Nowadays, Alex can go to the toilet without crawling on hands and knees. The 44-year-old – who has multiple complex disabilities and mental health problems – is in many ways living proof of beating the system. After four years of living in inaccessible social housing, Alex has a bit of dignity and safety. But I can’t help but think for a so-called civilised 21st century nation, there isn’t much to celebrate. In Alex’s words: “It feels like I’m still not living. Still trapped, made sicker by austerity.”
Alex’s story starts seven months ago in a cramped top-floor flat in Islington, north London. It’s the sort of story that could be happening to your neighbour right now – and embodies the pointless cruelty meted out in recent years by politicians to citizens who dare to be disabled.
A spinal and head injury, degenerative hands and feet and chronic fatigue mean Alex needs both a wheelchair and a hoist to move safely around their home. (Alex wishes to be referred to as “they”.) But the matchbox size of the flat meant that to move from one room to the next, Alex had to literally crawl: slowly pulling along the carpet, legs dragged to one side.
To be able to leave the flat, it was no less brutal: Alex balanced on crutches to get down the two flights of stairs, feet visibly twisting with each step and grabbing an inhaler out of a bag for each shortened breath. Outside, at the bottom of another seven concrete steps sat Alex’s wheelchair, chained up on the street. With no lift, Alex had no way to get it into the flat.
In the many times Alex had to complete this obstacle course, they have been found by neighbours unconscious on the stairs more than once. Or with blood dripping from a head wound.
That may be the ultimate symbol of a system that’s abandoned disabled people – a wheelchair user left on the floor, bleeding, with only the kindness of strangers to help them up.
The impact of inaccessible social housing is grotesque, but the truth in an era of austerity is that, to use Alex’s words, it’s every area of life that’s “infected with cuts”. Alex has had paralysis down the left side of the body since March – like being stuck in concrete – but as the social care budget is gutted nationally, Alex is left alone for the equivalent of over half the week. (“My carer doesn’t even get enough time to shower me.”)
Even medicine is a luxury. Since the government started charging for some prescriptions, Alex has simply had to go without them. The same goes for incontinence pads. The council stopped providing pads for anyone but elderly residents two years ago, forcing Alex to spend day and night in a soiled pair. To afford some dignity, Alex began to live off large bottles of milk to try to find the £80 a month for pads. Two years in, they had lost 48kg – triggering an old eating disorder.
I first wrote about what was happening to Alex back in May as my colleague John Domokos filmed the conditions in the flat, in our series investigating the impact of the Conservatives’ disability policies. It exposed the new reality for disabled people in Britain after seven years of government cuts: skipping meals to pay for incontinence pads, being robbed of their benefits, or left to lie on the floor for hours with dislocated joints when social care cuts mean there’s no carer to help them.
When we first spoke, Alex had battled for months for a safe home, but as Islington council put it at the time, like elsewhere “Islington has a severe housing shortage, and finding suitable, ground-floor, wheelchair-accessible accommodation” near Alex’s medical team was “challenging”. Even when the council found a ground-floor flat for Alex in the spring, after three months the adaptations still hadn’t been completed for them to move in.
But a week after the Guardian’s piece, Alex was told the flat would be ready in a month. In the same week, as if by magic, the council agreed to provide half of Alex’s pads.
In July Alex finally moved into the new flat and the result has been “life-changing”. After years of having to crawl, they can now move between bedroom kitchen, bathroom and front room in a wheelchair. Instead of two flights of steps, Alex can go out of the flat safely all on one level. The sort of things many of us take for granted are suddenly possible – even going to a local cafe and sharing a bacon roll with a carer.
“I don’t have to face those stairs any more. I’m not crawling in my flat. I don’t have to crawl to the toilet. I’m not falling 10-15 times a week,” Alex says. “I can’t tell you what that means.”
This is some good news at a time in politics when it feels as if it’s really needed. But the more I think of it, the more I’m angry at what’s really a stark vision of a failing welfare state: where it takes the weight of a national newspaper and months of fighting from your bed for a disabled person to have the hope of help. How could a human being in one of the wealthiest nations on earth have been left to live like this in the first place?
Even when Alex moved in to the new flat, the council still hadn’t put in a video intercom, non-fluorescent lighting and anti-slip flooring – seemingly minor things that for Alex mean vomiting, debilitating migraines and losing consciousness. Islington says it is “doing everything we can to help tackle these issues” but “at a time of ongoing government cuts to council funding, this is becoming increasingly difficult”.
The only reason Alex could afford the right adaptations is because Guardian readers started a donations fund in response to the story. (To date, the video of Alex has had 6.8m views.) After buying some medication and incontinence pads, Alex chose to donate the rest of the money to disability rights group Disabled People Against Cuts, to help other disabled people enduring cuts. “I know others are worse off than me.”
It’s the epitome of decency – and a sentiment ministers sitting comfortably in Westminster would do well to share this Christmas. After all, the Conservatives end 2017 having taken thousands of pounds in income from each of around 200,000 disabled people; having left one million without help to dress, eat, or go outside after gutting the social care system; and having overseen a housing crisis that’s left wheelchair users such as Alex stuck in their own personal prisons.
As the new year approaches, Alex can’t help but think of the battles still ahead. Sitting in the new flat, Alex has calculated that universal credit will see their benefits cut by up to £80 a week. At the same time, like thousands of other disabled people, Alex will have to go through an assessment for personal independence payment – something that’s simply ”terrifying”.
“I thought moving in, this fight was over,” Alex tells me. “But because of austerity, you have to fight for everything.”