In the modern hegemony of identity politics, a person is only allowed to comment on something if they have direct experience of it. So one answer is that yes, it is okay that sick and disabled people write about issues affecting them, because in fact they’re the only people who have the right to do so.
So we have Mo Stewart, who published Cash not Care in 2016, detailing the influence of American medical insurance companies – who, like some UK advisers to the DWP, want to reduce as many illnesses as possible to nothing more than common health problems in people with poor attitudes – on the UK’s benefit system. Frances Ryan, a disabled journalist who writes for the Guardian, has collated many stories and statistics in her book, Crippled. Tom Shakespeare discussed issues of identity, ethics and ideology in the disability movement in his book, Disability Rights and Wrongs Revisited. Michael Oliver has written about the culture and identity of disability in The New Politics of Disablement.
Of course, experts by personal experience aren’t the only kinds of experts. There are also experts by caring experience – people like my family, who sometimes know better than I do how disabled I am, because they can compare it to their healthy selves and see the difference. And there are experts by medical experience – ideally, they have great depth and breadth of medical knowledge through their training and their interactions with sick people, including observations of the impacts of different treatments. In practice, for people with rare conditions, educated and experienced doctors are also rare. Another group is the experts by academic experience: people who collate the anecdotes of personal experience into the weight of data.
So we have George Faulkner’s report, In the Expectation of Recovery, on the involvement of medical insurance companies and the role of the malignant ‘biopsychosocial model’ in both welfare and medical care. Journalist Katharine Quarmby published the results of her investigation into disability hate crimes in her book, Scapegoat: Why we are failing disabled people. Neil Carpenter wrote about the impact of austerity on adults with learning disability in his book, Austerity’s Victims, based on his experience as a volunteer advocate.
But in the end the reality is that, whilst it is okay that sick and disabled people write about their experiences as sick and disabled people, it is not okay that those experiences are so overwhelmingly negative in breadth and depth. And that is how they are in the UK today. It’s one thing when one part of your life goes wrong and everything else is fine: you can probably manage. It’s quite another when every part is wrong: your health, your house, your income, your medical care, your local area, your support to live in your home, your support to get out of your home.
I remember once talking to a friend who was objecting that poverty in the UK isn’t really that bad. I realised that it was, in part, because he thought of a person in poverty who otherwise had good health; lived in a warm and safe home in a pleasant suburb; had friends and family and business colleagues; and even had a decent job and secure albeit inadequate income. But when I think of a person in poverty, I know that they are typically sick or disabled; stressed and distressed; in a property that is at least one out of cold, damp, mouldy, unsafe, overcrowded and pest-infested; either isolated from family and friends or whose family and friends are struggling just as much as they are; and whose job is insecure, high-pressure, low-autonomy, toxic, high strain work that actually makes people ill – and I include complying with the benefits system in that definition of jobs carried out by the poor.
My friend’s poor person was broadly okay and manifestly better off than the poor in undeveloped countries. My poor person was being actively harmed by a government that underfunded public services and promoted toxic jobs through the implementation of a toxic welfare system combined with deregulation. My friend’s poor person could get by; mine was trapped.
It is for people like my friend that I wrote Second Class Citizens. I know that my friend cares about poverty and social injustice; we’ve talked about it often. But his understanding of poverty is restricted by the middle-class world in which he lives. His understanding of the causes of poverty is coloured by myths and misinformation.
The fact is that poverty is primarily a structural problem and one that is solved firstly through money and secondly through investment. If you give poor people money, their lives improve: parents spend more money on clothes, books and fruit and vegetables for their children; homeless adults identify their own routes off the streets and into training; less money is spent on drugs, alcohol and other temptation goods. If you were at the same time to invest in the community, lives would improve even more, and by this I mean not just investing in the basics of decent housing, local jobs, childcare, good schools and timely healthcare but also the services that mean a place becomes somewhere that families can not just survive but thrive: parks, libraries, swimming pools, youth clubs, community cafes.
But this is the opposite of what the UK government has done. At a time when private sector spending and investment was falling, the government thought that demand would be boosted if the public sector was also cut. At a time when more people needed the safety net of the social security system, the government ripped the net to shreds. In a crisis caused by deregulation and irresponsible lending, the government blamed unemployed people and the sick and disabled.
When policy is based on wrong beliefs about both the problem and the causes of the problems, the results can be catastrophic. Second Class Citizens started when I decided to read what right-wing think-tanks were saying about welfare. There was just so much that was wrong in the reports I was reading, and yet they were published as serious, authoritative documents to which right-wing politicians and politicos were paying attention. That is dangerous, because policy based on flawed beliefs about how the world is, who the poor are and why they live the way they do results in serious harm of which Universal Credit is only the most well-known, not the most damaging. I couldn’t leave the reports unchallenged.
Disabled people are the canaries in the mine. You can be sure that when services and support are cut, it is disabled people who notice first. When bus routes are slashed, pavements cracked and daycentres closed then disabled people lose not only somewhere to go but the means to get there. If you add on top of this the decreasing availability of necessary healthcare, loss of benefits and collapse in social care then disabled people can’t even get out of the house. When jobs at the bottom combine a high premium on speed with low autonomy, then toxic conditions are created which make healthy people sick and lock sick people out of the labour market altogether. Add in benefit cuts and you’re trapping sick and disabled people in penury.
The consequences are life-threateningly severe. We have people going blind because the NHS wasn’t able to treat them in time. Diabetics have lost their legs and even their lives because benefit issues meant that they couldn’t afford to eat a low-sugar, low-carb diet. Nine people die each day still waiting to be assessed for disability benefits. There are an additional 200 suicides a year associated with our sickness benefit process. There were 10,000 additional deaths above expected for winter in the first seven weeks of 2018, and infant mortality rose between 2014 and 2017.
Here in the UK, we have created an entire society around the desires of business. Business wants cheap labour which it can hire and fire easily; government not only deregulates the labour market but creates a benefits system that is geared around pushing people into one toxic job after another. Business wants to make more money; government scraps requirements to meet access needs and doesn’t bother enforcing the requirements it keeps. Business wants to pay less tax; government turns a blind eye to evasion and avoidance whilst jumping on every possible mistake made by a benefit recipient, however minor.
It doesn’t have to be like this. We aren’t dependent upon the ultra-rich and their businesses. The government is the source of money and the people are the source of wealth: we are the ones who built the roads and railways, to carry the trucks and trains that we assembled, which contain the goods that we made, to the shops that we staff. And as Henry Ford knew, we are also the people who buy those goods – so if we don’t have enough money, then business suffers too.
When we build a society that works for the people, we both save and make money: we save money on the cost of healthcare and social care and welfare; and we make money from the increased productivity of those who are healthy and happy and supported. Instead of people who are so worn down by making ends meet that their IQ has fallen 13-14 points, their marriage has broken down, and they’re developing congestive heart failure we can have people in jobs that they enjoy, producing goods and services of value, based in a community of people who have the time, money and opportunity to laugh as well as work together.
Why should you read my book, rather than one of the others? If you want a relentless assault on your faith in Tory government, then read Crippled. If you want to know about the role of insurance companies and discredited, damaging understandings of illness, then read In the Expectation of Recovery. But if you, like me, what to know not just what happened but how we ended up in a situation where disabled people’s needs are routinely placed second to businesses’ desires, and yet the electorate still voted for a Conservative government in 2015 and people genuinely believe that welfare reform has been good, then read Second Class Citizens.
There is no need for the government to be in thrall to big business and the ultra-rich. Sick and disabled people do not have to be second-class citizens. But until citizens come before companies and people before profit, the sick and disabled will continue to be the least and the last.