Last night Panorama (BBC2) and Dispatches (Channel 4) featured documentaries on the Work Capability Assessment (WCA), part of the process for determining who is ill enough to not be required to look for work. The programs were well informed about the facts and largely delivered them without any misleading usage.
I have been following the welfare reform bill and WCA since January. I am aware of most of the stories surrounding the WCA, have read multiple reports of people dying, including by suicide, after being told they are fit for work, and have checked all the statistics I can find. I thought I knew how traumatic and inaccurate the WCA is.
Last night, I discovered that I didn’t know the extent of the horrors. I watched a health care professional (HCP) who works for ATOS (the company that carries out the WCA) describe the WCA as frustrating and toxic. I heard new ATOS workers being repeatedly told that ESA was designed to take people off health-related out-of-work benefits. HCPs described how they felt awful, being unable to help people who desperately needed help. I heard how a man with heart failure was found fit for work, and died of a heart attack 39 days later.
At the end of the programs, I felt sick with sorrow, anger and fear.
Yesterday morning, the Telegraph published an article arguing that the disability lobby can’t have it both ways – that is, we can’t simultaneously say that disabled people should not be presumed unfit for work and point out the failures of the WCA. Apparently, to be upset that people are wrongly found fit for work and be upset that people are wrongly presumed unfit for work is untenable.
Christina Odone brings in various arguments to support her case. The example of Paralympians and other high-profile disabled people shows that disability should never prevent work. The assessment process should focus on what disabled people can do, not on what they can’t. She says that, “Disability campaigners must realise that their prized autonomy comes at a price, though: they cannot automatically equate being disabled with being dependent on welfare.
A man who claims to suffer from a debilitating but unprovable backache, an alcoholic who refuses to tackle her addiction: they may be considered “disabled” but should they receive benefits? When they do, the truly incapacitated feel cheated. As do the rest of us.”
Some disabled people can compete in the Paralympics. This has little to no bearing on the abilities of the disabled community as a whole. I have ME – I inherently cannot train as an athlete, because to do so would make my condition worse, rapidly leaving me bedbound. People with Crohn’s cannot train; they struggle to absorb enough nutrition for daily living, without trying to consume athlete-level quantities of food. Someone with EDS could not be an athlete; nor someone with MS.
Not everyone can make it to be an Olympic athlete. Not every disabled person can be a Paralympic athlete.
It is a large part of the government’s rhetoric that the focus should be on what people can do. So instead of saying ‘this person cannot sit for more than half an hour, which means any work will be hugely patchy,’ they say ‘this person can sit for 30 minutes, and therefore is able to work for 30 minutes.’ Being able to pick up a £1 coin, being able to raise one arm above your head, being able to move an empty cardboard box – having these amazing abilities means a person is fit for work. No-one cares whether there are any jobs that involve such activities. No-one cares what quality or quantity such work would be. No-one cares that the person will rapidly run out of sick leave. No-one cares that the attempt to work means someone else has to take care of the house, children and disabled person’s body. No-one cares that ‘Arbeit macht frei’ may not apply to menial, repetitive, low-paid, high-stress jobs.
Disability campaigners do not “automatically equate being disabled with being dependent on welfare.” We are passionate to see more disabled people in employment. We are keen that a disabled person who is capable of work and has a degree should be as likely to be employed as a non-disabled person with a degree, rather than less likely than a non-disabled person with only 5 GCSEs. In many cases, it is society that is the problem: the inaccessibility of public transport, buildings and environments to wheelchair users; the lack of technology set up to support Braille readers or those whose first language is British Sign Language; the difficulty of having work that is so flexible that the number of hours per day, week or even month do not matter to the employer.
Our issue with the WCA is a separate matter to our issue with society. Society is a major barrier in preventing disabled people who can work from gaining employment. The WCA is a process for assessing people’s health that has been repeatedly shown to be inaccurate, flawed and wrong. Whilst we want those who can work to be in work, it is not untenable that we also want those who cannot work to be given the support they need. For many people it is the nature of their health condition that means they cannot work. Many conditions are so debilitating that just remaining alive is a gargantuan task.
So yes, we want a change to the WCA. We want to see an end to the huge number of people who are found ‘fit for work’ who then die, or win their appeal. We want to see an end to the rise in disability hate crime. We want to see an end to the fear chasing so many peoples’ lives. And we want to see an improvement in the support available in the wider society to ensure that societal barriers never keep a person from employment.
Odone speaks of the “man who claims to suffer from a debilitating but unprovable backache,” and “an alcoholic who refuses to tackle her addiction.” She ignores what ‘debilitating’ means. It means that strength and ability is impaired. She also displays her medical ignorance. It is entirely possible to have severe back pain that cannot clearly be proven with medical tests. The disabled community does not begrudge benefits to such a person. We know what chronic pain is; many of us live with it every day, and we can confirm that it is horrific and can make work impossible.
Odone is equally ignorant about addiction. Addiction is very complex. The body and mind become dependent on a drug to function, and coming off drugs is physiologically as well as psychologically difficult. Chaotic lives and stress make addiction worse. Removing a person’s benefit is not going to help their addiction and is likely to make it worse. The disabled community does not begrudge benefits to such a person. Many of us have to battle to keep pain medication under control. Others of us use damaging coping mechanisms that aren’t drug addictions. We know that addiction is horrific and can make work impossible.
It is time people with no knowledge of disability stopped passing judgement on us. It is time that we got the support we need – whether that is the government and employers making work accessible to us, or whether it is the government helping to keep us out of poverty and declining health by giving us the financial and mental freedom to focus on managing our condition.