Rebecca Baker at home.
Some days you don’t feel like getting out of bed. Rebecca Baker gets those feelings, too. For most of us, it’s a too-late night or too many drinks, an infant crying at 3 a.m., or a lack of caffeine to jump-start our day. For Baker, it’s because her hip or her arm or her shoulder is dislocated out of its socket and pain is coursing through her body.1 But she does get up. She pops her joints back into place, feeds her rabbits, and walks her dogs.
Baker, 26, has Ehlers-Danlos Syndrome and syringomyelia. The former, estimated to afflict one in every 5,000 people, is responsible for the loose, painful joints, and is also called arthrochalasia. The latter is caused by a cyst — or a syrinx, to give it its proper technical term — of spinal cord fluid leaking into the spinal column and pressing down on the cord itself. It’s resulted in Baker being left an incomplete paraplegic. She manages to joke about her syrinx, naming the lump that leaves her unable to move “Dave.”
Baker’s whip-smart and has a wicked sense of humor.2 She paints, pens poems, and shares recipes with friends and followers. Politically, she’s so far from the current, mainly Conservative (center-right) UK government that the two may as well be speaking different languages. She lives with her husband and animals — one dog, welcomed into the family in the past few months, is also disabled — in Gloucestershire, England.
Her partner is an enormous help: dressing her wounds, helping around the home, and offering words of support when bouts of depression take hold. From the outside looking in, Baker has a creative mind that buzzes with ideas just waiting to take flight. The problem is that her body can’t keep up.
Some days Louise Bolotin, a 52-year-old journalist, doesn’t feel all that great, either. She had suffered seizures during sleep for a year and a half before she saw a doctor about it; this led to a diagnosis of epilepsy in 1997. Though when we spoke her epilepsy was comparatively under control, it can come on without warning. For half a week following an attack, Bolotin can be bedridden, unable to cook for herself; she lives alone. After a fit, it feels like you’ve been kicked by a horse, she says.
“On a day-to-day basis, I don’t need a carer to come around, get me out the bath, feed me, things like that,” she explains, “but once I’ve had a seizure, I do need help. It’s to manage those things I really shouldn’t be managing on my own.”
Bolotin’s disability seriously hinders her work. As a well-respected journalist for the UK’s Guardian newspaper, she has to travel; under UK driving legislation, she can’t get behind the wheel.
Gaining a voice
Too often the disabled are referred to as whatever illness they have, rather than as who they are. They’re held up as inspirations simply for getting on with life. We classify disabilities, not people — and, too often, people class the disabled as sub-human. “You sort of disappear into the background unless you’re willing to kick up a lot of fuss,” explains Baker.
Baker and other people in the same situation have found a space on the Internet, Twitter in particular, to talk freely about disability without undue judgment, sympathy, or pity.
Baker tried Twitter a few years back and found little joy: she closed her first account with a handful of followers and confusion over its exact purpose. But she returned, and began finding a group of similar people who were campaigning in their own small way against injustices they saw in society. Baker has played a fundamental role in @EverydayAbleism, taking on the administration of the Twitter account from David Griffin, with whom she set up a campaigning group.
One rallying point was a hashtag — #heardwhilstdisabled — through which disabled people shared experiences of prejudice against them. When Griffin stopped using Twitter, Baker took on more of the curating role involved with the account: eavesdropping on conversations on Twitter and retweeting them to spread awareness.
A spell of bad health coincided with a step back from Everyday Ableism, until in the spring of 2013 Baker brought it back to life. She says she couldn’t let the account wither away because “things had been getting so much worse for disabled people in this country it seemed like a missed opportunity to help others understand just how difficult it can be.”
PIP PIP, hooray?
Bolotin’s and Baker’s lifeline, financial support that helps them pay for palliative care and for a life lived without the ability to work, is under threat. Like many European governments, the UK’s Conservative-dominated coalition has opted for austerity in the face of financial meltdown and is making large cuts to public service under that mantle.
The government was concerned that by 2018 one in 17 people could have been claiming disability benefits were it not to effect a change. It has planned to reduce the amount it pays to working-age disabled from £7.5 billion in 2011/12 to £6.9 billion in 2015/16.3 That tightening of purse strings comes with a tightening of rules.
“The only way to cut costs is to make it more difficult to claim,” says Bolotin. In the UK, 3.25 million people claimed Disability Living Allowance (DLA) in November 2012, according to some of the latest figures made available by government.4 Similar government stats show that 0.5% of DLA claims are fraudulent.
The government has hired two firms to carry out disability tests that allow people to qualify for a new kind of financial support, called the Personal Independence Payment (PIP), introduced in April 2013.
Stephen Duckworth, a medical doctor, is the chief executive of Capita, one of those companies, and has stated he believes that “at least a million” people classed as disabled ought not to be receiving money. The million he believes unworthy of financial support “have got there through system failure and the way society is organized,” he told the Sunday Times. Duckworth is disabled, and claims DLA. He says that DLA has pushed too many capable people out of the workforce by offering them an alternative.
Baker and Bolotin, among many, say the burden of proof required for PIP is now too high, where it may once have been too lax for DLA. Scope, a disability charity, fears that 600,000 people in all will lose their financial support from government.5
“It’s a square peg in a round hole,” explains Bolotin. “Not all disabilities are the same. There’s no flexibility in it. Realistically, I’m going to lose my allowance when the transfer to PIP comes.” She took a mock assessment similar to the type being used under PIP. The threshold for the test is 15 points: “I scored six out of 15.”
“Every day is different,” Baker writes via email to me. “There’s times when each of my problems intersect; as an example, the other day my spinal cord issues flared up, causing me to feel like my legs were burning. I was in a really weird mood where I was severely anxious and irritated. My mood was made worse, productivity went down, pain tolerance decreased due to stress, ended up in bed doing nothing. Sad as it is, the sofa’s pretty much been my life for around a year now.”
Speaking out online
Though Baker may not be able to campaign door to door, she can help efforts against what she sees as the injustice that the government is bringing by altering the disability system. “Generally, disabled people don’t have the income to travel to places. We don’t have the health to, either,” she says in a subsequent phone conversation. “So we’ve adapted the way we get word out. We’ve found a way to do it.”
Baker may never find someone with similar disabilities to her by walking down the street (on the days she can walk). On Twitter she can — and share advice, support, and kind words, even if often she has to use speech-to-text software to avoid the medicated fug that can block her thoughts as they make their way from her head to her fingertips. Indeed, she’s found more than 100 people in the UK with Ehlers-Danlos Syndrome. And through the Web site, word about the changes to disability benefit payments has spread.
“I find it frustrating because the only way I can make a change is to join the online conversation,” Baker writes. “More positively, though, I can join the conversation.” But there’s only so much campaigning you can do online: now people are taking it into the real world.
A nationwide protest at assessment centers run by Atos, the other disability benefit assessment company contracted by the government, has been organized through Twitter. On February 19, campaigners will take their discussions offline and onto the streets, protesting what they feel is a bungled process.
Certainly, the government’s plans are not going smoothly. By late October 2013 all disability claimants were meant to be on the new PIP register. The switchover was “taking longer than expected,” said Work and Pensions Minister Mike Penning when the deadline was missed. His opposition minister, Rachel Reeves, said that the process “risk[ed] descending into farce.”
The government has subsequently removed any deadline, and the problems appear to have compounded. A whistleblower at Capita warned that the process was understaffed, under-resourced, and disorganized. Atos, the other PIP assessor, was forced to deny that a shortage of doctors was delaying its processing of applications. Earlier this week, representatives of the two companies were called in front of the House of Commons Public Administration Select Committee, where they were lambasted by parliamentarians, and asked if their reputation was “damaged for good.”
Meanwhile some of those caught between the DLA and PIP programs during the changeover have been forced to move house and sell clothing to try to make ends meet absent benefit payments.
Falling without a net
Both Bolotin and Baker, unprompted, bring up their biggest fear: the near-silent sound of a brown envelope dropping through their letterbox, calling them in for an assessment that has been designed to cull one-fifth of its claimants. It’s something that affects the two women, one half the age of the other, and countless others of all genders, races, and ages.
“It puts fear into people because of the way the system is at the moment,” says Bolotin. “Support is being taken away from people who really need it. Those of us who don’t even feel that vulnerable are at risk of losing money that we really need.”
Baker agrees: “Disabled people are the easiest to remove support from,” she says. “They’re the ones most reliant on the support — social care, housing, things like that.6 If you threaten to withdraw that, who do they turn to? There’s no one to complain to. They can’t really complain.”
Baker has pored over legislation and called on the wisdom of the crowd to unpick the language, plotting out exactly how slight changes to laws will affect her and the nearly four million others claiming these benefits. Twitter has acted as a great Roman forum, a people’s plenum for those who 10 or 20 years ago might have been forced to unpack the complex legislation alone. Bolotin interacts with the community and also advises people offline, helping out those worrying about the effect disability benefits will have on their lives. In the short term, it will mean less money to ensure quality of life.
The long-term effects of the change in the benefits system are not limited to less money, however. It can and may have a deleterious effect on the health of those most reliant on the National Health Service.
A survey of 4,000 disabled people polled by the Disability Benefits Consortium, a campaign group comprising 50 charities and companies, found that the majority were anxious about the changes to the system. They have good reason to be: some of them will find that they slip the support net due to tighter testing. More than half say they have become sicker through worry. Twitter can supply a support network and comforting words, but it can’t necessarily undo all human neuroses.
Ask Baker why the cuts are happening, and she’ll give you a forthright answer, arising from cold experience. “It’s all ideological,” she argues. “It’s not meant to save the country money or help disabled people at all. And we don’t know what’s coming next.”
Photo courtesy of Rebecca Baker.
One tweet from the start of September 2013 simply read, “Nrgh, rib has popped out. Trying really hard not to rely on the morphine, it’s not helping.” ↩
Baker was approached by Glenn Fleishman, the editor of The Magazine, to write her own story, in her own words, for the publication. Various issues — not least that Baker could not take payment for any potential work while claiming disability benefits — prevented her from doing so. ↩
Baker and Bolotin both make the argument that there are some red lines when it comes to funding cuts. In order to downsize a budget for the permanently ill, parties have to make difficult decisions, including withholding much-needed money. ↩
That’s a threefold increase from 1992, when the scheme was introduced. ↩
Government figures from the Department of Work and Pensions (DWP) say that 450,000 people will likely be classed as ineligible for PIPs by 2018. 780,000 claimants will receive either the same amount as or more than they do under the DLA, DWP say. ↩
Three-quarters of those claiming the old DLA live in social housing, which has been cut by government. A “bedroom tax,” or spare room penalty aimed at taxing unused rooms in homes, affects more disabled people proportionally. Two-thirds of those eligible to pay the tax are disabled. ↩
Chris Stokel-Walker is a UK-based freelance writer for the Economist, the Sunday Times, the BBC, and BuzzFeed.