“On Being Demonized” – the perspective of a 38 Degrees member living with a disability

Below is a guest piece by David Gillon, a 38 Degrees member and blogger who raised some significant questions about 38 Degrees’s people powered system of choosing campaigns. One of David’s main criticisms is that in a system where the most popular campaign suggestions get prioritised, it can be difficult for marginalised voices such as people living with a disability to be heard.

I invited David to share his viewpoint and concerns here so that we can consider them together. Please share your thoughts and comments in the comments below.

David Gillon

“Disabled Benefit Recipient”. What word just popped into your head? Scrounger? Faker? Fraud? I walk with crutches, I’ve been called all of these, and worse, by complete strangers in the street. I’ve even been physically assaulted simply for walking while disabled. And this was going on even when I was still in full time employment and claiming no disability benefits whatsoever. Nor is any of this unusual, it is in fact the near ubiquitous experience of people living with a disability in contemporary Britain after years of deliberate and calculated demonization of disabled people by the media. And in the past 18 months it has become far, far worse,  the attacks from the tabloids coming in near daily. We have our own names for them now, the Hate Mail, the Vexpress, the Scum, because we know that all we can expect from them, and their puppetmasters at the Department of Work and Pensions, is their hatred and the carefully selected stories calculated to convince you that we are all fakers living a life of luxury because we’re too lazy to work.

And that’s a problem for people living with a disability, and for 38 Degrees. Society has been brainwashed, you might not know it, you might protest against it, but brainwashed it has been, beliefs eroded by story after story, until what leaps to mind isn’t a recognition of people needing support, but a presumption of fraud and idleness and luxury. The disability benefit fraud rate isn’t the 75% the tabloids would have you believe, it is 0.5%, less than the rate of internal DWP error.

I want to put brainwashing aside for a moment and talk about the things the Tory press simply haven’t been telling you at all (and sadly people living with a disability now have to number the BBC amongst the Tory press). When the Coalition took power, they swore to protect the most vulnerable of all, then promptly turned around and closed the Independent Living Fund, the benefit paid to the most people living with a disability of all, those who need aid with nearly every aspect of their lives.

Next up for the axe was Disability Living Allowance, the DWP telling us that there had been inexplicable rises in the numbers of people claiming it. Campaigners pointed out that DWP hadn’t allowed for such esoteric factors as people retiring with the benefit, or children claiming it, because, no matter what the Chancellor may have claimed repeatedly, DLA is not an out of work benefit. DLA is available to any person living with a disability who passes its strict criteria – yes, no matter what the Tory press tells you, it is tested, and frequently retested unless you have a lifetime award. They aren’t happy with the number of those, either, but as often as not a disability is for life, not just for Christmas, so what’s the point of testing year after year to see if a leg has grown back yet? All miracle cures gratefully received!

Lose your DLA and you lose everything, Carers Allowance, Motability and so on. The tests for DLA are incredibly strict, I struggle to walk and I don’t pass, you need to be unable to walk even 50m to get the Mobility Component of DLA, but the Coalition aren’t satisfied and want to replace it as with Personal Independence Payments (hiding the fact that it is even a disability benefit), with tests designed to exclude 20% of those currently getting DLA, not because they aren’t disabled, just because. And in an act of incredible spite they want to take DLA Mobility Component away from anyone in residential care, which will mean children living with a disability not able to get home to see their parents, adults living with a disability not able to go out to the cinema, the pub, or home to their partners and children. The Low Review has just been published to detail all the damage this one change will cause, but we still need to fight it and there is so much more to fight. Meanwhile Tax Credit changes will cost families with disabled children £1400 a year.

The changes to housing benefit have drawn quite a lot of press coverage, but relatively little on how serious they are for people living with a disability who are facing multiple hits from the changes. Younger adults will be expected to live in ‘houses of multiple occupation’, but that could be seriously damaging to someone with mental health or other issues. Then people are going to be docked for having spare bedrooms, but disability means equipment, wheelchairs, ventilators, partners not being able to share beds, and they all have to go somewhere. I saw a story recently, a family of five, three of them disabled, they can’t survive without 5 bedrooms, but 5 bedrooms will be unacceptable under the new regime, and on top of that the capped percentage of average local rents simply won’t cover the cost. The National Housing Federation estimates 108,000 people living with a disability could be forced out of their homes because of this.

The last area I want to focus on is Employment and Support Allowance, the replacement for Incapacity Benefit. This has been an ongoing disaster since Labour introduced it and brought in the French multinational ATOS to run the Work Capability Assessment testing. There are stories about ATOS ‘medical professionals’ indulging in homophobic rants, needing to have the patient explain what their disability means, reporting results from tests they haven’t completed, the list goes on. The GMC had to issue a formal reminder that patients must be put first at all times and that honesty is a professional requirement (you really couldn’t make this stuff up!). Many of the ATOS centres are not wheelchair accessible, the vast majority have no disabled parking, there are other failings, ATOS claim they’re good enough. My own ATOS experience was good by comparison with many, but I’m still traumatised by it a year later and it ended up as evidence in a Select Committee Report (and now I am facing a retest). I got off lightly, Black Triangle report there are now 16 documented post-WCA suicides. ATOS, meanwhile, have been threatening legal action against disability websites collecting and publicising these stories. So what did the Tories do? They made the tests harder to pass. Fail the WCA and you’re thrown onto Job Seekers Allowance, but I’ve been there, done that, and JCP admitted after my complaint that the only way they could cope with my disability was by ignoring it. It’s estimated that retesting of Incapacity Benefit recipients as part of the migration to ESA will see 600,000 people living with a disability thrown onto JSA (and existing statistics from ATOS testing suggest the figure could be over 1 million). Meanwhile, 1 in 8 ATOS decisions is overturned at appeal, a load which is costing the country £50m a year and has the Tribunals Service groaning at the seams.

As if that wasn’t bad enough, the Coalition plan to introduce time-limiting of ESA  from April. This will mean that those in receipt of Contributory ESA will lose their benefit after 12 months unless they are so disabled that there is no possibility of them ever working (and people with, for example, severe MS, or even terminal cancer, have regularly failed to make this grade). For many of us, I’m one, that means losing all eligibility for any benefit, for so long as we have any assets (such as pension funds) or if any member of the household has even a pittance of an income (a figure actually lower than the minimum wage). 700,000 people the government admits are too disabled to work will be affected by this, some will be able to claim income related ESA, but for 400,000 of us it means sacrificing our savings and pensions, or becoming absolutely dependent on partners, with all the stress that will impose on a relationship.

Most of these changes are built into the Welfare Reform Bill, which has almost completed its passage through the Lords. We had hopes of hamstringing it there, but the Coalition gerrymandered it into Grand Committee, which contentious bills are never meant to go through, and now a single vote can kill any amendment, while peers opposing the bill say so much information has been left out it is impossible to tell just how bad the effects will be. We had hoped to get the support of non-disabled groups, such as 38 Degrees in opposing it, but our cries for help went unheard. What happens next scares many of the disability campaigners, we’ve just last week heard of a double suicide by a veteran and his intellectually disabled wife who had struggled to access benefits, our fears are that there will be many, many more, making the post-WCA suicides just the forerunner of mass tragedy. Go to the website Where’s the Benefit? (where I blog regularly) and you’ll find a link to the Samaritans on the front page. That link is there because we regularly have people respond to our posts with a quiet, considered discussion of their suicide plans for when the cuts take their benefits away. And it is fear of what is to come that has us so desperate for support from the non-disabled groups. We can spread the word amongst the disability community, when we’re well enough, but precious few others come to our websites or read our blogs, we’re screaming into the darkness, but no one hears us.

Which brings me back to the problems of brainwashing. 38 Degrees is based on a democratic model, its campaigning driven by the demands and interests of its members, and that’s no bad thing in theory. But we aren’t dealing with theory, we’re dealing with messy practise, and not all campaigns are created equal. Crips aren’t cuddly, we aren’t cute, we’re positively demonised in the national psyche. How do we win a popularity contest?

The answer is that we don’t, we can’t, we’re labouring under too heavy a load of anti-disability propaganda that has shaped views of us as a minority of lazy, selfish, fakes and frauds, living lives of luxury with our Bentleys and our yachts. The truth is far different, but the media aren’t interested in telling you the truth. So an organisation that should be helping, but which clings to a democratic model we’ll never be able to access, is obviously one people living with a disability find a little bit troubling.

When we didn’t even make the latest poll, no matter DLA related issues were clearly the second most highly rated issue on the UserVoice pages, never mind the several thousand missing votes that 38 Degrees had been claiming to be investigating for 8 months, things became a little fraught.

I blogged about this in annoyance, expecting to be a lone voice, but I’d lanced a upwelling of frustration within the disability community, and the tweets of support and the visits to my blog just kept climbing to levels I’d never dreamt of seeing. Kudos to David Babbs for having the nerve to post in reply and then talk to me over the phone, and I’m now reasonably happy to accept that nothing was done deliberately, but the annoyance across the disability community was, and is, very real and that is something that we, and 38 Degrees, need to address. (This blog is part of that process).

The democratic model is praiseworthy, but it can’t address all issues, and most specifically it can’t address the needs of marginalised groups, and their inability to access that model may traumatise them further. The democratic model condemns you to doing what is trendy, not necessarily what is right and desperate need is not the same as well known, nor as popular

Remember, slaves didn’t have the vote, no vote told Wilberforce and the abolitionists that they needed to campaign for what was right. Women didn’t have the vote, no vote told the Suffragettes to get out there on the streets and fight for their democratic rights. Democracy is a luxury those who live on the disenfranchised margins of society can’t afford and can’t access, and 38 Degrees owes it to itself to find a way to let them be heard.

As for what you can do to help us now, a welcome first step would be to vote for Pat’s Petition which aims to get the Welfare Reform Bill paused for review in much the same way as the NHS bill. Beyond that, watch out for actions by Black Triangle, the Hardest Hit and Disabled People Against the Cuts, or take a look at our online presence at websites such as the Broken of Britain, Diary of a Benefit Scrounger and Where’s the Benefit, or vote for 38 Degrees to take action. And when the media tells you that we’re all fakes and scroungers, vote with your feet and take your custom elsewhere.