Reintroducing the Sick-role? Disability in Modern Day Britain
Author: Paul Dodenhoff : Contact: www.disabled-world.com/info/paul-dodenhoff.php
Published: 2019-01-10 : (Rev. 2019-02-09)
An article by Disabled World UK writer Paul Dodenhoff in response to the death of Kevin Dooley in order that such issues get worldwide attention.
Do you ever get that feeling of Déjà vu? Certainly, if you live in pre-Brexit Britain you will often be hit with the same sort of 'news' from the daily tabloid press. Either that the European Union is full of daft, unelected bureaucrats determined to ban curvy bananas and electric kettles. Or refugees from Syria or Iran turning up in their hundreds on homemade boats near some beach in Kent, only to be offered a ready-made home by the local Labour run council to move into and given any number of welfare benefits to enjoy.
Of course, most of these stories are fake or exaggerated to such an extent that to call them misleading fails to convey the malicious intent of their origin. All of which is designed to stimulate public outrage over a range of topics - from continued membership of the European Union, immigration, to Britain's outdated and 'over-generous' benefit system. In other words, a level of propaganda that Nazi Germany in the 1930's would have been proud of. And media propaganda that can be traced back decades.
However, that sense of déjà vu takes on a particularly tinge of sadness when we hear of yet another tragic death concerning a sick or disabled person, driven to suicide by the antics of the state itself. And no matter how often you hear of these deaths does the sense of shock, overwhelming incredulity and the level of sheer bloody minded cruelty of Government, become any easier to handle.
A few days before Christmas, Kevin Dooley killed himself days after staff employed by the Governments Department of Works and pensions removed his welfare benefits and ordered him back to work. Assessors run by outsourcing firm Maximus stopped Kevin Dooley's employment support allowance even though a doctor already had confirmed that he was too sick to work. Mr Dooley, a former painter and decorator suffered from breathing problems caused by chronic obstructive pulmonary disease and was originally deemed unfit for work five years previously. He subsequently claimed £70-a-week in welfare benefits.
Speaking to the Mirror Newspaper, Mr Dooley's daughter Leanne, found her father hanged after he lost his original appeal with the DWP:
"Over the last year Dad's illness got worse, and he got less mobile. Whoever deemed him fit for work is a disgrace. He wanted to work, but couldn't. He needed regular haematology appointments and was on three inhalers, steroids and antibiotics. But because he could walk to the shop and at times minded his grandkids, they said he could work. He worried he'd be homeless as he had to reapply for housing support. He said he thought taking his life was the only way out."
(Daily Mirror, 5th January 2019)
While Mr Dooley lost his appeal hearing at the offices of the DWP he planned to take his case to tribunal, were he arguably had a good chance of winning. As indeed a good deal of similar cases are. The DWP now claim that a Universal Credit advance payment had been made to Mr Dooley in December after the ESA appeal rejection letter he received on November 29, so it didn't leave him totally penniless, stating that his 'work requirement' had also been turned off after he had told his work coach at the time that he would be challenging the appeal decision. However, anecdotal evidence clearly indicates that Mr Dooley was so distressed over his future and by the treatment he had received over his inability to work, that he saw only one way out. As an inquest is still to be heard, it will interesting to hear what conclusions the coroner will bring forward.
Yet, Mr Dooley's death is simply another in a long list of similar deaths the UK has witnessed since Government 'austerity' measures were introduced from 2010 onwards. Without going through all the evidence again, since 2010, sick and disabled people in the UK have faced a complete barrage of welfare reforms from the state, reforms that the UN criticised in 2017 for having caused a "human catastrophe" for disabled people. In 2011, the Government ordered that everyone on incapacity benefit, some two million people at the time, should be assessed, although the majority (if not all) would have already gone through some kind of medical assessment by their own GP and other medically trained staff. Therefore, people with intellectual disabilities, mental illness and those with life changing physical disabilities have been accessed and reassessed (in some cases) and pretty much under a new assumption that such people can do far more than they say they can. In short, very little can or should deter you from the world of 'work'.
Similarly, if you are taken ill for whatever reason or suffer an accident, the shift in focus is not on what the doctors and the medical teams say you can't or shouldn't do anymore but on what teams of Government officials say you can - using a check list that seems largely compiled by bureaucrats for.....bureaucrats. In short, sickness and disability has been cured, at least in terms of qualifying for state support - and that dramatic erosion of state help has certainly made an impact.
A year before the infamous Work Capability Assessment was introduced (a test that decides if you are sick or disabled enough for welfare support) surveys indicated that 21 per cent of incapacity benefit claimants had attempted suicide. By 2014 that number had more than doubled, with the figure reaching 47 per cent for female claimants.
Ok, ok. Before the DWP jumps in at this point and gives us the usual blah-de-blah-de-blah - about these being vulnerable people who often have mental health issues or complex health issues, so we can't say for sure that such people would not have killed themselves even if the DWP had not waded in with their size 19 Doctor Martens boots. Indeed, these are of course complex issues, but even if we take the Government's argument as being a genuine one, it should be a concern at least to any modern-day Government that benefit claimants are now seemingly at double the risk of taking their own lives than they were - for whatever reason that may be. Especially when we consider that by 2015, 90 people a month in the UK were also dying after being declared fit-for-work by Government officials. Yet, no one seems apparently concerned at all about it.
Certainly there is enough evidence around now to indicate that the methods the British Government are using to deal with people who are unemployed for whatever reason, are not just seriously flawed but both deliberately brutal and cruel. For example, a survey undertaken in 2012 found that 1 in 5 GP's in the UK had at least one disabled patient who had thought about suicide because of the Work Capability Assessment alone. And should we be surprised?
These 'fit for work' tests are not just humiliating for people to take but badly flawed in their design, making a number of simplistic assumptions about claimants that stacks the assessment process against them from the very start. For example, the first component of the test often involves a series of multiple-choice questions where claimants are awarded points based on their answers to questions such as - Can you use a washing machine?
These questions therefore often relate to what sick or disabled people can do in their own home, making the assumption that somebody's abilities at home accurately reflect their capabilities in the workplace. Arguably, managing to throw a few dirty socks in the wash once every few days means you are clearly fit enough to throw a few heavy bags around in a busy warehouse for 40 hours a day, 7 days a week, 52 weeks a year. So why aren't you?
Another major flaw is that people with intellectual and learning difficulties, or mental health issues for that matter, often can't articulate their issues correctly during the procedure. Particularly when they meet face-to-face with their assessors. There is also evidence to suggest that what is recorded by the assessor often does not accurately reflect what was actually said during the assessment itself. This is a concern that has never been addressed adequately by Government, particularly when we consider that targets for refusing welfare benefit claims have clearly been set by Government itself - putting pressure on its institutions to enforce them.
In May 2017, a Freedom of Information request revealed that Government had actually set an 80% mandatory target for the refusal of welfare claims as a key performance indictor. Therefore, anybody claiming welfare benefits in the UK does not meet independently minded officials who are any mood to help if at all possible, but who are there mainly to deter, obstruct and ultimately say.....no. Let's not forget that the Work Capability Assessment is outsourced to private companies who make £millions of profits in return, and whose staff are 'motivated' to process as many claims as possible. So, what possibly could go wrong?
These are the deliberately hostile barriers that benefit claimants are up against in modern day Britain, and barriers that Kevin Dooley arguably also came up against in his dealings with the DWP.
What is a Disability?
Government's actions towards sick and disabled people often clash with their own rhetoric surrounding sickness and disability. For example, if we look at official definitions of disability, you will be defined as being disabled under the Equality Act 2010 if you have a physical or mental impairment that has a 'substantial' and 'long-term' negative effect on your ability to do normal daily activities. For this discussion, 'substantial' is defined as more than minor or trivial and it takes much longer than it usually would to complete a daily task like getting dressed. On the other hand, long-term' means 12 months or more, such as a breathing condition that develops as a result of a lung infection.
However, there are some conditions that are automatically treated as a disability such as 'cancer' and 'HIV', while some might be treated as a disability under the Equality Act depending on the effect they have on your daily life. By all accounts, Kevin Dooley didn't have a condition that fitted the automatic category of disability, but something that had been treated as a disability over the previous five years because of its effect on his life. So, one has to question what the assessors saw in Kevin Dooley's condition in December that contradicted both past and present medical advice?
That question is arguably answered by Kevin Dooley's daughter herself who suggested it was Mr Dooley's ability to walk occasionally to the shops or look after his grandchildren that signalled his fitness for work. Despite having a health condition that was seemingly getting worse, something that was significantly and adversely effecting his daily life and backed-up by medical opinion, assessors simply took advantage of a 'loop-hole' in the Equality Act 2010 that the Work Capability Assessment exploits. And that 'loop-hole' is one that gives Government bodies' carte-blanche over medical expertise to decide what degree people are adversely affected by any condition that may officially be regarded under law as being a disability.
Even people actually dying from cancer have had their welfare benefits removed by the DWP after being reclassified as 'fit-for-work'. So, if we go back to the 'washing machine' question, the ability to do one or a number of simple tasks in the home will not only cast doubt upon your inability to work, but also your legal definition as having a disability. It's a process that seems primarily set up to fail as many claimants as possible, while hoping that some won't carry on to the tribunal stage - for whatever reason that may be.
Reforms That Cost More Than They Save
On the surface, it is policy that certainly carries the stench of social cleansing about it, because this seems to be so much more than simply a cruel, uncaring approach that is primarily intended to save money. In 2017, A National Audit Office (NAO) study found that it would cost the Department for Work and Pensions more than £1.6 billion over the next three years to carry out the health and disability assessments handled by private contractors. However the NAO also found that savings in benefits payments were likely to be less than a billion pounds by 2020 as a result of the new tests. I'll let you do the math.
So, if tests like the Work Capability Assessment are costing far more money than they actually save we need to be asking why these tests continue? Arguably, this is not about saving money at all but about reinforcing a work ethic in people and reinforcing a sense of self-responsibility. Particularly in people who are ill, disabled and those with mental health issues. In short, it is no more than an ideological attempt to manipulate people into supporting themselves in all circumstances. If you can't, than it is simply....tough luck. And if you kill yourself under the strain of not only having to deal with a life-changing and often life-threatening medical condition, but with financial worries and a hostile welfare system that is supposed to be helping you, then once again....tough luck.
Bringing Disabled People into the 'Sick Role'
This may seem like stating the blooming obvious, but it is important to consider that traditionally, British society has always closely policed its poor, it's sick and its disabled. I think we Brits have a tendency to over-romanticise not only Britain's past but also its present, air-brushing out the bits we don't like or don't want to hear if it might disturb our world view of life as we like to perceive it. Britain's administrators therefore become part and parcel of this romanticised version of virtue and selflessness, a shining beacon of democracy and freedom in a hostile world full of dictatorships and corrupt banana republics. Britain as a nation riding out on a white horse to rescue damsels in distress and small kittens from the tops of trees, and a nation therefore too nice and far too soft at times for its own good.
That's why many Brits arguably believe much of the tripe they read in the daily press about immigrants being given preferential treatment, automatically jumping the queues for social housing and refugees being plucked from homemade dinghies in the English Channel to start a new life of pampered luxury in good ole Blighty. Of course, it's an illusion that doesn't actually stand up to closer scrutiny. But it is an illusion that helps to sell Government reforms to the general public.
One reality we need to consider is that for much of the time in early British history, support for the sick, the poor and the disabled came overwhelmingly from charity and Christian charity at that - by the Church and its monasteries. The state had very little involvement in the 'care' of its poor or it's sick. However, by the 1500's reformers of the day had already perceived charity as being a bad thing. Charity that only encouraged the feckless to be lazy, thereby giving help to vagabonds, beggars and thieves who were not only dangerous to society but who could also spread disease by roaming around from one place to another looking for an easy life.
So, in order to control the poor, particularly from moving from Parish to Parish in search of freebies, a distinction between the 'deserving' poor and the 'undeserving' poor was eventually made. And charitable help became much more controlled by the authorities and by law, with Workhouses, Houses of Correction and infirmaries springing up in the towns and cities. By the beginning of the 19th Century, 30 per cent of British people were destitute, mostly hard-working people - but poorly paid. By the 20th Century, successive Governments had built the foundations of modern day infrastructure by providing clean water, sewers, transport networks and social services - over concerns about national and economic efficiency.
The point I'm trying to make here is that we have tended to view social and economic reform in a light where jolly, kind-hearted liberals were simply trying to improve the lot of the poor - for purely philanthropic reasons. In reality, many reforms came into being simply out of concern over the deviancy of the poor, over laziness, over unemployment, over begging, over crime, over a lack of fighting-fit men, over economic inefficiency and because disease didn't simply stay in the poor areas of town but effected the rich in equal measures. In many cases, improvements for the poor made sound economic sense for the country as a whole.
Certainly, by the 1940's Britain's poor was not only in the grip of war but still in the grip of poverty and needed assurances that things would change for the better once war had ended. That change came with the Beveridge report of 1942 which promoted not only the National Health Service but better welfare provision, including residential care for people in need. That said, Beveridge saw full employment not only as a necessary in order to 'pay' for such radical reform, but to get Brits off their bums.
Read the Beveridge report itself and there is arguably as much a concern over the laziness or fecklessness of the poor as there where perhaps in Elizabethan England of the 1600's. But of course, this would be a much more humane approach to poverty and ill-health than we had seen before. But if WWII had never happened it is highly unlikely that Beveridge would have been able to propose such radical change, and it is unlikely that Britain's Labour movement would have had the momentum to introduce it.
The real concern of the traditional 'elites' at the time was Communism and a fear that it could take a real hold in Britain without some sort of radical improvements for Britain's downtrodden. So, better for the wealthy to bend a little in the wind then risk up-rooting the whole tree? However, this half-hearted acceptance has arguably never gone away, particularly concerns that full employment would only drive up the wage bills of those who own businesses, and that welfare costs would spiral out of control under increased demand.
Therefore, it should come as no surprise that Beveridge's welfare state would soon come under the cosh from those wanting to abolish it and simply in order to go back to the way things were before. Especially when concerns over a 'Communist' Britain had slowly waned away, with a nation feeling much more prosperous, and with income and wealth inequality at their narrowest during the late 1960s and 1970s.
Certainly, with the introduction of a comprehensive National Health Service, the medical profession not only continued to 'police' disabled people as they had come to do for some years previously, but now also became the gatekeepers to welfare benefits for those workers who couldn't work through ill-health. Society therefore needed somebody to police temporary health conditions and GP's arguably became the main backbone of that mechanism.
The 'sick role' is a term that has been bandied about in medical sociology since 1951, regarding sickness and the rights and obligations of those affected by sickness. It is a concept originally created by American sociologist Talcott Parsons who argued that society in general craves 'order' and 'structure', therefore being sick means that the sufferer has to enter a role of 'sanctioned deviance' in order to access state support.
Arguably, up to the 20th Century, this social craving for order and structure in a world of 'deviance' was overtly displayed in its cruel treatment of disabled people (side-lined into institutions and hospitals) its cruel treatment of mental illness (locking-up people into lunatic asylums) and its cruel treatment of poverty (segregating deserving people into workhouses and the undeserving into prison).
What it meant by the late 1940's was that the individual who has fallen ill is not only physically sick but had to adhere to a specifically patterned social role of being sick - accepting both the rights and obligations based on the social norms that surround it. Still perhaps a leftover of the deserving/undeserving portrayal of poverty that British society had seen for many hundreds of years previously. However, one of the chief obligations of the sick role is that the person who is sick should try to get well - because 'sickness' was only meant to be a temporary situation. And of course, anybody who has developed or acquired a disability, it is highly unlikely for them to get any better.
Breaking the Rules
While Parson's 'sick role' wasn't designed to talk about disability as such, people who are sick or disabled both actually break the same rules of society in a similar way - because they are viewed as being 'non-productive' members within it. Of course, people who are sick or disabled are not setting out to be deviant nor non-productive, but are forced into that role by chance. But in a society that has always considered the poor as inherently feckless, that little detail matters not one jot.
Since British society had already removed many disabled people from view as well as from access to employment (from the beginning of the industrial age onwards) the sick-role was arguably never going to be an issue for disabled people. But by the 1980's, particularly with 'care' switching from institutionalised care to 'care in the community' disabled people have had a much more visible role within society. Together with the nagging narrative of widespread benefit fraud pushed forward by Britain's media, sickness and disability had once again become a highly contentious issue in terms of deviancy from the desired social norms of behaviour. But again we perhaps hit upon the notion that the poorest within Britain are still being split, by some people at least, into those deserving of help and those who are not.
Of course, while being sick may not be your own fault, the sick-role expects people to take every effort to make themselves better. Therefore, the sick have an obligation to be healthy and it was the medical profession who had been tasked as the main gatekeeper of the resources provided to help those in a temporary position of ill-health. Which of course not only has implications for disabled people but also those who are seen as being 'deviant' in other ways - by having unhealthy or immoral life styles.
Overweight people often carry a social stigma, while cancers such as lung cancer or cervical cancer also used to carry the stigma of being primarily self-created - by smoking (in the case of lung cancer) or by promiscuous behaviour (in the case of cervical cancer). In addition, some disabled people and those with mental health conditions do not look 'sick' or look 'disabled', states that can also be viewed sometimes as being less real or less valid than some others. And, it should also be noted that alcohol or drug addictions are not classed as disabilities within any legal definition of disability in the UK.
Carrying on the Good Fight
Arguably, the Work Capability Assessment introduced in 2008 should be seen in association with previous welfare reforms that began in the 1980's by Margaret Thatcher. While previous reforms of the 'nanny state' were also essentially about shoring up the work ethic by reemphasising the role of self-responsibility, this new assessment not only attempts to reinforce sickness as a temporary state but effectively treats disability and mental illness as temporary states too. Hence its constant focus on assessment and reassessment by bureaucrats who often go against medical knowledge and the medical expertise of doctors.
The Work Capability Assessment therefore not only drags disabled people into the sick-role, while beating them with a big stick in the process, but also removes the medical profession as the primary gatekeepers to welfare benefits completely. In a sense, welfare benefits have not only become rationed by the state but are now completely under the control of the state's apparatus without interference from anybody else.
The Persistent Fecklessness of the Poor
One of the most interesting things about welfare reform today is that we can still hear the same arguments that we would have heard in the 1500's, 1600's, 1700's and 1800's. In short, it is the fecklessness and laziness of Britain's poor that primarily creates unemployment, sickness and disability. Feckless people who expect something for nothing and where charity or welfare payments only encourage a dependency and a lack of self-responsibility.
Clearly, when the Work Capability Assessment was developed, under a Labour administration, it was sold to the public under the notion that it was a test that looked to accentuate the positive - by looking at what people can do and not what they can't. A warm, helping hand rather than a kick in the teeth. However, it's a policy that automatically disbelieves both claimant's experiences and medical opinion, and where the chief motivator of the policy seems to be a belief that sick and disabled people can do much more than they say they can - if they really wanted to. It is therefore a test build purely on prejudice and a prejudice that seems deep-rooted in a fear of the poor itself. And a fear of laziness and fecklessness that obviously cuts across many centuries.
In a damning report to the UN on disability rights last year, the government-backed Equality and Human Rights Commission cited "deeply concerning" evidence that despite government pledges to improve conditions for the nearly 14 million disabled Britons, their situation was getting worse across the UK. Its report found that "more and more disabled people are finding it difficult to live independently and be included, and participate, in their communities on an equal basis".
In short, the report indicated that disabled people are now being pushed back to the dark ages, pushed out of work, pushed out of state welfare and despite the rhetoric otherwise, pushed to be more dependent on charity, family and friends than they were previously. And it's a roll-back not only of welfare provision but a roll-back to previous decades where equality didn't even exist and where disabled people merely survived - if they were lucky.
In 2017, the UN criticised the UK's "laws, regulations and practices that discriminate against persons with disabilities". For all intent and purposes, it looks as if Government is deliberately discriminating against disabled people with a policy that is little more than playing Russian roulette with disabled people's lives. Become more independent from the state or......bang, face the consequences.
If we look back to policy such as 'care in the community' we can see that such a policy was merely the beginning of a ruse that should have really been called - 'care BY the community'. A heavy-handed state manipulation exercise aimed at getting families and communities to look after their own - or at least to do more. Something taken-up further by political ideology such as the 'Big Society', a form of post-Thatcherite Conservatism.
For me, care in the community was always an ideological exercise aimed at finally destroying the 'nanny state' for ever and one that is now being taken to its ultimate conclusion. If you can't look after yourself and if your family can't or won't look after you, then goodbye. I hear of this regularly, where relatives are forced to travel from one end of the country to the other, simply to do what they can for elderly, sick and disabled people who have no access to social services and barely any other assistance they may need in the home. Yes, it has finally come down to this. Family, community and charity taking up the slack in a social and welfare system that has been systematically, deliberately and wilfully destroyed.
Something for Nothing?
As a bare minimum, Britain certainly have a huge problem if both charity and state welfare are perceived to be producing laziness and fecklessness in its population. Recently, the growth of charity 'food-bank' use in the UK has also been met by accusations within Westminster that people using food-banks are simply after something for 'free'. Food-banks are therefore not perceived by some to be the result of severe economic conditions but simply another cause of British fecklessness and the continuation of a something-for-nothing mentality. Brits love freebies!! Like they did in the 1500's, 1600's, 1700's, 1800's etc., etc.? Clearly, this sort of bouncing off walls does nothing to eliminate poverty but it does highlight the continuing victim blaming that some politicians are rather adept at, no matter the century.
Of course, Government argue that they are simply trying to do more and more with limited resources and a growing elderly population. For example, getting more disabled people into employment therefore gets them out of poverty. But in any case, the methods used can be highly criticised and any successes hotly disputed. While the numbers of disabled people in employment may have gone up slightly, the quality of that work and stability of that work certainly looks to have headed south. After 8 years in power Government certainly hasn't done much to decrease the gap between the percentage of disabled people in employment (40%) and the percentage of abled-bodied (80%).
And this discrepancy between the experiences of disabled people and the able-bodied become much more poignant when we hear of suicides committed by people such as Kevin Dooley. By randomly challenging Mr Dooley's disabilities the DWP saw its top priority as simply one of saving £70 a week. £70 that was no doubt, something for nothing, and a something for nothing that only encourages dependency. In contrast, the main priorities of many disabled people are much more practical, such as how to get themselves washed and dressed in the morning or worrying where the next meal is coming from. And in some cases, worrying if they are still going to be alive in the morning. So, let's get some perspective here.
Only Obeying Orders?
By all accounts, Mr Dooley was incapable of doing any work to everybody despite the work assessors themselves and simply because he ticked a few of the 'right' boxes - or rather, the wrong boxes. Of course, if Mr Dooley had survived to go to a tribunal he may have indeed won. But assessors are simply doing what they are told to do, reject as many cases as possible and hope that some don't go to a tribunal - for whatever reason that may be.
Last year, the Department for Work and Pensions admitted that it had spent more than £100m in just over two years on administering reviews and appeals against disability benefits. Millions of pounds a year are also spent by the Ministry of Justice on the appeals, about two-thirds of which tend to be won by claimants. And this is on top of the £1.6Billion the DWP set aside for the work assessments themselves.
Sadly, in the case of Kevin Dooley he has certainly disappeared from the DWP books forever, and I seriously doubt if those assessors who had some level of involvement in his death, actually care? I also doubt if the DWP itself have any twangs of guilt feelings or regret. If Government are setting mandatory targets of 80% refusal rates for benefit claims, then it should come as no surprise if large numbers of benefit claimants are therefore refused benefits because of it.
A few years ago, a series of secret internal inquiries into the deaths of people claiming social security revealed that Government ministers were repeatedly warned of shortcomings in the treatment of vulnerable claimants facing traumatic cuts to their benefits entitlements. The reports challenged repeated claims by DWP ministers that there is no connection between government welfare reform and the deaths of vulnerable claimants such as people like Mr Dooley.
Some years later we are still highlighting people committing suicide over dealings with the DWP and the DWP is still denying any association between such deaths and welfare reform. Therefore, one can only assume that Government is perfectly fine with people committing suicide in this way. We can also only assume that since welfare reforms cost far more than they save, going against the original premise of why reform was argued to be necessary in the first place, then whatever else these reforms were meant to achieve, they are actually achieving?
Clearly, we are in the grip of both a status-quo and an impasse in British welfare provision that looks set to continue for some time to come. The DWP have set out on a course that they have clearly no intention of turning back from. So, the only conclusion we can draw is that there will even more Kevin Dooley's to come, and many more families trying to make sense of a social welfare system that only seems to be set up to punish and sanction, rather than Beveridge's original proposal - to help.
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