Constant fear, routine humiliation, no escape: this isn't prison, but life on incapacity benefit in the United Kingdom. There is another way: one that respects human dignity.
I earn my living asking intrusive questions. Do you wash in the morning? Any problems with bowels? How long does it take you to walk 30m? Do you self-harm? Can I see your last 3 months’ bank statements?
I don’t just do it once. I usually launch in with another lot. Can you cope with going alone to places you know? Why not? How bad is your incontinence? Do you get aggressive with other people? Do you understand why they’re upset?
I’m a benefits adviser at a Citizens Advice Bureau. The first questions come with the Disability Living Allowance claim, and the second with Employment & Support Allowance, the replacement for incapacity benefit. DLA has to be renewed anywhere between 6 months and an indefinite period, ESA at six-monthly to three-yearly intervals.
Because I’m funded by legal aid, I have to check clients’ incomes and savings, even when working on non-means-tested benefits. There is nothing optional about any of this. These forms are the gateway to the only money my clients have.
Part of the job is to try to find some shared humour. If humanly possible, people should leave a Citizens Advice Bureau with their morale boosted by a sense of human solidarity, based in respect for them as equals. For any adult, self-respect is a need secondary only to a basic income and home; yet it is poisoned by these claim forms.
One day last week stands out. Two women, very different from each other (spiky orange hair and wavy grey curls); both capable, self-contained; neither obvious suicide risks. One struggles with severe chronic depression and social phobia, the other with fibromyalgia (an incurable condition, its cause uncertain, involving pain and sensitivity all over the body along with fatigue and other symptoms.)
Both, unnervingly, came out with an almost identical phrase. They wished for death but felt unable to seize it because they would thereby ‘pass the pain on’, one to her adult children and the other to her cats and dog. These, her only effective family, would have to return to the animal shelter.
Both women long to return to employment. Like so many others, they suffer the prisoner’s hell of feeling their abilities beating at the walls that cage them – when they’re not too tired to feel anything at all. But realistically speaking, jobs aren’t possible; not now, and not foreseeably. They work as hard and unremittingly as any hero of the outside world, but their labour is consumed by managing their daily lives.
For them to survive, therefore – to use a factual rather than hyperbolic phrase – these forms are unavoidable. It’s an anxious process, since depression and fibromyalgia like all invisible disabilities are hard to prove. Being turned down and having to appeal is routine. Such anxiety is their norm, for benefits never ‘secure’ an income. Any change of circumstances, real or imagined by Job Centre Plus, or any glitch in the Job Centre Plus computers, means the money (plus the housing benefit) stops. There aren’t any savings against a rainy day, but the rain just keeps on coming.
In the outside world, ‘securing’ an income is associated, however tenuously, with demonstrable capacities. In this looking-glass-land of conditional benefits, it is ‘secured’ by proving incapacities. Again and again. They have to reveal, in as much convincing detail as possible, their difficulty in coping with the basic functions of personal and social life. They must do so on paper, then in a half-hour (approx) interview with a strange disability assessor employed for the Department of Work and Pensions by Atos Healthcare, the French outsourcing contractor. The rationale of GPs’ ‘fit notes’ and of Employment Support Allowance is to focus on what people can, not what they cannot, do. But to avoid being required to do the impossible, the can’ts have to be spelled out. In this era of ever-tougher benefit conditionality and zero-tolerance of benefit fraud, the onus is on the claimant to prove their disability.
If, after stripping themselves emotionally naked to recount their difficulties, people are found ineligible for benefits, they feel they are being called liars. It’s a no-win. For when they are found eligible, many feel contaminated by the ever-present suspicion of fraud. People with fluctuating conditions tell me that when they are feeling stronger they fear to go out lest they be shopped as frauds by their neighbours. They are right to feel besmirched and afraid: such are the implications of zero-tolerance.
This makes no sense. The process – assessment, decision-making, appeal, review, fraud investigation, appeal – is massively expensive and notoriously inaccurate (read about rates of successful appeal against Job Centre Plus decisions). It tramples on privacy and self-respect in a way inconceivable to anyone outside the benefit system. It creates a noxious fog of suspicion which clouds neighbours’ understandings of each other and poisons their relationships. It leaves people – fellow-citizens, human beings – living in perpetual fear. No hyperbole. For often-isolated people, what fears could be more insidious than inability to pay for food, warmth and housing, or of the suspicious eyes of neighbours?
Can we, please – even at this last moment, on the cusp of Universal Benefit – consider once more a universal basic income? Non-means-tested, unconditional, financed through taxation, supplemented by conditional benefits; above all, asserting and supporting the essential dignity and worth of every person? All across Europe and north America the tide goes the other way, towards conditionality. It needs to turn.
‘There’s no one else to ask,’ these women say to us at CAB. ‘There’s no one out there.’ It is true. For many vulnerable people – above all with chronic conditions that won’t produce NHS or Job Centre Plus ‘outcomes’ – there is no one out there. Big society (in existence at CAB since 1939) is struggling not to drown in the flooding need. The state takes notice only to renew its judgments.
We strip them naked then leave them in the cold. It’s counter-productive, uneconomic, dehumanising. It isn’t good enough.