A ‘spoonie’ is possibly as well known a term as ‘chav’. A spoonie is someone living with a chronic illness. The word is apparently derived from The Spoon Theory written by Christine Miserandino. And why demonisation? Well, whilst not in the terms of reference of the Leveson Report published tomorrow, we can all think of examples of how parts of the media have embraced the ‘scrounger’ rhetoric when referring to any disabled citizen, and the tragic spike in hate crimes in the UK. Owen Jones’ ‘Chavs: the demonization of the working class’, most agree, is a remarkable piece of work, and the treatment of people with chronic illnesses in UK society is for me an interesting one. I only became physically disabled in my adult life, due to acute bacterial meningitis, having spent six weeks in a coma on the ITU of a London Foundation Trust. I have therefore witnessed simple changes in attitudes to me as a person, having been both physically able and physically disabled in my early adult life. I was aghast last Friday that, despite satisfying the legal definition of disability in the UK, I was denied disability living allowance, having in fact received the highest rate for my visible mobility difficulties. I was more aghast, however, that the DWP summary of my disability bore absolutely no relation to my account of it, nor the independent account provided by my own General Practitioner.
There are, apparently, over 6.9 million disabled people of working age which represents 19% of the working population. There are over 10 million disabled people in Britain, of whom 5 million are over state pension age, and there are two million people with sight problems in the UK. The work capability assessment (WCA) tests for the DWP are not cheap – they cost more than £100m of public money each year. However, after several years with the test in place, it is clear that the experience of some of those tested is yet another example of an omnishambles. Most people agree that we need to focus not on what disabled people can’t do but what they can do. That’s why the idea of a WCA is one most people support, and it’s why Labour introduced it in Government. It is undoubtedly important that sickness benefit claimants be assessed to demonstrate whether or not they can work, and the benefits of work are clear too, not just to the individual’s health, social and family life, but for wider society as well.
Sue Marsh – a well known disability campaigner who has severe Crohn’s disease – once received a letter confirming she was no longer eligible for Disability Living Allowance(DLA), a payment which enables her to meet the considerable costs of care and of getting around. The whole benefits system is not fit for purpose any more. Well documented storeies include one man who suffered from heart failure and died 39 days after being declared fit for work. Stephen Hill was sent to his first Work Capability Assessment in 2010 when he gave up his job as a sandwich delivery man after being referred for tests on his heart. His wife Denise, who was with him at the assessment, said: “She checked him out. She did his blood pressure and his heart and said to see a doctor as soon as possible.” Despite the assessor telling Mr Hill to seek urgent medical advice, he was still found fit for work. In the meantime doctors had diagnosed him with heart failure. He won his appeal but he was ordered to attend another assessment. “He got a letter for another medical and I couldn’t believe it,” said Mrs Hill. “He’d got to go for a medical when he was waiting for a heart operation.” Yet he was again declared fit for work, with the assessor declaring: “Significant disability due to cardiovascular problems seems unlikely.” Mr Hill died of a heart attack five weeks later.
So what has gone wrong in the UK? Whereas the narrative for ‘Chavs’ can turn to the sequelae of the Thatcher administration, it is hard to identify a Miners’ Strike (or Oregreave) moment in the 80s for the disabled community. Britain and America are actually two countries that, in recent years, have led the world in attempting to give disabled people rights and equality. During his presidency, George Bush Senior was proud to sign the Americans with Disabilities Act while the 1995 Disability Discrimination Act has gradually transformed the lives of disabled people in the UK. It may appear on the surface that the UK and USA have nothing in common with Nazi Germany, a regime that is estimated to have killed 200,000 disabled people and forcibly sterilised twice that number. And yet something has clearly gone very wrong indeed. Liam Byrne, Shadow for the Secretary of State for Work and Pensions, indeed, after most concede has been a slow start for Labour, recently erupted to say:
“The nasty party is well and truly back. Lord Freud is a former investment banker and now a minister of the crown. For him of all people to compare people on benefits to corpses and likening their lives to a funeral is quite frankly disgusting. Before the summer his boss Iain Duncan Smith had the temerity to call Remploy workers idlers who did nothing better than sit around drinking coffee. He sacked over 1,000 of them and only 35 have managed to find work again. He is quite clearly a man in total denial about the pain his policies are about to cause. Shelter have begged the government to consider the ‘terrifying reality’ of the damage they are doing. Scope talk of disabled people facing a tipping point, risking poverty, debt and isolation. This government is next year about to take out billions from disability help and housing. All to pay for their catastrophic failure to get Britain back to work, and a 3 billion tax giveaway to Britain’s richest citizens. This government’s so-called welfare revolution is collapsing around its ears. The work programme isn’t working. Universal Credit has become universal chaos. Yet Lord Freud’s response is to kick people when they are down and not even pretend to offer a helping hand.
Byrne in fact mounted a passionate response to the demonisation of the disabled citizen community in the UK with Andrew Neil on ‘The Sunday Politics’, in a recent ‘Sunday interview’. When a country’s economy is not performing well, due to abject failures of that country’s economic policies, a right-wing government will tend to blame those people whom they perceive not to contribute to the wealth of this country. The fallacy of this argument is of course that bankers in the City of London are more to blame for the economic woes of the UK than working disabled citizens. (There is, of course, a minority of impressive citizens, who are disabled, working in the City in the finance and law sectors, for example.) There are currently 1.3 million disabled people in the UK who are available for and want to work. However, only half of disabled people of working age are in work (50%), compared with 80% of non disabled people, and 23% of disabled people have no qualifications compared to 9% of non disabled people. Nearly one in five people of working age (7 million, or 18.6%) in Great Britain have a disability.
Whatever the precise arguments are about the ‘economic power’ of spoonies are (and I am a spoonie), there is no doubt, strengthened in principle by the Equalities Act (2010), one of the last statutory instruments to be enacted by Labour, disabled citizens have a powerful role to play in society, even if they remain somewhat under-represented. For example, how many disabled GPs, doctors or lawyers do you know? The bitter pill which the Coalition has to swallow is, that despite all their efforts into espousing ‘happiness’, many disabled citizens are distinctly unhappy with their demonisation in recent yesars. They do have enormous political power, and even polling evidence suggests that while most individuals do not support welfare payments for people patently ‘freeloading’ off the State, they do simultaneously believe that disabled citizens should be supported for their mobility and living in a fair society. That is the problem David Cameron and Nick Clegg have to face in the short term. Iain Duncan-Smith is not a well liked person by many disabled citizens, and, if he is insistent on producing what is a complicated change in culture and functions of the benefits system, the project is definitely doomed to outright failure, due to the weakness in follower support. Whether the Coalition listen to this in the short term is a political choice, of course, but they will have absolutely no choice but to listen in June 2015. Labour has a powerful opportunity to reframe and rearticulate the debate concerning the Welfare State, and it is extremely likely that Beveridge would have been vehemently opposed to any demonisation of the disabled class.