by Frances Ryan
In 2015, the Public Interest Research Unit (PIRU), with the campaign group Disabled People against Cuts (DPAC), catalogued the experiences of around 150 disabled workers, and found – as draconian assessments for out-of-work sickness benefits rolled out across the country – a ‘disabled-scrounger’ narrative permeated the workplace.71 Disabled workers reported they were increasingly regarded as ‘a burden’, ‘alien’, ‘lazy’, or exaggerating their condition. One local authority worker, with a disability that affects his ability to walk, said his boss tried to make him move ‘to a building with stairs and no lift’. Another, a shop worker with ADHD and obsessive–compulsive disorder on a zero-hours contract, spoke of being pressured to take extra shifts ‘despite quoting the Disability [Discrimination] Act till I’m pink in the face’. While disabled people are dubbed ‘lazy’ for being unable to take on a job, to request support to make staying in work possible is vilified. As one public-sector worker with a neurological condition put it to the PIRU, even taking sick leave is viewed by bosses and colleagues as ‘special treatment’.
It’s this fear of being seen as ‘trouble’, Scope found in 2017, that meant that one in five disabled people do not disclose their disability to employers.72 It’s a gruelling way of working: pushing through pain in a meeting out of fear someone will see, or battling through fatigue in the toilets in case a colleague accuses you of skiving. Nearly half of disabled people have worried about ‘coming out’ as disabled to their employers, according to the same report.
This is not simply a case of outright hostility but sometimes something closer to ‘benevolent prejudice’; that in-built belief among society that disabled people are simply less capable than ‘normal’ people. Analysis by Scope in 2014 found that nearly four in ten people thought of disabled people as less productive than non-disabled people, and 75 per cent of people thought of disabled people as ‘needing to be cared for’ some or most of the time. Over one in ten thought of disabled people as ‘getting in the way’ some or most of the time.73 If an employer looks at a person with a crutch and sees them as needing to be looked after or an inconvenience, it’s hard to imagine that worker is going to be hired or promoted.
Pearl is now challenging the decision of her dismissal and has sent her appeal letter to the chief executive of the media company. The process has exacerbated her anxiety, thus triggering her dystonia, causing more pain. She had moved back to London for the new job but now cannot afford to pay the rent and will have to move back in with her parents in Cardiff again ‘unless I miraculously get a job’. ‘I’m back to square one,’ she says. ‘I feel quite hopeless and depressed.’
In the spring of 2013, the workplace became that bit more insecure for disabled people. This was when the legal aid budget – the safety net for, among others, disabled people struck by discrimination at work – was gutted by £350 million a year amid vast changes to eligibility criteria. While since 2010 the ‘welfare’ budget has been lined up as the prime target for austerity, few government departments have remained immune to it. To that end, the coalition government issued sweeping changes to the legal aid system, excluding entire areas of law from the scope of legal aid under the guise of cost-cutting. While legal aid for housing rights was left with scraps, support for ‘welfare’ appeals and employment were decimated.
Overnight, a wheelchair user harassed as a ‘scrounger’ by her colleagues or an office manager sacked for developing depression was priced out of the legal system. In doing so, it marked the first change to fees since the tribunal system was established in 1964. In total, almost £1 billion was cut from the legal aid budget between 2010–11 and 2016–17, according to Ministry of Justice figures. By 2019–20, the Ministry of Justice (MoJ) will have seen cuts to its overall budget of 40 per cent – among the deepest of any government department.74 Before these changes, if someone like Pearl faced discrimination, they would have the protection of free legal support in order to help get justice. Now, to take a disability discrimination case to an employment tribunal, the individual has to find a minimum of £1,200 – or the equivalent of a couple of month’s rent or half a year’s worth of specialist food.
As it gutted legal aid funding, the government put what it termed ‘an exceptional case’ fund in place – an emergency safety net to, in theory, catch the most marginalized claimants. But to qualify for a reduced or no fee, an individual had to pass a monthly income and ‘disposable-capital’ test. It gives an insight into how well this protects disabled people that benefits like Disability Living Allowance (DLA) and its replacement, Personal Independence Payment (PIP), are actually judged as ‘disposable capital’ in these calculations, meaning that disabled applicants75 – typically poorer and in need of DLA or PIP to pay for disability costs – are in the perverse situation of risking being judged as less eligible for help with fees than non-disabled people.
Unsurprisingly, since fees were introduced, disability discrimination claims have fallen rapidly: MoJ figures show that 63 per cent fewer claims were accepted by the employment tribunals between the first quarter of 2013–14 (prefees) and the first quarter of 2014–15 (post-fees).76 By 2016, three years after the cuts to legal aid first came in, Amnesty International was declaring that a ‘two-tier’ system had emerged: while the wealthy and, by extension, healthy could afford to buy access to justice, the poorest and ill were being shut out.77
Across the country, a desert of legal advice has been spreading in recent years. At the same time as legal aid was cut, local councils, squeezed by austerity to statutory services, pulled funding from welfare rights services, debt advice centres and law centres. The number of legal aid providers across England and Wales subsequently shrank by 20 per cent in just five years between 2012 and 2017,78 while Citizens Advice and council-run advice centres shut their doors.
Put a pin in a map and each community has its story. The Law for All charity in Ealing, west London, closed as far back as 2011. West Norfolk’s disability service, run by disabled people and their carers, began crowdsourcing in 2017 to stay afloat. There used to be nine law centres across Greater Manchester; now there are two. Out of a red-brick shop front in Manchester’s Moss Side, the Greater Manchester Law Centre (GMLC), a pro bono centre run by volunteer barristers, trade union workers and law students, tries to fill the gap. By the time the GMLC officially opened its doors in February 2017, the team had already seen 200 cases. People started turning up as soon as they heard the centre was coming, knocking on the doors with plastic bags full of paperwork.
There’s the rub, of course. It is not only that the government has pulled funding from legal aid or welfare advice centres, but that it did so at the same time as it brought in policies that mean that these services are needed more than ever. Stringent out-of-work tests falsely find disabled people ‘fit for work’ but local council cuts take away the welfare advice worker they can turn to for an appeal. Ministers’ rhetoric of ‘scrounging’ disabled people fosters a discriminatory environment for disabled workers but changes to legal aid mean they likely can’t afford to take their employer to court. While disabled people are increasingly perceived as having an ‘easy life’, the ultimate hostile climate has been crafted: pushed into any job by an adverse benefit system, made vulnerable to being victimized by employers, and cut off from the right to seek justice.
CHAPTER 3
Independence
On the worst nights, Rachel’s wheelchair is her bed. The forty-four-year-old has arthritis of the spine and joints, on top of a string of other health conditions – fibromyalgia, Crohn’s disease and Lupus – and since 2006 she has relied on a care package from her local council to enable her to live independently in a bungalow in the New Forest. But over the past eight years, as social care reductions have spread across the country, in Rachel’s words, her care is ‘just getting cut, cut, cut’.
In 2010, barely months after the coalition government gained power, Rachel’s local authority stopped her visit from a care worker who helped her get rea
dy for bed. Her cleaner and gardener went a few months later; cutbacks meant her council changed eligibility rules so only residents over the age of seventy could get the help. The following year, they pulled her evening care call too, meaning the end of her having a hot dinner. Rachel is often too weak to reach the oven from her wheelchair, and without a care assistant she can’t cook herself a meal. By 2016, Rachel was left with just one forty-five-minute care slot a day: a morning visit to help her quickly get washed and dressed.
In May 2017, even this disappeared. Like many cash-strapped local councils, Rachel’s social worker told her that if she wanted to keep even this provision, she would need to increase her contribution to her care costs. In fact, she would have to cover 90 per cent of it herself. That’s £200 a fortnight – for barely a quarter of the care hours she started off with.
In theory, Rachel could use her disability benefits to cover some of the cost but in austerity’s onslaught, nothing hits alone: the same month Rachel was handed her social care bill, she was transferred to the new Personal Independence Payment (PIP) – and promptly had her benefit cut. Rachel hasn’t been able to earn a wage since the late 1990s – before becoming disabled, she worked as a nurse to the elderly – and with no way to pay her council’s costs, she’s had her support package entirely removed. ‘I’ve no care at all now,’ she says. ‘Nothing.’
Look hard enough around Rachel’s bungalow and you can see the signs. The lawn out the front has vanished – a friend dug it up and replaced it with gravel since there’s no help to cut the grass. A group of teenagers from the local Scouts group trims the trees for her; ‘Other than that, it’d be a jungle by now,’ she explains. Indoors, the dust ‘just builds up’: months of having no one to keep it clean. Rachel bought a little ‘robot hoover’ to at least run over the bare floors. She makes jokes – ‘It works as long as you don’t run over it in your wheelchair,’ she laughs – but the impact of having her social care removed is clearly brutal. As she puts it to me: ‘I’m coping on my good days. On bad days, I don’t get washed and dressed.’
If she’s lucky, she says, she gets two ‘good days’ a week: spells where she can lift her arms out of her pyjamas in the morning or transfer herself out of her wheelchair and into a bed at night. To put that another way, with no care assistant to help her, for five days out of seven Rachel can’t shower, get dressed or eat regular meals. To survive, on the days her arms are strong enough to lift a pot, she uses a slow cooker to build up a batch of meals for the week: stews and casseroles stored for when she physically cannot cook. Other days, she eats fruit or slices of bread.
Each month, Rachel goes to her GP for routine blood tests and over the past year, as the cuts took hold, she’s been told she’s now clinically malnourished. Her Crohn’s disease already makes it harder for her to absorb nutrients but without a carer to help her cook, her body isn’t even getting enough iron or vitamins to begin with. Instead, she’s taking dissolvable vitamins from the chemist when she can. She struggles with sleep – sometimes she only gets a few hours stretched over the whole week – and as her pain increases, her energy shrinks.
This is Britain’s social care system – where wheelchair users are left to become malnourished and sleeping in a bed is a luxury. In the years after the financial crash, as George Osborne kick-started the era of austerity, local councils were rapidly starved of cash from Westminster. It was local services – homelessness outreach services, libraries and children’s centres – that took the hit, none more so than social care provision. Since 2010, adult social care has seen cuts of almost £6 billion, with the Local Government Association (LGA) warning eight years later that care services for older and disabled adults were now ‘on the brink of collapse’.
As social care began to hit the mainstream agenda in the post-2010 era, it became commonplace to hear ministers grilled on the subject of the ageing population or to read of elderly people subjected to the indignity of ‘fifteen-minute’ care slots. But as I heard more and more about this crisis, I began to notice something strange: disabled people like Rachel were largely missing from the picture. Listen to news coverage of social care and you will rarely hear the word ‘disabled’ uttered, just as you’ll struggle to see a newspaper story on the ‘care crisis’ illustrated with a stock photo of someone below the age of seventy.
It’s much the same in politics. When Theresa May addressed the House of Commons in December 2016 as the social care crisis began to gain attention, she pledged to ensure people would ‘receive the care they needed in old age’1 – as if there are not hundreds of thousands of disabled people who rely on the service throughout their lives.
Meanwhile, the government’s long-delayed 2018 consultation on reforming the social care system failed to include a single disabled person or organization in the team of ‘expert advisers’. In fact, while promising to work with services ‘which help older people to live independently’, working-age disabled people weren’t addressed in the Green Paper at all.2 After pressure, disability organizations were offered a ‘round table discussion’ instead. This sort of blackout is part of a wider exclusion of disabled people from the public consciousness and, with it, from media and politics. Just as the voices of those in poverty are largely absent from the national debate, the lives of disabled people are often distorted, marginalized or altogether ignored.
This has rarely been more blatant than in the social care debate. While disability is sidelined, disabled people actually represent a third of all social care users. That means around 400,000 working-age disabled people in England alone rely on a social care package3 – say, a rotating team of personal assistants – to support them in their home with the tasks most take for granted. On paper, such packages enable basic human functions: getting to the toilet, cooking a meal or leaving the house for work. But really, they are much more than this – a way to gain control, dignity and, above all, a chance to live an independent life like anybody else.
There are now one million disabled people living without the social care they need, according to research by the charity Leonard Cheshire in November 2016.4 That’s equivalent to the population of Birmingham unable to get dressed in the morning or being housebound. Almost half the disabled people who say they need support told the charity they aren’t receiving any at all. A separate study by Scope in 2015 painted a particularly harrowing picture of the social care system’s treatment of disabled people.5 The study found that over eight out of ten disabled people don’t have enough social care hours, resulting in their being forced to sleep in their clothes, to go without washing or eating, or waiting fourteen hours to go the toilet. It sounds almost Victorian.
There are now widespread reports of disabled people like Rachel becoming physically sicker because they have no support to move or keep clean; or sliding into depression when, with no care worker to help them get out of the house, they are forced to spend all day and night within four walls. Leonard Cheshire has found disabled people as young as their twenties being regularly forced into bed at 5 or 6 p.m. by their local authorities as, with stretched services, it’s the only care slot available. Others are being told by their council to use incontinence pads and adult nappies – despite the fact that they’re not incontinent – simply because there’s no care worker to help them get to the toilet.
These funding cuts ushered into the social care system were so severe that, in 2017 when the United Nations issued its scathing report into the UK government’s treatment of its disabled citizens, it highlighted what it dubbed the failure of the government ‘to recognise the rights of disabled people to live independently in the community’.6 In 2018, the Care and Support Alliance (CSA), a collection of eighty charities, warned that the care crisis had reached the point where disabled people were now having their legal ‘rights breached’.7 It found that a quarter of disabled people relying on social care had had their support cut between 2017 and 2018, despite their disabilities remaining the same or even worsening. Nearly half were
subsequently now unable to leave the house, while a third couldn’t maintain basic hygiene like washing or going to the toilet. A quarter had been forced to go without meals.8
As cash-strapped local authorities reeled from the shortfall in central government funding, disabled people like Rachel were increasingly expected to plug the gap themselves. While councils have always been legally entitled to charge for social care, in practice few asked individuals for anything but a small contribution, with others charging nothing at all. But with mounting financial pressure, recent years have seen a growing number of local authorities adopt or raise charges; two-thirds of councils in England introduced or increased care fees between 2015 and 2018, according to the MS Society. In 2018, research by the union GMB found that more than 165,000 people were subsequently in what’s dubbed ‘social care debt’ – in essence, being pushed into financial crisis.9 Between 2016 and 2018, over 1,100 people were taken to court by local authorities;10 wheelchair users hauled in front of a judge for needing social care but being too poor to pay for it. This picture is only set to get worse in the coming years. The LGA estimates that adult social care faces a £3.5 billion funding gap by 2025, with council’s core funding in England set to be slashed by 77 per cent by 2020.11
In the New Forest, Rachel is becoming resigned to malnutrition – ‘It’s just going to happen now,’ she says – and is focused simply on coping with no longer having any social care. ‘Things might change,’ she adds. ‘If they stop badgering us disabled for once. Blaming us for everything.’