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
