I try to tell myself: I am a human being. My existence is worthwhile

Intrusive questions about your health. The fear and uncertainty of a claim being rejected. Trying to make ends meet through bureaucratic delays. What is life really like for those who claim disability benefits?

“Most of the time I try to remind myself: ‘I am a human being. My existence is worthwhile.’ But sometimes it’s just impossible to keep telling yourself that.”

Lisa Egan is in the middle of re-applying for her employment-related disability benefit. The 33-year-old's mobility impairment and chronic health problems meanthat - as much as she would like to - she’s unable to work, and is reliant on the benefit. If her application is turned down, she tells me, she won’t have enough money for food, heating, or her non-prescription medications. 

When I spoke to her in late December, she was worrying she wouldn’t complete her paperwork in time for her face-to-face assessment in January. “As it is, my form is currently three weeks late. I've got so much to gather and so much to write about,” she says. “I'm almost there, but I’m not going to get it done in time to post it to them. I’ll have to hand it to them on the day.” She’s been given four weeks over the Christmas period to fill in an extensive form and collect all of her medical evidence. But, given how unwell she often feels due to her condition, it simply isn’t enough.

“The fear of ‘I can’t get this done in time, they're going to stop my money’ is pretty rough," says Egan. "My depression has definitely been made worse by the whole experience. Sitting there with the form in your hand to beg for ‘taxpayers’ money’ to fund your burdensome existence makes it really hard to find any reason to not just give up.”  

The reason Egan cannot give up - as anyone receiving benefits will know - is necessity. Disability benefits, whether work-related or for care or help with mobility, are fundamental to millions of people's lives. They are an "entitlement" that has to be asked for, repeatedly. They pay for the things that most people will never have to consider and needs that most people will never know exist.

The word "benefit" is, in many ways, a misleading one. There is no physical, emotional, or social benefit to being reliant on government support. The situation is made even worse when the rhetoric of "scroungers" or "freeloaders" is employed.

 

Lisa Egan: "The fear of 'they're going to stop my money' is pretty rough

 

The benefit Lisa Egan is currently applying for is Employment and Support Allowance (ESA) and the process will take at least 13 weeks. It includes an invasive interview and assessment by the Department of Work and Pensions.

After that process is completed, a claimant's application is either rejected outright, or placed in one of two groups. The first, the "support group", comprises those who are deemed unable to work. The second, the "work-related assisted group", are judged to be capable of taking a job provided they are given support.

For Lisa Egan, this means that the best possible result she can expect is not to be forced to do a job she cannot physically do. She is fighting for around a hundred pounds a week

That money won't be spent on luxuries, but essentials. To be without such things is something 41-year-old Daniel Mann* knows well. He was a newly qualified teacher when two brain injuries left him visually impaired and largely unable to walk or use his arms. 

Mann completed his first ESA assessment in December 2012. It was successful, but due to a delay in processing the application, he has been left waiting for the money for weeks. When I spoke to him, he was clearly frightened by the shortfall, and was spending the days before Christmas chasing his benefit payment while trying to work out short-term ways to get by. “I called to apply for a crisis loan after running out of food,” he tells me. 

He stopped the crisis loan application after a “very helpful lady” at the Department of Work and Pensions promised his ESA payment would arrive the same day. It didn’t, having been lost between two government departments. “I’ve called my energy supplier and council to explain and to request they hold off legal proceedings for outstanding bills,” he says.

There doesn’t need to be a major error like this for the application process to be fraught. Claiming disability support is generally an unpleasant experience; one that simultaneously involves cold bureaucracy and uncomfortably personal declarations. Health is a private thing, but this is a system that demands exposure, intimacy disclosed face-to-face to a stranger and fitted in endless boxes.

Deborah Kelly, 32, has just re-applied for Disability Living Allowance (DLA)  two years after last doing so. DLA is a key benefit to many people: it is not means-tested and unrelated to the applicant's employment status, and it brings in between £20 to £125 to help with costs such as transport.

“The most difficult but necessary task in filling in the DLA form is to think about your life in a very negative way,” Kelly says. “Why can’t you do X? What goes wrong if you do X?” She was diagnosed with ME as a teenager, and spends most of her life in bed, asleep. “But I don’t really think about that, until I have forms like this to fill in.”

It took her 4,300 words to complete the form. Because of her cognitive and physical problems, each of these had to be typed, printed, cut up and stuck into the relevant boxes. Some of the questions were unhelpfully unclear, and the need to constantly quantify your limitations can make many impossible to answer honestly. “There’s a box only big enough for two digits beside the question ‘How often?’ and you don’t have a clue if you’re supposed to answer how often in a day or how often in a week,” Kelly says. “The form’s designed so that it’s easy to feel that they’re trying to trip you up.”

This feeling quickly leads to an inclination to understate the problem; many claimants are unsure what ‘counts’ and are afraid of being accused of ‘overselling it’ or looking for sympathy. Having previously been turned down for an award (only to be given it back on appeal), Deborah knows that impulse is only worsened by rejection.

“Being turned down is a bit like facing an accusation,” she says. “If you’ve said you need this help and they say you don’t, they’ve as good as said you’re lying.” She tells me that for some years,she has been on a lower award of the care component of DLA than she knows she’s entitled to. “I’ve not had the energy, physically, mentally and emotionally, to fight it.”  

 

"Nobody believed me"

The fear of inaccurate and unfeeling assessments has only increased in recent years as the Government, buoyed by misleading rhetoric and a desire for what they call a “greater use of evidence and re-assessment” , has set about sweeping changes to disability and sickness support. 

By 2015, DLA is to be replaced by the Personal Independence Payment (PIP); a change that will see an estimated 500,000 people lose their entitlement. Employment and Support Allowance (ESA) has already replaced Incapacity Benefit (IB). All new ESA claimants, and existing IB claimants, are required to take the much criticised Atos-administered Work Capability Assessment (WCA).  

Fifty-nine-year-old Mary describes her assessment experience to me as “humiliating”. She’s had difficulty walking since an attack in the street left her with a broken back 18 years ago, and has arthritis in her spine and neck.

During her Work Capability Assessment, her assessor told her to stand in the middle of the room without her walking stick and touch her wrists. “It felt like she was teaching me to do the hoky coky,” she says. After explaining she was unable to do so without her stick, Mary was allowed to lean  against the examination bed to do the exercises. “After a very short time I felt myself sliding off the bed towards the floor, which she [the doctor] did nothing to stop me from falling. My husband caught me just in time.”

She was placed in the work-related assisted group. “I’m 60 this year,” she says.

“We all know ATOS are doing the government’s dirty work,” Gabriel Parlour tells me. Her son attended his Work Capability Assessment a year ago and the anger and distress of it clearly remains.

Born with a severe brain injury, Ashley, now 39, was found by a psychologist to have "no executive functioning" and his mum describes him to me as highly vulnerable. “The findings erred on the side of it being detrimental to my son's mental health to be found fit for the work group,” she says. “Even so, the so called ‘decision maker’ chose to ignore the recommendations.” He was passed as fit to work. After going to court to appeal, a judge placed Ashley in the non-working support group and told the family he should never be called to such assessments again.

The Parlours aren’t alone in this. As of 2012, around 40 per cent of those who were found fit for work were appealing against the decision, and about 40 per cent of cases which go to tribunal were overturned. “The period of waiting . . . was fraught for both of us, causing much stress and sleepless nights for me,” Gabriel says. “I am ashamed of the country I live in.”

For many, there is a feeling of being abandoned. Claire Whittingham, 31, had been awarded DLA in 2004 after a physical and sexual assault left her with post-traumatic stress disorder and a severe Crohns Disease flare-up.

After a period of homelessness led her to miss the renewal deadline for her award in 2008, she later reapplied, only to be rejected repeatedly. The experience made her feel let down by the system. “My own GP made me feel like a fraud by making snide remarks and saying he was reluctant to write reports," she says. "He mentioned that in his five-line report to the DWP too. I felt like nobody believed [me]."

The stress of this situation, compounded by facing homelessness again, saw Whittingham taking an overdose.

“It was a Wednesday,” she says. “I sent my last six texts as a suicide note to my ex-partner. She’d helped me with care needs, like showering. By the time I'd taken the overdose she’d arrived with a paramedic.” When asked by hospital staff why she’d tried to take her own life, Whittingham replied that it was because the government wouldn’t help her. “It had been intense fighting for DLA and I’d tried to commit suicide through the stress.”

By the end of 2010, after going to a tribunal, she was awarded low rate care and mobility support for two years; less than she’d received in 2004. The award runs out this month and the process has begun again. “I dread to think what 2013 holds,” she tells me. “I'm scared, confused and alone. I'd like a break from it all. I need to concentrate on various health issues.”

That’s the thing with necessity. No matter how the system treats you, there’s little choice but to go back and ask it for help.

 

 

The Department for Work and Pensions (DWP) runs a telephone helpline giving information on benefits for sick and disabled people, their representatives and carers. In England, Wales and Scotland, you can contact the Benefit Enquiry Line on: Tel: 0800 88 22 00 Textphone: 0800 24 33 55.

If you need help from the Samaritans, the number is 08457 90 90 90. 

*name has been changed at interviewee's request

A protest about disability cuts in 2011. Photo: Getty

Frances Ryan is a journalist and political researcher. She writes regularly for the Guardian, New Statesman, and others on disability, feminism, and most areas of equality you throw at her. She has a doctorate in inequality in education. Her website is here.

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After the defeat of Hillary Clinton, what should the US left do next?

For disappointed Bernie Sanders supporters and others on the left, the big question is now: should they work within the Democratic party?

For the majority of the US left, Hillary Clinton’s electoral defeat came as a surprise. Sure, they’d had doubts about her candidacy from the start. They’d expressed disgust at her platform, history, priorities and dubious associations – not least, at her campaign’s focus on cosying up to wealthy elites, courting the support of billionaires such as slum landlord Warren Buffett, at the expense of trying on to hold on to the party’s core working-class vote – but the general belief was that, however undeservedly, she’d still manage to pull it off.

After all, polling suggested she maintained a fairly consistent lead in key swing states even as Trump somewhat narrowed the gap, and there was reason to think that demographic trends would work against her competitor, who openly courted white supremacist votes.

Hindsight is 20/20, but many now feel they took their eye off the ball.  Leslie Lee III, a writer from Louisiana currently residing just outside Washington DC, argues that people “got so worn down by the polls that we forgot our message, that Clinton was the worst possible candidate to put against Trump”. For him, identifying what went wrong is simple:  “Trump promised people something, the establishment candidate was telling people America was already great. It doesn’t matter if he was doing it in a dishonest, con-artist, racist, xenophobic, sexist way – he said he’d fix people’s problems, while Clinton said they didn’t have problems”.

Leslie isn’t alone in believing that a wonkish focus on polls and data distracted from what was really going on. Everyone I speak to feels that the supposed ‘experts’ from the liberal mainstream aren’t equipped to understand the current political landscape. “We are witnessing a global phenomenon,” suggests writer Amber A’Lee Frost, who first got involved with the Democrats to support the Sanders campaign but voted Obama in 2008. “The UK offers the most clear parallel to the US. Nationalism, racism and xenophobia are festering.” Student and Democratic Socialists of America activist Emily Robinson agrees: “All across the world we’ve seen massive right-wing upswells, from Trump, LePen and May in the West to Modi and Erdogan in the East.” Whatever differences exist between these respective politicians, it’s hard to argue with the contention there’s been a widespread shift to the right.

US left-wingers argue that liberals fail to understand their own role in the current situation. From a British perspective, it’s hard to disagree. Repeatedly, I’ve seen discussions shut down with the claim that even acknowledging economy policy may have contributed to the resurgence of ethno-nationalist ideology amounts to apologism. Nor can faulty data be held entirely responsible for any complacency. In the run-up to the Brexit vote, polls suggested that the result would be too close to call; nonetheless, within the liberal bubble almost everyone assumed we’d vote to remain. The fact the value of the pound rose on the eve of the referendum was seen as evidence for this belief, as if currency traders have some sort of special insight into the mind of the average UK voter. Looking back, the whole thing is laughable.

Over in the US, the disconnect seems to be much the same. “People in the street weren’t following that stuff,” Leslie says of the finer details of both the Trump and Clinton campaigns. “Trump said he would fix their problems, Clinton said they didn’t have any. If we’d stayed focused on that it would have been obvious.” Instead, many of her supporters believed that it was Hillary’s turn and consequently dismissed substantive criticisms, sometimes claiming the vast majority of opposition was simply latent sexism. Even the campaign slogan “I’m With Her” seemed to be about what voters could should for Clinton, not what Clinton would do for them. As polls narrowed, party insiders continued to insist that Clinton was the rightful heir to Obama’s voting coalition, however little she actually did to earn it. 

A lack of message simplicity definitely seems to have been part of the problem. When I speak to Christian, who currently works in outreach and recruitment for the Democratic Socialists of America’s national office, he admits he was barely aware of the platform Clinton was campaigning on. “I’d ask my friends, and sometimes she’d talk about stuff, but it’s so vague,” he explains. “The average working-class person shouldn’t have to go to a website and read a 30 page policy document. It feels like it’s written that way for a reason, it’s muddled, neoliberal bullshit that lobbyists have written.” It’s true that media coverage probably didn’t help, with reporting frequently focuses on gossip and overblown scandal over substantive policy issues, but an effective political communicator must ensure their core messages cut through. Obama managed it in 2008, and however abhorrent we might find it, pretty much everyone heard about Trump’s wall.

It’s also hard to ignite excitement for the continuity candidate when many people don’t believe that the status quo actually benefits them. “I think neoliberalism no longer works as an electoral incentive to voters, especially working-class voters,” argues Amber. Emily tells me that prior to this election she’d worked on two Democratic campaigns, but before Sanders she’d been ready to give up on the party. “When they had the power to, the Democrats failed to implement policies that helped the working class, Hispanic, Black and Muslim communities, and women.”

She explains her disappointment during the early part of Obama’s first term, when the Democrats held the House, Senate and Oval Office. “They jumped away from the single payer option for healthcare, which would have helped the entire American population. The implementation of the DREAM act would have helped immigrant communities. There’s also a lot they could have done on policing and carceral reform, repealing federal use of private prisons, for example, and labour rights, by introducing federal protections for trade unions and effectively repealing so-called ‘right to work’ laws in many states. They did not mandate free, universal pre-kindergarten nor did they even attempt to work forwards free collect – or, at the bare minimum free community college.”

For Douglas Williams, a graduate student at Wayne State University, it was Obama’s relationship with labour unions that caused him to drift away from the party. “In 2013, Barack Obama appointed a union buster to a federal judgeship in the District of Columbia. I started to think, labour gave $1.1 billion to national Democrat party politics between 2005 and 2011, and labour got literally nothing from it.”

One left-leaning activist, who prefers to be identified by his blogging pseudonym Cato of Utica, campaigned door-to-door for Clinton. He explains in visceral detail his disillusionment with the party he’d worked within for roughly a decade: “I was heavily involved in North Carolina in places where the recovery never even touched. These were working poor people, and the doorbells didn’t work. If the doorbells are broken, what else is broken inside the house? What else isn’t the landlord taking care of? I looked at our candidates and none of the people I was pushing were going to address the problems in these people’s lives.”

Much ink has been spilled trying to pin down exactly what motivated people to vote Trump, whose campaign rhetoric was more explicitly xenophobic, racist and sexist than any other recent presidential candidate. Most of his supporters also voted Republican in previous elections, but two other groups are more interesting from a left-wing perspective: those who previously voted Obama but opted for Trump this time round, and non-voters who were inspired to make it to the polling booth for the first time. Overwhelmingly, both groups are concentrated in lower income categories.

“I think people voted for Trump because he acknowledged that there is something very wrong with America,” suggests Amber. “I obviously disagree with Trump voters on what is wrong with this country, and the fact that his campaign was fuelled by nationalism and racism certainly gave it a terrifying edge, but I know why they voted for him, even though he will ultimately betray his most vulnerable supporters.”

It would be absurd to discount racism as a factor in an election where the winning candidate was endorsed by the official newspaper of the Ku Klux Klan and its former leader David Duke, but Leslie disagrees with those who claim it was the primary motivation for the most Trump voters. His earliest political memory is from around 4th or 5th grade, when David Duke was running for Governor of Louisiana. “As one of the few Black kids in your class,” he recalls, “it really makes you realise how important politics is early on”. One of his closest friends was a previous Obama voter who opted for Trump this election, and the common factor seems to have been a message of optimism.

“Obama offered something more important than these people’s prejudices: hope and change, basically. He didn’t deliver it but he offered it. Romney was seen as the establishment. Obama said, ‘I’m an outsider and I’ll bring something new to the table’. There’s a line between Trump and Obama in that vein – and my friend will tell you the same.”

At a time when many people have a strong desire to kick out at the political establishment, Clinton was the ultimate establishment candidate. Leslie is scathing about the extent to which she actively highlighted this in her campaign: “She talked about being experienced – what does that mean? It means you’ve been part of the establishment. She attacked Obama with her experience in 2008 so I don’t know why she thought it would work. It’s not like being the local dog catcher, you don’t turn in your resume and if you have the most experience you get it. You need to have a message and get people inspired, and she didn’t have it.”

Most of the people I speak to believe that Sanders would have had a better chance of beating Trump, and many poured significant time, effort and money into his campaign. They note that polling showing Sanders had consistently higher approval ratings amongst the general public than Clinton throughout the primaries, and argue that people citing recently released unused opposition research as evidence he’d have lost don’t understand voter motivations. The idea that Sanders’ experience of being poor and unemployed would have worked against him is seen as particularly mockable. Whatever the truth, the more relevant question now is what the left does next.

Opinion is split between those who think working within the Democratic Party is the best approach and those who believe its unaccountable, bureaucratic structures make it a lost cause. Emily is in the first category. “I think leftists should, in a limited capacity, be running within what is now the desiccated carcass of the Democratic Party, rather than naively attempting to build a party from the ground up and risking splitting the left-liberal vote,” she tells me. “They should be prepared to run for elections with a (D) next to their name, even if they refuse to bend at the knee to the neoliberal, imperial tendencies of the Democratic elite.”

Particularly exciting right now is the work of the Democratic Socialists of America, an organisation which aims to shape the future of the party in a leftwards direction. Membership had increased by a third since the election – aided partly by support from celebrities such as Killer Mike and Rob Delaney. “We’re planning on Trump being a one-term president,” DSA representative Christian tells me. “We have a 50 state strategy, but right now we only have chapters in 31 states. It’s not just about elections, it’s threefold: electoral, workplace and community organising to win on all counts.”

Douglas is sceptical about whether it’s possible to restructure the Democratic Party in the way he considers necessary, but he agrees with the DSA’s focus on community organising: “Why can’t an organisation be like ‘we’re going to sponsor a little league team’? Why can’t we open a soup kitchen? We’re making noise, we’re out here, but we heard your aunt is having trouble with her roof. We’ve got guys who can fix that, and then we’ll leave a little sign saying it was us.” Cato of Utica references something similar that happened in Flint, where the Plumbers and Pipefitters Union visited people’s homes to make sure their water filters were properly fitted.

“We need to rebuild the labour movement,” agrees Emily. “Not only to carry out all the normal functions of unions, but also to provide a community, and spaces for education, child care and other forms of support. If we don’t build solidarity among the working class – not just the white working class, but the Hispanic working class, the Black working class and so on – we risk allowing another reactionary movement caused by cleavages promoted by the ruling classes.”

Left-wing organisations traditionally target places like New York, Los Angeles and Chicago, where it’s easier to build support. Christian argues that the Democratic Party, and the DSA specifically, need to “focus on the Rust Belt, where the Democrats lost, and the South, where Bernie lost”. There’s a widespread belief that Southern states which have been Republican for decades now could be winnable in future presidential elections, partly because of demographic trends pointing towards increasingly ethnically diverse voting populations. As for the Rust Belt, it’s hard to argue with the claim that a different candidate could do better than Clinton – who didn’t even bother to visit Wisconsin, which swung Republican, in the months preceding the vote.

The DSA’s 50 state strategy involves creating a national framework, but with devolved power allowing local chapters to focus on the issues most relevant in their area. “In Texas our chapter is really strong and we do a lot of work on immigration reform, working with undocumented communities, whereas Boston obviously doesn’t have to deal with that so much,” Christian explains to me. “In places like Kentucky and West Virginia, coal country, Republicans like Trump will say coal is coming back. We say we actually need to transition to a new economy and create green jobs, and places where people live where they don’t get cancer from coal.”

Christian believes that the unexpected success of the Sanders campaign indicates there’s an appetite for the kind of politics the DSA is offering, and that a similar candidate could gain the Democratic nomination in four years time. “Having a candidate announce earlier than Bernie did, and with a good ground game in place, we could have 50,000 volunteers ready to go. We wouldn’t be scrambling around this time, we’d be ready to go to war with [Trump]”. Like many on the left, he thinks that Keith Ellison’s selection as DNC chair is a crucial part of the puzzle. Ellison was the first Muslim elected to Congress and is chair of the Progressive Caucus. “He’s a way better politician than Bernie,” Christian contends. “He understands the intricacy of talking about labour, poverty and unions very well.”

Others I speak to argue that focus should be on working from the ground up. “I’m not even talking about state legislatures,” explains Douglas. “I mean city councillors, school boards, things like that. This is going to be a long-term project and has to start at the absolute lowest level and work its way up. People don’t even realise, in some of these cities you can get elected to the city council on 500 votes. We want to start on the big stuff but it has to be an independent, left local movement. We can run all the candidates we want, but unless we’re out here informing people ‘it’s not actually about Mexicans or Muslims, it’s your boss, it’s his fault you can’t afford to save the money to send your kids to college,’ what’s the point?”

Whatever disagreements about strategy exist, the US left seems to be united by two things: fear of Trump’s presidency and a determination to succeed. Many members of the DSA are worried about their involvement with the organisation being publicly known. Unsurprisingly, this is more acute for members of groups attacked in Trump’s rhetoric. “We see apprehensiveness with some of our Latino membership,” Christian tells me. “People don’t want to out themselves because that's risking your own livelihood. We’re a working class organisation and most people have other jobs.”

With Trump associates making noises about recreating the House Un-American Activities Committee, some fear left-wingers could be targeted as dissidents as in previous decades. However realistic the threat of government persecution, there’s already a far-right website, KeyWiki, that keeps tabs on members of socialist organisations. Everyone I speak to agrees that groups particularly vulnerable to being targeted by Trump and his supporters – including Muslim, Latino and African American communities – must be defended at all cost. “The aim of the left should be to make it impossible for Trump to govern,” says Cato of Utica. “Establishment Democrats are already making conciliatory noises. If the Democrats aren’t going to do it in the Senate, the people have to do it in the streets through direct action.”

When I ask Amber what happens next, her response seems to sum up the mood amongst the US left: “To be honest, I have no idea. I’m terrified but I am ready to fight.”