If you want a symbol of this country’s shredded safety net, look no further than Mark in Bristol.
For the past 30 years Mark, who has cerebral palsy, has lived in his accessible bungalow with the support of personal assistants. That care package has enabled the 58-year-old to build a life at the heart of his community: from being a governor at the local school and training as a social worker, to holding a season ticket for his beloved Bristol City football club, “It’s more despair than joy,” he smiles.
From next week, that life could start to disappear. As the latest local authority to strain under growing social care costs and dwindling resources – the city faces a budget hole of £17m next year, expected to rise to £32m in the years to come – Bristol council is proposing a “cost-effective” solution: if a disabled person’s in-home care is not considered “best value”, they could be told to live in a care home instead. It is the stuff of a domestic horror movie: a bureaucrat deems your life too expensive, and you’re forced to pack your bags and spend the rest of your days in an institution.
Sitting in his wheelchair, his computer screen on the desk, Mark is not going down without a fight. He and a dozen other disabled people in the area are campaigning against the policy: a weekly Zoom meeting to coordinate the fightback from their front rooms. The team has already had one win – pressure meant the council extended the public consultation to the end of January – but with only days left to get the word out, Mark is running out of time. “I’m worried the people who’re affected by it don’t even know,” he says.
When we meet, Mark speaks and then asks his PA to repeat his words to me. Since his parents died, it’s only Mark’s long-term PAs who can understand his speech. “Not even my closest friends can fully,” he says. In a care home without his own staff, he would effectively be trapped alive: he would talk, and no one there would be able to understand him.
Mark is keen to put those he’s campaigning for first – “It’s not about me,” he says – but admits thoughts of his own future are taking their toll. “I feel terrified what could happen to me.”
At its heart, this is a story of savage public funding cuts and growing need, of what happens when more than a decade of Westminster austerity collides with already bruised communities and squeezed local services. But it is also a story of who exactly in society matters: who gets to have a decent life, with a safe home and loving family, and who doesn’t.
Back in the 1970s and 80s, disabled people in Britain were routinely put in out-of-town institutions – or “warehoused”, as it was known – as a means to reduce the costs on the state. The term “warehoused” conjures up the chilling reality: human beings stored under one roof without autonomy, control or dignity.
It would be comforting to believe this treatment of disabled people was firmly in the past or that the dark cloud currently hanging over Bristol is a one-off that will not be repeated. Neither is true.
NHS England (which, alongside councils, is responsible for home care) has already introduced upper limits on the amount spent on supporting disabled people to live in their homes – a move the Equality and Human Rights Commission warned in 2017 would see adults “interned” in care homes in a “potential breach of their human rights”.
Others have “chosen” to go into residential care after their 24/7 care at home was reduced to dangerous levels or they could no longer pay the extortionate social care charges. I’ve spoken to disabled people as young as 30 who have been placed in nursing homes; millennials forced to live with elderly dementia patients old enough to be their grandparents.
It is not as if institutional care even guarantees safety. Just as the scandal of people with learning disabilities and autism being housed in hospital units for years has carried on with little fuss, the managed decline of the care home industry – at its worst, leaving residents with dirty rooms and without proper food and medicine – is widely accepted.
And yet, to most of us, even the best-run facilities would feel a humiliating way to live out our best years against our will. As Mark puts it to me: “I’d have no control over when I’d go to bed, when I’d eat or work.” Brutally, he tells me some of his fellow campaigners fear they’ll be separated from their husbands and wives. “People assume disabled people don’t have intimate relationships,” he says.
When I asked Bristol city council about the policy, it said it was “co-developed with disability advocacy groups and people who draw on care, as well as third sector organisations”, and will “consider all feedback received during the consultation period before any decisions are made”. It’s cold comfort for those at risk, but the council is not the villain of this piece. It is simply another cash-starved council facing terrible choices while being charged with providing a service for which demand is increasingly impossible to meet.
With nearly one in five council leaders in England now warning they are likely to declare bankruptcy in the next 15 months, and a governing Conservative party already checked out, such unpalatable choices are only going to spread.
The risk, as ever, is that what starts off shocking soon enough becomes the new normal. We should all be wary of the ease with which we convince ourselves that rationing public services is perfectly OK as long as it’s really necessary. When “tough economic times” hit, it is remarkable how quickly the unthinkable becomes permissible. At least when it is happening to other people.
In his bungalow, Mark is finding escapism by binge-watching Mr Bates vs The Post Office – a drama about another ordinary campaigner who took on injustice and won. “I can watch what TV I like,” he reflects. “I couldn’t do that in a home.”
These are the simple parts of life we all take for granted: sleeping in our own bed, choosing what’s for tea or which box set to watch. Mark is all too aware of how basic rights suddenly come under threat. “If it can happen in Bristol,” he says, “it can happen anywhere.”
Frances Ryan is a Guardian columnist
