‘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 functioni...