Crippled

by Frances Ryan

  For Susan, it was a broken washing machine and freezer. The freezer is her lifeline – it stores her digestive medication and she can’t eat safely without it – and the washing machine – there to regularly clean her clothes and sheets with her incontinence – is a bit of dignity. When both broke a few years back as the bedroom tax and care costs first hit, she could barely scrape together a spare fiver let alone a few hundred pounds. Instead, she turned to a doorstep loan company. In 2014, she took out two loans totalling £900. Five years later, the racked up interest rates means she’s still paying it off: weekly instalments at eighty pounds. The company wanted bigger instalments, she says, but her carer helped talked them down. ‘I couldn’t pay [them] more because of all the benefit cuts.’

  This is the double-edged sword of disability debt: while being more likely to face financial crisis, disabled people are shut out of ways to escape it. Disabled people are less likely to even have a current account than the non-disabled; without a stable income, ‘good credit’ is a phantom. As Susan puts it to me, ‘Bank loans aren’t for people like us.’ Instead, people like Susan are routinely forced to turn to high-risk credit: one in ten disabled people have used doorstep loans, according to Scope research – that’s three times as many as the general population.41 In 2018, research by Citizens Advice into payday loans found that nearly half (48 per cent) of people struggling with ‘home loan debt’ have a long-term health condition or disability.42

  By the time Susan manages to pay the loan back, the interest will have totalled £1,080 – more than the original loan itself. It’ll take another year to pay off the debt but Susan is desperate for another loan. She’s recently had to start using a specialist medical bed – the sides stop her from falling out at night – but she can’t use it because she can’t afford the linen to fit it. She knows that a new loan would cost her – the last doorstep leaflet that fell through her letterbox had an interest rate of 1,394 per cent – but she doesn’t have a choice. ‘You go round in circles,’ she explains. ‘Should I get another loan out? Once you get on that roundabout, you can’t get off it.’

  It isn’t without its poignancy that if Susan had needed help only a few years earlier, she could have turned to the state. The ‘social fund’ – a £300-million-a-year nationally administered service of low-cost loans and grants paid through the JobCentre – used to provide an alternative to high-cost, high-risk credit. If social security is the ‘safety net’, the social fund was the mattress positioned beneath it: a last-ditch support for the poorest citizens in financial emergencies – for example, a fifty-pound loan to pay for transport for a hospital appointment or £400 for a new boiler when the old one packed in. This was tried-and-tested success for vast numbers of families: more than 2.1 million crisis loans and 216,000 care grants were paid out in 2011–12.43 For people living with disabilities or illness, it was especially vital: one-third of all claimants using the social fund were disabled.44

  But as part of the ‘welfare reforms’ of 2013, the coalition government abolished community care grants and crisis loans. In its place, it devolved the responsibility to local councils: a patchwork of 152 devolved programmes in England that local authorities – already stretching to cover core services in the face of spending cuts – had no obligation to fund. At the same time, the government reduced funding for the service by £120 million annually. That this happened to come at a time of vast cuts to social security for disabled people is perhaps austerity at its cruellest: as the government brought in policies that pushed disabled people into crisis, it simultaneously pulled the emergency funds that could help them.

  When Bessie in Nottingham had both of her disability benefits removed in 2017, her only income was pulled overnight. Bumped off out-of-work sickness support, she became eligible for the standard lower unemployment benefit, Jobseeker’s Allowance (JSA), but – with her disability benefits already stopped – she was told her JSA would take weeks to come through. This is standard practice now: as disabled people have their benefits removed, the system leaves them with literally nothing to live on.

  To survive, Bessie applied to the JobCentre for one ninety-three-pound hardship loan – to be knocked off at fifteen pounds a week from her benefit for the privilege – but that ran out fast. With another week to wait for her JSA and with no money for food or gas, Bessie phoned everyone she could think of for help – the JobCentre, the council, her GP – but with the social fund closed, she was told ‘no one does crisis loans any more’. ‘You get passed between different people, getting desperate,’ she says. She’d heard from friends in other areas that councils provide hardship payments for gas and electricity in emergencies, but after ringing hers she was told that hers does not. If she lived only a couple of miles away from the borough she would cross into the city council that still does hardship payments.

  It amounts to what’s little more than a ‘postcode lottery’ on need, with the transfer to local welfare provision simultaneously cutting funding and making a disabled person’s chance of surviving a crisis dependent simply on where they happen to live. By 2018, five years after the social fund closed and the service was devolved to local authorities, poverty campaigners declared local welfare schemes to be ‘on the verge of collapse’, with a quarter of English councils having reduced spending by 85 per cent or more since 2013, and nearly a further quarter closing their schemes entirely, according to research by Church Action on Poverty.45

  Go to Bessie in Nottinghamshire or Exeter or Oxfordshire, for example, and there’s now no scheme at all. A minority – like Islington and Trafford and Rutland – in contrast, have ring-fenced funding, even topping up national government cash when necessary. In Scotland, the Scottish Welfare Fund replaced the social fund, enabling councils to continue to award loans and grants of almost £40 million. Huge budget pressures faced by councils mean even authorities that have protected local welfare in the past will soon embark on drastic cuts; West Sussex County Council, for example, embarked on plans for an 80 per cent reduction in its £800,000 crisis fund from 2019.46 Meanwhile, many English councils are so depleted they’re now simply transferring the remaining scraps of their budget to local food banks or credit unions. Others are merely redirecting desperate families to local poverty and disability charities; a leaflet in the place of cash. In one case, Isle of Wight council offered a sixty-two-year-old homeless woman a voucher to buy a tent.47

  It’s no coincidence that as benefits were cut and emergency funds abolished, food banks are being relied on by the disabled and sick and their families. In the single biggest nationwide study on food banks to date, the University of Oxford in partnership with the Trussell Trust found in 2017 that the majority of people going to food banks are hit by disability or illness.48 A whole century or so after the workhouses and ‘cripples’ were forced to go ‘cap in hand’ to survive, over half of households referred for emergency food parcels in Britain include a disabled person. Some 75 per cent are experiencing ill health.49 I asked a manager of a London food bank if many disabled people came through the doors. ‘We’ve had people who’ve had strokes, lots and lots of people with a mental health problem, several people being treated for cancer,’ she told me. ‘The worst case was a young homeless woman who had had both hands amputated and burns on her face and torso.’ In recent months, she tells me, volunteers have delivered food parcels to disabled people’s homes – they’re starving but they haven’t got the help to physically get to a food bank.

  For different reasons, even a food bank is shut off from Bessie. Her mental health problems mean she can’t eat solid foods – she has a fear of being sick – and she lives off specialist protein and nutrition drinks. Besides, even if a food bank gave her soup as a last resort, there’s no cooker or microwave in the house to heat it. I speak to Bessie after she’s gone two days without a single meal. With her benefit appeal coming up, she’s saving her last few pounds to afford the medical certificate and postage she needs to send to the tribunal panel.

>   She’s just called the GP to see if she can get her specialist food on prescription – ‘even if they could give me half a week’s worth’ – but they refused; budget cuts mean they could only give it to someone if their weight had already fallen below a certain level, not as a way to prevent malnutrition. ‘I suppose that’s some good news. That I’m still a healthy weight,’ she says. Her utility company has let her have a pre-paid card for gas but not electricity, so she’s started to ration the light. In the end, with her benefits stopped and no crisis help available, a friend bought Bessie some packets of food. When that runs out, she tells me she’ll drink loads of tea and water to stave off any hunger pangs. ‘Basically people have to freeze and starve these days,’ she says. ‘There’s nothing to fall back on any more, is there? It’s all been taken away.’

  CHAPTER 2

  Work

  The coroner said that when David Clapson died he had no food in his stomach. David, a former lance corporal in the Royal Signals, had worked in telecommunications for two decades and had left his last job to care for his elderly mum. When she died, David applied for Jobseeker’s Allowance (JSA) to get by but after missing two meetings at the JobCentre, he had his benefits sanctioned for a month. David was a diabetic and without the £71.70 a week from his JSA he could not afford to buy food or to put credit on his electricity card to keep the fridge for his insulin working. Within three weeks, David had died from diabetic ketoacidosis, caused by a severe lack of insulin.

  That was 2013, barely eighteen months after the coalition government had launched its first round of disability benefit cuts, and with it the shift in how Britain saw not only disability but disabled people on unemployment benefits. I covered David’s death for the Guardian, one of the few media organizations to report on the story during a period in which the public gaze was being steered towards Benefits Street–style programmes and ‘shop-the-benefit-fraudster’ headlines. When I first looked into David’s case a month after he died, I purposely resisted calling his death a tragedy.1

  ‘Tragedy’ suggests a one-off incident, a rarity that could not be prevented. What was done to David – and it was done, not something that simply happened – is a particularly horrific example of what has, almost silently, turned into a widespread crisis in Britain’s response to disabled people struggling to work. The words of David’s sister, Gail Thompson, at the time of his death summed up how brutal this climate was becoming. ‘He died with six tea bags, an out-of-date tin of sardines and a can of tomato soup,’ she had noted. ‘There was a pile of CVs next to his body.’2

  By 2018, five years after David’s death, history was repeating itself. Diabetic Amy Driver, who had hearing and sight loss and severe fatigue, had her benefits sanctioned for four weeks after missing a meeting at the JobCentre to go to a hospital appointment. With no money for regular meals, Driver fell into a diabetic coma and died. She was twenty-seven.3

  Britain is a country profoundly uncomfortable with disability and difference. This appears rarely more strongly than in the workplace and the unemployment system, in which disabled people are caught between two entirely contradictory stereotypes. On the one hand, we are pitiable and infirm, incapable of holding positions of influence or of making a capitalist contribution. On the other, we are lazy and wilful scroungers, leaching off the hard-working non-disabled public. This heightened noticeably as austerity measures began to roll out with a particular focus on out-of-work sickness and unemployment benefits. It was as if disabled people were simultaneously pitied for their infirmity and vilified as a useless burden; judged as incapable of basic tasks by non-disabled people and criticized for not being in employment.

  In 2013, as the ‘welfare’ reforms were first rolling out, the Daily Mail ran an article with one GP, Dr Phil Peverely, said to be incensed by ‘the thousands of patients “hell-bent” on trying to prove they are ill just to claim benefits.’4 He told the paper that he was considering displaying a poster of the now late Stephen Hawking with the caption: ‘This bloke is not on the sick.’ The idea was a simple act of shame: if Hawking did not let his disability prevent him from becoming a world-renowned physicist, other disabled people had no such excuse.

  The thinking was clearly preposterous. Each disability is different and factors such as wealth and education set Hawking’s experience apart from most. But this example characterized a growing attitude of judgement and suspicion that began to fester after 2010, and one that rooted itself in the heart of government policy. Against a backdrop of austerity and a growing low-wage and insecure-contract economy, disabled people fell foul of an increasingly pernicious ‘work and benefits’ system: one that, rather than providing a ‘safety net’ for those too disabled to work and support for those who can, gladly abandoned them – the so-called ‘skivers’ – to the labour market at any cost. Heightened by austerity and given a sense of permission by government rhetoric, the narrative long built into capitalist societies was being squared sharply at disabled people: each of us are only valuable because of our contribution to the economy and those whose bodies cannot fit into this traditional mould must be judged or forced to comply.

  The acceleration of the benefit sanctions that ended David’s life is perhaps the most poignant symbol of this. Sanctions – by which the Department for Work and Pensions (DWP), through local JobCentres, removes a claimant’s benefits for apparent behavioural infractions – have been a small part of the unemployment benefit system since the 1990s. At that time, the incoming Labour government adopted a ‘work-first’ strategy, monitoring claimants’ job search activity, backed up by the removal of benefits. This was in many ways the beginning of a fundamental shift in the principle of the welfare state, suggesting that social security was not an entitlement but something that could be awarded or withheld based on a person’s behaviour. In December 2012, the coalition government brought in a series of ‘tougher’ measures that vastly increased the scale and scope of sanctions. This made it easier to take more money from people on benefits, and to take it for longer.

  Targeting specific previously protected groups – such as lone parents and disabled people – was a key part of the so-called ‘reforms’. As wider disability benefit cuts began to bite, disabled people were now fair game to have their support docked like any healthy jobseeker. One of the government’s flagship sanction measures was significantly increasing the amount of money they were able to take from sanctioned disabled and chronically ill people. For the first time, it became legal in Britain for the government to immediately remove 100 per cent of a disabled person’s out-of-work benefits, Employment Support Allowance (ESA).

  For an insight into how callous this is, ESA claimants are disabled people, who by the government’s own definition are so disabled or ill they have no chance of earning an income themselves. (The only group excluded from sanctions were those disabled people judged incapable of any work preparation at all.) At the same time, people like David Clapson – claimants with long-term illnesses or disability but who have been placed on JSA – were victim to the same ratcheted-up punishment as any healthy jobseeker. Under the coalition, the minimum sanction length increased from one week to four, while in the most severe cases they could have their benefits removed entirely for three years.

  The changes resulted in a rapid increase in the number of disabled people having their benefits suspended. Between 2013 and 2014, sanctions against disabled and chronically ill people rose by 580 per cent.5 Benefits were now being withdrawn for a tiny infraction, most often when disabled people are deemed to fail to take part in what the DWP terms ‘work-related activity’: anything from skills training or drawing up a CV to participating in community work placements.

  Since 2010, disabled people in Britain have been hit with more than one million sanctions, according to research by the Demos think tank and academic Ben Baumberg Geiger.6 Separate figures by the Department for Work and Pensions in 2017 showed that almost 6,000 people on the out-of-work sickness benefit, ESA, have had t
heir benefit stopped for at least six months (between December 2012 and December 2016).7 Destitution is the inevitable and proven result of docking benefits. In 2018, a five-year study led by the University of York, the UK’s largest ever research into the effects of conditionality, found that sanctions were likely to reduce those affected to poverty, ill health or, for the particularly vulnerable, even the grimly dubbed ‘survival crime’.8

  Among its recommendations, the York study called for an immediate moratorium on benefit sanctions for disabled people, who, it noted, are disproportionately affected by the policy: the 2018 Demos research found that unemployed disabled people are up to 53 per cent more likely to be docked money than claimants who are not disabled.9 There’s countless evidence of just what this looks like in practice. A cross-party Parliamentary inquiry into benefit sanctions undertaken in 2015 heard from a twenty-three-year-old pregnant woman who was receiving ESA for mental health problems following the stillbirth of her first baby eight months earlier.10 She was sanctioned after missing one ‘work-focused interview’ because on that day she had found it too difficult to leave her flat. With no money to feed herself or her unborn child or even for a bus fare, she ended up walking two miles to a food bank for an emergency food parcel.

  By 2018, as the sanctions regime continued and MPs undertook another inquiry, a man with epilepsy told the committee how he had been sanctioned after missing a work-related meeting because he was in hospital, due to multiple seizures. Another disabled woman recounted how she had been forced to spend nearly a year without benefits after being wrongly sanctioned. With no money to pay rent in her temporary accommodation, she became homeless and was forced to sleep in her college library. On other nights, she rode the night bus just to have somewhere to sleep. She was recovering from an accident and on heavy-duty morphine but was given no special allowances to keep her social security. As she told MPs, ‘If you ask them [the DWP] for help they will say, “No, we will punish you instead.” ’11