Is Labour abolishing illness?

The new rules on incapacity benefit stake everything on a major gamble: that a large proportion of c

Incapacity benefit has become one of this year's favourite scare stories. Hardly a day passes without a new headline deploring its soaring costs and the rising numbers of claimants who get "something for nothing", at the expense of decent, hardworking taxpayers. We are told that we are footing an outrageously escalating bill for 2.4 million people, a million of whom shouldn't be on the benefit at all, and each successive work and pensions minister vows to be more ruthless than the last.

The true picture is somewhat different. The unreported version, which can be culled from Department for Work and Pensions (DWP) data, is that only 1.4 of the 2.4 million actually receive any payment, the rest get national insurance credits only, and numbers have been falling since 2003. The basic benefit is worth barely £3,000 a year. After two small rises in the first year there is no further increase, other than index-linking. All those who get the benefit have to pass a rigorous "personal capability assessment" (PCA) with doctors appointed by the DWP; and they can be re-examined at any time. The audited estimate of fraud is under 1 per cent - the lowest of any part of the social security system.

Nonetheless, the 2007 Welfare Reform Act is now being implemented across the country. It replaces support, as of right, for illness/disability (one of the planks of our rapidly disappearing welfare state) with a new, conditional employment and support allowance. Claimants are held on a basic allowance until it is confirmed that their capability for work is limited. This is determined by a "work capability assessment" tougher than the old PCA. Those deemed capable of one day returning to work (and the arbiters are health professionals rather than doctors) must engage in a series of "work-focused" interviews and activities. These include, among other things, "condition management", which in practice is likely to consist of group sessions loosely based on cognitive behavioural therapy. All this brings an additional slice of benefit that can, however, be cut for those who do not engage in it without "good cause" - a potential loss of 40 per cent of income. Ultimately, any whose capability for work remains limited through failing to follow medical advice, or "any prescribed rules of behaviour", face a period of disqualification. (A further provision of the act, to be piloted in nine areas, is that people served with Asbos - antisocial behaviour orders - can face cuts in their housing benefit for refusing local authority offers "to help address any problem behaviour".)

A main selling point of the reform was the great savings it would bring. It would staunch the outflow of benefits and get many people into jobs where they would pay tax and provide for their old age. This government's cherished goal is an employment rate of 80 per cent of the working-age population - though it is difficult to find any reasoned argument in support of this since our present rate of 75 per cent is, with Canada's, the highest in the world. The government accepts that employers must be paid to take on people with an illness record and, for the time being, it has pledged not to cut the benefits of existing claimants. Any immediate savings, therefore, can only come from bumping as many as possible off the benefit, shaving future benefit levels (already well in hand), and making it harder for newcomers to get it in the first place. Delivery is being farmed out to private agencies paid by results - which means, of course, the setting of targets. The next few years will be a bad time to have a crippling accident or succumb to a serious disease, particularly a psychiatric or neurological one that does not have obvious outward symptoms.

Blaming the "cheats"

The reform of incapacity benefit has been over ten years in the making, leaving in its wake a dense trail of commissioned reports. A curious thing about this voluminous material is how little information it contains on the actual health conditions for which benefit is paid. This is no accident, for the reformers long ago made up their minds that claimant numbers are too high, therefore a large proportion - usually put between a third and a half, but lately upped to 70 per cent in some quarters - must be spurious. An appeal to history is repeated like a mantra that, back in 1979, only 700,000 claimed the old sickness/invalidity benefits. Since then, money has been poured into the NHS while health care, living standards and longevity have improved beyond all expectations. People must be healthier, which proves that huge numbers are exploiting a slack and obsolete system. Who is to blame, apart from outright cheats? It can only be the self-indulgent, who fancy themselves sicker than they really are, and complacent GPs who let them think they are too ill to work.

Crucially, the reformers bracketed illness with disability. The disability lobby had long argued that "disability" was a discriminatory label imposed by society, and it was bent on removing the barriers to work that excluded those so labelled and kept them in poverty. But the bracketing brought confusions - for those with disabilities may be extremely fit (consider the disabled athlete), whereas the able-bodied can be extremely ill. More confusion arises with conditions such as "stress", "anxiety" and "chronic fatigue" that sound trivial. As for "back pain", how unreasonable is it to take time off sick for something best dealt with by a stiff upper lip and the odd aspirin? It is easy for those in good health to pooh-pooh such things, agreeing with the government that "Work is the best therapy".

The government's declared mission is to "liberate" claimants, to bring them into its "reformed, coherent welfare state for the 21st century". It seeks to overturn a culture based on the "medical model" of illness that allows them to "drift" on to long-term benefits without realising that "symptoms, feeling unwell, sickness and incapacity are not the same" - hence the appeal of cognitive behavioural therapy, which it understands as a treatment that will talk the sick into believing they can lead normal lives.

Doctors - so often the refuge of desperate people trying to find out what is wrong with them - should as far as possible be excluded from the process. Even those working for the DWP have opinions that are "unfounded, of limited value and counter-productive", while GPs are "unaware of the importance of work, the absence of which leads to depression, poor health, higher rates of suicide and mortality, poverty, and social exclusion". (The quotations are from a 2005 study from the Unum Provident Centre for Psychosocial and Disability Research at Cardiff University, whose ideas and rhetoric infuse the reform. Unum Provident is an American firm, the largest disability insurance company in the world, which is currently in litigation in different countries for refusing to pay out on some of its policies.) A private agency has now taken over the running of its first GP surgery here, and doctors dealing with disability living allowance are advised not to invite patients to explain how their condition affects them.

Features of the reform are familiar from other policy areas. First, a demonisation of a needy or vulnerable group, followed by a rebranding: so claimants become not even "clients" but "customers" (as in the just published "Commissioning Strategy" document); incapacity benefit becomes employment and support allowance; sick notes are redrafted for doctors to certify, not what patients can't but what they can do. Next come "partnerships", on an unchallenged assumption that the public sector has failed. The new system is farmed out to for-profit or non-profit-making agencies paid by results. This entails targets, and where targets are set, sanctions follow, for any who "fail to recover".

There are features of the new programme that look intelligent and humane, doubtless owing much to the efforts of the disability lobby. They include a longer and more flexible bridging period (and a back-to-work grant) between benefits and work, and a broader view of "work- focused" activities. The crunch will come with those described as not able or prepared to engage "because [of] the nature and severity of their health condition, or more a matter of attitudes, perceptions and expectations which may or may not be accurate . . . It is a question of what the claimant cannot do vs what they will not do."

For the reform stakes everything on a gamble: that a large proportion of claimants, present and to come, are fit enough to work. There seems no way of proving or disproving this, other than trying it out, at the risk of much waste of public money, and much personal grief. Deliberate rejection of the "medical model" deprives us of all we might have learned (from the wealth of data available) of the impact of illness on our society.

I have scratched my head long and hard over this reform (among other things sending out lengthy submissions to all concerned during the long consultation phase in 2005-2006) because so much in its theory and rhetoric contradicts my own experience: of chronically and seriously ill family members and friends, of several years as a Mind volunteer, and further years of peripheral involvement in action groups for chronic fatigue conditions. All this has indelibly impressed me with the courage of many who live with horrible complaints, the sheer hard work involved in their day-to-day coping, their relentless search for any amelioration, let alone cure, often at costs hard to spare from limited resources.

I have witnessed, too, and at close quarters, the hurt and stress of living difficult lives as people have to do, in a perpetual culture of disbelief and threat, where some of the most valiant are blamed for their conditions and conflated with the alleged "can't work, won't work" unemployed. For the message of the reform that comes across, for all its fashionable rhetoric, is that a person is valued only as a productive unit. Compassionate cases aside, those too ill to work are outside society and money spent on them is wasted. Sickness, disablement and inability to work have no place in a modern society - they can't and shouldn't be afforded.

No one pretends that illness is not a blight, imposing personal and social costs going far beyond the financial; but - pace the government - no one as yet knows how to remove it from the human condition. Why waste valuable time and resources on an ill-founded reform, when they could instead be used to further understanding of the real impact of illness on our society?

Alison Ravetz is a professor emeritus of Leeds Metropolitan University who writes on housing policy and welfare reform

This article first appeared in the 05 May 2008 issue of the New Statesman, High-street robbery

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Tweeting terror: what social media reveals about how we respond to tragedy

From sharing graphic images to posting a selfie, what compels online behaviours that can often outwardly seem improper?

Why did they post that? Why did they share a traumatising image? Why did they tell a joke? Why are they making this about themselves? Did they… just post a selfie? Why are they spreading fake news?

These are questions social media users almost inevitably ask themselves in the immediate aftermath of a tragedy such as Wednesday’s Westminster attack. Yet we ask not because of genuine curiosity, but out of shock and judgement provoked by what we see as the wrong way to respond online. But these are still questions worth answering. What drives the behaviours we see time and again on social media in the wake of a disaster?

The fake image

“I really didn't think it was going to become a big deal,” says Dr Ranj Singh. “I shared it just because I thought it was very pertinent, I didn't expect it to be picked up by so many people.”

Singh was one of the first people to share a fake Tube sign on Twitter that was later read out in Parliament and on BBC Radio 4. The TfL sign – a board in stations which normally provides service information but can often feature an inspiring quote – read: “All terrorists are politely reminded that THIS IS LONDON and whatever you do to us we will drink tea and jolly well carry on thank you.”

Singh found it on the Facebook page of a man called John (who later explained to me why he created the fake image) and posted it on his own Twitter account, which has over 40,000 followers. After it went viral, many began pointing out that the sign was faked.

“At a time like this is it really helpful to point out that its fake?” asks Singh – who believes it is the message, not the medium, that matters most. “The sentiment is real and that's what's important.”

Singh tells me that he first shared the sign because he found it to be profound and was then pleased with the initial “sense of solidarity” that the first retweets brought. “I don't think you can fact-check sentiments,” he says, explaining why he didn’t delete the tweet.

Dr Grainne Kirwan, a cyberpsychology lecturer and author, explains that much of the behaviour we see on social media in the aftermath of an attack can be explained by this desire for solidarity. “It is part of a mechanism called social processing,” she says. “By discussing a sudden event of such negative impact it helps the individual to come to terms with it… When shocked, scared, horrified, or appalled by an event we search for evidence that others have similar reactions so that our response is validated.”

The selfies and the self-involved

Yet often, the most maligned social media behaviour in these situations seems less about solidarity and more about selfishness. Why did YouTuber Jack Jones post a since-deleted selfie with the words “The outmost [sic] respect to our public services”? Why did your friend, who works nowhere near Westminster, mark themselves as “Safe” using Facebook’s Safety Check feature? Why did New Statesman writer Laurie Penny say in a tweet that her “atheist prayers” were with the victims?

“It was the thought of a moment, and not a considered statement,” says Penny. The rushed nature of social media posts during times of crisis can often lead to misunderstandings. “My atheism is not a political statement, or something I'm particularly proud of, it just is.”

Penny received backlash on the site for her tweet, with one user gaining 836 likes on a tweet that read: “No need to shout 'I'm an atheist!' while trying to offer solidarity”. She explains that she posted her tweet due to the “nonsensical” belief that holding others in her heart makes a difference at tragic times, and was “shocked” when people became angry at her.

“I was shouted at for making it all about me, which is hard to avoid at the best of times on your own Twitter feed,” she says. “Over the years I've learned that 'making it about you' and 'attention seeking' are familiar accusations for any woman who has any sort of public profile – the problem seems to be not with what we do but with who we are.”

Penny raises a valid point that social media is inherently self-involved, and Dr Kirwan explains that in emotionally-charged situations it is easy to say things that are unclear, or can in hindsight seem callous or insincere.

“Our online society may make it feel like we need to show a response to events quickly to demonstrate solidarity or disdain for the individuals or parties directly involved in the incident, and so we put into writing and make publicly available something which we wrote in haste and without full knowledge of the circumstances.”

The joke

Arguably the most condemned behaviour in the aftermath of a tragedy is the sharing of an ill-timed joke. Julia Fraustino, a research affiliate at the National Consortium for the Study of Terrorism and Responses to Terrorism (START), reflects on this often seemingly inexplicable behaviour. “There’s research dating back to the US 9/11 terror attacks that shows lower rates of disaster-related depression and anxiety for people who evoke positive emotions before, during and after tragic events,” she says, stating that humour can be a coping mechanism.

“The offensiveness or appropriateness of humor seems, at least in part, to be tied to people’s perceived severity of the crisis,” she adds. “An analysis of tweets during a health pandemic showed that humorous posts rose and fell along with the seriousness of the situation, with more perceived seriousness resulting in fewer humour-based posts.”

The silence

If you can’t say anything nice, why say anything at all? Bambi's best friend Thumper's quote might be behind the silence we see from some social media users. Rather than simply being uncaring, there are factors which can predict whether someone will be active or passive on social media after a disaster, notes Fraustino.

“A couple of areas that factor into whether a person will post on social media during a disaster are issue-involvement and self-involvement,” she says. “When people perceive that the disaster is important and they believe they can or should do something about it, they may be more likely to share others’ posts or create their own content. Combine issue-involvement with self-involvement, which in this context refers to a desire for self-confirmation such as through gaining attention by being perceived as a story pioneer or thought leader, and the likelihood goes up that this person will create or curate disaster-related content on social media.”

“I just don’t like to make it about me,” one anonymous social media user tells me when asked why he doesn’t post anything himself – but instead shares or retweets posts – during disasters. “I feel like people just want likes and retweets and aren’t really being sincere, and I would hate to do that. Instead I just share stuff from important people, or stuff that needs to be said – like reminders not to share graphic images.”

The graphic image

The sharing of graphic and explicit images is often widely condemned, as many see this as both pointless and potentially psychologically damaging. After the attack, BBC Newsbeat collated tens of tweets by people angry that passersby took pictures instead of helping, with multiple users branding it “absolutely disgusting”.

Dr Kirwan explains that those near the scene may feel a “social responsibility” to share their knowledge, particularly in situations where there is a fear of media bias. It is also important to remember that shock and panic can make us behave differently than we normally would.

Yet the reason this behaviour often jars is because we all know what motivates most of us to post on social media: attention. It is well-documented that Likes and Shares give us a psychological boost, so it is hard to feel that this disappears in tragic circumstances. If we imagine someone is somehow “profiting” from posting traumatic images, this can inspire disgust. Fraustino even notes that posts with an image are significantly more likely to be clicked on, liked, or shared.

Yet, as Dr Kiwarn explains, Likes don’t simply make us happy on such occasions, they actually make us feel less alone. “In situations where people are sharing terrible information we may still appreciate likes, retweets, [and] shares as it helps to reinforce and validate our beliefs and position on the situation,” she says. “It tells us that others feel the same way, and so it is okay for us to feel this way.”

Fraustino also argues that these posts can be valuable, as they “can break through the noise and clutter and grab attention” and thereby bring awareness to a disaster issue. “As positive effects, emotion-evoking images can potentially increase empathy and motivation to contribute to relief efforts.”

The judgement

The common thread isn’t simply the accusation that such social media behaviours are “insensitive”, it is that there is an abundance of people ready to point the finger and criticise others, even – and especially – at a time when they should focus on their own grief. VICE writer Joel Golby sarcastically summed it up best in a single tweet: “please look out for my essay, 'Why Everyone's Reaction to the News is Imperfect (But My Own)', filed just now up this afternoon”.

“When already emotional other users see something which they don't perceive as quite right, they may use that opportunity to vent anger or frustration,” says Dr Kirwan, explaining that we are especially quick to judge the posts of people we don’t personally know. “We can be very quick to form opinions of others using very little information, and if our only information about a person is a post which we feel is inappropriate we will tend to form a stereotyped opinion of this individual as holding negative personality traits.

“This stereotype makes it easier to target them with hateful speech. When strong emotions are present, we frequently neglect to consider if we may have misinterpreted the content, or if the person's apparently negative tone was intentional or not.”

Fraustino agrees that people are attempting to reduce their own uncertainty or anxiety when assigning blame. “In a terror attack setting where emotions are high, uncertainty is high, and anxiety is high, blaming or scapegoating can relieve some of those negative emotions for some people.”

Amelia Tait is a technology and digital culture writer at the New Statesman.