How many more disabled people will die frightened that their benefits will be taken away?

Karen Sherlock faced endless pressure, the judgement of society, the fear of destitution, the exhaustion of constant assessments and endless forms - all as she battled to survive.

I’m a disability campaigner. I’m not sure I ever set out to be – indeed that anyone does – but that is what I became.

You may have read some of the reasons here. Perhaps you’ve skimmed a few articles on ESA - the Employment & Support Allowance - tutted a shocked tut at cancer patients on chemotherapy sent to the job centre to find work. Perhaps you’ve sat open mouthed at the idea of one of the richest nations on earth arguing over just how terminally ill you need to be to get the gracious sum of £96 per week to survive with at least some dignity.

Maybe you heard that this government believes that for almost all conditions, one year is now considered enough to find work. You may have heard Chris Grayling, the Work and Pensions minister, tell you that it doesn’t matter whether people are better, or if they have found work, we simply can’t afford them any more. Their benefits will be stopped if they have a partner who earns just £7,500 a year or more.

You may have heard of this blind, deaf, tube-fed, non verbal, disabled man deemed fit for work by the DWP, or Jan Morgan, unable to look after herself after a severe stroke yet also told she must seek work. You may have heard of very many others. You may even have found these stories hard to believe. I’m not sure that I would blame you. For if we believe these stories, where do they leave us? Where do they leave claims that we are “protecting the most vulnerable”?

But today, I want to tell you about Karen Sherlock, because she was my friend.

Karen was extremely unwell. Here, in Karen’s own words are her medical conditions:

DIABETIC AUTONOMIC NEUROPATHY (GASTRIC, CAUSING UNPREDICTABLE AND SEVERE DIARRHOEA)

GASTROPAERESIS (CAUSING UNPREDICTABLE AND SEVERE BOUTS OF VOMITING)

DIABETIC RETINOPATHY, PARTIALLY SIGHTED (LOSS OF PERIPHERAL VISION IN BOTH EYES AND SOME CENTRAL VISION IN LEFT EYE)

HEART CONDITION, CHRONIC KIDNEY DISEASE, VITAMIN B12 DEFICIENCY, ANAEMIA, HIGH BLOOD PRESSURE, HIGH CHOLESTEROL, UNDERACTIVE THYROID, CHRONIC TIREDNESS DUE TO COMBINATION OF MULTIPLE MEDICAL CONDITIONS, ASTHMA

I urge you all to read this post, written by Karen just two months ago. It details a process many of us who are sick or disabled know all too well. Apply for ESA, get “assessed” by Atos, the private company charged with making these life or death decisions, get turned down for ESA, found “fit for work” or put in the wrong group, appeal decision, win tribunal, get a new letter demanding you attend another assessment, repeat the entire process until you despair, ground down by the misery.

My ESA is being stopped……………

Now, I have turned over in my mind how they can do this to me. 

Where it is going to leave us money-wise and what we can do about it? The answer is;  I don’t know. 

I am not entitled to a penny more due to having a husband that works too many hours and brings in too much money. I am worried and frightened, I do not see how they can just snatch this away from me. I am chronically ill and I am never going to get better, not even with the transplant will I feel better, all my conditions cannot be magically cured.

Karen faced all of this as she battled just to survive. Endless pressure, the judgement of society, the fear of destitution, the exhaustion of constant assessments and endless forms. She was one of those who’s ESA was time-limited - and what’s more, it was limited retrospectively, leaving her with just a few months to appeal for long term support.

What I want to tell you today is that she was frightened. Terrified in fact. She was terrified of the DWP, almost paralysed by a fear that if she spoke out, they would treat her even more harshly. But she spoke out regardless.

She was scared for her future, scared for her family. She had no idea how they would survive when she lost the little support they relied on. Her husband works, cares for a sick wife and they had “done the right thing”. Do you hear me Ian Duncan Smith? David Cameron? Nick Clegg? Ed Miliband? Her family had done the “right thing”, at least in your narrow world of workers and shirkers.

Despite her own terror, she tried to tell her country, her peers, her friends - even journalists - what was happening to her and thousands like her, but shocked tuts didn’t save her. Open mouths and disgust didn’t save Karen; they didn’t save my friend. Perhaps no one could have, but those who hold and abuse power could have eased her fear or reassured her that they would act.

Karen died on June 8 from a suspected heart attack. I’ll leave you with her own words, from the end of her final post on April 29:

“We need to be passionate about standing up for our rights, and if we can make enough noise, and get enough people to listen then we can overturn the inhumane changes this parasitic government have made.  If nothing else, we do still have hope and our rights on our side.”

Will we listen? Will Karen’s story be the one to convince us that enough is enough? Or will we turn a blind eye, continue to look away?

I hope not. There are dangerous historical precedents.

Sue Marsh is a writer and disability campaigner. She blogs at DiaryOfABenefitScrounger.blogspot.co.uk

Karen Sherlock's Twitter page.
FABRICE COFFRINI/AFP/Getty
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Is Switzerland about to introduce a universal basic income?

A referendum on 5 June, triggered by a 100,000-strong petition, will determine whether the country transforms its welfare state with a monthly no-obligations cash handout available to all.

The Office Cantonal de l’Emploi (OCE), Geneva’s unemployment administration, is what you might expect of a modern bureaucracy. Not exactly Kafka-esque, it moves slowly but rationally: take a ticket, wait your turn, learn which paperwork is missing from your dossier, repeat. Located in a big complex of social administration behind the main train station, the office is busy for a region with an unemployment rate between 5 and 6 per cent, well below the European average. The staff, more like social workers than bureaucrats in dress and demeanour, work hard to reinsert people into the job market: officials can be responsible for over 40 dossiers at a time.

Objectively, Switzerland is a good place to be out of work. For a low-tax country the welfare system is robust. On condition of having worked and paid taxes in the state for over 12 months, a newly-unemployed is assured 70-80 per cent of his previous salary for a period up to 2 years: ample income in a country with some of the highest average wages in the world. In practice, the system is a hybrid between the OCE (which tries to get people back to work) and union-allied social insurance bodies (which take care of monthly payments) and is complex but effective. There are welfare trade-offs – easy firing, expensive healthcare – but Switzerland is far from a free market machine without a safety net.

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It seems strange that such a well-oiled system could soon be obsolete. On 5 June, Switzerland will hold a referendum on an initiative to introduce a universal basic income (UBI): a guaranteed, no-strings-attached, monthly payment of 2,500 Swiss francs (£1,784) for each legal resident. Driven by a popular initiative which collected the requisite 100,000 signatures, the UBI would revamp the welfare state by streamlining its core into this single monthly cash transfer. No more obligations to apply for a certain number of positions per month in order to “qualify” for your handout: you could choose to continue working and earning, or you could lead a life of leisure. The existential fear associated with finding, and maintaining, employment would disappear.

Last month, a “robot rally” was held in Zürich to drum up support for the initiative. Hundreds of badly-disguised campaigners paraded through the city advocating a futuristic social contract between man and machine: according to these robots, as they become more advanced, displacing more and more blue and white-collar jobs, the only solution is a UBI allowing for dignified coexistence. Robots must be our friends, not our foes, they claimed. This common refrain of digital disruption is a core tenet of the campaign and echoes a zeitgeist debate in Switzerland around the future of work and technology. The concept of a “Fourth Industrial Revolution”, championed by Klaus Schwab, Executive Chairman of the Geneva-based World Economic Forum, has risen from soundbite to serious topic. Schwab says that current shifts in AI and connected technologies amount to “nothing less than a transformation of humankind”, one which will need solutions guaranteeing some sort of a minimum-income for all.

A record-breakingly large poster in the Pleine de PlainPalais, Geneva. Photo: Fabrice Coffrini/AFP/Getty

But the ego of an epoch tends to historical self-aggrandisement. Hasn’t technological change always been an issue? In the opening scene of the 1986 Only Fools and Horses episode “Let Sleeping Dogs Lie”, Rodney complains about computers and mass unemployment in Thatcherite Britain: “How many people have been put on the dole by a robot what [sic] can build a car?” Digital advances aside, this is hardly the case in Switzerland, where the average unemployment rate is 3.7 per cent. Che Wagner, spokesman of Basic Income Switzerland, the organisation behind the popular initiative, concedes that the country is not suffering from any “emergency problem”. Yet it is precisely the triad of “political stability, economic wealth and a strong liberal culture of self-determination” which makes Switzerland an ideal testing ground for opening the debate. Whereas welfare politics have traditionally aimed to solve problems, this initiative is a more positive affirmation of how best to organise an affluent society of the future. The key goal is more philosophical than economic; he is determined to “decouple the concepts of labour and self-worth”.

In this sense the initiative is a radical departure from both “welfare-politics-as-usual” and neo-liberal proposals for basic incomes. Che and his colleagues make up an independently-funded, wilfully apolitical group which eschews traditional concepts of left and right. There are no Marxist hangovers in the proposal (“we don’t want to take anything from anybody to give it to somebody else”), yet there is also no indication that they support a radical rationalisation of taxation and wealth creation implied by liberal economists like Milton Friedman. The UBI would not negate certain benefits guaranteed under the current welfare system – disability allowances, for example – and is not Randian model of eradicating poverty to let the wealth creators run free. The core raison d’être is an individualistic, humanist empowerment; any socio-economic reorganisation which would be bound to arise is secondary.

This reflects the messy international debate, which has come on the agenda in recent years and attracted inputs from across the spectrum. Both Yanis Varoufakis and Joseph Stiglitz have voiced approval. Slavoj Žižek, the loud Slovene philosopher of the far left, wants a reconceptualisation of UBI to recognise that “in a knowledge-based economy, collective productivity of the ‘general intellect’ is the key source of wealth” – a similar idea to Paul Mason’s vision of a “post-capitalist” socialism for a digital age. Unsurprisingly, the companies and tech evangelists who reap the largest benefits from this data-based economy are also concerned. Some are researching liberating models of “seed money for everybody” which would have the dual-advantage of reducing annoying government bureaucracy and mitigating the possible backlash against future technological gains. In true internet-emancipatory fashion, they also want to liberate people’s latent creativity by replacing the obligation to work by the incentive to innovate.

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It is difficult to argue with the idea that people should work because they want to, not because they have to. But Swiss referendums are not won and lost on philosophical niceties. Direct democracy depends upon an engaged and pragmatic population which deliberates more earthly concerns: is our society ready for this? What would happen to the Swiss economy? Most importantly, how would it work in practice? Unfortunately for the “yes” side, these matters have proven more difficult to communicate.

One opinion poll conducted in January found that just 2 per cent of the population would quit their jobs if the measure came into effect. This is far from any imagined society of freeloading slackers which people seem to fear (ironically, one-third of the same respondents said that they expected that others would leave their jobs). But in a nation where, like elsewhere, the education system is designed to train people for specific professions and the social expectation is that you are what you work, it is difficult to see beyond a vanguard of creative or entrepreneurial youth who might embrace the freedom. Of course, those working part-time positions paid little more than 2,500 Swiss francs would have little incentive to keep working, but elsewhere it may be business as usual. My local kebab vendor told me that he had been working since he was 14, so he would see no reason to stop now.

What the experiment would do to Swiss GDP is also unclear. According to the initiators of the plan, the extra cost to the exchequer to pay a UBI to all those currently under the 2,500 Swiss franc level would be a meagre SFr18 billion (the federal government puts this at SFr25 billion). This shortfall could be met by imposing a small tax on financial transactions, they suggest. Savings could also be made through the rationalisation of the welfare system, and VAT hikes have also been mooted. Under current conditions, then, the scheme would be feasible. But this is without factoring in various known unknowns: possible outsourcing of some industries due to less competitive wages, or a global reduction in GDP due to many workers reducing - if not eliminating - the hours they work. “A step too far in the right direction2, was how economist Tobias Müller put it recently in the daily Le Temps, echoing the consensus of the Swiss political class.

At the practical individual level, finally, how it would affect the pockets of the Swiss middle class is unclear. For those earning more than the minimum amount, the only difference would be that the first SFr2,500 of their salaries would be “re-packaged” as UBI. Being presumably tax-exempt, the measure therefore would mean an incremental gain but ultimately a maintaining of the status quo. An employee in an international organisation complained to me about the lack of clarity communicated both by the campaign and the government on the initiative: the actual vote hinges on three short constitutional amendments to ensure a “dignified” minimum income for the population, but details are scarce. Although she is “of course in favour” of the suggestion, she will thus vote against it. The middle and upper classes of Swiss society simply haven’t been convinced of the need for such radical change, she said. Who benefits?

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Ultimately, at all levels of politics and society, the strength of the proposal is also its weakness. Its vague, normative nature has attracted interest, but the lack of clarity around how it would work concretely and how it would affect the income of the majority of Swiss people has undercut any chance of success. Current indicators suggest it will be roundly rejected. The always out-on-a-limb Greens are the only political party to announce support. A recent opinion poll found that 72 per cent of the population were opposed to the measure.

The amount of air-time and attention it has received will nevertheless be perceived as a success by proponents. The broad nature of the proposal and the sometimes flamboyant campaign (last week they unveiled the largest campaign poster in history in Geneva (see above); the Guinness Book of Records was on hand) highlighted that their major goal was not to meticulously rewrite Swiss legislation but to kickstart the debate on their terms. The first rule of negotiation theory is to bid high. That the direct democracy system here allows for such radical proposals (whether progressive or lamentable, like some previous votes on immigration) is a boon for the international efforts to raise awareness of this future reordering of welfare.

As referendum season continues elsewhere in Europe, there may be a lesson for campaign strategists. Emotive issues are sure to attract commentary and vocal support, but the silent majority is more pragmatic than they are often given credit. It is one thing to aim for Marx’s vision of an economic system allowing us to “hunt in the morning, fish in the afternoon, rear cattle in the evening, and criticise after dinner”: voters want to know how the hunting rights and fish quotas would operate before signing up.