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