Protestors against the bedroom tax outside the High Court in February 2014. Photo: Oli Scarff/Getty
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What has happened to the disabled people affected by the Coalition’s welfare reforms?

Frances Ryan revisits previous interviewees to find out how they are coping with the bedroom tax and the changes to benefits like the Disability Living Allowance.

Sitting in their two-bed flat in Southport, Merseyside, a wheelchair cramped up next to a hospital-type bed, Jayson and Charlotte Carmichael have found themselves unlikely figures of the coalition government.

I first spoke to the couple back in February 2013, two months before the bedroom tax – which saw working age social tenants have their housing benefit cut for “under-occupying” their home – would come into force nationwide. The Carmichaels are in many ways reflective of why the policy went on to become the most controversial social security cut of the past five years. Charlotte, 42, has a severe spinal condition and is partially confined to a specialist bed. Sharing an ordinary bed with her husband, Jayson, would cause damage to her permanent pressure sores and their flat, partly adapted for Charlotte’s needs, is too small to put both beds in one room. Despite the fact that Charlotte sleeps there every night, due to her carer also being her live-in partner, from April 2013, the couple began losing £12 a week for having a “spare” room.

Since then, the Carmichaels have been challenging the bedroom tax on two fronts: taking their own case to a local tribunal in a bid to be judged exempt from the policy and going to the Supreme Court, as part of a group case of five families, to overturn the legislation itself. It has been two years of court dates, battles, and exhaustion.

“I have been depressed and sometimes thought enough is enough, we can’t go on anymore. Then we have a small success and I pull myself around and say ‘we have to go on to help others in the same boat, other disabled people’,” Jayson, 52, tells me when we speak again. “I try and use adrenaline to keep going.”

The “small successes” Jayson describes have allowed the couple to so far keep paying the rent. In April 2013, they successfully applied for Discretionary Housing Payments (DHP), the emergency short-term fund designed to assist some disabled people affected by the policy, and by April 2014 – one year on – were deemed fully exempt from the bedroom tax at their local tribunal. But the success proved short-lived. Three months later, the Department for Work and Pensions (DWP) had applied to overturn their win.

“We were over the moon and then when the judge said the DWP had decided to challenge it…we just felt deflated. I didn’t know what to do,” Jayson says. “They won’t let it rest.”

“If the DWP overturn the tribunal ruling, we might be liable for the two year backdated bill,” Jayson adds. “It could be £1, 500.”

This sort of looming threat marks the uncertainty the couple have had to live with over the past two years. Charlotte tells me she thinks about what will happen to her if they’re forced to move to a one-bed flat.

“I’m frightened one day I won’t be able to stay in my home simply through not being able to afford to pay the bedroom tax,” she says. “I’m frightened I’ll be forced to go into a nursing home.”

“Charlotte’s been hit so hard,” Jayson adds, “Much worse with being disabled. Worse than me.”

With the DWP challenging their exemption from the policy, they are pinning their hopes on a Supreme Court win. It will be a long wait. Jayson emails a week later to tell me they have been given their court date: “March NEXT YEAR,” he writes.

“The silver lining on the late date I suppose is that we can hold the next government – if there is a different one – to its promises if they’re a more left wing one,” Jayson adds. “We’re happy to have weathered the fight this long… Two years.”

 

***

 

The long fight is familiar to Pamela and Jim Hardy*. Pamela, 43, has Multiple Sclerosis and is full-time carer to her husband, who has both mental and physical health problems, as well as their ten-year-old daughter, Katie. I first spoke to the family back at the start of last year when – with arrears of £400 – they had watched themselves become a stat in the mounting bedroom tax headlines: the one in seven families affected by the policy being handed an eviction notice.

In their struggle to keep their home, Pamela and Jim Hardy exemplified the complex – often senseless – elements disabled social housing tenants hit by the bedroom tax have had to maneuver: a flawed central government decision to bring in the policy and a local council and/or housing association refusing to offer support.

Settled within their three-bed house, the family had been put in the property seven years ago by their housing association as a “medical move”. Despite this and the fact that both Pamela and Jim’s doctors report their individual conditions mean they need to sleep in separate bedrooms, because they’re married – just as the Carmichaels found – the bedroom tax means the extra room is classified as “spare”.

At less than 50 foot square, it is barely a box room, and legal advisers say it’s illegal to call it a bedroom. Medical test units sit squashed against the bed and a small cupboard is full of boxes of stored medication and controlled drugs that need to be kept locked away. With ten-year-old Katie in the house, there’s nowhere else to safely store it all.

The family had applied for a discretionary housing payment to help cover the rent but, after one short-term approval, the council repeatedly turned them down.

“They said we should work, get a lodger, or look for a smaller house,” Jim, 50, tells me when we speak again in the New Year.

It’s this sort of dire understanding of disability that saw their council also repeatedly count both Jim and Pamela’s Disability Living Allowance (DLA) as “income” when assessing the family’s need for a DHP. This contravenes the principle behind DLA: that it is there to meet the additional costs of disability a person may have in terms of care and mobility and as such, by nature, cannot be viewed as “spare money”. Disabled people struggling to pay the rent while needing money for anything from specialist transport to care assistants end up being seen by local councils as comfortable tenants with spare cash.   

Just last week, a disabled couple successfully challenged their council for using this DLA calculation. In what was said to be a landmark High Court judgment, it was ruled that Sandwell Borough Council's decision to count the disability benefit as income when assessing applications from people affected by the bedroom tax for a DHP was unlawful and amounted to a breach of the Equality Act 2010.  

This ruling may be the first step in tackling what has emerged over the past two years as yet another perverse aspect of the bedroom tax: that disabled people – repeatedly pointed to by the coalition as the intended recipients for DHPs – have actually ended up less likely to receive help than non-disabled tenants. It’s resulted in a two-tier bedroom tax on disability. Already penalised for needing an extra room, they are then penalised for receiving disability benefits.  

It was similar senseless action that, at the same time, saw Pamela and Jim issued with a court date for May 2014 – despite receiving no warning an eviction notice was coming (something their legal advisor says breeched the pre-action for eviction of tenants by social housing providers) and their third DHP application still being processed.

Jim tells me that it was only through turning to legal representation that their eviction was eventually stayed.

“Today we luckily still have our home,” he says. “It was disgraceful how they failed to communicate fairly.”

They’ve since made a formal complaint to their housing association. 

“They tried to close it twice,” Jim says. “They just didn’t accept they had done anything wrong. Really frustrating and not right.” 

But avoiding eviction was little more than temporary relief for the family. The reality of shrinking social security – be it housing, unemployment, or disability care or mobility – is that keeping your ahead above water for a few weeks does nothing to stop the risk of drowning. With the bedroom tax continuing to hit each month and the DHP still being refused, Jim tells me the family resorted to using their DLA to pay the rent extra. It meant siphoning the benefit away from what it was awarded for: extra heating, washing loads, and medical supplements.

“[Our disability benefit] is normally used…to make life and our conditions more easy to manage,” Jim says. “Due to the seriousness of the pain with both of our conditions, many days we’re pretty much house bound [so we use extra heating and washing]. Water bottles are a good extra source of direct pain relief… Kettles are on stand by daily. They’re often used day and night.”

“Due to other personal day and evening problems regarding my condition extra washing loads take place per week,” he adds. “Our bills can be costly.”  

Again, with the help of a solicitor – and the threat to the council of a judicial review on the issue – in May 2014 the family was awarded a DHP for the next year, as well as a back-payment.

This month, with the DHP about to run out, the family find themselves back to where they began: once again applying to the local council for help and waiting to see if they will be able to pay the rent.

“It’s all starting again,” Jim says. “At present, it’s feeling a bit daunting. We’ve heard the amounts for DHPs have been reduced. It’s like a dark cloud’s looming nearby.”

 

***

 

The wait is part of the battle. Jay Henderson, 50, had a stroke in 2013 and her ex-partner, Ken, became her full time carer. The deterioration in Jay’s health was brutal. The stroke left her unable to communicate and with severely restricted movement. She now relies on Ken’s help for basic needs, be it washing or dressing, and preparing food. But it was delays in Jay’s disability benefits being awarded – both Personal Independence Payments (PIP) and Employment and Support Allowance (ESA) – that left them at their “wit’s end”.

When I last spoke to Ken back in February 2014, they had been stuck in the benefit backlog for eight months. Despite the fact the assessment period of ESA should last no more than thirteen weeks, Jay had been left for seven months – having to live on the lower “assessment” rate in the meantime. With no other support coming in, the electricity bill was in arrears and the phone – a lifeline if Jay needed to go to the hospital – was due to be cut off. They were existing on charity food parcels from a local food bank.

“We’re working tirelessly to try to improve Jay’s health and getting to the point when she was getting her benefits was [another] enormous struggle,” Ken, 50, says when we talk again a year later. “The struggle wasn’t only financial but also trying to get any response from the DWP and Atos. We kept getting fobbed off, even with different agencies contacting them on Jay’s behalf and us contacting the head of Atos.” 

“The whole process has taken its toll,” he says.

Jay and Ken are one of the many victims of what has developed into a widespread crisis in the disability benefit system. It’s two years this week since PIP began its rollout to replace DLA, the outgoing benefit to cover care and mobility needs, and the process has been characterized by false rejections, backlogs, and year-long delays – with parliament's public spending watchdog dubbing the government's handling of it “nothing short of a fiasco”. Almost 200,000 disabled and chronically ill people are currently stuck in a backlog waiting to be assessed. This is before a national-roll out has even begun (the DWP have been forced to delay that, as well increase predictions for how long people would have to wait for support or even get an assessment). At the same time, ESA backlogs could take as long as 18 months to clear, according to its new private provider. Maximus, who took over the “fitness to work” contract from Atos last month, say it will have to conduct one million assessments this year – a test MPs call crude, simplistic and a “stressful and anxiety-provoking experience”.

This mass “reform” of the system means, like Jay and Ken, many disabled and chronically ill people are having to simultaneously go through both benefit processes – so, with delays in both, all sources of income are taken at once.  

Ken tells me that despite “many phone calls and emails”, it was in contacting their local MP, Christopher Chope, in March 2014 that they finally got somewhere. Within two weeks, PIP paid out and another two weeks, ESA arrived too.

“We have to thank Christopher Chope but what a shame that’s the route we had to take,” Ken says.

This sort of “last ditch” effort is one I hear from many people going through the coalition’s disability “reforms”, whether it’s writing to local MPs – and hoping for a response – or attempting to gain the attention of someone higher up. Jayson Carmichael tells me a television reporter recently challenged David Cameron on his and Charlotte’s case.

“He said he'd look into it and we did get a letter from him. He said that DHPs were available to vulnerable people,” Jayson says. “We know now Cameron won’t change anything.”

Against a backdrop of media reports – and ministerial rhetoric – of the apparent ease of gaining disability benefits, the reality is often a long, desperate attempt for someone in authority to listen.

Jay Henderson has been battling the process without being able to say more than one or two-word sentences. Her lack of movement in her right side means she’s also unable to write. Ken describes it as her knowing “what she wants to say” but struggling “to express it”. When I speak to them, it is Ken that talks – often attempting to get across what Jay wants to express. Without his help, it’s hard to imagine Jay wouldn’t still be left without state support.

“The system still hasn't changed,” Ken says. “The system is seriously broken and if any company was to operate like this they would surely go out of business. No one is accountable. It's immoral.”

“I feel sorry for the people still going through what we went through. The benefit system’s affecting so many vulnerable people, how can it continue? Iain Duncan Smith should be ashamed but instead tries to justify his actions.”

“Is there a real answer to this problem?” he says. “Things seem to be getting worse.”

*Some names have been changed

Frances Ryan is a journalist and political researcher. She writes regularly for the Guardian, New Statesman, and others on disability, feminism, and most areas of equality you throw at her. She has a doctorate in inequality in education. Her website is here.

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Fitter, dumber, more productive

How the craze for Apple Watches, Fitbits and other wearable tech devices revives the old and discredited science of behaviourism.

When Tim Cook unveiled the latest operating system for the Apple Watch in June, he described the product in a remarkable way. This is no longer just a wrist-mounted gadget for checking your email and social media notifications; it is now “the ultimate device for a healthy life”.

With the watch’s fitness-tracking and heart rate-sensor features to the fore, Cook explained how its Activity and Workout apps have been retooled to provide greater “motivation”. A new Breathe app encourages the user to take time out during the day for deep breathing sessions. Oh yes, this watch has an app that notifies you when it’s time to breathe. The paradox is that if you have zero motivation and don’t know when to breathe in the first place, you probably won’t survive long enough to buy an Apple Watch.

The watch and its marketing are emblematic of how the tech trend is moving beyond mere fitness tracking into what might one call quality-of-life tracking and algorithmic hacking of the quality of consciousness. A couple of years ago I road-tested a brainwave-sensing headband, called the Muse, which promises to help you quiet your mind and achieve “focus” by concentrating on your breathing as it provides aural feedback over earphones, in the form of the sound of wind at a beach. I found it turned me, for a while, into a kind of placid zombie with no useful “focus” at all.

A newer product even aims to hack sleep – that productivity wasteland, which, according to the art historian and essayist Jonathan Crary’s book 24/7: Late Capitalism and the Ends of Sleep, is an affront to the foundations of capitalism. So buy an “intelligent sleep mask” called the Neuroon to analyse the quality of your sleep at night and help you perform more productively come morning. “Knowledge is power!” it promises. “Sleep analytics gathers your body’s sleep data and uses it to help you sleep smarter!” (But isn’t one of the great things about sleep that, while you’re asleep, you are perfectly stupid?)

The Neuroon will also help you enjoy technologically assisted “power naps” during the day to combat “lack of energy”, “fatigue”, “mental exhaustion” and “insomnia”. When it comes to quality of sleep, of course, numerous studies suggest that late-night smartphone use is very bad, but if you can’t stop yourself using your phone, at least you can now connect it to a sleep-enhancing gadget.

So comes a brand new wave of devices that encourage users to outsource not only their basic bodily functions but – as with the Apple Watch’s emphasis on providing “motivation” – their very willpower.  These are thrillingly innovative technologies and yet, in the way they encourage us to think about ourselves, they implicitly revive an old and discarded school of ­thinking in psychology. Are we all neo-­behaviourists now?

***

The school of behaviourism arose in the early 20th century out of a virtuous scientific caution. Experimenters wished to avoid anthropomorphising animals such as rats and pigeons by attributing to them mental capacities for belief, reasoning, and so forth. This kind of description seemed woolly and impossible to verify.

The behaviourists discovered that the actions of laboratory animals could, in effect, be predicted and guided by careful “conditioning”, involving stimulus and reinforcement. They then applied Ockham’s razor: there was no reason, they argued, to believe in elaborate mental equipment in a small mammal or bird; at bottom, all behaviour was just a response to external stimulus. The idea that a rat had a complex mentality was an unnecessary hypothesis and so could be discarded. The psychologist John B Watson declared in 1913 that behaviour, and behaviour alone, should be the whole subject matter of psychology: to project “psychical” attributes on to animals, he and his followers thought, was not permissible.

The problem with Ockham’s razor, though, is that sometimes it is difficult to know when to stop cutting. And so more radical behaviourists sought to apply the same lesson to human beings. What you and I think of as thinking was, for radical behaviourists such as the Yale psychologist Clark L Hull, just another pattern of conditioned reflexes. A human being was merely a more complex knot of stimulus responses than a pigeon. Once perfected, some scientists believed, behaviourist science would supply a reliable method to “predict and control” the behaviour of human beings, and thus all social problems would be overcome.

It was a kind of optimistic, progressive version of Nineteen Eighty-Four. But it fell sharply from favour after the 1960s, and the subsequent “cognitive revolution” in psychology emphasised the causal role of conscious thinking. What became cognitive behavioural therapy, for instance, owed its impressive clinical success to focusing on a person’s cognition – the thoughts and the beliefs that radical behaviourism treated as mythical. As CBT’s name suggests, however, it mixes cognitive strategies (analyse one’s thoughts in order to break destructive patterns) with behavioural techniques (act a certain way so as to affect one’s feelings). And the deliberate conditioning of behaviour is still a valuable technique outside the therapy room.

The effective “behavioural modification programme” first publicised by Weight Watchers in the 1970s is based on reinforcement and support techniques suggested by the behaviourist school. Recent research suggests that clever conditioning – associating the taking of a medicine with a certain smell – can boost the body’s immune response later when a patient detects the smell, even without a dose of medicine.

Radical behaviourism that denies a subject’s consciousness and agency, however, is now completely dead as a science. Yet it is being smuggled back into the mainstream by the latest life-enhancing gadgets from Silicon Valley. The difference is that, now, we are encouraged to outsource the “prediction and control” of our own behaviour not to a benign team of psychological experts, but to algorithms.

It begins with measurement and analysis of bodily data using wearable instruments such as Fitbit wristbands, the first wave of which came under the rubric of the “quantified self”. (The Victorian polymath and founder of eugenics, Francis Galton, asked: “When shall we have anthropometric laboratories, where a man may, when he pleases, get himself and his children weighed, measured, and rightly photographed, and have their bodily faculties tested by the best methods known to modern science?” He has his answer: one may now wear such laboratories about one’s person.) But simply recording and hoarding data is of limited use. To adapt what Marx said about philosophers: the sensors only interpret the body, in various ways; the point is to change it.

And the new technology offers to help with precisely that, offering such externally applied “motivation” as the Apple Watch. So the reasoning, striving mind is vacated (perhaps with the help of a mindfulness app) and usurped by a cybernetic system to optimise the organism’s functioning. Electronic stimulus produces a physiological response, as in the behaviourist laboratory. The human being herself just needs to get out of the way. The customer of such devices is merely an opaquely functioning machine to be tinkered with. The desired outputs can be invoked by the correct inputs from a technological prosthesis. Our physical behaviour and even our moods are manipulated by algorithmic number-crunching in corporate data farms, and, as a result, we may dream of becoming fitter, happier and more productive.

***

 

The broad current of behaviourism was not homogeneous in its theories, and nor are its modern technological avatars. The physiologist Ivan Pavlov induced dogs to salivate at the sound of a bell, which they had learned to associate with food. Here, stimulus (the bell) produces an involuntary response (salivation). This is called “classical conditioning”, and it is advertised as the scientific mechanism behind a new device called the Pavlok, a wristband that delivers mild electric shocks to the user in order, so it promises, to help break bad habits such as overeating or smoking.

The explicit behaviourist-revival sell here is interesting, though it is arguably predicated on the wrong kind of conditioning. In classical conditioning, the stimulus evokes the response; but the Pavlok’s painful electric shock is a stimulus that comes after a (voluntary) action. This is what the psychologist who became the best-known behaviourist theoretician, B F Skinner, called “operant conditioning”.

By associating certain actions with positive or negative reinforcement, an animal is led to change its behaviour. The user of a Pavlok treats herself, too, just like an animal, helplessly suffering the gadget’s painful negative reinforcement. “Pavlok associates a mild zap with your bad habit,” its marketing material promises, “training your brain to stop liking the habit.” The use of the word “brain” instead of “mind” here is revealing. The Pavlok user is encouraged to bypass her reflective faculties and perform pain-led conditioning directly on her grey matter, in order to get from it the behaviour that she prefers. And so modern behaviourist technologies act as though the cognitive revolution in psychology never happened, encouraging us to believe that thinking just gets in the way.

Technologically assisted attempts to defeat weakness of will or concentration are not new. In 1925 the inventor Hugo Gernsback announced, in the pages of his magazine Science and Invention, an invention called the Isolator. It was a metal, full-face hood, somewhat like a diving helmet, connected by a rubber hose to an oxygen tank. The Isolator, too, was designed to defeat distractions and assist mental focus.

The problem with modern life, Gernsback wrote, was that the ringing of a telephone or a doorbell “is sufficient, in nearly all cases, to stop the flow of thoughts”. Inside the Isolator, however, sounds are muffled, and the small eyeholes prevent you from seeing anything except what is directly in front of you. Gernsback provided a salutary photograph of himself wearing the Isolator while sitting at his desk, looking like one of the Cybermen from Doctor Who. “The author at work in his private study aided by the Isolator,” the caption reads. “Outside noises being eliminated, the worker can concentrate with ease upon the subject at hand.”

Modern anti-distraction tools such as computer software that disables your internet connection, or word processors that imitate an old-fashioned DOS screen, with nothing but green text on a black background, as well as the brain-measuring Muse headband – these are just the latest versions of what seems an age-old desire for technologically imposed calm. But what do we lose if we come to rely on such gadgets, unable to impose calm on ourselves? What do we become when we need machines to motivate us?

***

It was B F Skinner who supplied what became the paradigmatic image of ­behaviourist science with his “Skinner Box”, formally known as an “operant conditioning chamber”. Skinner Boxes come in different flavours but a classic example is a box with an electrified floor and two levers. A rat is trapped in the box and must press the correct lever when a certain light comes on. If the rat gets it right, food is delivered. If the rat presses the wrong lever, it receives a painful electric shock through the booby-trapped floor. The rat soon learns to press the right lever all the time. But if the levers’ functions are changed unpredictably by the experimenters, the rat becomes confused, withdrawn and depressed.

Skinner Boxes have been used with success not only on rats but on birds and primates, too. So what, after all, are we doing if we sign up to technologically enhanced self-improvement through gadgets and apps? As we manipulate our screens for ­reassurance and encouragement, or wince at a painful failure to be better today than we were yesterday, we are treating ourselves similarly as objects to be improved through operant conditioning. We are climbing willingly into a virtual Skinner Box.

As Carl Cederström and André Spicer point out in their book The Wellness Syndrome, published last year: “Surrendering to an authoritarian agency, which is not just telling you what to do, but also handing out rewards and punishments to shape your behaviour more effectively, seems like undermining your own agency and autonomy.” What’s worse is that, increasingly, we will have no choice in the matter anyway. Gernsback’s Isolator was explicitly designed to improve the concentration of the “worker”, and so are its digital-age descendants. Corporate employee “wellness” programmes increasingly encourage or even mandate the use of fitness trackers and other behavioural gadgets in order to ensure an ideally efficient and compliant workforce.

There are many political reasons to resist the pitiless transfer of responsibility for well-being on to the individual in this way. And, in such cases, it is important to point out that the new idea is a repackaging of a controversial old idea, because that challenges its proponents to defend it explicitly. The Apple Watch and its cousins promise an utterly novel form of technologically enhanced self-mastery. But it is also merely the latest way in which modernity invites us to perform operant conditioning on ourselves, to cleanse away anxiety and dissatisfaction and become more streamlined citizen-consumers. Perhaps we will decide, after all, that tech-powered behaviourism is good. But we should know what we are arguing about. The rethinking should take place out in the open.

In 1987, three years before he died, B F Skinner published a scholarly paper entitled Whatever Happened to Psychology as the Science of Behaviour?, reiterating his now-unfashionable arguments against psychological talk about states of mind. For him, the “prediction and control” of behaviour was not merely a theoretical preference; it was a necessity for global social justice. “To feed the hungry and clothe the naked are ­remedial acts,” he wrote. “We can easily see what is wrong and what needs to be done. It is much harder to see and do something about the fact that world agriculture must feed and clothe billions of people, most of them yet unborn. It is not enough to advise people how to behave in ways that will make a future possible; they must be given effective reasons for behaving in those ways, and that means effective contingencies of reinforcement now.” In other words, mere arguments won’t equip the world to support an increasing population; strategies of behavioural control must be designed for the good of all.

Arguably, this authoritarian strand of behaviourist thinking is what morphed into the subtly reinforcing “choice architecture” of nudge politics, which seeks gently to compel citizens to do the right thing (eat healthy foods, sign up for pension plans) by altering the ways in which such alternatives are presented.

By contrast, the Apple Watch, the Pavlok and their ilk revive a behaviourism evacuated of all social concern and designed solely to optimise the individual customer. By ­using such devices, we voluntarily offer ourselves up to a denial of our voluntary selves, becoming atomised lab rats, to be manipulated electronically through the corporate cloud. It is perhaps no surprise that when the founder of American behaviourism, John B Watson, left academia in 1920, he went into a field that would come to profit very handsomely indeed from his skills of manipulation – advertising. Today’s neo-behaviourist technologies promise to usher in a world that is one giant Skinner Box in its own right: a world where thinking just gets in the way, and we all mechanically press levers for food pellets.

This article first appeared in the 18 August 2016 issue of the New Statesman, Corbyn’s revenge