Читать книгу Crippled - Frances Ryan - Страница 9

‘When you get your social security letter it tells you on there the amount of money the government says you need to live on. But by the time you take out all my bills, I’ve nothing to live on,’ Susan tells me from her bungalow in east London.

The fifty-eight-year-old has a range of health problems – among them a severe spinal condition that means for the last twenty years she’s needed a wheelchair. A serious bowel condition, on top of what her consultants suspect is multiple sclerosis, brings chronic pain and shortened breaths. She struggles when her body’s too weak to get out of bed, let alone hold down a job. Money has been tight since having to leave work as a bookkeeper in the 1990s. However, it is the wave of cuts to disability support, ushered in by David Cameron’s coalition government over the spring of 2013, that has pushed her over the edge.

Susan’s second bedroom is filled with a large oxygen cylinder, boxes of heavy-duty painkillers, and a bed for a carer when she’s too ill to cope alone. The room now costs her twelve pounds a week due to the bedroom tax, the policy that penalizes social housing tenants for ‘under-occupying’ their homes. Council tax now takes another twelve pounds a month. Like thousands of disabled people in poverty, Susan used to be exempt from this charge but the cuts to council tax support has seen her have to pay for the first time.

Her care bill takes another chunk. Susan has a carer for thirty-seven hours a week but since local council cuts came in a few years back, she has to find fifty-seven pounds a week out of her own money for it. Her incontinence pads, a necessity with her bowel condition, used to be paid for by her health authority but Susan now has to cover the ten pounds a week herself. Another four pounds a week goes on a network alarm to hang around her neck. She has been found unconscious and out of her wheelchair before, but if she doesn’t have the money, the emergency button will get shut off.

I first spoke to Susan in the autumn of 2013, just after the first round of austerity measures came into force. By that time, after only six months of social security cuts, her gas and electricity were already in arrears. She could not afford to put her heating on and had stopped using her oven. As her benefits shrank, she was scared to run up any bills. In the day, she used hot-water bottles and blankets to keep warm. By 7 p.m., as the cold crept in, she was huddled up in bed with her dog.

I went back to see her four years later in the summer of 2017, only a few weeks after Theresa May’s Conservatives returned to power. In Susan’s own words, life had become ‘unbearable’. ‘Year by year, it’s getting worse.’ As utility bills, food prices and inflation have risen in recent years, her reduced benefits were stretched to breaking point. She stopped going out socially, ‘even to the pictures’: she can’t afford the taxi fare there – a bus is no good when you faint in your wheelchair – and besides, she explained, she hasn’t got money for the cup of tea when she gets there. Her greatest extravagance is using the electricity to run her nebulizer four times a day to help her breathe.

Susan’s two-bed bungalow is covered with the signs of her ill health: an electric wheelchair, grab rails and a bathing chair on wheels in the bathroom, and ‘two-handled’ mugs for her shaking hands. But it’s the empty cupboards that stand out. Nowadays, she can rarely afford food. Her bowel condition means she can’t safely eat solids or absorb vitamins naturally and needs specialist meals: a chemically pureed food her body can digest easily. But it’s £3.50 a go. Two years ago, she stopped buying it completely: since the benefit cuts have come in, she just doesn’t have the money any more. ‘My doctor’s telling me I need a certain diet but the government means I can’t afford it.’

Instead, she lives off cereal. Susan’s done the sums. A box is a couple of pounds. Porridge bulks out her stomach. She can’t eat meat because of her digestive condition but the alternatives may as well be pieces of gold. ‘Have you seen the price of fish lately? It’s a luxury.’ The only way she could afford it, she says, is if she won the lottery. ‘And I can’t afford that now. They’ve doubled the price of a ticket. Two pounds is a box of cereal.’

Susan’s lost four kilos in the five years since her benefits were cut and her weight is still dropping. ‘I’m starving,’ she says. ‘Starving.’ This is what it is to be disabled in modern Britain. In one of the richest societies in history, disabled people are living in near-Dickensian levels of hardship. It would be comforting to believe Susan was a rare case – an upsetting but ultimately token incident. Describe it to the average government minister and they would likely utter words of muted outrage – that what’s happening to one woman in the front room of an east London flat is sad but ultimately a blip in Britain’s otherwise fair and humane system. But talk to a local charity gifting a food hamper to a dad with Parkinson’s or a welfare rights adviser buried in benefit appeals forms from desperate clients – or, indeed, listen to people like Susan themselves – and such accounts of precarity are the tip of the iceberg.

Research by the Joseph Rowntree Foundation (JRF) shows that 4 million disabled adults are now living below the breadline in 2018.¹ To get a picture of the scale of this, that number accounts for over a third of all adults in poverty in the country.² One in five disabled people in Britain are currently in food poverty, according to Scope research in 2017,³ which means routinely skipping meals or going without essential nutrients. The same study found one in six disabled people now report having to wear a coat indoors.⁴ They’re cold but they can’t afford to put the heating on.

In 2017, the Equality and Human Rights Commission (EHRC) released a study detailing what can only be described as an epidemic of disability poverty in Britain. It found that even having a disabled loved one is enough to push a whole family into hardship: almost six in ten families that include a disabled person are currently living without even basic necessities, such as food or shelter.⁵ That’s twice as many as the total population.

This would be bad enough but most calculations of the number of disabled people in poverty may actually be underestimates, as few take into consideration the extra costs of disability – that is, the fact that, unlike others, disabled people often have to stretch their income to pay not just for food, utilities and rent, but also for anything from a wheelchair to extra heating in the winter. In 2018, for the first time, as well as looking at incomes, the Social Metrics Commission measured poverty in a way that took into account what it called the ‘inescapable costs’ of disability. It found that more than half of families living below the breadline now contain at least one person with a disability.⁶

Poverty – and with it, inequality – for disabled people is not a fresh stain on Britain. In the nineteenth century, as the Poor Law set out to reduce the so-called financial drain of the poor, destitute disabled people were routinely housed in the squalor of the workhouses, while others – dubbed ‘idiots’ and ‘lunatics’ – were put in pauper asylums. At a time in which the state was deemed to have no duty of care to its disabled citizens, disabled people were forced to beg in the street or go cap in hand to growing charitable organizations, such as the tellingly named ‘Guild of the Brave Poor Things’.

As I grew up with a disability in the 1990s, this sort of treatment felt quite alien; a dark chapter for the history books. But even in the boom of New Labour, despite undeniable vast progress on a number of measures, millions of disabled people, supposedly protected by the modern welfare state, were still living in poverty. In 2005, three out of ten disabled adults of working age were below the breadline, according to the Joseph Rowntree Foundation.⁷ That’s almost a third of disabled people in the country living in day-to-day hardship. Over the next decade, this disability inequality has remained firmly in place: as of 2015–16, poverty rates for disabled and non-disabled households stayed almost static (31 per cent and 19 per cent respectively).⁸

It would be grim enough that, as each year has passed, the UK has made next to no progress on lifting disabled people out of poverty. Or that far from uniquely being ‘protected’ by the British state, the very citizens most in need have, for decades, actually been more likely to be in poverty than anyone else. But as Susan’s empty cupboards show, when it comes to our government’s treatment of disabled people, we are at a point that’s more shameful still. Rather than the state struggling to provide a safety net for people with disabilities, it’s now actively pushing them further into poverty itself.

In the wake of the 2008 financial crash, David Cameron and colleagues set upon an unprecedented wave of austerity in which disabled people were the key target. Cutting disability benefits by tens of billions of pounds was said to be a necessity – a prudent ‘tough choice’ to get the deficit down and rebuild the economy. This was as much a moral case as an economic one: as so-called hardworking ‘strivers’ watched their wages shrink, ‘scrounging’ disabled people were said to be milking the system. The image of a disabled person in the new age of austerity was not that of a human being who deserved support but of a liar and leach, living on the taxpayer’s expense.

Since becoming ill, Bessie has washed her clothes in a bucket. The fifty-one-year-old has agoraphobia, Asperger’s and digestive problems and had worked in her late dad’s general store since she was twelve. But as her conditions got worse, even part-time hours became impossible – ‘I was crippled with agoraphobia and panic attacks’ – and by 2011 she had had to give up work entirely. For the next two years, she lived off her savings and some money she’d inherited from her dad, and when the money ran out, she applied for disability benefits.

The benefits themselves sound like government jargon – the out-of-work sickness benefit, Employment and Support Allowance (ESA) or Disability Living Allowance (DLA) – but for Bessie, they meant falling into hardship. As her illnesses forced her to live off social security, the most basic costs – food, electricity, clothes from a charity shop – were out of reach. Walk round Bessie’s two-bed flat in Nottingham and ‘a life of Riley’ is not the picture that comes to mind. There’s no oven in her kitchen, or a microwave. No freezer either; as she began to scrape by on social security, she got rid of that to save money. When her washing machine broke, she couldn’t afford to replace it – not even with a second-hand one. Instead, she’d wash her clothes by hand; trousers, jumpers, with the water squeezed out by a spinner.

For all the talk of a comfortable life on benefits, disabled people like Bessie were almost destined to fall into hardship: scraping by on low benefits, lucky to have enough for food and rent. The Living Wage Foundation calculated that the figure needed to cover the true cost of living was £9.00 per hour (£10.55 in London) in 2018–19,⁹ with the rise put down to the increased cost of household goods, rents and transport. Yet a disabled person like Bessie who’s too ill to work was receiving £102 a week on her classification of ESA – the equivalent of £2.55 an hour for a full-time worker.

Or, to put it another way, a sum so meagre that researchers at the Disability Benefits Consortium in 2015 found it was leaving a third of recipients struggling to afford to eat.¹⁰ That very thing heralded as an easy answer to any disabled person’s problems – the so-called bloated welfare state – was in fact already so threadbare that it was actively pushing them into financial crisis. And yet it was these people – the long-term sick and disabled counting every last penny – who in the name of ‘economic savings’ were picked out by politicians to lose the little they had.

I returned to see Bessie several times over the next five years as austerity measures were introduced after 2012. Because she lived alone in a social housing property with a second bedroom, from April 2013 the bedroom tax saw her lose twelve pounds housing benefit a week. As she tried to balance the bills, it meant that, for the first time in her life, Bessie was pushed into debt: by October 2013 she had six months of rent arrears, as well as for water, gas and electricity. To be able to eat and have some heating through the winter, Bessie had to sell jewellery she had inherited from her late parents: a couple of rings, a gold sovereign. ‘It’s awful. All gone. I sometimes wonder what they’d think. But you have to survive, don’t you?’

Things got harder. Over the next few years, Bessie was struck again and again by cuts. In 2016, as government so-called welfare reforms set in, Bessie was summoned for multiple ‘reassessments’ of her disability benefits. In the space of a year, she lost it all: first her out-of-work sickness benefit, ESA, and then in the summer of 2017 she had her lifetime award of DLA – the benefit that paid for specialist food for her digestive condition – removed too. What it has brought to Bessie is a profound anxiety. This was exacerbated by the distressing assessments themselves: the assessor ‘was just bombarding me and I couldn’t think properly. She made me cry.’

Bessie has been doing her best to build her life since she fell ill. She is halfway through a law degree with the Open University and is trying to start a business doing bookkeeping from home a few hours a week; but each time she gets up, she’s knocked down again. The worry got so much that in the autumn of 2017 she called a district mental health nurse. She had to go on anti-anxiety tablets and apply for counselling, but with squeezed NHS mental health services, she was on the waiting list for over four months before her first appointment. ‘I can’t cope any more.’

Coping is often the only choice. After both of her disability benefits were stopped, Bessie sold more things from her home. She got rid of her television, as the licence costs money. She had pre-payment meters fitted – four pounds a week – to ration her heat and light. Sometimes, when awake in the early hours of the morning, she’d listen as it clicked to eight pounds at 2 a.m.

With the state pulling away, charities helped with the smallest of luxuries: a new mattress (‘mine had a big spring coming out,’ she says); some carpet for the bare floor; and, at last, a washing machine. While waiting to appeal her benefit rejections at tribunals, she saved money for a television licence and with it the distraction. ‘You have to have something, don’t you?’

At times Bessie has to list which of her possessions to sell next in lieu of her disability benefits. It’s reminiscent of a sort of violence and strips away even a semblance of security. Research by the New Policy Institute (NPI) in 2016 paints a stark picture of how far exactly this problem spreads, chronicling the proportion of disabled people who are classed as living in what it terms ‘severe material deprivation’.¹¹

The term ‘deprived’ conjures up a stark image – in essence, a human being having what they need withheld from them. To be classed as being in ‘severe material deprivation’, according to the NPI, someone has to be unable to afford at least four of the following nine items: rent/mortgage/utility bills, the cost of keeping their home adequately warm, unexpected expenses, eating meat or proteins regularly, a holiday, a television set, a washing machine, a car, a telephone.

Almost one in five of working-age disabled people now meet this criterion.¹² That’s three times as many as non-disabled people. For a scandalous number of disabled people in Britain today, to be ‘merely’ poor would be an improvement on their current situation.

A groundbreaking study by Heriot-Watt University for the Joseph Rowntree Foundation in 2018 found that 1.5 million people in Britain are so far below the poverty line that they are officially destitute.¹³ This means that their weekly income is not enough to buy even basic essentials (for a single adult, seventy pounds) – or, grimly, as the researchers put it, an income so low that they can’t meet their core material needs ‘for basic physiological functioning’. Other criteria for being classed as destitute include eating fewer than two meals a day for several days a month and sleeping rough for one or more nights a month. Strikingly, a vast chunk of those designated destitute are disabled: Heriot-Watt University found that almost 650,000 people with physical or mental health problems in the UK are experiencing destitution. The true number is likely to be even higher. The research covered only people who had accessed formal help from crisis services or their local authority.

The research was an update to a 2016 study that first began to pinpoint the number of people in the UK living in extreme poverty after the ‘welfare’ reforms kicked in.¹⁴ Suzanne Fitzpatrick, housing and social policy professor at Heriot-Watt, describes it as the ‘new destitution’: citizens who would previously have managed to avoid absolute destitution with the help of the welfare safety net but who can now easily find themselves in a position where they can’t afford the basic essentials.¹⁵

One of the most damaging myths around poverty has always been that it is somehow inevitable – the idea that while some people enjoy a life of fortune, there will always be others who cannot afford food. But the state of extreme poverty developing for disabled people in this country is not an accident, but rather a direct reflection of the system that’s been created in recent years. The Heriot-Watt research found that the most common causes of destitution were unsustainable debt repayments to public authorities, such as council tax arrears, as council tax changes meant that thousands of the poorest families had to contribute to the payment for the first time. Other factors included high rents and benefit delays, when disabled people are left with no money in their bank account because of benefit backlogs at the DWP.

Notably, in its report on the first study, the Guardian stated that the Heriot-Watt team’s review of recent poverty research found little mention of destitution before 2012 – just as austerity cuts began to come into effect.¹⁶ It’s no coincidence that the only exception prior to 2012 was in relation to asylum seekers: people with restricted entitlement to social security. Through the age of austerity, disabled people were experiencing the type of abandonment typically saved for a group legally excluded from it. Under the regime of ‘all in together’ and ‘difficult decisions’, politicians were ushering in a wave of austerity measures against the very people Britain’s ‘safety net’ was said to protect.

Overall, the 2010 coalition set in motion £28 billion worth of cuts to disabled people’s income,¹⁷ including the introduction of the bedroom tax, cuts to council tax support, the roll-out of the out-of-work sickness benefit ESA, and the tightening of benefit sanction rules. Analysis by the House of Commons Library for Frank Field MP in 2018 found that spending on welfare benefits for the UK’s poorest families will have shrunk by nearly a quarter after a decade of austerity, with some of the most striking cuts hitting disability benefits.¹⁸ To its architects, these changes marked the most ambitious reform of the welfare state for more than sixty years. To its disabled targets, an all-out assault on their lives. As Susan and Bessie can testify, these were not cuts that came singularly, but were experienced as multiple changes at once. When, say, the bedroom tax came in, the odds were it would be hitting people already falling short on rent because they’ve lost their council tax support. In politics, they call it ‘cumulative impact’; in human terms, it’s like being struck over and over again.

Ministers have consistently refused to conduct a full analysis of the changes, instead releasing an evaluation of each policy in isolation. This was the case even after the War on Welfare (WOW) petition – organized by a group of disabled volunteers – gained a debate in the House of Parliament in 2014 to challenge the government. As Claudia Wood from the think tank Demos put it, failing to analyse the cumulative impact of multiple disability cuts at best gives an incomplete picture.¹⁹ At worst, it provides the illusion that these are cuts that are being fairly and evenly spread.

In its place, Demos and disability charity Scope tracked the damage of the cuts on disabled people in 2013, modelling a series of cumulative impact assessments across fifteen disability benefit ‘reforms’. It found that by 2017–18, 3.7 million disabled people would experience a reduction in income.²⁰ Hundreds of thousands of them would be subject to up to six cuts simultaneously, or, as the researchers put it, the changes would hit ‘the same group of disabled people over and over again’.²¹ In cash terms, that translates as a Parkinson’s patient or paraplegic having their income cut by thousands of pounds a year. The Centre for Welfare Reform calculated that, by 2018,²² disabled people would on average be losing over £4,400 per person per annum. For severely disabled people, that goes up to almost £9,000. For many, this loss is even greater: by 2018, around 200,000 will have lost between £15,000 and £18,000 in income through a combination of cuts.

Over the following years, this is set to further take its toll. While the implementation of the first wave of disability cuts is completed, latest measures – ushered in by a succession of Conservative-led governments – will roll out. As of 2017, new recipients of one category of ESA have seen the benefit shrink by almost a third – down to seventy-three pounds a week – with half a million people who are too disabled or sick to work set to lose over £1,500 a year each.²³ Universal Credit – the all-in-one benefit system scheduled to be rolled out to eight million households by 2023 – is due to make 450,000 disabled people financially worse off,²⁴ with some losing as much as £4,000 a year from the changes. At the same time, wider austerity measures, from ongoing benefit freezes to the gutting of local council services – relied on heavily by disabled people – will add to the burden.

The EHRC calculate that by 2022, the combined tax, social security and public spending policies carried out since 2010 will put a particular burden on disabled people. Families with a disabled adult as well as a disabled child will shoulder annual cash losses of just over £6,500 as a result of tax and benefit changes (or about 14 per cent of their net income).²⁵ Grimly, the study found that households of people with the most serious disabilities actually stand to lose the most.

This is palpably the ultimate death knell of the welfare state. Since its inception in late 1940s post-war Britain, the welfare state has produced some great strides for disabled people. Under the increasing growth of the state, the late 1940s to the mid-1960s marked a fundamental shift from the squalor of the workhouses – in which the destitute disabled were abandoned – to the belief that disabled people’s living standards were increasingly a responsibility of the government. This also marked progress in cultural understandings of disability, as disabled people – throughout history said to be cursed, insane or simply lazy – began to be seen, at least in part, as members of society. The return of disabled servicemen motivated the first major state protection for disabled people; the 1944 Disability Employment Act promised sheltered employment and employment quotas for disabled people, while the National Insurance Act (1945) provided unemployment and sick pay for the long-term disabled.

Yet by the 1990s, while race and sex discrimination had long become illegal, disabled people in Britain were still the only group not to have basic rights enshrined in law. There was still no guaranteed access to work, transport or education.

Gains that did occur during this period were not handed down by a benevolent government but were the result of long-term lobbying and grass-roots activists. As I was at school in the summer of 1992, disabled activists with wheelchairs and placards filled the streets, descended en masse to the television headquarters of Telethon ’92 – ITV’s then annual twenty-eight-hour fundraiser. The protesters were not simply challenging what they saw to be the programme’s damaging depiction of disabled people – pitiable and tragic – but a country that, however well intentioned, was willing to grant charity handouts to disabled people, but not equality.

Regular protests followed: from wheelchair users kettled by police outside Westminster, to disabled people handcuffing themselves to buses. By the mid-1990s, disabled campaigners had successfully pushed for the Disability Discrimination Act – for the first time in Britain the law provided disabled citizens with access to the workplace, and with it a wage (employers were required to make ‘reasonable adjustments’ to work and premises). It also saw the launch of the landmark benefit Disability Living Allowance, a benefit introduced to help disabled people pay for the extra costs of mobility and care needs (from taxis to hospital appointments) that had previously pushed us into poverty. It embodied the principle of a universal safety net: no matter how rich or poor, in work or out, every disabled person was eligible to apply for help from the state.

It was fitting, then, that in a period that launched an unprecedented assault on disabled people’s living standards, one of the first major policies of the austerity era was the abolition of DLA. In April 2013, the coalition government began the roll-out of a replacement benefit, Personal Independence Payment (PIP) – in practice launching the mass, mandatory retesting of around 3 million disabled people. The premise was simple: rather than a crucial safety net for millions of disabled citizens, this flagship benefit was being widely and brazenly exploited by swathes of scroungers.

At a time in which Benefit Street–style documentaries filled television screens and ‘benefit fraudsters’ emblazoned tabloid front pages, tellingly, the introduction of PIP came with the promise of tougher ‘points-based’ criteria and an end to the so-called ‘soft touch’ of DLA. As then work and pensions secretary Iain Duncan Smith, put it to the Telegraph in 2012, losing a limb should not automatically entitle people ‘to a payout’.²⁶ That DLA was actually one of the most effectively targeted benefits with an estimated fraud rate of just 0.5 per cent was somehow irrelevant.²⁷

Barely a year into its introduction, Parliament’s public spending watchdog was calling the government’s handling of PIP ‘nothing short of a fiasco’,²⁸ with reports of year-long delays and faulty rejections leaving family carers so poor they risked eviction from rent arrears and cancer patients unable to afford a taxi to hospital. In 2018, the Work and Pensions Select Committee released a report chronicling what it called the ‘untenable human costs’ of the system, highlighting assessments plagued by basic errors, disrespect and ignorance of health problems.²⁹

One submission made to the committee spoke of how a person with Down syndrome was asked by an assessor how they ‘caught’ it. Others with frequent suicidal thoughts described being quizzed over why they hadn’t yet killed themselves. Another disabled woman recalled how her assessor reported that she walked a dog daily, when she can barely walk and does not own a dog. The consequence is the widespread removal of disability support: official government figures show that by December 2017 nearly half of disabled people put through these reassessments ended up having their support either cut or stopped entirely.³⁰

This is not a horrible accident, but rather the architects’ intention. Before testing for PIP began, ministers estimated that 500,000 fewer sick and disabled working-age people would receive benefits due to the abolition of DLA³¹ – about a fifth of the total number receiving the benefit. It was ‘welfare’ reform carved out of a mounting suspicion of disabled people: after all, only if large numbers of disabled people were falsely claiming benefits could a government promise to reduce payments before anyone had even been reassessed.

That poverty is an individual moral failing has been relentlessly argued by those in power for nearly forty years. In this view the working class’s personal characteristics – say, a lack of ambition or effort – rather than an unequal society rigged in favour of the privileged is the root of inequality. It is a narrative that, by extension, neatly permits the state to wash its hands of a duty to assist those struggling under disadvantage.

Thatcher’s infamous ‘no such thing as society’ remark in 1987 was preceded by a line that is a summation of this individualism: ‘I think we’ve been through a period where too many people have been given to understand that if they have a problem, it’s the government’s job to cope with it.’ Over twenty-five years later, as austerity measures got under way, this language began to sharpen in the twenty-first century. When then work and pensions secretary Iain Duncan Smith announced stricter conditions for unemployed jobseekers in 2013, he did it with the promise that it was an end to a ‘something-for-nothing culture’.³²

Even as anti-welfare attitudes festered over decades, disabled people have been traditionally exempt from such criticisms of ‘dependency’. While, say, the figure of the workingclass jobseeker or single mother was said to ‘deserve’ contempt, disabled people – culturally seen as pitiable and passive – were widely viewed as the ‘good’ recipients of state help. This hierarchy of desert is, of course, unhelpful and ultimately unsustainable: not only does it suggest that non-disabled people in poverty are deserving of any misery they endure; it also relies on disabled people conforming to certain prejudices – that we are needy, weak, grateful – in order to be exempt. Damningly, as the post-2010 austerity era kicked in, even this faulty division didn’t last. Disabled people and their social security not only became fair game in the vilification of benefit claimants – they became the prime target. Newspapers and television shows hunted examples of the disabled ‘milking the state’. Politicians talked openly of the ‘bloated disability benefits bill’.

Against a backdrop of disenfranchisement, squeezed wages and a growing anti-‘welfare’ culture, Britain witnessed the emergence of ‘the underserving sick’: where not only is social and economic disadvantage a sign of personal failure, but also being disabled or ill. It was a double hit of individualism: not only could the fact that a person needed social security to stay afloat be blamed on their apparent lack of effort, but, as such, it also legitimized the belief that it’s a cost that the state shouldn’t have to pay. In this climate, disabled people were not equal human beings – or even pitiable and needy – but an underclass, lazy and deceitful. It combined a class hatred and revulsion of disability to uniquely scapegoat the disabled poor.

It was scapegoating that came with consequences. Two years into the coalition government in 2012, a group of disability charities reported a surge in hate crimes against disabled people, with public resentment over supposed mass abuse of the disability benefits system and negative media and government rhetoric said to be a key factor.³³ Charities including Scope, Mencap and the Royal National Institute of Blind People (RNIB) reported that they were now regularly contacted by people who had been taunted on the street about supposedly faking their disability, with others saying the climate is so hostile they avoid going out. ‘When we go out, we get dirty looks in our wheelchairs. They’re thinking, “You can stand. You’re playing the system”,’ Susan tells me, years later. ‘It’s not just the media saying it. It’s people in the street.’

The clever thing about lighting a culture of suspicion is that the state can simultaneously cut support for a marginalized group while claiming it’s helping those who are ‘truly’ in need. From 2010 onwards, Conservative-led governments repeatedly argued that even while disability benefits were being cut, the ‘truly disabled’ would be protected. This was deceptive on two levels. It falsely suggested that the most severely disabled people would keep their social security. And it created the mythical idea that not every disabled person currently gaining support actually needed it. This policy created a hierarchy of disabled people: it was no longer enough to simply be disabled, you had to prove you were ‘disabled enough’.

As I began to meet disabled people impacted by the cuts from 2012, I noticed that more and more disabled people I spoke to wanted to reassure me that they understood that the welfare bill was out of control but that they needed their benefits – that they knew others were faking but that people like them deserved help. It isn’t hard to see why. As the first row of cuts began, the then disability minister Esther McVey bragged to the Mail on Sunday in 2013 that she was going after the ‘bogus’ disabled.³⁴ Four years later, Theresa May’s then policy chief George Freeman was telling BBC 5 Live that disability benefits should go to the ‘really disabled’.³⁵

While disadvantage is held up as a moral failing, in reality its structural causes are never more blatant than with disabled people’s poverty. As Susan and Bessie have found, the barriers to a decent income are frequent and brutal: be it a deficit in an adequate safety net of social security, being too ill to work, or a labour market that discriminates and excludes workers who need adaptations to enable them to earn a wage. But when it comes to a disabled person staying afloat, the issue isn’t simply how little goes in but how much has to go out.

The existence of the ‘poverty premium’ is now well established: that in fact it actually costs more to be poor. For example, having to pay a higher tariff on a pre-pay heating meter instead of a cheaper direct debit. Much less is said about the ‘disability poverty premium’ – the reality that, while being more likely to be on a low income, on a day-today basis, disabled people are faced with extortionate outgoings. Research by Scope in 2018 found that life costs on average £570 more a month in Britain if you’re disabled:³⁶ anything from buying specialist food to paying for taxis because public transport isn’t accessible. For one in five, it’s over £1,000 extra per month. In a climate in which disabled people’s income has been gutted, it means that the most basic human needs, like being warm and dry, are widely becoming too expensive to meet.

Take something as vital as heating. When someone like Susan has to get out of her wheelchair and huddle up in bed with her dog just to keep warm, she is in many ways living in a catch-22. She needs the heating more because she’s disabled – Scope has worked out that some disabled households spend more than twice as much on energy each year than the average family³⁷ – but in a society that is overseeing a new era of disability poverty, her disability means that her income is so low that she’s less able to afford it.

When there isn’t enough money coming in for a human being to live on, there tend to be two options: going without what you need – Susan’s heating and food, Bessie’s oven and furniture – or borrowing to pay for it. In recent years, debt has ballooned in the UK with 8.3 million families in 2017 living with problem debt,³⁸ fuelled by anything from low wages, the increase in the gig economy’s erratic incomes, to council tax charges. It shouldn’t be a surprise that what has hit the general population has hit those with disabilities and illness harder still: disabled people are twice as likely than non-disabled people to have unsecured debt totalling more than half of their household income, according to a Scope survey in 2013.³⁹

This is not only a case of not having a cushion to cope with a sudden financial crisis – say a broken boiler or being made redundant – but of having an income so low that, week in week out, it won’t even cover essential bills. It’s a climate of borrowing money to survive: Scope finds that half of disabled people use credit cards or loans to pay for everyday items like food and clothes.⁴⁰ As Susan in London puts it to me, ‘We’re not talking about getting a loan for a three-piece suite. New curtains. This is the bare necessities.’

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.’