Crippled. Frances Ryan
aggravates his chest and makes his already painful joints throb, while his other disabilities mean he does not have the strength to keep moving to warm his body up. I asked Jimbob what it’s like when he gets cold and his answer was simple: ‘You feel like you’re dying.’
He coughed as we talked; there were heavy-duty steroids in the flat from a recent bout of breathing problems. On the toughest days, when the cold goes through his lungs and bones, Jimbob puts his coat on, takes his dog and gets into his old Jeep. The car, he explained, has under-seat heating and he and the dog – ‘my trusty companion’ – sit there together. Last winter, Jimbob worked out he might be able to survive without heating in the flat if only he could get himself in a confined space. That same day, he looked out some old camping equipment and pitched it next to his sofa. There he was, huddled up inside a tent in the middle of the living room.
As I listened to Jimbob, there was a feeling that stood out perhaps more than any other. You might call it injustice; or, put another way, the feeling of someone being lied to. Before he became disabled, Jimbob believed he grew up under a welfare state that offered him a promise: if the time came when he really needed it, a safety net would be there to catch him. Not a fortune but enough to eat regular meals and put the heating on in winter. ‘I used to feel as long as you did your bit, worked hard, there’d be a system [to help you],’ he told me. ‘Now, it feels like the system’s after you. Like you’re a scrounger.’
This book is, at its heart, a story about Britain’s Jimbobs. What it shows is some of the reality of disabled people’s existence that in recent years has been airbrushed out by a toxic mix of vilification and false promises. Through the voices of those affected, this book will show that the very safety net said to protect people in times of sickness and disability has, in fact, worked to impoverish millions and deprived hundreds of thousands of even the most basic dignities of everyday life. The scale of this is nothing less than a national scandal.
In 2018, a report by the government’s equality watchdog, the Equality and Human Rights Commission (EHRC), found that one in five British people were suffering erosion of their rights because they are disabled, citing ‘deeply concerning’ evidence that – contrary to government claims – conditions for disabled Britons are actually getting worse.9 Only a few months later, the EHRC released a groundbreaking report into the ‘alarming backward steps’ Britain had taken in its quest to achieve a more equal society in recent years, citing disabled people – far from having been protected – as one of the worst-affected groups.10
But this book not only seeks to serve as a corrective to the lie that the disabled – or ‘society’s most vulnerable’ – will always be protected. It seeks to challenge the notion of vulnerability itself. One of the most pervasive and damaging myths in modern liberal societies is the idea that disabled people are ‘the most vulnerable’. This is a by-product of a culture that still widely associates disability with tragedy and perpetuates an individual analysis for something that is fundamentally structural. This attitude is now so prevalent that even people on the left use this language, where well-meaning non-disabled people profess concern over how austerity is hurting ‘the most vulnerable’.
Disabled people, truth be told, do not need to be vulnerable. Contrary to the cultural myths surrounding disability, it is not inevitable for people with disabilities to be afraid, desperate or isolated. Vulnerability comes when politicians choose to pull the support disabled people need in order to live dignified, fulfilling, independent lives – knowing full well the misery it will cause.
The ill-treatment of disabled people is set to be at the heart of British politics for years to come. While Theresa May announced in September 2018 that ‘austerity is over’,11 billions of pounds of cuts will continue to come into force until the 2020s, while a deepening social care crisis will further disproportionately hurt people with disabilities or illnesses. Brexit, meanwhile, will test not only attitudes towards difference but what resources even a left-leaning government will be free to plug into services for disabled people.
It would be easy to believe that all of this has very little to do with you. Many of you reading this book will not be disabled. Perhaps the word ‘disability’ inspires your heartfelt concern yet still somehow seems something that happens to other people. But the belief that disability is separate from how the rest of society lives is half the battle, that comforting idea that disability could never happen to you, and that disabled people – different, ‘other’ – ultimately doesn’t quite have something to do with how ‘normal’ people live.
‘Othering’ (even the benevolent sort) is an illusion. Disability touches many of our lives: an estimated 12 million people in Britain have some sort of disability, both visible and invisible. Millions more are unpaid carers for a loved one who’s disabled or chronically ill. If we are not carers or disabled ourselves now, many of us will be at some point. But more than that, the point is, surely, that the human divide is not as clear-cut as it often appears to be: disabled people hold the same hopes, fears and values as anyone else.
This book is a rallying cry against the shrinking of the welfare state and the hardship the austerity agenda is causing disabled people. But as much, it is attitudes it hopes to challenge. After all, the dismantling of Britain’s safety net for disabled people did not come out of thin air. It is a product of a society that, despite its protestations, has still not come to grips with disability.
The first step to change is by admitting the problem.
‘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