It’s Blogging Against Disablism Day, and that’s taken me by surprise. That wouldn’t normally be a problem, last year I knew about it well in advance, but this year I’m struggling more, and – Ironically? Poetically? Absurdly? – I think the reason is the disablism I’ve faced over the last couple of years
The problems started with my application for Employment and Support Allowance, for which we have to go back to February 2010, and the day that Jobcentre Plus admitted (under ministerial prodding, having previously told me to shut up and do as I was told) that I was too disabled to claim JSA, too disabled for any of their training schemes, and needed to claim ESA instead. ESA comes complete with a massive form, in which you are expected to summarize every aspect of decades of disability in the tiny spaces provided (there was no electronic version of the form available at that point, despite it having been in use for several years – DWP’s contempt for our needs was all too apparent). So I improvised and created my own electronic version, because I can’t write legibly for more than a sentence and some of the information on my disability is so personal I hesitate even to tell my consultant, so there was no way I could ask someone else to do it for me.
To say things then descended into low farce would be giving ATOS, DWP’s French contractor (who are IT rather than disability specialists – and it shows), an unwarranted reputation for competence as I now had to face their infamous Work Capability Assessment. At my first assessment appointment, the adjustable seating I had told them I needed hadn’t been provided. The doctor I spoke to confided that they had requested better seats, but been told to make do with the cheap, unsuitable seating they had by their area management (so, contempt yes, competence no). That visit triggered a massive flare-up in my disability, I quite literally spent a week on the bathroom floor, in so much pain I didn’t know what day it was, and the next three months doped to the eyeballs on opiate painkillers. Needless to say I didn’t get very far with my ESA claim. When I finally got back on top of things, I found ATOS had told DWP I didn’t attend the appointment. In a rare demonstration of competence DWP agreed to reinstate my claim (the ‘Oh, not again’ when being told what ATOS had done might have had something to do with it) and arranged another assessment.
By now we were into October 2010. ATOS did manage to have an adjustable chair for me this time (it didn’t help), but every other aspect of the assessment met the worst stereotypes about the way ATOS behaves. The hour wait past my appointment time - ATOS routinely overbook by 25%, having nothing but contempt for the fact their patients may find extended sitting acutely painful – left me in pain and shaking before I even got through the door of the assessment room. The ATOS doctor was abrupt, overbearing, wouldn’t meet my eyes, had clearly made up his mind I was faking before I ever entered the room and generally tried to browbeat me into saying what he wanted, and not what would get me the benefit I was entitled to. He clearly wasn’t used to someone who was able to meet him head on and argue their case intelligently and knowledgeably (though he did criticise me for having that knowledge). And then came the moment when I had to tell him ‘I need to stand up, or else I’m going to throw up’, and a look of utter panic passed across his face as he realised that my claim was utterly genuine, and that he had just spent most of the last hour abusing a patient in violation of his oath. The change in his manner couldn’t have been more marked, though he still managed to criticise me for being unable to bend my knee because of the degree of pain I was in. I walked into the room on crutches and both feet, I came out in so much pain I couldn’t weight bear on my left leg (ironically this was one of the symptoms I had been criticised for describing earlier). Fortunately this time the flare-up only put me in bed for the rest of the day, not weeks or months.
Amazingly I passed the assessment, though whether I would have without the visible flare-up is the elephant in the room. Nevertheless, the Select Committee on Work and Pensions were interested enough in what goes on in ATOS assessments, even those where people pass first time, to put my account into their report documenting the failures of the ATOS run WCA. On the other hand, I still couldn’t bring myself to apply for Disability Living Allowance. My walking difficulties mean I probably qualify for Higher Rate Mobility, but it’s marginal, and applying would mean another assessment, and likely an appeal, and that was just more than I could face.
With ESA sorted, things seemed better at the end of 2010, but 2011 brought disablism crashing back into my life. DWP contacted me to tell me that they had received an anonymous tip on the National Benefit Fraud Hotline, alleging I was working full time. The DWP are proud of their hotline and emphasise it to the public at every opportunity, yet 94% of claims it receives are either malicious, or have no basis in fact and I’m willing to bet most of that lack of basis in reality itself originates in xenophobic attitudes, whether they be related to race, disability or whatever. DWP seem to be very careful not to release any figures to show how many of those 94% of claims are directed at minority members.
I am lucky if I get out of the house for 4 hours in the week, and my car sits in open view for all of that time I am at home, so I was really interested to hear what evidence had been provided to DWP in support of this claim that I was working 9 til 5. The answer turned out to be none, DWP investigate all claims, no matter how much evidence is provided, no matter the consequences to the person being investigated.
So the DWP investigation crashed and burned the moment their investigator met me, but the stress was still enough to trigger another massive flare-up, one that lasted for 4 months, at its worst I spent an entire month without being able to sleep for more than an hour at a time, and that only while propped into a sitting postion. The overwhelming likelihood is that the claim was disability related harassment, in breach of the Equality Act 2010, but DWP refuse to release any information on allegations made by the Hotline, no matter how egregiously obvious the discrimination driving the claims is. Or to put it bluntly, DWP are allowing themselves to be used as the tool of racists and disablists in criminal harassment, and such is their contempt for us they are happy to go along with it no matter how overwhelming the evidence of this is.
And so 2011 went on, a year of fighting the government’s increasingly open disablist attitudes, fighting against the horrific Welfare Reform Bill, occasionally talking to the media about my experience of disability hate crimes, the benefit fraud allegation being a popular topic there. Yet no matter how hard we fought, attitudes to disability seemed to go from bad to worse, with even BBC getting in on the act, whether it be Dom Littlewood chasing down another supposed scrounger on Saints and Scroungers, John Humphrys claiming we are a generation without the will to work, or Panorama telling everyone that any disabled person who dares to sail or drive a good car is clearly a fraudster (I had just got back from a holiday sailing with friends, that was the first time a TV programme had ever left me too intimidated to leave the house). When I talked about disablism on the BBC local TV news, they even brought in the local Tory MP to counter me and claim that people were perfectly entitled to be angry with us.
I even managed to get the campaigning group 37 Degrees to recognise that disabled people couldn’t hope to win their popularity contest method of choosing campaigns, but where they spent well over a year campaigning against the NHS Bill, their sole intervention on the Welfare Reform Bill came not at the eleventh hour, but at 11:59:59. Needless to say it didn’t help, but it did show that when it comes to appealing to humanity’s common goodness, crips will lose to badgers, or trees, every time.
And then, just at the end of the year, it happened, a brown letter lying on the floor in front of the letterbox. ATOS wanted me to attend another WCA.
I tried to fill the form in, I really did. I even tracked down the electronic version, but every time I tried to fill it in I felt physically sick and my pain levels soared. I lost nights of sleep, spent days curled up in pain, and ultimately I realised I couldn’t do it. I honestly don’t know what the state of my claim is, it’s fairly obvious DWP have suspended or dropped it (no money going into my account), but I simply can’t bring myself to open the letters from them, or anything that even looks like it might be from them.
I have finally had to realise that those farcical ATOS WCAs, amplified by the disablism that runs rife in the media and taints attitudes on the street, have actually done me some very real damage, and that, like any other traumatized abuse victim, I hesitate to put myself back into the environment where I was abused and where the likelihood is that I will face more abuse. I don’t know where I go from here, even if I submitted a WCA claim today, I would get no money from it, because Time-Limiting of ESA kicked in yesterday, and anyone who claims Contributions Related ESA will lose their benefit after a year, which I have already had. The government accepts that tens of thousands of ESA claimants are genuinely unfit for work, but says it is unreasonable of us not to have adapted to our disabilities after a year and not to have found another job, no matter the rampant disablism of the jobs market, no matter the millions of non-disabled people out of work, no matter the reality that disability is generally for life, and if that attitude isn’t disablist, then what is?
I could still apply for DLA, but HRM isn’t remotely enough to live on, and I would face precisely the same attitudes in its assessment. Worse, it is being replaced by Personal Independent Payments, and the companies shortlisted to run PIP's assessments are a rogues gallery of those with the most dreadful reputations for dealing with people. What exactly is it about a company that spends its time playing prison guard by shoving immigration detainees around the system that qualifies it to assess how disabled I am?
I have been trying to write this article since the New Year, but the fear spilling over from the WCA thing has left me struggling to manage at all. I seem to be climbing out of it, slowly, but it needed the impetus of Blogging Against Disablism Day to let me, force me, to do this, and I still have to find a way to face my WCA demons. No matter our efforts, Disablism is not just alive and well, but thriving.
Postscript 1: Leveson
In grim irony, Blogging Against Disablism Day has seen Katharine Quarmby, author of the stunning and sickening expose of disability hate crime ‘Scapegoat, Why We Are Failing Disabled People', writing in the Huffington Post to say that the Leveson Inquiry into Standards in the Media has refused to call either her or any of the disability organisations who have submitted written evidence. Apparently the systematic demonization of disabled people by the British media is not considered important enough to justify Lord Leveson taking an interest.
Postscript 2: The Grim Truth
Also released today was a survey commissioned by the MS Society. Its conclusions were:
1 Briton in 4 thinks disabled people should expect to be discriminated against
1 Briton in 4 thinks we exaggerate our disabilities
1 Briton in 4 thinks we are being unreasonable if we expect to go to a bar or a club in a wheelchair
So that’s one Briton in four is openly disablist and proud of it.