Crippled
Page 10
When I next speak to Philomena, it’s the day after a rare trip outside to the opticians. Without a wheelchair, she had to walk with crutches, a portable nebulizer sitting in her handbag for when she got out of breath. She was soon paying for it: as she got home, she put her crutches down and sat on the stairs, and her husband had to help her straight to bed. Today, she can ‘barely walk’. Her arms are burning; legs ‘killing’ her. ‘I feel like I’ve been run over by a bus.’ It will take her days to get over the leg pains, but she tells me she’s got a hospital appointment tomorrow. Her husband – himself recovering from a stroke – tries to reassure her, saying, ‘we’ll just have to hope the hospital’s got a wheelchair available.’ ‘If my husband wasn’t there, I wouldn’t even be able to push round the ward,’ she says.
Each day, Philomena lives with what you might call tantalizing independence. Even with council cuts to bus services, there’s decent public transport on her road; as she puts it, ‘I’m well connected to the buses … if I could get to the bus stop.’ Her housing association put in a handrail on the outside door of the house and widened the steps so she could use it with her crutches. But without a wheelchair, she can’t physically make it past the bottom of her road. ‘It’s like living in the Victorian times,’ she says. ‘We’re locked away so no one knows we exist.’
It’s hard to feel that this isn’t the definition of a nation’s literal hidden shame: disabled people trapped behind closed doors because, if you can’t walk, the state still won’t provide a wheelchair. Disabled people in Britain have long had to live without wheelchairs. Despite being born with a disability, I didn’t get my first wheelchair until I was ten. Before then, I got around in a large buggy that, in the 1990s, health services thought was the best way to transport a growing child on the way to secondary school. In the end, my parents got help from a charity, Whizz-kidz, to afford a suitable wheelchair.
But in recent years, it feels as if this situation has got worse. As cuts to the social care and social security system chip away at disabled people’s independence, squeezed budgets mean that CCGs are increasingly turning down people like Philomena for wheelchairs. Some will only provide a basic wheelchair – rather than one that’s suitable and safe for an individual’s disability. Others who used to offer ‘vouchers’ – in essence, a scheme that allowed CCGs to contribute a small sum towards a chair – have scrapped them.
This situation has quietly reached such dire straits that in June 2017, medics at the British Medical Association’s annual representative meeting in Bournemouth unanimously passed a motion calling for users to have ‘timely access to chairs suitable for their individual conditions’.53 It perhaps gives a hint of the lack of priority given to disabled people’s lives that there’s little information on what help wheelchair users are actually receiving: there aren’t national eligibility criteria for receiving mobility equipment and until 2015 there wasn’t even centrally gathered data on wheelchair services across the country.
Philomena makes dark jokes about how fraught she is – ‘I say to my GP, can’t you just cut my leg off? Least then I’d get a wheelchair’ – but this desperation is real. In recent years, I’ve spoken to a number of disabled people who have resorted to buying a cheap wheelchair on the Internet after being rejected by NHS wheelchair services. One student told me she spent £50 on an untested wheelchair from Amazon because she had no other option. She went on to incur permanent injuries.
The wrong wheelchair can be as damaging as none at all: research by ComRes on behalf of the Toyota Mobility Foundation in 2018 found that 90 per cent of wheelchair users in the UK have experienced pain and discomfort as a result of their mobility devices.54 Others are turning to crowdfunding to raise money for a suitable chair, where having to ask strangers for help on the Internet is akin to the modern day ‘cripple with a begging bowl’.
Crowdfunding websites, such as Kickstarter and JustGiving, are best known for allowing people to raise money for their own personal cause: a community project or a school club. But cuts to services means they’re increasingly being used to fulfil what’s a serious medical need; the amount of money raised for wheelchairs on JustGiving increased fourfold between 2015 and 2016, from £365,000 to £1.8 million.55 Philomena says a friend suggested she set up a GoFund page but she couldn’t bring herself to. ‘No,’ she says, adamantly. ‘Asking a stranger for money. We weren’t brought up that way.’
The issue of wheelchair provision is likely to become increasingly pressing in the coming years. From 2018 all CCGs in England began replacing the existing wheelchair voucher scheme with personal wheelchair budgets, in which people are told up-front how much money is available for their wheelchair, based on an assessment of their individual needs and goals. And yet this is happening at a time of vast cuts in resources. In addition to wider NHS funding pressures, other limited avenues for wheelchair funding are pulled away, from cuts to Access to Work – the fund that pays for practical support for disabled people at work – to tightened eligibility for the Motability scheme, which provides, as well as cars, powered wheelchairs in exchange for benefits.
Philomena used to be on a ‘lifetime award’ of disability benefits until the reforms set in a couple of years ago. She had double pleurisy during the assessment – ‘I could hardly breathe from the pain,’ she says – but regardless, the officials cut it. She used to use her disability benefit to help run a car – petrol and insurance costs – but since her benefit’s been cut, she’s had to give that up.
With no car or wheelchair, Philomena is clear about the consequences: ‘They took my little bit of independence.’ As we finish talking, she tells me that she and her husband are currently saving to take their granddaughter and daughter to a local theme park day: grandparents go free and other tickets are fourteen pounds. Most importantly, wheelchairs are provided without charge. ‘Just a day out with Nanny,’ she says. ‘She’ll just be glad Nanny’s out.’
CHAPTER 4
Housing
For the last six years, Robert has been trapped in an attic flat in Brighton. The thirty-four-year-old has tetraplegia due to a degenerative neurological disease – his body is almost fully paralysed except for his lower left arm. But when he applied for social housing in 2012, due to a lack of accessible properties in the area, his council assigned him a second-floor flat – with no lift access. Back then, Robert’s condition hadn’t advanced enough for him to need a wheelchair but he was already unable to walk up stairs – ‘My legs would collapse from under me’ – and with two flights of stairs to the attic, there was no way for him to get in or out of the flat. Still, Robert had no choice but to accept the property: he was living in a homeless shelter at the time and with no other options from the council and his paralysis spreading, he had nowhere else to go.
Since then, the flat has become a prison. Robert now needs a wheelchair full-time, but because there’s no lift, he’s stuck inside. Before he got ill, Robert ran his own interior design company, was a keen gardener, and could be found most days and nights at the gym or out dancing. Accessible housing would have enabled him to keep at least some aspects of his former life but, instead, he’s lost it all. He has no contact with his old friends. He goes outside so rarely that he’s developed a severe vitamin D deficiency from the lack of sunlight. The only time he leaves his flat is to go to the hospital, he says. ‘The highlights of my life these days are my [medical] appointments … when I get to see what the outside world looks like again.’
To achieve this, he goes through a sort of torture: to get out of the flat, one of his personal assistants slowly pulls him down the stairs. It takes about two hours to do it – one step at a time, his body physically dragged over two flights of narrow stairs. Often, Robert falls. His paralysis means he hasn’t got the strength in his back to hold himself up, so, as his assistant tries to pull him carefully, he slips. Ask him about the injuries he’s had from this and it’s an endless list: a smashed shoulder, knee, head. A sprained wrist. He can�
�t feel his legs any more, he adds, so he can’t feel what damage he’s done there.
Being paralysed in an attic flat not only means Robert has no way to get out of his home. He can’t safely move inside it either. His wheelchair sits chained up at the bottom of the stairs: he has no way to get it up the stairs or move it through the cramped rooms and doorways of the tiny flat. Instead, to get around his home, Robert is dragged: he sits on the floor, his personal assistant puts his arm, under his torso, and he’s pulled from one room to the next. ‘Like a piece of meat,’ he says.
It’s well established that recent years have seen Britain enter a housing crisis, with rising house prices and rents at a time of stagnating wages seeing the secure, affordable homes enjoyed by previous generations becoming increasingly out of reach. The issue has received vast political and media attention, in which politicians from all sides utter commitments to house building while news items chronicle the lives of families forced to save for years for a deposit and yet still find themselves shut out of the housing market. But for disabled people like Robert, this crisis is altogether starker.
In 2018, the Equality and Human Rights Commission released its findings of an eighteen-month inquiry into accessible housing in Britain, finding what it called a ‘chronic shortage’ of suitable homes for disabled people.1 The inquiry reported disabled people being trapped inside their homes, or having to eat, sleep and bathe in one room. Others spoke of how they had to be carried around their homes by family members; grown adults ‘piggybacked’ up to their bed. As I began to talk to disabled people about their housing over the last few years, I found a similar picture: a wheelchair user washing in a paddling pool in his kitchen with a hose because he couldn’t use his bathroom. A mother falling down concrete steps carrying her son’s wheelchair. A young woman forced to use a commode in the living room because the toilet was upstairs.
According to research by the London School of Economics (LSE) for the charity Papworth Trust in 2016, there are 1.8 million disabled people struggling to find accessible housing.2 Leonard Cheshire estimates that as many as one in six disabled adults and half of all disabled children live in housing that is not suitable for their needs.3 This is not surprising when you consider how few properties are accessible: in England, a staggering 93 per cent of housing stock is inaccessible to disabled people, as it fails to meet minimum accessibility standards.4
That homes in Britain are almost exclusively designed for non-disabled people cannot be seen in isolation. When it comes to infrastructure of any type – whether that is shops, restaurants, transport or sporting venues – the default setting is ‘non-disabled’, with public and private buildings alike aimed at people who can walk up steps rather than require a ramp. This failure to implement equal access to housing, transport, and social venues is so severe that in 2016 the EHRC said it amounts to treating disabled people like ‘second-class citizens’.5 On a practical level, when much of Britain’s housing stock was built, disability access was decades away from being a legal requirement. The friends’ homes that I could not enter throughout my childhood in Lincolnshire – say, a Victorian terrace house – were built during a time in which the idea of someone with a disability wanting a home of their own would have seemed preposterous. The right to an accessible home – and, with it, a certain level of independence and freedom – hardly fits with a society that had next to no expectation that disabled people might ever have a family or income of their own or even be part of society.
But if the lack of access of old homes can be excused as ‘a sign of the times’, the lack of progress in twenty-first-century Britain is surely also reflective of a modern indifference. The same ‘non-disabled’ default that sees shops or transport structures often effectively banning disabled people from using them mirrors a cultural attitude that says it’s perfectly acceptable that disabled people cannot even access their own homes. It appears to speak to that classic belief that disabled people – different, special, abnormal – don’t have the same needs or subsequent rights as other people.
Like much provision for disability, the crisis of inaccessible homes is a postcode lottery. Some local authorities have taken measures to make improvements for disabled residents. In the capital, the London Plan stipulates that the majority of new homes are built to Lifetime Homes standard (the sixteen design criteria intended to make homes more easily adaptable for lifetime use), while Brighton and Hove set requirements to build some accessible homes on large developments only. Talk to a housing officer and the impression is that developers are reluctant to build accessible houses, as they see them as less profitable, and yet most councils do little about it: according to the EHRC, only 3 per cent have taken action against developers for not complying with accessibility regulations.6
In 2018, private housebuilders were caught lobbying councils against building accessible homes for disabled people, in effect actively sabotaging attempts across England to fix new targets to increase accessible housing.7 The Home Builders Federation (HBF), which represents housing firms, including Persimmon, which recorded gross profits of over £560 million in the first six months of 2018, argued that new local planning policies seeking more accessible housing could make it ‘unprofitable to build new homes’.8 Building to a higher accessibility standard, disability organizations note, would cost as little as £500 more.9
The lack of accessible housing is compounded by the fact it is increasingly difficult to obtain the funding to adapt existing inaccessible homes. Local authorities are responsible for providing disabled facilities grants (DFGs) to help disabled people meet the cost of adapting a property, up to a maximum of £30,000 – say, a ramp to get a wheelchair over the step at the front door or installing a stairlift to help them get up to bed. But charities report that these grants are increasingly hard to get from cash-strapped councils, while others are creating near endless delays. There are time limits for how long a disabled person should wait for help in an inaccessible home (current rules mean no disabled person should wait longer than eighteen months to get a decision on a DFG), but by 2015, Leonard Cheshire found at least two-thirds of councils were breaking the law.10 One charity told me of a family who had to wait so long for their council to agree to adapt their home for their disabled daughter that she died while waiting.
Over the coming years, this crisis is only set to increase. It’s estimated by the EHRC that demand for wheelchair-accessible homes will rise by 80 per cent by 2023.11 Increasing the supply of homes, and reviewing how disabled people are treated in the housing system, while gathering – and making available to potential tenants – information about the availability of accessible housing in their local area could all go some way to meet this need, and to enable people with disabilities to secure a home. And yet there is no national planning policy that specifically considers accessible and adaptable housing for disabled people, and as such local authorities have no obligation to make sure they’re delivering the right kind of housing.
Even as politicians make some moves to begin to address Britain’s housing crisis, disabled people will continue to be ignored. When the government released the social housing Green Paper in 2018 – described by Communities Secretary James Brokenshire as a ‘new deal’ for social housing residents – there wasn’t a single mention of accessible housing.12 (It referred to funding to make disabled people’s homes more accessible, and supportive housing for people with learning disabilities and mental health problems.) This erasure of disabled people can be found in all major plans for house building. The Scottish government, for example, will build 50,000 homes by 2021 but, like most local authorities across Britain, there’s no target to ensure a proportion are fit for wheelchair access. Worse still, the average council has little grasp of the scale of the problem. An EHRC inquiry found that only 22 per cent of English councils have an accessible-housing register, meaning that politicians aren’t monitoring provision and disabled people have nowhere to turn in their search for accessible homes.13
Being without a suitable home inevitably has a negative effect on anyone’s life – whether that’s not being able to reach life goals such as having children or the insecurity of finding employment without a permanent address. But for disabled people, this impact can be profound. Research by Mind in 2018 found that nearly 80 per cent of people with mental health problems say a housing situation has caused a mental health problem or made their mental health worse.15
This research didn’t take into account the relationship between physical and mental health but it is not a stretch to consider how debilitating living like this can be on mental well-being. Urinate daily in a bottle because you can’t get your wheelchair in the bathroom and it’s easy to feel you’re losing your dignity. Find yourself housebound because you can’t get out of your flat and a job becomes impossible: the 2016 LSE report found that disabled people living in inaccessible homes are four times more likely to be unemployed.16 Even those without existing anxiety or depression are inevitably made more psychologically vulnerable by a housing crisis. ‘I no longer feel human,’ Robert notes on the impact on him of being trapped in his flat. ‘I feel like I no longer have permission to be part of society … That I’m excluded from any form of dignity or human rights … to be dragged around and caged.’