The tragic fire remains a symbol of what has gone wrong in housing for poor people, despite my warnings to the UK government not to ignore human rights
In 2013 my predecessor, Raquel Rolnik, the UN-appointed special rapporteur on the right to housing, visited the UK and warned that the government’s roll-back on investment in social housing and its emphasis instead on investment in the private rental market was having a deleterious effect on the availability and adequacy of social housing stock.
Last April, alongside several colleagues, I communicated human rights concerns(pdf) to the UK government about the impact of austerity measures on housing standards. And after that a UN committee of independent human rights experts expressed similar concerns and recommendedthat the government “take corrective measures to address bad housing or sub-standard housing conditions …”. We were all echoing the voices of thousands of residents who had been systematically and repeatedly raising their concerns with their councils and the government.
Perhaps in the wake of the Grenfell tragedy that killed at least 79 people – a devastating illustration of the impact of substandard housing on the lives of poor people – local councils and central government will begin to recognise that international human rights standards regarding adequate housing are not hogwash, but are in place precisely to preserve human life.
From my vantage point, Grenfell Tower is also emblematic of a global phenomenon where rich and poor live side by side on starkly unequal terms and where housing is rarely viewed as a right, but instead promoted as a commodity.
The management of Grenfell Tower was handed over to the private sector. Kensington Chelsea Tenant Management Organisation (KCTMO) is responsible for managing the tower block as well as 10,000 other units [pdf] and it is paid handsomely to do so. Apparently, KCTMO’s responsibilities did not include heeding the concerns of the UN, let alone those of the tenant association, which for more than four years had expressed distress about fire safety in the building.
As horrific and singular as the Grenfell Tower firewas, it represents the new world order. The idea of housing as a social good for which governments are responsible has largely been abandoned. There is an ever-growing list of cities where governments prop up the financialisation of residential real estate, promoting the idea that housing is a place to safely park huge amounts of capital and grow wealth without any investment in local communities. This is despite the fact that it pushes up the cost of housing and drives out low-income residents in cities around the world, including Hong Kong, Singapore, San Francisco, New York, Sydney, Melbourne and Vancouver.
Allowing big corporations to manage the needs of tenants is also not unique to Grenfell Tower. The Blackstone Group – the world’s largest real estate private equity firm – spent $10bn to purchase repossessed properties in the US after the 2008 financial crisis, and emerged as the largest rental landlord in the country. Tenants in their units complain that their needs and concerns regarding the adequacy of their housing fall on deaf ears, with management companies accountable to investors rather than to them.
If failing to uphold human rights was, at least in part, the cause of the Grenfell Tower disaster, then surely upholding internationally recognised human rights is the way forward. Only a human rights approach lays out universal standards of what constitutes “adequate” housing, such as protecting against physical threats like fire and floods.
Only a human rights approach lays out what’s required after a disaster like Grenfell – that tenants must be provided immediate alternate accommodation in their existing community. Only a human rights approach is crystal clear that it is governments that are responsible to low-income and marginalised populations, and that this will require regulating tenant management companies and other third parties to ensure they are not jeopardising the state’s human rights obligations.
Grenfell Tower will remain a symbol of what has gone wrong in housing for poor people. It’s a horrible human tragedy, but it should also be remembered as a human rights tragedy.
The victims of Grenfell Tower didn’t just die. Austerity, outsourcing and deregulation killed them – just as Victorian Manchester killed the poor then
Lower your gaze from the blackened husk of Grenfell Tower and you see the flowers and the signs decorating the streets. Many are photocopied pleas to help find the missing: 12-year-old Jessica, baby Amaya. Steve. Moses. Nestled among them are the others: scribbles and boards and A4 sheets reading Cuts Cost Lives and Corporate Murder, and People’s Lives Don’t Matter Under Capitalism.
This, Theresa May, is what a people’s public inquiry looks like. The sign-writers and passersby talking in the streets around Grenfell have grasped a truth that cabinet ministers are still fumbling towards: whatever and whoever a judge finds at fault – this procedure or that subcontractor – the true causes of the failures go far wider. They lie in the way Britain is run.
While in Victorian Manchester, Friedrich Engels struggled to name the crime visited on children whose limbs were mangled by factory machines, or whose parents were killed in unsafe homes. Murder and manslaughter were committed by individuals, but these atrocities were something else: what he called social murder. “When society places hundreds of proletarians in such a position that they inevitably meet a too early and an unnatural death, one which is quite as much a death by violence as that by the sword or bullet; its deed is murder just as surely as the deed of the single individual,” he wrote in 1845, in The Condition of the Working Class in England.
Over 170 years later, Britain remains a country that murders its poor. When four separate government ministers are warned that Grenfell and other high rises are a serious fire risk, then an inferno isn’t unfortunate. It is inevitable. Those dozens of Grenfell residents didn’t die: they were killed. What happened last week wasn’t a “terrible tragedy” or some other studio-sofa platitude: it was social murder.
By all means, let’s wait for a judge to confirm the reports that the tower was covered in banned cladding, and that the 79 men, women and children confirmed to have died in the fire (at the time of writing) possibly did so for a grand saving of £2 a square metre.
But we can draw our own conclusions about whether well-heeled renters in a luxury tower would have received the contempt dished out to Grenfell’s council tenants after they published detailed reports on their homes being firetraps. Those local politicians who gave council taxpayers a sizeable rebate even while starving local services of funds have evidently chosen whose side they are on – and it’s not that of the families who have been made homeless.
The 19th-century industrialists who resisted the factories acts would recognise a kindred spirit in Boris Johnson, who has claimed “health and safety fears are making Britain a safe place for extremely stupid people”. The next TV interviewer to face the foreign secretary should ask him either to repeat those words or apologise for them. But the deadliest rationale came from David Cameron, who as PM wrote off the legal protections given to workers and consumers as “an albatross around the neck of British businesses”. I cannot remember a more brazen recent statement of profits before people.
To look after its properties, the council created the largest management organisation of its type in England – unfeasibly large, it turned out, and unaccountable to its own tenants. This was the £11m-a-year body that handed the £10m refurbishment contract to the builder Rydon. The best that can be said of such outsourcing – whether in managing flats or running council departments – is that the public ends up paying more for a service that’s worse. It allows big companies to profiteer from basic public needs, and to evade democratic control.
Spectacular examples of social violence, such as Grenfell, are thankfully rare. They usually occur out of public sight. This decade of austerity has been a decade of social violence: of people losing their cash income for not being disabled enough, of families turfed out of their homes for having more than two kids or a bedroom the state deems surplus to requirements. These are tales of private misery, of a person or a household behind a closed door plunged into stress, anxiety, depression or worse.
Last year I met a Parkinson’s disease sufferer, Paul Chapman, who after being put through a fitness-to-work assessment and having most of his benefits cut told his wife, Lisa: “I’ll clear off and I won’t take my tablets or my insulin. And it’ll be over then. I won’t be here.”
Others have told me of friends who didn’t only express such impulses, they acted on them. Their last days will have been soundtracked by a government deriding “skivers”. Years of public bullying and official harassment of the poor have funded the £93bn of tax breaks and bungs chucked at big corporations, property developers and outsourcing firms.
Austerity is at the heart of the Grenfell story. Think of the firefighters, who have seen stations closed and colleagues laid off by May, when she was home secretary. Consider the nurses treating the dying and the maimed, who will be on lower pay now than they were in 2009.
Most of all, remember this: the cuts made since 2010 were the poor picking up the tab for the venality of rich bankers. The two are jammed up next to each other in Kensington and Chelsea, one of the richest and most unequal patches of land in the world. Just minutes away from Grenfell, you can find a house for sale at £30m (albeit “in need of full modernisation”). The residents of the investment-starved Tower died last week did so partly because of the greed of their neighbours.
Spending cuts, deregulation, outsourcing: between them they have turned a state supposedly there to protect and support citizens into a machine to make money for the rich while punishing the poor. It’s never described like that, of course. Class warfare is passed off as book-keeping. Accountability is tossed aside for “commercial confidentiality”, while profiteering is dressed up as economic dynamism. One courtesy we should pay the victims of Grenfell is to drop the glossy-brochure euphemisms. Let’s get clear what happened to them: an act of social murder, straight out of Victorian times.
It’s shameful that survivors of the Grenfell Tower fire were left to worry that their benefits could be taken away. But the DWP’s cruel reputation precedes it
If you’ve followed the aftermath of the Grenfell Tower fire on social media, one disturbing revelation has stood out: the fear that victims could have their benefits sanctioned because they were not able to get to the jobcentre to sign on.
Incredibly, representatives of local residents who approached local Jobcentre Plus officials and Department for Work and Pensions (DWP) staff in North Kensington report being told that it could “not be guaranteed” that people caught up in the fire and its aftermath would not be penalised if they were unable to sign on.
A local resident who said he was acting on behalf of the community claimed that the DWP only later moved to clarify the position because of pressure on social media. “Once it became clear that there was media attention focused on them, they have finally done the right thing,” he said. “Why should it take shame for them to act? Where is their humanity?”
As anyone who has been put through the Tories’ benefit system knows, “humanity” and the DWP are two things that do not tend to go together.
This is the context in which the concerns of Grenfell residents should be seen. It does not seem beyond the realm of possibility that a benefits system that punishes people for missing an appointment because they are having a heart attack or attending their brother’s funeral would worry about doing the same to traumatised people who had nearly died.
The fact it was ever possible that the Grenfell fire victims would be punished for being unable to meet jobcentre rules is a damning insight into the culture of fear the DWP engenders. But it’s also a sign of the insecurity on the ground in Grenfell in the days after the blaze: local residents desperately piecing together bits of information themselves because the authorities that should have been helping were failing to do it for them.
For many Grenfell residents – ignored by the council and avoided by Theresa May– it is not unusual for a government department to abandon them. It’s shameful that any of them were left to worry that, having lost their homes, their benefits could be taken too. Some dignity and reassurance is the least the Grenfell victims are owed.
The UK has some of the highest levels of hunger and deprivation among the world’s richest nations, according to a wide-ranging United Nations assessment of child health and wellbeing.
The Unicef report ranks 41 high-income countries against 25 indicators tracking progress against internationally agreed goals to end child poverty and hunger, promote health, ensure quality education, and reduce inequality.
It concludes that the majority of rich countries are going backwards on inequality indicators as gaps between rich and poor widen, with many performing poorly in key areas of child health, notably as a consequence of rising obesity rates.
“Income inequality is growing, adolescents’ mental health is worsening, and child obesity is growing,” the report states.
One in three UK children are in what Unicef calls “multi-dimensional poverty” – which measures deprivation in a number of areas linked to children’s rights including housing, clothing, nutrition and access to social and leisure activities.
Sarah Cook, the director of Unicef Innocenti, which carried out the assessment, said the report was a “wake-up call” to governments that even in high-income countries progress does not benefit all children.
“Higher incomes do not automatically lead to improved outcomes for all children, and may indeed deepen inequalities. Governments in all countries need to take action to ensure the gaps are reduced and progress is made to reach the sustainable development goals for children.”
However, the report acknowledges that there had been positive progress in many areas, and the vast majority of rich countries have witnesses declines in neonatal deaths, adolescent suicide, teenage births and child homicide rates.
Food insecurity rates ranged from 1% in Japan to 20% in the US and 35% in Mexico. “Although the general availability of food is not a problem in any of these countries, too many families struggle to satisfy their children’s nutritional needs,” the report says.
One in seven children aged 11-15 in rich countries are obese or overweight, the report says. This varies from Denmark, where already low rates have fallen in recent years to 8%, to Canada and Malta, where one in four children in this age group are considered overweight.
The report finds that across rich countries an average one in five children live in relative income poverty on a scale that runs from Denmark (9%) to Germany (15%), the UK (20%) and the US (29%) through to Romania (39%). Using the multidimensional child poverty tool, there were similarly wide variations from Switzerland (11% ) to the UK (34%) and Romania (85%).
The UK ranks 16th out of 41 on tackling poverty, 34th on food insecurity, 15th on health and wellbeing, 31st on economic growth, and sixth on reducing inequalities.
The highest ranked countries across all indicators were Norway, Germany, Denmark and Sweden, Finland, Iceland, Switzerland, South Korea and the Netherlands. The lowest were Chile, Bulgaria, Romania, Mexico and the US.
“The presence of countries such as New Zealand and the United States in the bottom reaches of this table is proof that high national income alone is no guarantee of a good record in sustaining child well-being,” the report states.
The report is the first attempt to assess the status of children in 41 high-income countries in relation to the UN sustainable development goals agreed last year to end poverty, protect the planet and ensure prosperity for all.
I have a permanent disability. Even after the election, the Conservative government is forcing people like me through this broken system
‘So Rob, do you have friends?” I’m wondering what on earth Sharon (not her real name) thinks she might be looking at as she gazes at me. She’s had around seven days of training before this and now, in my living room, I wonder what conclusions she feels she can draw from asking this question.
This is the reality of an assessment for personal independence payment, or Pip as it’s known. Despite last week’s election surprise, we still have a Conservative government so millions of British people with permanent, unchanging disabilities will be put through this astronomically expensive and humiliating test to see if they can be thrown off benefits.
If you’re wondering why I’m part of all this, I have ocular albinism and nystagmus, meaning I have exceptionally limited vision.
At the age of 38, I’ve been claiming disability living allowance since I was a teenager. It works out at £5.73 a day, which goes towards paying for taxis, screen magnification software, magnifying glasses and a variety of other utterly prosaic things that enable me to lead as “normal” a life as possible. And because of my visual impairment, paired with anxiety that requires daily medication, it’s been decided by the Department for Work and Pensions that I must have a home visit to assess my disability in all its permanent, unchanging glory to see if I qualify for the payments that are slowly replacing DLA.
Sharon works for Atos, one of the two profit-making companies (Capita being the other) that have been given half a billion pounds by the government to “assess” people like me with disabilities where there is zero chance of any improvement in our lifetime.
Well, you may be thinking, at least the assessor will be an expert in the relevant field of disability, who can perhaps shed some insight on the process with direct relation to my specific condition?“Do you wear glasses, Rob?” is the next question of around 35 that are fired at me over the course of a gruelling hour. Asking an albino if he or she wears glasses is like asking an amputee when their leg is going to grow back. Albinism is a genetic condition that affects the nerves and the brain. Sharon’s line of questioning has the kind of expertise you might expect if you asked Joey Essex to lead the Brexit negotiations.
Let’s clarify this: people’s benefits, mobility vehicles, home help and other essential lifelines are being decided upon by a team consisting mostly of nurses and occupational therapists like Sharon who have had seven days of training and are still doing their proper job for half the week.
And so the asininity continues: “Do you take showers?” “Do you have any leisure activities?” “What do you eat?” The humiliation and intrusion are absolute and total. The additional sheer irrelevance of these questions relating to my own disability renders me silently apoplectic.
Saturday 10 June 2017 08.00 BSTLast modified on Saturday 10 June 2017 09.14 BST
The election results are in and I have to say I’m surprised. No, stunned. Floored. Like Labour supporters everywhere this morning, I just can’t make sense of it.
What’s puzzling me is not the party’s exceptional performance, but the long line of commentators, pundits and politicians now shaking their heads in disbelief. Having spent nearly two years kicking Jeremy Corbyn and John McDonnell, and vilifying their supporters, they convinced themselves the pair were nothing but, at best, a pair of incompetent losers; at worst, dangerous, even treacherous, ideologues. They predicted doom at the polls because, as we all know, the British don’t like losers and they don’t like IRA-loving Marxist vegetarians who secretly want to tax your gardens and surrender the country to Islamists. A very few have had the decency to apologise.
They say that Corbyn performed better than expected (more accurately, better than they expected). They point to May’s disastrous and mean-spirited campaign (no argument there). They note that the young were mobilised, the elderly scared, and the manifesto was bright, sensible and attractive. All true, to some degree. But there’s more to it than this, and actually it’s no mystery. Any one of the tens of thousands of selfless activists who went out in rain and shine to knock on doors for Labour could tell you: the reason Corbyn-led Labour did so well is because poverty and inequality are now at levels that would embarrass even the most brazen kleptocracy of the most corrupt banana republic. And they trust Corbyn’s Labour to do something about it.
Allow me to introduce you to Diane. I know of Diane through one of the modern right’s current hate figures – a Momentum activist. He’s a solicitor in Hackney who specialises in housing law. Diane is one of his clients. Diane is not her real name, but everything else I’m about to write about her is true. She was born and bred in Hackney. A single mother of four boys, she works as a dinner lady in a local school where she is on a zero-hours contract. That means there’s no holiday entitlement and no sick pay. Simply put: if she doesn’t turn up for work, for whatever reason, she doesn’t get paid.
One day last year, Diane didn’t turn up for work. It wasn’t a bad back or a cold, or because she couldn’t be bothered to get out of bed that morning. It was because her eldest son, still living at home in their rented housing association flat, had killed himself. Depression set in, her absence from work got longer and her rent arrears mounted. Her financial difficulties took a turn for the worse with the bedroom tax. She had what the government now classed as a spare room – her dead son’s room – and she would have to pay extra for it. The debts piled up.
Diane was issued with warnings, and then a summons to appear in court. This is when my solicitor friend got involved. In spite of his efforts, in April this year, she was served an eviction notice. It was a Sunday when he told me about Diane. On the Tuesday, he said, the bailiffs would enter her home, remove her belongings and put her and her three sons on the street. What happens then, I asked? My friend explained that because Diane doesn’t tick any of the priority housing needs, she’ll be left to fend for herself.
You sit listening to this and you think: is it really possible in this day and age that a neighbour will be tossed like a piece of junk into the street? Aren’t there safety nets?
There aren’t, it turns out. And the tragedy of it is that Diane isn’t alone. At any one time, my friend is dealing with a dozen desperate people in similar situations. Up and down the land, there are countless people like Diane being punished for their poverty.
And, just in case you think Diane a one-off, let me introduce you to Amma (same deal, not her real name; the details are, unfortunately, all too true). Amma has been given leave to remain in the country but has “no recourse to public funds”. That means she is not allowed to work, nor is she allowed to claim benefits. She has three children, born in Hackney. After the father deserted the family, Amma eventually found shelter in a hostel in Hertfordshire, sharing a kitchen with nine other families. Every day, her children get up at 5am to travel to school. When they arrive, they are exhausted, hungry, and their clothes smell because Amma has no way to wash and dry them.
We’re coming up for 10 years of austerity. Ten years of turning the screw on Diane and Amma and millions like them, while the rich continue to plunder the country with grinning abandon. And you’re surprised that Labour did so well? Corbyn and McDonnell and their allies have spent their political lives denouncing the injustice of poverty and exclusion. They are now a hair’s breadth from being able to do something about it. Let’s put the infighting behind us and put our shoulders to the wheel. Let’s put May’s grisly new coalition out of its misery as soon as possible.
When Theresa May was challenged by a disabled voter over cuts to her disability benefits and social care last month, it shone a light on the way Conservative policies post-2010 have disproportionately targeted disabled people. Recent years have seen the introduction of many cuts and changes – from the rollout of “fit to work” tests to the abolition of disability living allowance – as well as a lack of action on existing inequalities, such as inaccessible housing. It all amounts to an unprecedented assault on disabled people’s rights and living standards in Britain.
In a series of interviews over several months, the Guardian has followed three disabled readers – Stephen, Alex, and Elli – as they experience the reality of life since austerity.
Stephen’s story: Managing to work in pain, but for how long?
“I want the minister in charge to come here and tell me how I’m meant to live. I’ve worked since I was 15. I pay my taxes. Why do I then have my benefit taken away?” Stephen, 52, asks from his front room in Maidstone with his wife, Elaine, next to him.
A car accident in his 30s left Stephen with osteoarthritis of the spine, memory problems and a degenerative disc in his back. There’s rarely an hour of the day his legs or his feet aren’t racked with pain, and he moves uneasily around the house, holding on to the wall with one hand to pull one leg along. Elaine’s ill herself – she has fibromyalgia, a degenerative spinal disorder, and knee problems – but it’s since the austerity cuts came in that, in Stephen’s words: “Our life’s just got worse.”
Elaine had to give up work as a hotel caterer in 2014 but doesn’t get any income support. The government put a time limit on how long disabled people can have some out-of-work sickness benefits, so after six months of receiving employment and support allowance, Elaine’s benefit was stopped – despite the fact her disability hadn’t got better. Packets of medications and pain relief sit in a small basket on the sofa table. Stephen used to get free prescriptions, but when NHS cuts kicked in three years ago, this went too.
The couple’s only income is Stephen’s job as a warehouse manager at Morrisons. Because the pain in his legs means he can’t use the bus, he relies on a Motability car – a government scheme that lets disabled people swap mobility benefits for the lease of a car, wheelchair, or scooter – to get there. But after being tested for the new personal independence payments (PIP), he was rejected for the mobility part of the benefit this spring and – like more than 50,000 other disabled people since 2013 – he’s been told he must return his vehicle.
The couple have had a temporary reprieve – the Motability charity has extended the lease for a few months – but Stephen will need to return the car in September. Elaine’s already had her own benefit cut in the transfer to PIP – that’s £300 a month gone – but Stephen’s rejection could mean his entire wage could go too. “If I lose the car, I can’t get to work. £30,000 a year,” he says. “Who’s going to pay that?”
The Department of Work and Pensions (DWP) states that “more people are on the Motability scheme now than before PIP was introduced, and under PIP 26% of people get the highest level of support compared to 15% under DLA”, and that anyone can appeal if they wish. Two days ago, Stephen contacted me: the DWP turned down his first appeal to keep his car. “I work despite the pain,” he says. “[And now] they’ve kicked me aside.”
Alex’s story: Treated worse than a farm animal
“It’s not just the cuts. It’s how disabled people are being treated within that,” says Alex, from Islington, north London. “You’re treated worse than an animal going to the slaughterhouse.”
The 44-year-old has multiple severe conditions – a spinal and head injury, degenerative hands and feet, chronic fatigue, double incontinence, and mental health problems – and is unable to walk. For the past four years, Alex has been living in a cramped top-floor flat.
Because the flat is too small for a hoist to let a carer help Alex move safely, Alex is forced to crawl to get from one room to the next: slowly pulling along the carpet, legs dragged on one side. To be able to leave the flat, Alex balances on crutches to get down two flights of stairs. It’s a visible strain: Alex’s feet twist with each step and breaths are short. Outside, at the bottom of another seven concrete steps sits Alex’s wheelchair, chained up on the street. With no lift, Alex can’t get it into the flat.
I first spoke to Alex in January, and it’s clear over the months that the flat is making Alex’s health deteriorate. At one point when we speak, Alex has been bed-bound with a hemiplegic migraine for 11 days – essentially, hit with stroke symptoms that lead the body to go in and out of consciousness. By the end of April, Alex is completely bed-bound. “I can’t crawl or go down the stairs at all now,” Alex emails – but every couple of weeks they risk falling down the stairs with a personal assistant to go to therapy appointments “because my mental health has deteriorated” too. (Alex has asked to be referred to as “they”.)
Alex has fought for months for safe housing from the housing association – even to get on the council’s higher medical band – but there are limited accessible properties in the area, and the only options the council offered were out of borough and too far from Alex’s doctors. In March, Alex was given some hope, after accepting a ground-floor wheelchair-accessible flat in Islington, but it needs extensive adjustments, and three months later, Alex is still stuck in the current flat.
Islington council’s corporate director of housing and adult social services says specialist adaptations and equipment are being installed in the new property and this work is being carried out as fast as possible. They add: “Like London, Islington has a severe housing shortage, and finding suitable, ground-floor, wheelchair-accessible accommodation, in the location requested, has been challenging.”
Talk with Alex and what’s striking is not only the direness of the living conditions, but the fact it’s come at a time when, as Alex puts it, every area of life has also been “infected by cuts” against disabled people. Social care cuts mean Alex is alone in the flat for the equivalent of four-and-a-half-days each week. To afford the wheelchair that sits outside, Alex had to sell possessions from the pavement – “My TV, my landline phone, plates, mugs, my second-hand laptop, clothes, everything” – as the NHS waiting list was three years. (Islington council says a powered wheelchair, which would be suitable for the new property, will be provided as soon as the move is complete.) The fridge is filled with large bottles of milk; since the government cut the medications and equipment available on prescriptions, Alex buys incontinence pants instead of food.
“Only dementia patients get pull-ups now, and then only two a day,” says Alex, who can’t afford the £80 a month required to buy them every day. “So I’m left in soiled pull-ups causing sores and infections.”
Elli’s story: I’ve gone from being a citizen, to nothing
“If I can’t get out of bed, I have to shout to get the pizza man to deliver to my bedroom,” says Elli, 39, in her bungalow outside Norwich.
Elli has hypermobility Ehlers-Danlos syndrome (EDS), anxiety, and chronic fatigue and pain, and leans on crutches as she makes her way from one room to the next. Her social care package used to help her with day-to-day tasks – dressing, preparing meals, household chores – and enabled her to found and direct a local arts organisation. But in late 2016, Elli had her care cut from 44 hours a week to 22. “They halved it overnight,” she says. “It took three 30-minute meetings with a social worker.”
Elli laughs at times as we talk – making jokes about not being able to get up once she’s sat down – but it’s clear that what’s happening is taking its toll. She now has no care hours at all to support her for anything her council defines as “social” – including going swimming as physiotherapy – nor anything “medical”, such as someone going to the hospital with her. Elli’s condition means she falls regularly, but with long gaps without a personal assistant, she’s now regularly left to lay on the floor for five hours with dislocated joints because she has no one to help her up. “I’ve stopped going out now really because if I fall, I won’t be able to get up myself,” she says.
In March, Elli emails to tell me she’s had more support cut. Her Access to Work funding – which pays for a part-time support assistant – has been cut by 100%: £13,000 a year to nothing. “That’s not really a cut at all, is it?” she says.
A DWP spokesperson tells me “real terms funding of the Access to Work scheme has increased”, but with hers stopped, when her health is at its worse, Elli’s bed is now not only her dinner table but her office too: a laptop on the quilt and a pile of paperwork.
In recent years, she’s become familiar with fighting for disability support – she tells me she dislocated her wrist filling in the long application forms for PIP – but as she stares at the window from her bed, she sums up the reality for an increasing number of disabled people: “They’ve taken me from a citizen to nothing, hidden behind a door.”