The very act of renaming incapacity benefit support for sick and disabled people “employment and support allowance” signaled the political intent to make that support precarious, with an aim of pushing people previously exempted from work on medical grounds from lifeline social security protection into work on political grounds, regardless of the consequences. The word “allowance” means the amount of something that is permitted, especially within a set of regulations or for a specified purpose. This language shift signaled the increasing contingency of support for disabled people.

It also reduced and transformed the sick role, making it increasingly transitory, redefining chronic, incurable conditions as somehow transient, and marking a shift from medical definitions of sickness and disability to psychopolitical redefinitions, which are ultimately aimed at pushing forward a small state neoliberalist agenda. Welfare provision is being steadily dismantled. 

However, changing the name and making the eligibility criteria for support much more stringent has not helped sick and disabled people into work. It has simply created circumstances of further disadvantage, hardship and distress for many people.

It hasn’t worked because many of those people affected by the nudge-styled rebranding of their lifeline support and draconian cuts to “incentivise” people to take up and cherish the Puritan work ethic, as the paternalistic Conservatives think we ought to, are simply too ill to work.

Of those that may be able to work, over time, their would-be employers have not engaged with legal requirements and provided adjustments in the workplace to support those disabled people seeking employment. The government have removed the Independent Living Fund, and reduced Access to Work support, Personal Independence Payment (PIP) is very difficult to access because of the stringent eligibility criteria, whilst the disability benefit Employment and Support Allowance was also redesigned to be increasingly difficult to qualify for.

— Michael Fabricant (@Mike_Fabricant) March 26, 2016

 By “trolls” Michael Fabricant actually means disabled people and campaigners responding to his tweet.

What happens to those people that can’t work or cannot find an understanding employer, prepared to make reasonable adjustments in the workplace?

On becoming ill – it can happen to anyone

I am medically ill and my illness (lupus) affects my mobility, focus and general wellbeing. I am restricted in what I can do, and the symptoms and exacerbations are very unpredicable. However, it is economic, political and cultural forces which have created and continue to create my ongoing disability and social marginalisation, not my illness. Many of my problems are compounded because of an unadapted physical environment, a lack of resources and the attitudes of others, particularly the current government’s.

I don’t accept that health problems ought to be seen as the cause of the socioeconomic deprivation and exclusion that many of us are experiencing, because the real cause is entirely political. Policies, which exclude disabled people from their design and rationale, have extended and perpetuated institutional and cultural discrimination against disabled people.

My own illness arose partly because of a genetic predisposition, partly because of my gender and hormonal events which often trigger the illness, and probably a variety of other complex reasons, none of which specialists fully understand yet. Prior to becoming very ill, I led a very active and healthy life. I worked hard in a job I loved. My diet is and always has been balanced and healthy, I enjoyed outdoor activities such as climbing, abseiling, archery and walking. I was never inactive or overweight, and I am not stupid when it comes to health issues. Lupus isn’t a “lifestyle choice” and it didn’t arise because of something I did wrong.

All the same, I frequently get well-meaning but bad advice to try different diets, “natural” herbal remedies (people forget that they contain chemicals) – usually the immune- enhancing ones like echinacea, which my rheumatologist has already advised could be very dangerous – and the best one of all: “You should stop taking the heavy duty medication and ‘cleanse your system’.” That would be medication that I take to keep me alive because I tried and ran out of all the other options. I usually recommend a simple course of water melons for such “experts”, to be taken at four hourly intervals, rectally.

Like many other ill and disabled people, I have worked for most of my life. My work was rewarding, and the professional roles I took up have entailed developing inspirational ways to support and enable others, from voluntary work with Women’s Aid and Victim Support, to salaried youth and community work, social work, mental health work and delivering training. I worked whilst being ill for a number of years.

By 2010, I simply couldn’t work any more. My previous and mostly background joint, nerve and muscle pain suddenly became all consuming. My ankles, knees, wrists and fingers swelled. I caught a cold at work which turned to pneumonia on two occasions in 2009. I had apparently random finger abcesses, inexplicable kidney infections, and bruised every time I was touched. I had severe nerve pain in my face and optic nerves, which affects my vision. My hips and lower spine became stiff and painful, my shoulders became frozen. I had a painful rash across my face that looked like eczema, only it wasn’t. I was profoundly tired all of the time, and weighed less than eight stones. My GP ran some tests and everything came back lupus, with complications such as a severe autoimmune bleeding disorder, very low immunity to infection and neurological involvement.

Working put my safety, health and wellbeing at substantial risk. It also potentially exposed other people to risk, too, because of the impact of my illness on my judgments, reliability and consistency, eyesight, ability to supervise, mobility and so on. A tribunal agreed with this assessment in 2012.

It was a very painful recognition that I could no longer work, my decision to leave was very difficult, compounded by a sense of loss of self worth and meaning. I felt that my experience, developed skills, not to mention time and effort invested in studying for a highly vocational Master’s degree, were meaningless and unavailing. However, I was completely unprepared for the damaging impact of the political othering and socioeconomic outgrouping that followed from 2010.

And the poverty. I came to feel that I had been politically redefined as somehow “deviant” by 2012. A much needed transformation to add to the grieving process for the person I was before my body became a traitor. Cheers, Mr Cameron, for the milk of human blindness. The Sex Pistols got it a bit wrong back in the last days of counter-culture and agitprop: it’s not just anarchy that we need for the UK, it’s a modicum of empathy, too.

Doctors and rehabilitation professionals continually recommend medical treatments and practices even though they know that these will not necessarily improve my quality of life. Most of the treatments for autoimmune illnesses such as lupus are largely experimental: comprised of chemotherapies and immune suppressants that carry their own life-threatening risks, and being ill with lupus and other autoimmune illnesses presents a constant and difficult process of weighing up of such risks – life threats from the illness versus life threats and serious life-changing risks from the treatments. 

The dangers that arise when everyone thinks they are an expert on illness and disability

That didn’t stop a job advisor, during my time in the employment support allowance work-related activity, group telling me I should take the chemotherapy methotrexate because her friend with rheumatoid arthritis had some benefit from it. Methotrextate helps around 25% of people taking it, to various degrees, but it cannot cure the illness. Side-effects include sudden death, blindness, liver, kidney and heart failure, lung fibrosis, thrombocytopenia – a serious bleeding disorder which I already have – and death from an overwhelming infection, which I am already susceptible to, since my immune system is easily compromised and broken, amongst many other problems.

As it happens, I had already tried methotrexate for many months, administered by injection into my stomach. It didn’t work and the side-effects were truly diabolical, adding to my existing misery and multiplying symptoms. Another treatment, considered far less risky, called hydroxychloroquine, damaged my retina because I was prescribed too high a dosage, I’m now partially sighted.

However, the unqualified advice from a job coach overlooked that I have a different illness than her friend, and that methotrexate is a black box drug with life-threatening side-effects. Everyone seems to think they are a medical expert nowadays, and that’s the government’s doing, since they have been redefining illness and disability, making it a moral and public matter rather than a private, medical issue. Such political negative role-modelling has permitted a rise in expressions of social prejudice towards disabled people, which is why hate crime has risen significantly since 2010 and is now at the highest level since records began.  

We are either deserving or non-deserving, abled or disabled, never just ill or physically disadvantaged. Our lives have somehow become public property, with all manner of unqualified people feeling entitled to intrude at an intimate level to tell us how to “manage” our illness better. Or to transform media tropes and political folk devils into forms of justification for abuse.

Job centre staff it seems will recommend anything, including unqualified advice about medical treatments, regardless of the risks that may be involved, to coerce people from what was once a social safety net and into any job, regardless of its appropriateness, quality, pay, security, and importantly, it’s potential impact on people’s health and safety.

Last October, I flagged up the extremely worrying government plans to place job coaches in GP practices, with provision made for job centre staff to “update” people’s medical files. The government hadn’t announced this  “intervention” in the lives of disabled people, nor had we been consulted or involved in its design. I found out about it quite by chance because I read Matthew Hancock’s recent conference speech: The Future of Public Services.

I researched a little further and found an article in Pulse which confirmed Hancock’s comments: GP practices to provide advice on job seeking in new pilot scheme.

The government plans to merge health and employment services, and are now attempting to redefine work as a clinical outcome. Unemployment has been stigmatised and politically redefined as a psychological disorder, and the government claims somewhat incoherently that the “cure” for unemployment due to illness and disability, and sickness absence from work, is work.

This is why I visit my doctor and not David Cameron or George Osborne when I need advice, support and treatment related to my medical (and not political) condition.

It’s a prejudiced government that has edited the script regarding sick roles – we no longer have medical sick notes, they have been replaced by political fit notes. The subtext is that we must participate in the world of mainstream work without any choices, without reasonable adaptations and without support. Without any acknowledgement of illness and disability, in fact. Or, we have to accept being redefined, our identity rewritten as “dependent”, “impaired” “unfit for work” as a trade-off for a degree of meagre support.

All of our previous achievements and contributions are forgotten. We once celebrated the achievements of disabled people, but now, we cannot, because disabled people are systematically repressed. We are politically defined as either fit for work (and thus not seen as “disabled”) or not. There are no other options for us, unless we happen to be very wealthy as well as ill.

Singing the body politic in our own voices

We don’t fit with neoliberal dogma and the Tory ideals of “individual responsibility”, competition, a “small state” and compulsory (low) paid employment to enhance profits for the elite’s old boys network. Any positive association with impairment, such as reasonable allowances made or degrees of freedom from the Tory notion of “social obligations” and “responsibilities,” is prohibited. We are faced with an overly simplistic, terribly reductive and dehumanising either/or choice.

We are deemed either fit for work, or too disabled to work, with no accommodation made for what we may be able to contribute in myriad ways to society, nor is our past accumulative experience and skill regarded as a valuable. The moment there is a hint we may have some kind of tenuous work-related capability, all support is withdrawn. However, once we are deemed unfit for work, we are denied full citizen’s status and economic inclusion.

This narrow political approach does nothing to enable and support people, nor does it reflect human diversity. It simply disables us further and denies us autonomy and the right to define ourselves. It’s an approach that actually punishes people for the abilities, experience and skills that they have, stifling human potential. The moment those abilities and skills are revealed at a work capability assessment, all support is withdrawn and those qualities remain unfulfilled. Instead of investing in personal development and extending opportunities, the government is simply cutting social security and public service costs at our expense. It’s not actually their money to cut.

We are expected to participate in an unaccommodating and increasingly competitive job market or suffer the dehumanising consequences and impoverishment of claiming social security long-term. And the people profiting from this are the competing, vulture capitalist private “service” providers.

There is no support for creating circumstances where our skills may be transfered. There is no support to help anyone adapt their skills and experience to fit future employment. Access to higher education has been restricted because of the steep rise in cost, especially for mature and disabled students. There is nothing in place to ensure that employers recognise disabled people’s skills and experiences and make adaptations to accommodate people wanting to work, and no safety net at all to encourage personal development for disabled people, since all support is tied to rigid definitions of disability. You can either work or not.

Under the guise of lifting burdens on business, this government has imposed burdens on those with disabilities by removing the “reasonable adjustments” that make living our lives possible and allow us some dignity. The labor market is hostile and unaccommodating, providing business opportunities for making profit, but increasingly, the needs and rights of the workforce are being politically sidelined. This will invariably reduce opportunities for people to participate in the labor market because of its increasingly limiting terms and conditions.

This highlights the paramount importance of shifting the political focus to the pressing need to change a disabling culture and to actually listen to our lived experiences, including us in policy design from that of merely coercing us into fitting reductive Conservative definitions to accommodate and fit in with a neoliberal model of society.

We have smug, wealthy and healthy Conservatives redefining disablity, our identity is ascribed by others who have handed us a socially devalued status: we are being told who we are and how we must be.

Citizen’s “needs” are being aligned with politically defined neoliberal outcomes. Those most acutely aware of this are those politically assigned a lower status in the increasingly steep socioeconomic hierarchy. Stigma and othering is used politically to justify the hierarchy and the consequent crass inequalities, which are designed and mediated through policies, not citizens.

Stigma arises because of the perceptions of the oppressor, not those being oppressed. But perhaps it’s time that people who are “working hard” to contribute to the increasingly enclosed economy paused and observed what is going down, because disabled people are not the only ones being stigmatised and radically reduced by a particularly toxic combination of social conservatism and neoliberalism. Punitive and coercive welfare conditionality, including sanctioning, has recently been extended to those in low paid employment and part-time work, as tax credits and additional support vanish under the guise of “universal credit”. The bedroom tax is likely to be extended to the elderly. How does this in any way ensure that “work pays”?  All this will do is increase the precariousness of people’s situations and substantially increase their vulnerability.

The recognition and celebration of human potential, diversity and equal worth has been superceded by an all-pervasive Puritan “hard work” ethic. Our worth is being defined purely in terms of our economic contribution. We are measured out in pounds and pennies whilst making billions for a handful of other people. That is a value that comes exclusively from the dominant paradigm-shaping elite – the ones who actually profit from your hard work.

You don’t.

The government’s new “health and work” programme is actually workfare for sick and disabled people. Apparently, slave labor for big business is good for our “health” and has the added bonus of adding substantially to profits for friends of the Conservatives. It’s amazing how quickly the public have accepted the political semantic shifts, such as “work programme” – compulsory labor for no wage, which was originally about “exploitation” and has now been redefined as “work experience”. Apparently that is also “fair”, “inclusive”, “good” for our health and “makes work pay”.

Makes work pay for whom?

Disability can no longer be considered solely as a medical problem, affecting only a minority of the population. It must be seen for what it is: as a civil rights issue as central to mainstream political discourse. This government uses draconian policies to act UPON disabled people, it does not value our lived experiences nor does it listen and RESPOND to us. It’s a government that simply tells us how we must BE. That is profoundly undemocratic, it discriminates against us and excludes a social group on the basis of a protected characteristic.

There are and have been a lot of ways to define disability, it has variously has been defined through the eugenic model, a medical model, charity model, rights-based model, social model and a radical model. Now it’s time for a disabled people’s model, founded on our lived experiences and varied needs.

Understanding that oppressive situations have not arisen through any fault of our own, and that the oppression is real and has a basis in sociopolitical prejudice and discrimination provides us with the courage needed, and a more solid ground on which to fight for liberation. It always seems to be the case that fighting social injustice is left to the very people who have been excluded and systematically deprived of a political voice and power, it’s always down to us to make others listen. Yet it is invariably the case that when one social group is targeted for political prejudice and discriminatory policies, it affects everyone. Historically we have learned it quickly follows that other groups are singled out, too.

 

Picture courtesy of Robert Livingstone

—

 

I don’t make any money from my work and I’m not funded. You can support Politics and Insights by making a donation to help me continue researching and writing independently, and to continue to help others.