and muscle stiffness. Jimbob had earned a wage since he was twelve – first for his dad at a garage through the 1960s and 1970s and then as an engineer – but, as he put it, ‘when your health packs in, that’s it’.
His two-bed flat in Ayrshire, Scotland, is built with concrete – the sort of home that has a chill running through the walls all year round and bites in the winter – and for years, disability benefits were his only way to heat it. But when the government rolled out ‘tougher’ social security tests in 2013, he had his support taken off him. A hundred pounds a week gone, just like that.
It means that Jimbob now lives in his bedroom. In order to afford to keep the lights on in the flat and have enough gas for the cooker – and with it, hot meals – he only heats one room. When it’s necessary to move – say, to get to the toilet – Jimbob explained he’s developed a ‘15 minute rule’: he puts the heating on in the hallway, then waits a quarter of an hour to move from his bedroom to an unheated room. Otherwise, he can’t physically stand it.
As we talk, Jimbob sat wrapped in a quilt for a double bed. The temperature gauge on his oven said it was ten degrees in his kitchen: barely a few degrees more than the temperature outside. That would be a tough way to live for anyone, but for Jimbob it’s physically punishing. The cold air in the house 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.
