Fit to Work - Poets Against ATOS
Laurie Clemens Interviews Mark Burnhope, Instigator of a UK Disabled Rights and Poetry Campaign
LC: What are some of the differences between the way disabled and sick people in the UK accessed benefits in the past, and the situation as it is now?
MB: Generally speaking, the main difference between Incapacity Benefit (being phased out) and ESA (the new 'out of work' benefit for sick and disabled people) is that IB was based on your condition or your disability, and to claim it, you had to go through what they called a PCA – a Personal Capability Assessment. ESA, on the other hand, is assessed with the objective of getting you *off* the out-of-work benefit and into employment. It assesses your apparent 'capability for work'. This bias towards an ability to work, plus the fact that the providers of the WCA are paid per-person to find claimants "fit to work", make the claimant guilty until proven innocent.
LC: Are you saying that the interviewers are motivated to find claimants "fit to work" because they receive paid incentives to do so?
MB: Yes, that's my belief. In order to fulfil a hugely generous Government contract, I think that Atos are paid by results, 'results' being the number of people leaving benefits. This means that their whole ethos and staff training is geared towards removing people from their financial safety net (a move which they call 'sanctioning'). It's hard to believe that assessors can be entirely neutral given these circumstances. The first I heard of this was the investigation (televised last year) carried out by the Channel 4 programme Dispatches, which revealed that the government were indeed imposing targets on Atos, geared towards taking people off benefit. Several investigations since have found the same, confirming something disability and welfare campaigners have suspected all along. That's not to mention the gaffs that Government ministers themselves have made, disingenuously revealing their own targets. In December 2012, the Independent reported: "More than 300,000 disabled people will have their benefits cut when DLA is replaced by PIP, says Esther McVey (Minister for Disabled People)". If there were no fixed targets – both in terms of the number of people to be removed from the system, and the amount of money to be allegedly saved and cut from the budget – how could a statement like this be made? At one time I read that 1 in 5 people who took the Work Capability Assessment were judged "fit to work" and sanctioned. Currently, around 45% of cases which go to appeal are found in the claimant's favour, and benefits are eventually reinstated. This percentage has risen from around 38% at the beginning of this year.
As for PIP ('Personal Independence Payments'), the new disability benefit replacing DLA (Disability Living Allowance), its criteria for passing as "disabled enough" is too tight and unrealistic; for example, it once said that if you can walk 20 metres "unaided" (meaning also with mobility aids), that counted against you and towards your "fit to work" score; this distance has since been changed to 50 metres, thanks to pressure from disability campaigners. People have been told during assessments that if they have incontinence managed by pads, they have no incontinence issues, and if they use a manual wheelchair, they have no mobility issues. And their reports have been written accordingly. Too many people have found that their reports contained inaccuracies, misquotes, and plain lies in some cases, leading to a demand by disability campaigners for all Atos assessments to be recorded (a demand which has been addressed and is now law, though not all Atos centres have recording equipment, and they'll make excuses where they can).
I myself have had a lifetime claim of Disability Living Allowance, and as it gets phased out and becomes PIP, I am worried that the criteria has been tightened to such an extent, it's conceivable that I won't qualify, despite my obvious physical, as well as hidden disabilities. I have just been awarded ESA without having to take a demeaning and humiliating 'Work Capability Assessment' (in which amputees have been asked by medically unqualified staff "Which leg did you have removed?", "Will it grow back?" and "Can you point your toes?"; people have been judged on their abilities to be clean, take the bus to the assessment centre, and own a dog, all of which apparently prove self-reliance; the ability to use public transport, and the ability to take responsibility for another person or creature. People have been assessed on their ability to make a sandwich, (even though they couldn't prepare hot food without supervision). I couldn't tell you how many genuinely disabled and sick people are now having crucial benefits removed under the most farcical of circumstances. The Government were taken to court, and a judicial review stated that the WCA was prejudicial towards mental health sufferers. The courts refused the Government leave to appeal that decision. However, another court has given the Government leave to appeal. That, among other things such as "retroactive legislation" on Mandatory Work Activity (or 'Workfare') and the removal of Legal Aid – free legal assistance, advice and support which disabled people were able claim regarding any claims for support – strongly suggest that the government will ride roughshod over efforts to make any improvements to their new system.
LC: Can you explain a little about "Workfare," what it is and the impact it has had on the sick and disabled?
MB: 'Workfare' (mirroring 'welfare') is the name being given to mandatory work activity. If you aren't deemed 'disabled enough' to receive unconditional benefit support, you may go into one of two groups. One group will go straight onto Job Seeker's Allowance, and be treated like any other job seeker. The other will go into the Work-related Activity Group (WRAG) and will hopefully receive targeted support to help find suitable work. Both of these two groups are subject to mandatory work activity, which means that they can be compelled, under threat of benefit sanctions, to perform unpaid work activity at full-time hours at any time. The fear is that, given the fact of so many inaccurate Atos assessments and decisions, many disabled people are being forced to undertake work activity, without pay, that they wouldn't be able to do for a wage because of their disability.
LC: With the removal of Legal Aid, what recourse do the disabled have if their claims are denied?
MB: Next to none. Citizens Advice Bureaus are having funds cut, reducing the amount of support they can give for free. Unless you have the financial means yourself to pay for legal help, there's not a lot you can do. Disability and Welfare groups are doing their best to provide support all over the country, but even they are increasingly limited in what they are legally allowed to provide, given government changes, and what they can afford to provide, given so many funding cuts. The government is really making it as difficult as possible for anyone to hold them to account. It is an attack on disabled rights, plain and simple.
LC: I get the impression that from a practical standpoint that the change from IB to ESA is more than a change in simple terminology. You said you have recently been granted ESA. What in practical terms, does this mean for you?
MB: In practical terms, it means that at the moment, I can carry on as before. However, the main difference is that I can be reassessed at any time, and there is the constant anxiety that my situation won't be secure forever. What if next time, my assessor decides I'm not disabled enough? That assessment could be in three months, six months, a year, three years…no one tells you because they don't know. They are 'just following orders', as it were. Also, ESA is one thing but I'm awaiting a PIP assessment that I have been told will not happen until 2015. But because some of my peers are being reassessed for DLA (even though the government once promised that this wouldn't happen), there is a chance that I could have that removed before PIP is even mentioned. It's the constant insecurity and not knowing how you will live from one day / week / month to the next, and we're all feeling it. If I am eventually awarded PIP, I will likely be reassessed for the benefit every three years ("Some disabled people get better!" is the tagline constantly spouted by Government), which stands in stark contrast to DLA, which has, up till now, provided me financial security for life, and reassessments only happened in cases where people's circumstances vastly improved. But people with long-term disabilities won't just "get better", and the government's ideology – that only those who contribute financially to society are useful, valid citizens – is evidently damaging, and refuses to pay realistic respect to the contributions that disabled people are able to make, financially or otherwise. Our usefulness is being measured entirely against our ability to work.
LC: How did your issues with the current system cause you to get involved with the Fit to Work campaign?
MB: Like most sick and disabled people involved in the UK, it began over three years ago, when I started seeing reams and reams of news headlines reporting yet another seriously ill or disabled person had been pronounced "fit to work" by Atos Healthcare, a subsidiary of a private global I.T. company employed by the Department for Work and Pensions to assess benefit. Many of those headlines were, and still are, about the deaths of those who died – from suicide or other circumstances – either after having benefits removed, or during the process of applying or appealing their decision. (This Atos 'death toll' recorded on Callum's List online (not currently up to date) and includes Paul Reekie, a disabled Scottish playwright and poet who committed suicide in 2010 after having his benefits stopped, an event which sparked the formation of The Black Triangle Campaign in Defence of Disabled Rights). Consequently, I learned of the multi-pronged attacks of the government against sick and disabled communities, our livelihoods and our independence, our safety net if we were unable to work, and our financial means even if we were – delivered under the guise of 'Welfare Reform'.
What became my Atos-focused project (campaigning against the Work Capability Assessment and the Atos / DWP contract specifically) is just one of the many issues disabled and sick campaigners and organisations have been fighting against over those years. The government's 'Welfare Reforms' affect everyone who claims any state aid for anything; however, because the majority of sick and disabled people rely on benefits of some kind even when in work, they are being disproportionately affected. Some of the most severely sick and disabled people are experiencing six different cuts to benefits, whereas the average family without a disabled person in is experiencing one or two. Among the issues being fought and defended are: the change from IB to ESA, and from DLA to PIP (both changes unanimously thought of as negative by disabled people); the removal of the Independent Living Fund which paid for the personal care of the most severely disabled people, which means that they may not be able to stay in family homes and may be forcibly removed to residential care to cut costs; the cutbacks to the Motability scheme, through which disabled people on DLA were able to pay for a vehicle to help them with their daily lives and work; the 'Bedroom Tax', where people who have a care worker to stop over occasionally have to pay rent for the extra space; the closure of Remploy factories, famous leading employers of people with moderate physical and learning disabilities, all over the country, and the complete failure to find other jobs for these vulnerable employees (having done a writer's residency at a local centre which provides leisure and learning opportunities for adults with severe learning disabilities, I saw firsthand how this change particularly would threaten to destroy any progress made to their independence and integration into society).
Like many campaigners and campaigning groups I've got to know through social media (Twitter, Facebook), my project initially began with my own increasing anger, fear, depression / anxiety over changes that would likely affect me and my family, being a person with disabilities myself (Spina bifida and Hydrocephalus). For the last three years, I have watched the anti-Atos campaign (also targeted at the DWP and the cooperation between the two) go from a 'fringe' issue known only by disabled and sick people themselves ("Atos Kills" has become a familiar cultural meme among us) to the most significant disabled rights issue in the UK in recent history, a mainstream issue in the news, and a crucial component of anti-Austerity campaigning by the mainstream left. I am grateful for the alliances I've found, both political and personal, and am grateful to have done what I can. The sheer number of poets we've been able to gather together is testament to how many people care about this issue on a public and personal level.
LC: What do you hope to accomplish? What do poets have to offer the protest movement in general and/or how can poets engage in the political process?
MB: On our website, we have an 'open letter' which readers can send to their local MP. This letter includes what we are demanding specifically – that the Atos 'Work Capability Assessment' either undergoes major revision or is scrapped, and ultimately, that the Atos contract with the DWP is ended. In terms of what we're asking for from contributors, it isn't credentials. David Cameron once said "We are all in this together", and he lied. We wish to enact that philosophy properly, so have asked poets to declare their relationship to the cause, and to identify in some way as disabled, sick or able-bodied ally (using whatever language they choose). Mainly, though, we've been learning through trial and error exactly what this project would, and has, accomplished. And a major thing has been at the level of language. Subsequent governments over the last two decades, along with the mainstream press, have labelled people 'benefit scroungers' (leeches on the Welfare State), and paved the way for our current government to split us into two piles: "striver" and "skiver", those who can work and contribute to the economy, and those who "choose not to". This leaves no room for genuinely disabled and sick people to rely on State help without discrimination and prejudice (to give you some idea, hate crime against disabled people has risen by 60% over the last three years). Disabled people have always felt the brunt of 'angry taxpayer' jokes; now we are the brunt of their venom and rage as well. We are all skivers, shirkers, guilty of benefit fraud just by being on the Social Security system. So, naturally, poets and poetry can counter this. It was language that got us into this mess, and it will be language that hopefully gets us out of it. When the government spouts spurious statistics about the burden of Social Security claims on the State, and about the amount of 'scroungers' crawling around, it's disability campaigners that have been fighting with the real figures: only between 0.5 and 0.7% of claimants are fraudulent, and disabled people are taxpayers too and entitled to the support given them. When they split us into binary categories, poets can break those categories open and instead, paint a real picture of who we are, as creative human beings and as strivers who have honed and worked at language to make it multi-faceted, nuanced, accurate and emotionally and politically intelligent. Simplistic propaganda has infected our culture and the government has capitalised on it. Poetry, then, could possibly be a weapon against that, a way of turning public opinion back around. The FTW protest is a raindrop in the ocean in terms of anti-Atos and 'Welfare Reform' campaigning, but it's a privilege to be part of the national storm.
LC: What have you learned/accomplished from engaging in this project? Anything that surprised you?
MB: Plenty of things, but two in particular. The first is that, following on from my point before about propaganda, poetry readers are activists too, on the same level as poets. It's readers who are assimilating information, filtering good from bad, positiv e from negative, life-affirming and true from hate-infused and untrue. And readers carry what they've learned into their own lives and relationships. As readers have engaged with our poetry, they've been engaging with ideas and explorations into other ways of describing the world, in place of those offered by the patriarchal system at the top. That is the counter-protest at work, and it's a reciprocal, interdependent relationship between reader and writer. Between them they might just be able to change the world.
Secondly, it has been very difficult – but absolutely crucial – to publically keep this project a disabled rights one in particular, and not a 'left-wing' one necessarily. Although one usefully lends to and supports the other in various ways, I'm convinced that they must also remain distinct. In terms of mainstream political campaigning, anti-Atos / anti-Welfare Reform is just one coloured shape in a stained glass window. That window's 'big picture' is the fight against Austerity, against the Coalition government, etc. But I've had to learn that although I'm happy to be understood as part of this fight, in some contexts at least, my initial instincts and impulses to start this project were right: the disabled community is being attacked and I must do something about it. For me, for us, this isn't just a part of a bigger agenda, it's everything. In the long-term, even if our favourite kind of government got in power tomorrow, would they suddenly usher in a system which was no longer discriminatory towards disabled people? Would they suddenly have disabled people's rights and interests at heart, as a priority? I'm doubtful, and it's for that reason that I feel it's important to keep the disabled rights 'banner' at the forefront. My fight is grassroots, intersectional and self-advocating. We are fighting not for our political preferences, but the dignity of human lives. Given the government's dismantling of human rights and the achievements made by disabled rights activism over the last decades, I really fear for the continuation of disabled rights as a concept in the future. For that reason, we cannot allow ourselves to be cordoned off into a 'left-leaning' half of the population.
When Daniel Sluman, Sophie Mayer and I first invited poets onto the project, we did so on the basis that we were campaigning against Atos and the WCA. Anything else was peripheral. And perhaps my most significant lesson during my work on it has been that people will be on the same side, but for different, even if complementary, reasons. Other people will be appearing to do the same thing, but they will baulk when you mention self-advocacy and disabled rights, as if either of those things 'exclude' able-bodied people (when, let's be honest, any mainstream / majority political fight has classically excluded minority groups, to some extent, even when they tried not to: women, queer, non-white people, disabled people, etc.). That's been difficult, but it's been so important to maintain the integrity and uniqueness of our project, and acknowledge alliances on every level, while understanding and communicating the different emphases among us.
LC: How can a poet get hold of a topic this large and emotionally fraught, particularly given the immediacy and personal nature of FTW for you and many of the other poets involved? As an editor, how did you elicit works from the poets who contributed and set parameters, if you did?
MB: I think two quotes apply to all kinds of 'emotional' writing. The first, 'Knowledge is power': the more you know about the issues, the wider your pool of references, ideas and images from which to draw, both politically and poetically. Knowledge gives you flexibility, allows you to step back and think about your specific angle / perspective / point-of-view on the subject. The second is from that Emily Dickinson poem: 'Tell all the truth but tell it slant'. This idea that 'The truth must dazzle gradually / Or every man be blind' is behind so much effective poetry. Ordinarily I'd say time is the key; come away from a subject for long enough to formulate your ideas, come back, tweak the poem, go away again, rinse and repeat. In this project, not everyone had a great deal of time; that's partly why it's ongoing, to allow poets time to revise if we feel a poem is too raw and not quite 'finished'. In these cases we'll offer poets advice, which they can choose to take or leave.
In terms of eliciting work, we make clear that the main focus of our protest is the much-maligned 'Work Capability Assessment' (WCA), which we believe is not fit for purpose. We want it continually revised, scrapped at best. On a larger scale, we want the Atos contract to come to an end. Generally, we suggest that poets take one of two approaches: 1) direct protest at government policies (Atos / DWP collaboration, the WCA, etc.) and 2) quality disability poetry. So much policy-making and divisive propagandist language ('strivers and skivers', 'workers and shirkers') relies on age-old prejudices and misconceptions about disability that we know all too well. So as well as the explicitly political, we're asking for poems that humanise disabled experience and contribute to 'Disability Poetics' in a wider sense. We are the 'hardest hit', and the best way to fight prejudice (whether from the public or government) has always been to firstly expose it for what it is, and then to provide meaningful creative, linguistic and conceptual alternatives, which build a realistic, inclusive and holistic vision of who disabled people are, and how they really (wish to) live. Propaganda got us into this mess. Perhaps creative, nuanced language can help us out of it. We have to try.
LC: Can you talk about a few of the poems that came from FTW?
MB: Sure. I won't pick favourites or quote poems in full here, but I'll briefly mention a few examples that have taken the above approaches. A lot of poets have used that age-old weapon in the protester's arsenal: satire. Humour has always been a poet's way of delivering potent points and eliciting empathy. There's plenty of absurdity to mine from the WCA itself; this idea of being quizzed, by able-bodied people untrained in your disability, on how your disability 'affects you'. Your poem, Laurie, is among the ones that do that so effectively (Disability? / He shrugs, motions to his wheelchair. / There is no box for that). I love how, for the poem's knowing humour, you draw on your experience as an assessor for Social Security eligibility in America.
There were two Long Poems we published recently. I'm cheating by mentioning the first, really, because it's by one of my co-editors, Daniel Sluman: 'Shove Ten Pounds of Sugar in a Seven-pound Bag (A Manifesto for Disability Poetry)' is about the writing of disability poetry itself, and caused a real storm on Facebook when we published it; a lot of people loved it. The other was by Nat Raha, 'The Marriage of George Osborne and Iain Duncan Smith (epithalamion)'. It uses this ode form to celebrate a satirical marriage between the Chancellor of the Exchequer and the Secretary of State for Work and Pensions. It exposes the dark side of the government's 'Equality' policies for LGBT people, and then those affected by Welfare Reform, and any social 'others' who fall outside the government's favour. The poem reminds us that our oppression often stems from the same patriarchal places.
It was very important to me as a disabled person that we had a significant amount of poems by disabled people themselves. The very first poem we put on the site was 'The Snow Revolution' by Sue Marsh – a crucial disability activist in the UK and writer of the blog Diary of a Benefit Scrounger, which has followed Welfare Reform and government attacks on disabled people from the very beginning. That poem uses London snow as a metaphor for disabled people coming together and being their own force for change:
'Yet we settle into something else entirely. A unity of ppl, banking
Marsh carries out much of her activism online, on social networking venues like Twitter. So I love her use of Internet shorthand ('ppl'), there's a real sense of community and common purpose in that language.
The most depressing aspect of all this is the sheer number of people who have died – by suicide or other circumstances – after having their benefits taken away by Atos and the DWP. Online campaigner Alex Andreou (or 'Sturdy Alex' as he's known on Twitter) recently tweeted: 'Number of people who died in the first 10 months of Atos assessments and had left ESA: 10,600.' He then linked to an official DWP PDF, dated July 2012, called 'Incapacity Benefits: Deaths of Recipients'. Of these, the exact number of people found "fit for work" by Atos is not known, and the DWP is not releasing further information despite numerous Freedom of Information requests, but the fact is that thousands of people are spending their last days on the planet being poked and prodded by Atos assessors. We've tried to keep the poems dealing with this death toll to a minimum, but Alan Morrison's 'Auld Reekie's Black Spot', a tribute to poet and playwright Paul Reekie (1962-2010) and the Black Triangle Campaign started in his honour, is among the most devastating.
LC: Given what seems to be the rather shaky status of individuals with disabilities in the UK at this moment, how has your deliberate choice, as a person with disabilities, to take such a public stand against ATOS, affected you personally (if it has), directly or indirectly?
MB: Well, thankfully, after a long and frightening wait, I've been told I'm one of the lucky ones in a practical sense. I'm relatively 'safe' financially (so far…when they want to assess me again for PIP, who knows what'll happen?) and 'the powers that be' haven't chased me to file a lawsuit yet. In terms of emotional and mental health, the whole situation has taken its toll over the last couple of years. There was a point when I wasn't an 'activist', and even now the word scares me a little. I reluctantly took it on because I couldn't stay quiet. Initially I felt a personal impulse to use the only relatively 'public voice' I have, and that's where it starts; it must be where it starts for all disability campaigners, I guess; there's a lot of tribalism and solidarity between us. "You hurt one of us, you'll hear about it from me", kind of thing. I didn't know what the hell I was doing at first, but I'd worry about that later. It has meant lots of learning, in a practical sense, about what a campaigner actually does; where my boundaries lie between this and 'real life' (inverted commas because, of course, it's a life-and-death situation for many); and also about discussion boundaries: what am I prepared to debate, and what are my 'givens' which I won't allow to be questioned, my basis for campaigning? I think if you don't think through those (and I didn't), you can get overly absorbed in the stress and pain (and I did). By the way, I have to thank my co-editors, Sophie Mayer and Daniel Sluman for being a tower of strength personally but also for having such refined critical skills when I couldn't bear to look at another heartbreaking poem written by someone going through it. And I can't forget the poets themselves; there would be no project if it wasn't for them, and ultimately, the biggest feeling I have has to be the feeling of achievement that we've been able to add our voices to the national (and international) protest. Before I forget, we're still accepting submissions from the UK and beyond (jump on board America), and will be for an indefinite time. So, Wordgathering readers and poets, please read our site and, if it feels right, send something quality you think might fit!