In his Buckinghamshire front room, Mike is working out how many meals he has to skip this week to make sure his wife can afford to eat.
Sandra, 38, has bipolar disorder, on top of multiple physical health problems, and has long been too sick to work. Mike – himself slowly recovering from agoraphobia – is needed at home as her full-time carer. A large turntable setup fills one side of the room. “I was a DJ in another life,” Mike, 40, explains wistfully.
Heavy steroids for severe asthma have damaged Sandra’s bones and she struggles to walk to the bottom of the garden, let alone do a nine to five. Like many disabled families in houses across Britain, the couple have no choice but to rely solely on benefits – or, to put it another way, the kind of income that leaves your kitchen cupboards empty.
The front room is filled with sci-fi film memorabilia, collected at a time when there was still a little money for hobbies; stormtroopers stand in a display case, topped with a lifesize metallic red helmet and large model spacecraft. But these days, Mike can’t escape more earthly concerns.
As well as caring for Sandra full-time, he helps her disabled son, Andy, in nearby supported living and has also started caring for Sandra’s nan, cooking her dinners, keeping her house clean and doing her shopping. “It feels like a lot of caring for £69 [carer’s allowance] a week,” he admits. To get through it all, and make everything add up, Mike typically has just one meal a day, “whatever is yellow-stickered at Morrisons”. Sandra’s pain and breathing would only worsen if she became malnourished, so he prioritises her meals. Some of the few meals they can count on come from a local food pantry – a charitable scheme that sells donated food close to its sell-by date.
Mike and Sandra are not their real names; they speak to me anonymously, for painful reasons that go back a few years. As the 2010 coalition government brought in a wave of welfare reforms in the aftermath of the financial crash, disabled people like Mike and Sandra were recast as “scroungers” by prominent politicians and the rightwing press. The then chancellor, George Osborne, stoked a division between “workers and shirkers”, famously referring in a set-piece party conference speech to shift workers “leaving home in the dark hours of the early morning” while glancing resentfully back “at the closed blinds of their nextdoor neighbour sleeping off a life on benefits”. TV programmes, from Channel 4’s Benefits Street to Channel 5’s Gypsies on Benefits & Proud, played to this mood, normalising the myth that disabled benefits claimants were not people in need but fakers trying their luck. In this climate, suspicion over people’s disabilities and illnesses became the new normal.
Charities warned at the time that this rhetoric fuelled an increase in abuse levelled at disabled people, and Mike and Sandra were two of the many victims. After they were featured in their local paper in a story about the impact of benefit cuts, the couple received abusive comments online, with keyboard warriors declaring them “scroungers” leeching off the state.
Propped up in a chair with her ginger cat sat protectively on the armrest, Sandra admits it has left her with an intense fear that she will be maliciously reported to the Department for Work and Pensions and lose her benefits. “It worries me every day,” she says.
There are plenty of other worries, too, not least mounting energy bills. Disability has always been expensive – whether that’s care bills, specialist food, unavoidable taxi costs or extra heating. Just before the pandemic, the extra costs of being disabled were totted up to an estimated average of £583 a month. The record rise in energy costs in 2022 only added to this weight. Sandra needs extra electricity for her health: a nebuliser, a mobility scooter, air conditioning, a walk-in shower and a soon-to-be-installed stairlift.
The couple are going out less and less, because they can’t pay the electric bill for their Motability car. Sandra rarely uses her scooter now – they haven’t got the money to charge it. With her brown hair cropped short, she admits to me she has also started showering less. “The cost is just too much.”
I speak to her again the day after a June heatwave and she has been struggling to breathe. The air conditioning would normally ease her asthma in the heat, but it is now too expensive to put on. Nowadays, she says, breathing “is just a luxury we can’t afford”.
Spend an hour with Mike and Sandra and phrases like “the squeeze on living standards” and “cost of living” that have dominated politics in recent years sound increasingly like dodgy euphemisms, a muted Westminster-built terminology that can’t come close to describing what is actually happening in Britain today. As rising energy and food bills put the greatest pressure on Britons in decades, this couple have found themselves without enough income to meet the most basic human needs: keeping warm, properly fed and with medical equipment running. For people like Mike and Sandra, this isn’t a cost-of-living crisis; this is a cost-of-staying-alive crisis.
It would be easy to hear a story like theirs and dismiss it as a one-off – a sad but ultimately rare example of extreme situations. And yet the truth is that this is what is happening to millions of disabled people in Britain today: grinding penury is being normalised. The scale of hardship is astonishing. More than 40% of those below the official poverty line – 6.1 million people in all – are either disabled or living with a disabled person.
To make matters worse, disability benefits such as personal independence payments (PIP) are counted as “spare income” when in practice, such cash has to pay for the extra costs of disability (anything from care costs to wheelchair parts) and rarely fully covers them. Stripping these benefits out, the Joseph Rowntree Foundation has shown that as of 2019-20, the risk of being in poverty for disabled working-age adults is more than twice as high (at 38%) as the risk for their non-disabled counterparts (17%).
Disabled people aren’t just more likely to be below the breadline – they’re more likely to be far below it. Analysing data from just before the pandemic, the JRF found that 15% of those in families with a disabled member were in “deep poverty”, compared with 9% of those in families without one. For single-adult disabled families, without the cushion of a partner’s income, this deep poverty figure rises to more than 20%. The impact of this is brutal: among this “single disabled” group, nearly a fifth reported being severely food insecure, or unable to heat their home, or falling behind with basic household bills due to lack of money. Compared with those in homes where no one is disabled, that means they are four times as likely to be falling into arrears, six times as likely to be living in a cold home and nine times as likely to be going hungry.
It’s worth summing up what this really means: in one of the richest societies that has ever lived, a fifth of single disabled people are effectively destitute. And this was before the 2021 energy shock, which seems bound to worsen the figures. Survey after survey confirms this. The Office for National Statistics reported that as of September 2022, more than half (55%) of disabled people were finding it difficult to afford their energy bills, while more than a third (36%) were struggling to pay their rent or mortgage, in both cases far higher proportions than for non-disabled people. A large Savanta survey of working-age disabled people, carried out in February 2022, suggested that about 600,000 disabled people had just £10 or less per week left after taxes and housing to pay for food, heating and everything else.
In a civilised society, this is where the welfare state would step in – but in recent years, Britain has reduced its safety net to a set of gaping holes. Through a mixture of cuts, squeezes and Kafkaesque tests, it has refashioned a system created to help people in need into an instrument of punishment. Even those with severe disability or serious illness are frequently threatened with having their benefits cut if they don’t comply with work-related “requirements”. In 2019, Prof Philip Alston, then the UN’s special rapporteur on extreme poverty and human rights, concluded in his damning report on the UK that disabled people were “some of the hardest hit by austerity measures”.
For Mike and Sandra, it was due to a series of welfare reforms during these years that their real financial problems started. In 2017, like hundreds of thousands of other disabled people, Mike was reassessed for his out-of-work sickness benefit, employment and support allowance, and declared “fit for work”. Notably, most of the similar decisions that have been appealed – and they are many – have been overturned. Like many others, though, Mike didn’t feel able to take on the DWP. Scared that the system dismissed mental health problems and aware that backlogs meant it could take a year to even get a hearing, he chose not to appeal.
Mike had slowly been making gains with his agoraphobia – on a good day, he could go to the supermarket without a panic attack – but holding down a job was a herculean task. “Being trapped behind a till or something would have been impossible for me.” He couldn’t even use public transport to get there, he explains. “A bit of support might have helped me into work at that time, but they just decided I was fine and that was that.”
Back then, Sandra had limited disability benefits of her own and the two of them relied almost solely on Mike’s social security to get by. With his benefits stopped, the couple had very little – just Sandra’s low-rate PIP – to survive on for six months. “Food banks were a godsend,” Mike says of that time, “but it’s never enough food to actually live on. We would have three pies and a few tins of veg for a week.”
Once again, Mike’s experience – in this case, resorting to charity to keep himself and his wife fed – is all too typical. The records of the country’s largest network of food banks show that more than six in 10 of the working-age people referred to them in early 2020 had a disability. The Trussell Trust adds that this is more than three times the rate of food bank use in the general working population.
When the state stopped supporting him, Mike’s mental health plummeted, along with their finances. Things he had painstakingly learned to cope with became hard again: going out shopping, dealing with Sandra’s hospital appointments, even opening letters. “I hit rock bottom,” he says. “I struggled to get out of my room and slept almost constantly. I barely ate. It took me months to get back to where I was before being found ‘fit for work’.”
It was only a few years earlier that the bedroom tax had forced the couple out of the three-bed home that Sandra had lived in for four years. Officially a charge for “underoccupancy”, this was yet another austerity cutback that disproportionately hit disabled people – and yet another case where Mike and Sandra’s story is only too typical. In the past, I have interviewed dozens of disabled families who have relied on extra space for anything from oxygen cylinders and specialist beds to a room for carers to sleep in, but who nonetheless had their benefits cut due to having a supposedly spare bedroom.
Mike and Sandra soon got into rent arrears. In the end, the council cleared the debt, but it was not enough: the couple were forced to downsize to a one-bed house. When Sandra’s eldest son, Sam, then 13, moved back there from his dad’s less than a year later, the family found themselves crammed in with a teenage boy, medical equipment and one bed to sleep in. Eventually, the council moved them back up the social housing list for a two-bed house, but this required more upheaval – and a painful wait. For three years, Mike and Sandra slept on the living room floor. That would be hard for anyone, but when you have breathing problems and chronic pain, it’s agony.
These are the sort of deprivations we have been asking ever more disabled Britons to live with over the past decade. Much of non-disabled Britain is disturbed and shocked by the unprecedented hardships of the current squeeze. But for the likes of Mike and Sandra, the terrors of the latest “cost-of-living crisis” are nothing new. They are more of the same.
Sandra tells me that the housing saga led to her health significantly deteriorating. At one point, she had an asthma attack that made her heart stop. “I was in intensive care for a few days after that,” she says. “Luckily,” she adds with a learned stoicism, “there was no lasting damage to my brain.”
• This is an edited extract from Broke, edited by Tom Clark, which will be published by Biteback on 30 March (£14.99). To support the Guardian and the Observer buy a copy at guardianbookshop.com. Delivery charges may apply
