able to touch the artwork I use the computer for this year), but not as badly as in other seats. This time it didn't help, that dagger of pain down a rigid spine set in again within just a few minutes, not even reclining as far back as the chair allows made any difference, leaving me wishing I could convince someone to fit me with a particularly restrictive full-length back brace (there are very good reasons I shouldn't use one all the time, but some days it would be nice to have the option to let me do stuff even if my spine objects). So back to the couch.

I did get as far as putting the oven on, planning on pizza for dinner - anything more elaborate would have been too long on my feet, but once I was flat again waiting for it to heat up I realised I wasn't about to move for the night. 'dinner' ended up as a packet of crisps when I finally forced myself to get up and turn the oven off. Lying flat meant the pain mostly went away (though of course lying flat brings its own set of minor and not-so-minor pains), but I have a bizarrely varying reaction to severe pain. Either I all but collapse and sleep it off, or it goes, but I can't sleep. So there I was all night, laptop perched on my chest, playing Angry Birds until the dawn chorus joined them for real.

I think I finally got to sleep about 8AM, waking up groggy and disoriented at about 3PM. I was finally up and running in something like a normal state of mind by about 6PM, so went to finish downloading that software, and there's the pain again....

I did manage to cook something today, so I'm not quite living solely on crisps, but the art of cooking while perched on one leg for as short a period as possible doesn't leave much room for culinary innovation....

It's 3AM, I'm typing this with the laptop perched on my chest, and I give it about a 50:50 chance I'll see the dawn, and I've no idea how long the elevated levels of pain will last, might be gone tomorrow, might still be here 3 months from now, I've learned to live my life making up my plans as I go along, because it's simply impossible to plan around a disability as random as mine. Meet me on the street and you simply see someone with crutches, that doesn't even give you a reliable indication of what kind of disability I have, you certainly don't see all the ways that it affects my life; the complexity of disability is utterly invisible, unless you're the one living with it. And the more people we can help to understand that, the better.

Wednesday 19 October 2011

Attack of the Flying Monkeys

I've just had a flying monkey call me 'a spineless cunt'.

Yes, really, though I should point out that these aren't the pro-Wicked Witch flying monkeys of Wizard of Oz fame. Flying Monkeys are what Nicola Clark (@MrsNickyClark on Twitter, and one of the good guys of the disability rights movement) calls the rabid fans who attack her on-line when she criticizes their heroes for using disablist language.

The latest celebrity she has challenged is Ricky Gervais (@RickyGervais), who has set out to single-handedly repopularise the use of 'mong', a word disability groups have spent a long time trying to eradicate from the language of abuse. In many ways 'mong' is Britain's 'retard', the disablist insult that's an all purpose term of abuse for disabled and able-bodied alike. But at the heart of it, the source of its power, is the implication that to be a 'mong', to be born with Downs Syndrome, is to be reduced to some kind of sub-human village idiot, worthy of nothing but being the butt of jokes, a figure of fun, and hate.

Gervais tries to claim that 'mong' no longer has this meaning, but its sole power comes from the abuse of disabled people, and that abuse continues to this day, with many, many disabled people having faced it on the streets for no reason other than their disability. I actually haven't, 'scrounger' seems to be the term of choice when complete strangers confront me for daring to be disabled in public, but that's close enough to tell me how deeply that assault on your identity, your equality, your basic membership of the human  race, cuts, and to teach me how easily those words can turn into physical assault. So when I hear that someone isn't just using the term, but is encouraging others to use it, and that man is someone with 400,000 followers on Twitter, then I understand exactly why @MrsNickyClark needed to challenge him.

Nicola Clark can make her argument better than I can, and she does it eloquently in her Guardian article, but Gervais's response hasn't been to sit back, think about the issue, and admit that he was being unwise. No, instead he's upped his use of the term, complete with gurning pictures that make his real intent very clear, and urged his followers to rally against (and I quote) 'the haters and mentals' - by their words shall you know them....

Earlier this evening I saw one of his followers post a tweet "Let's try to get 'mong' trending" - for the non-Twitterati, this means having a notably high number of occurrences in current tweets and it can draw a lot of attention beyond those who follow the original poster. Not wanting that kind of post to go unchallenged I put up a counter-tweet, pointing out that he was calling for an attack on disabled people. It rapidly became obvious that hadn't even occurred to him, and that illustrates the danger of what Gervais is trying to do. By popularising the use of the word, he makes it socially acceptable, which means firstly that disabled people are being regularly demeaned by people who don't even know they're doing it when they use it against non-disabled targets, and secondly it gives aid and succor to those who do use it as disablist abuse by robbing their crime of any social sanction. Disabled people lose on all fronts, Gervais laughs all the way to the bank.

I'd barely managed to convince the first poster that what he was calling for was wrong, when a flying monkey arrived and, as flying monkeys are wont to, demonstrated his outrage with a display of faeces-flinging, amongst which was the choice accusation I opened with, that I'm a 'spineless cunt' for wanting people not to abuse disabled people - which apparently also makes me 'an aggressive bully'. Not being one to shrink from an argument, I tried to give as good as I got without resorting to faeces-flinging. I think the thing that came through most (and this went on most of the evening, ending with him swearing he's not done with me) was the sheer inability to empathize with someone with a disability. Challenged for protesting on-line, not in person, I pointed out that on-line campaigning is the only kind of activism open to me, only to be repeatedly taunted that real activists are out in the streets, the implication seemingly that those who can only take issue on-line are some kind of dilettantes without any real right to protest.

That's actually worrying beyond the Gervais issue because it suggests there are a lot of people out there who don't value anyone whose disability restricts them to non-traditional roles (not really a surprise, but it's not nice to have it confirmed to your face), but it's specifically worrying over the Gervais issue because it demonstrates just how dangerous the ability of celebrities to manipulate their fans can be, and that's why Gervais can't be allowed to go unchallenged. So kudos to Nicola Clark for having the resilience to go head to head with people like him, knowing full well that the flying monkeys are out there and ready to unleash a shit-storm of hate.

If you aren't already one of @MrsNickyClark's followers, I thoroughly recommend her for sensible comments on disability rights. If, on the other hand, you're a follower of @RickyGervais, why are you siding with the person who wants to make the lives of disabled people worse?

Returning to the opening faeces-flinging of 'spineless cunt' to close, if that's the cost of challenging disablist language then I'm happy to embrace being spineless (not to mention that it would likely mean being in a lot less pain!), but when it comes to being a cunt, sorry, I just haven't got the right equipment for that one.