by Frances Ryan
It says something about the situation facing disabled people that, in some ways, Pete counts himself lucky. His independence is gone but he is at least at a care home in which he’s treated well. This is often not the case; as employers struggle to retain care staff on low wages and increasingly heavy workloads, research by the Care Support Alliance (CSA), a coalition of more than 80 charities, in 2018 found one in five care residents had gone without meals and a quarter had gone without basic needs such as washing, getting dressed and going to the toilet.32 One respondent said they had not been washed for more than two months and that their pyjamas had not been changed all year.
This institutionalization is particularly prevalent for people with learning disabilities – increasing the potential threat of neglect and abuse. Recent years have seen multiple cases of abuse at care homes in Britain hit the headlines. In October 2012, six care workers at Winterbourne View care home, south Gloucestershire, were given prison terms for ‘cruel, callous and degrading’ abuse of disabled people.33 In a high-profile BBC Panorama investigation, workers were filmed slapping residents with severe learning disabilities, soaking them in water, trapping them under chairs, taunting and swearing at them, pulling their hair and poking their eyes. Five years on, more than a dozen directors and staff at two care homes in Devon were convicted for the ‘organised and systematic’ abuse of disabled residents: people with learning disabilities held in empty rooms without food, heating or a toilet.34 The prosecution likened the conditions to ‘training an animal’.
While the extremes of Winterbourne View far from represents all residential care, this is not simply a case of a few bad apples. In 2018, on what was the largest-ever survey of care home staff in England, University College London found that abuse was taking place in at least some form in 99 per cent of care homes due to ‘chronic underfunding’.35 The most common abusive behaviours were making someone wait for care or not giving them sufficient time to be able to eat. A minority reported verbally and physically assaulting residents.
Such abuse is a particularly brutal example of where dehumanization of disabled people in the UK has led to – of how long-standing prejudice that sees disabled people as different, objects, or burdens, has combined with austerity to see us treated as if we are less than human. As cuts to disability services kicked in after the global crash, the same dehumanization that made it ‘permissible’ to starve a wheelchair user through benefit cuts encouraged a belief that locking up disabled people in institutions after removing their social care was somehow acceptable.
More than this, it stoked the idea that this was perfectly normal. Wouldn’t disabled people be better off in a care home? After all, they need to be cared for and this way they can all get the help they need. As I researched this subject after 2010, I began to hear this argument more and more. ‘Why not put them all in one place?’ was a common response from members of the public when I wrote about social care changes. Others professed a desire to help but relented due to what they saw as financial constraints: ‘It’s awful for disabled people but how expensive is 24/7 care for all of them?’
Ethics aside, this argument ignores the economics at work. The Women’s Budget Group has shown that if you invest 2 per cent of GDP in the care sector, you get double the number of jobs compared to investment in construction.36 Meanwhile, supporting disabled people enables many to work themselves and in turn pay taxes. It’s telling, then, that the argument that decent provision for disabled people is too costly is actually fatally flawed, but more worrying still is that disabled people’s lives are seen in these cold mathematical terms. It’s a hop, skip and jump to pulling out a spreadsheet and calmly calculating how much exactly a disabled life is worth. In this climate, the truly reasonable are the ones arguing to round up the disabled from their living rooms and put us in institutions.
When Sue lost her right leg in 2014, she was already close to being housebound. The fifty-seven-year-old had multiple health problems, including osteoarthritis in each of her joints. Chronic vascular disease accounts for the wheelchair, two sticks, crutches and seated walker filling the flat. Over the following two years, Sue had nine operations – the last a leg amputation right up to the hip. Her ‘good’ leg – ravaged with a sort of burning pins and needles – meant she struggled daily. In addition, she has chronic obstructive pulmonary disease (COPD); in layman’s terms, her lungs can’t empty the air she needs.
There are grab rails throughout the flat to help her move from one room to the next. ‘Sometimes I can go a whole week without falling. Others it’s three to four times a week,’ she says. But thanks to Motability – the government-backed scheme that enables some severely disabled people to lease a suitable vehicle in exchange for their disability benefit – Sue was still able to get out and about when she wanted.
Sue speaks to me from Blackley, a few miles north of the centre of Manchester. Her local Tesco Metro is both her primary stop for food and the crux of her old meticulous routine. She’d drive her Motability car the few minutes there, park directly outside with her blue badge, use her walker to get from the car park, borrow one of the store’s scooters to pick up a few bits, and then drive home. The car, she explains, was adapted. A flip foot-pedal adaptation and automatic gears. It meant she could still drive where she needed even with her amputation and deteriorating health – and all for the price of part of her Disability Living Allowance (DLA).
Established in 1978, for three decades the Motability scheme has provided this service for millions of disabled people, enabling them to swap their disability benefits for the lease of a car, scooter or powered wheelchair. As of 2018, it bought and sold 200,000 cars each year.37 In many ways, it’s the definition of an efficient fund, overcoming two hurdles in one: it provides transport to citizens who need a vehicle in order to get around, and who – due to being more likely to be in poverty as well as often unable to access public transport – may otherwise be cut off from buying one themselves.
For many disabled people, it’s more than a mundane government policy. It’s a piece of independence: the only way to get to work, see friends or go to the shops. But when the coalition abolished DLA in 2013 and replaced it with the notoriously tougher PIP, Motability users like Sue suddenly found themselves having to reapply to keep their own car, in effect going through a new assessment in order to keep the lifeline they’ve relied on for years.
Under burgeoning austerity, the Motability scheme had in many ways become the poster child of the ‘disabled-benefit-scrounger’ narrative: a tangible patsy for the idea that, while ‘hardworking’ families struggled to make ends meet in the post-crash economy, it was only logical to be suspicious of your disabled neighbour when he drives by your house in a new car. In June 2011, under the headline ‘Free BMWs for pals of disabled in scam’, the Sun ran a story alleging that ‘THOUSANDS of people are enjoying luxury Mercedes and BMW cars provided free by the taxpayer,’38 peddling the myth that huge numbers are faking disability in order to milk a car from the state. Five years later, right-wing newspapers were still spreading this propaganda: in June 2016, the Daily Mail was warning readers how ‘thousands are driving off in vehicles paid for by YOU’ as it detailed how the Motability scheme was supposedly frittering away £2 billion of taxpayers’ money.39 As its baiting headline dubbed it: ‘The car scam that will drive you crackers.’
If it’s a scam, Sue is an Oscar-worthy actor. When she was tested for PIP in September 2016, she was so ill that the assessors had to let her have a rare home visit: she answered the questions sat in her wheelchair, wearing pyjamas, and with her prosthetic leg off. Still, she was rejected for PIP. Sue had been on DLA for a decade but, just like that, she was informed she’d been kicked off the Motability scheme.
After the assessment, the consequences followed swiftly: Sue had twelve weeks to return her car and hand over the keys to the dealer. By Christmas, like thousands of others, the car had gone back to the garage, complete with its adaptations for Sue’s amputation
. By 2018, over 75,000 disabled people across Britain had lost their cars, power wheelchairs and scooters due to benefit changes according to Motability figures; that’s over 40 per cent of all clients.40 Over the following years, as the PIP assessments continue to roll out, this is set to only increase.
For all its politics, the result is simple and brutal for Sue: ‘It means being housebound. Without the car, I’m stuck.’ Buses arrive regularly 300 metres down the bottom of her road but that means little when you’re not able to get to the bus stop. Walking a few metres is filled with nausea and pain for Sue. When her osteoarthritis flares up in bad weather, her joints lock up, and sometimes her stump is too sore to tolerate her prosthetic leg. Her breathlessness means she can’t self-propel her wheelchair that far. Suddenly, without the car, she could not do even the most basic things like getting out to pay a bill, ‘or buy bread and milk,’ she says.
Research by the Disability Benefit Consortium, a national coalition of over eighty charities and disability organizations, found in 2017 that four in ten disabled people say the transfer to PIP has led them to become more isolated.41 Over a quarter of disabled people say they aren’t even able to get to medical appointments any more.42 With no car, Sue had to start using NHS ‘private transport’ to get to the hospital to see her consultants; sometimes half a dozen times a month. It’s the sort of economic incompetence that’s become central to ‘welfare reform’: take back an already adapted car only for stretched NHS budgets to have to provide more expensive transport.
The Motability scheme is not without its troubles. In 2018, a report by the government spending watchdog, the National Audit Office (NAO), criticized the company for its high financial reserves and top executive pay, citing the £1.7 million earned by the scheme’s chief executive, Mike Betts.43 Within a few weeks of the report, Betts had resigned, though not before receiving a £2.2 million bonus on top of his seven-figure salary.44 The backlash was warranted. A chief exec of a disability charity making millions in many ways spoke to the worst of Britain’s inequality and bloated fat cat culture. But it is telling how much coverage it received from politicians and sections of the press compared to the loss of cars by disabled people. Moreover, the very same ministers who queued up to criticize Motability out of apparent concern for disabled clients were often the ones responsible for the policy that was removing their cars from them. When the House of Commons debated Motability’s executive pay in February 2018, then welfare chief Esther McVey was accused of making a series of untrue claims about the Motability Scheme, effectively using the pay scandal as an opportunity to try and shift the blame from her own department’s benefit cuts. This included urging the charity’s trustees to be ‘held to account’ after another MP described how a constituent had been threatened with having her lifelong Motability vehicle removed on Boxing Day – when in fact it was the government’s benefits policy that meant she was deemed no longer eligible for the car.45
To have a chance at getting back her right to a car, Sue applied for help from Fightback4Justice – one of the pro bono legal groups patching the gaps of dwindling welfare rights and legal centres. In some ways, she was lucky as she at least found a volunteer to help her through the process. In 2018, it emerged that 99 per cent of disabled people had been deprived of support for benefit appeals since 2011 due to the introduction of legal aid cuts.46 Still, it would be difficult to say Sue had ‘luck’. While she was appealing, her health rapidly deteriorated: in May 2017, she was diagnosed with terminal rectal cancer. Only two months later, in the middle of cancer treatment, Sue had to make her way to a tribunal in the city centre. The decision was almost instantaneous, she says: ‘We walked in. They said, “We can’t understand why they’ve taken it off you.” They gave it back.’
It took another two months after her appeal for Sue to actually get a car back. Her old specially adapted car had long gone so she had to order a new one, get it delivered to the dealer, and then the dealer send the car to an adaptations company. Five days after we last spoke, Sue picked up a new car: a bright yellow Nissan Juke. ‘I looked through the book and thought, “sod it, I’ll get one that gets me noticed,” ’ she says. ‘They call it “Sunshine Yellow.” ’
It took a year-long battle to get here; to get back to where she started. In the process, she’s had to use her limited time left fighting, while also stuck in her flat, housebound. As we talk, she uses an inhaler – a spray into her mouth each time her breath catches. She tells me she’s pledging to use every day she has left, though she can’t get back what she lost. She pauses: ‘It took my independence off me.’
Without a wheelchair, three months can pass without Philomena leaving her terrace house in Liverpool. The fifty-three-year-old has multiple chronic illnesses – heart disease, double incontinence and chronic fatigue – and each makes it hard for her to physically move. COPD, on top of heart disease, means she gets breathless when she walks. Her right leg throbs from cardiovascular disease and fibromyalgia causes burning pain. She can make it around thirty feet on crutches – about the length of three cars – before the pain kicks in. ‘The pain is horrendous, even to get to my neighbours. I can’t walk anywhere.’
Still, after asking the NHS for four years for a wheelchair, she’s been repeatedly turned down for help. ‘Everyone just says, “there’s no money for wheelchairs.” Like you can magic one [yourself] out of nowhere.’
Ask a member of the British public and the impression is often that if a disabled person needs a wheelchair, the state will provide one. In 2017, YouGov polling commissioned by spinal chord charity Back Up found that this belief was so ingrained that 60 per cent of UK adults believed that people who need a wheelchair should only have to wait up to one month, or should be given one straight away.47 But listen to Philomena describe her life and you soon get a clue of just how far this is from reality.
It’s local GP-led services, CCGs, across the country that determine the policy and budgets for wheelchairs in each area, but just like with social care, as austerity heavily reduced funding, this service has been hit. When Philomena asked her GP for help, she was told that the NHS was ‘hard-pressed at the moment’ and that her CCG didn’t have funding for a wheelchair. Instead, Adult Social Services provided her with a trolley – something to lean on and put food and drinks in as she pushes it around the house. When she asked her occupational therapist, she said there ‘wasn’t any money for wheelchairs’ and suggested Philomena buy her own.
That’s easier said than done. A suitable wheelchair often costs at least £2,000, with the most specialist as much as £25,000. For a family with health problems, this is beyond expensive. It is a class issue as much as a disability one; while richer families will be able to find several thousands of pounds to buy a wheelchair, those on a low income will find it impossible on top of rent, utilities and food (households that are already much more likely to be living in poverty due to disability).
Philomena hasn’t been well enough to earn a wage since the 1990s, when she worked in a local off-licence. Her husband, a public sector tax worker, hasn’t had a pay rise for a decade. Once the two of them pay all the bills, they usually save for treats for their seven-year-old granddaughter – ‘A pound here. A fifty pence there.’ At that rate, if Philomena spent the money on herself, it would take her around 160 years to have enough for a basic wheelchair.
Philomena represents what is a widespread crisis of disabled people in Britain being left without wheelchairs. The NHS wheelchair charter, which was drawn up by campaigners before being adopted by NHS England, states that access and provision should be equal for all, ‘irrespective of age or postcode’, but it’s common practice for people to languish for years on waiting lists or to be turned down entirely. A BuzzFeed investigation into wheelchair provision on the NHS in 2017 found almost a quarter of people referred by GPs to wheelchair services are not being given any equipment at all.48 It also uncovered an extreme ‘postcode lottery’: in some parts of the UK, disabled people are
provided with the right chair, but in others, three-quarters of those referred are offered nothing by wheelchair services.49
On top of this, it confirmed there are large delays in disabled people getting help: 96 per cent of areas are missing their target to supply all wheelchairs within the eighteen weeks guaranteed by the NHS constitution.50 Even children aren’t guaranteed care by the state. Analysis in the Health Service Journal (HSJ) in 2018 showed that over 5,000 disabled children in England who need a wheelchair are waiting more than the four-month target for the equipment to be delivered, resulting in children struggling to go to school or be rehabilitated.51
Wheelchairs are rarely seen in positive terms by non-disabled people. Flick through a media report mentioning a disabled person with mobility problems and the phrase used is typically ‘wheelchair-bound’ – as if the wheelchair has contained the individual and they are stuck helpless in the corner of the room. When Stephen Hawking died in 2018, cartoons and imagery used by many media outlets spoke of him being ‘free’ of his wheelchair, with death seemingly a fortunate escape from the wheels and metal that ‘trapped’ a great mind. In fact, this is far from the truth.
While cultural perceptions of disability perpetuate the idea that wheelchairs are prisons, for disabled people like Philomena they represent freedom: the only way to see family, meet a friend or do everyday things. ‘It’d be nice to say, “Let’s go to the shops,” ’ she explains. She recently saw a Batgirl outfit on Asda’s website for her great-niece – a little tutu – and a friend suggested they go and look at it in person. She hasn’t been to Asda for almost a year, she tells me. She can’t. ‘I’m stuck in the house 24/7.’
This sort of isolation is a common consequence of poor wheelchair provision, including for those who only need one short term. The British Red Cross warned in 2018 that a UK-wide shortage of wheelchairs was leaving as many as 4 million people a year housebound and isolated, some of whom are terminally ill and are spending the last few months of their life trapped at home.52