What 2020 Taught Me About Disability in the UK
Author: Paul Dodenhoff : Contact: Disabled World (www.disabled-world.com)
Published: 2021-01-04 : (Rev. 2021-01-07)
Synopsis and Key Points:
Paul Dodenhoff reports on how the current COVID-19 global pandemic has further highlighted people with disabilities are still actively discriminated against.
In short, the current COVID-19 global pandemic has further highlighted that people with disabilities are still actively discriminated against - particularly in the UK. Not just actively discriminated against, mind you, but hurriedly thrown under the bus and sacrificed to the whims and wishes of the COVID gods - in terms of the rationing of resources. All for the greater good, of course. While attitudes towards disability are perceived as being poor the whole world over, there are nuances to that argument. In the 14 years since the United Nations adopted the Convention on the Rights of Persons with Disabilities, it has been signed and ratified by more than 168 nations. Which is good news as regards human rights, as traditionally, disabled people are one of the last groups on earth were equal rights has been recognised. Of course, signing a piece of paper saying you are 'equal' doesn't necessarily translate into equality on the ground. According to reports, very few countries in the world can actually guarantee positive attitudes towards disability nor good access to education, jobs and health care. And if that is a problem when times are perceived as being 'good', what happens to disabled people when the whole world is in crisis?
From the start of this pandemic, there was a real feeling amongst disabled people in Britain at least, that health care was indeed going to be rationed and that it was those who were elderly or disabled in some way who would almost certainly bear the brunt of that rationing. In part, that rationale came from the experience of doctors in Italy who were forced by soaring hospitalisations to ration health care to Italian patients - under the banner of 'clinical judgement'. But effectively denied treatment based on their age and whether they have other underlying health conditions, where age and disability was deemed to dramatically determine recovery. The other part, came arguably not only through the perceived slowness of our government to actually do anything constructive as the situation unfolded in China, Italy and then France, apart from frightening the vulnerable with talk of herd immunity and it's implied concept of survival of the fitness. But also through the experience of disabled Brits who had already witnessed over the years, a political and media hostility that had seen their disabilities downgraded, underplayed and dismissed as fraudulent. With welfare benefits reduced or withdrawn completely, all with the aim of making the welfare system exceptionally tougher and thereby forcing more sick and disabled people into work.
You only need to trace the policy papers of welfare reform dating back to the Labour administration of 1997 to 2010 to get an handle on why. Arguably, accusations over welfare fraud and an erosion of the work ethic are simply the tools that have been used to sell welfare reform to the general public. Primarily, the powers that be were worried about a future shortage of workers and looked towards both elderly and disabled people in filling that shortfall. Targeting elderly people by continuing to push up the state retirement age to nonsensically high levels, while targeting disabled people with a battering ram of reforms that eventually caused what the UN called - a Human Catastrophe. While, the overall deviance of the poor may never be that far away in the minds of the political elites, it is the filling of jobs that are arguably the main concern. Therefore, if your own government(s) can seemingly act so callously over what they see as simply a shortage of willing workers (or a lack of work ethic) then there are no prizes for guessing what callous lengths they could go when immense pressures were put upon the provision of health and social care. If our government needed to choose who will survive the pandemic and who will not, the perceived sick, the lame and the lazy won't very be high upon the list.
It is pretty well documented why I believe British welfare reform to be little more than a big stick to beat those our government(s) traditionally fear and distrust - particularly for not pulling their weight within society. A devaluation of identity down to the simple constructs of 'worker' and 'non-worker'. Doesn't even matter if you have retired early, become ill, taking time off for study or looking after the kids or the elderly, you will all be included in government statistics that prove to the world that you are indeed simply lazy and unmotivated. That's if you happen to be between the 'working age' of 16 to 66 and not employed for any reason. So, if work and the supply of workers are indeed the most important things in the ideological thinking of our politicians, rather than a basic duty of care towards it's own citizens, then the decision making process will always have an eye on making sure that people are actively encouraged into work, and that nothing is presented that hinders work nor hampers the motivation to work.
And we've heard these arguments in the UK for decades and decades, that welfare provision and charity actively discourage the work ethic. Arguments that display deeply-rooted assumptions that the poor are not just inherently lazy, but deviant and in need of constant control. With the concepts of the 'deserving' and 'undeserving' poor having been well established in Britain's legislation since at least 1834. So, while other nations were dealing with the COVID-19 pandemic by hurriedly locking down their economies, it was no surprise to me that Britain was tediously slow in doing the same. The show MUST go on. Arguably there was no initial headroom in 'Conservative' thinking that could even tolerate the shutting down of millions of jobs, even if was to save lives. But if welfare reform had indeed become a tool to punish the deviant with, then that is only one step away from the withdrawal of health care provision as an additional way of punishing those who are deemed to suffer from a serious lack of work ethic. And not just a visible display of our socio-economic value system, but a display of outrageous animosity towards those we have traditionally feared (either consciously or sub-consciously).
Of course, other countries have also discussed the rationing of care. But while pandemics such as COVID-19 place everyone at risk, it is those prone to pre-existing forms of social injustice and discrimination who may experience something much more severe. And primarily in terms of continual bias and prejudice against them. While only a minority of the people infected by the SARS-CoV-2 virus become severely ill and eventually progress to needing intensive care (including mechanical ventilation) demand for these resources can significantly exceed supply - as we indeed saw in Italy. But that is the same for any country. So, the UK was not the only country in the world that 'suggested' excluding some social groups from various stages of health care. Countries that also included other relatively rich nations such as the US, Australia and several European countries. But it is a suggestion that has caused immense consternation from those who are targeted, with obvious reason.
While some underlying conditions such as hypertension, cardiovascular disease, chronic obstructive pulmonary disease and cancer are known to decrease the chance of recovery from COVID-19, it is not a given. People seriously ill from COVID-19 can recover and have recovered, regardless of age and/or disability. Crucially for disabled people across many countries, triage protocols developed to deal with COVID-19 arguably make the largely inaccurate assumption that disability of any type goes hand-in-hand with compromised health. And compromised to the point were health care rationing therefore makes complete sense in the midst of a global health care crisis. But that strategy of 'common sense' arguably also includes people with mental disabilities or those with mental illness, potentially denying life-saving health care to anyone with Downs syndrome, cerebral palsy or autism, and even those who has suffered a life-time of clinical depression. For sure, if health care rationing is indeed called for, then there has to be a pecking order, right?
Since its inception, the principals of the UK's NHS were designed to provide a comprehensive service that is available to all irrespective of gender, race, disability, age, sexual orientation, religion or belief. In short, it has a duty of care to each and every one of us in the UK and where access to NHS services is based purely on 'clinical need' - not on an individual's ability to pay. Subsequently, there is no outright mention of there being some kind of natural pecking order in the legislation nor what should happen if the system became overwhelmed. Arguably, there is no working definition of 'clinical need' apart from the legally based agreement of access for all. Of course, that concept of clinical need may have been eroded over the decades, since the provision of care very much depends upon funding. And government after government has found taxation and the funding of public institutions not just a hot topic - but a highly contentious one. For example, if we refer back to the previous Labour administration of 1997 to 2010, Alan Milburn, England's health secretary at time, actually admitted in 2000 that rationing was indeed part of the government's modernisation agenda for the health service. So, while access to the NHS may be written into British legislation, there will always be some level of rationing due to the way the NHS is governed and funded. Although, for most of the time, that rationing will not be totally obvious to us, simply materialising in terms of long queues, long delays for treatment or inferior treatments. While the NHS has always had to set priorities, financial pressures will of course restrict access to certain services, or dilute the quality of care provided. The rationing of care in the UK, therefore already existed long before COVID-19. Which is in contrast to the United States, where health care is privately financed and any rationing largely implemented by price and affordability to the individual or the organization providing the insurance. If you don't have health care insurance or cannot afford the bills, tough luck. And as it stands, millions of American's seem perfectly happy with that situation.
But if we refer back to Italy, who were rated by the World Health Organisation before the global pandemic, as having one of the best health care systems in the world, and one run as a combination of public-private provision. It's health care system folded quickly under pressure, not only suggesting the rationing of health care but forced medics into doing it, with some elderly patients receiving little care, if any. Heartbreaking for medics on the front line, especially as Italy is always perceived as having pretty good attitudes towards it's elderly. Yet, Italian ethical guidelines issued from early March 2020 argued that it "may be necessary" to place an age limit on those being admitted to intensive care. Similarly, on the 23 March 2020, a group of doctors and academics from around the world published a set of ethical guidelines in the New England Journal of Medicine (NEJM), outlining how to ration resources during the Covid-19 pandemic. Among the recommendations is that the conventional approach of treating people on a first-come, first-served basis should not apply during the pandemic. It argued instead for prioritising severely ill patients who are younger and who have fewer existing health conditions. Obviously, with the aim of getting the best outcome for society by targeting care not at the most vulnerable but at those who are seen as having the better chance of survival. Logical perhaps to some, understandable certainly to many. But is it right? While it may seem logical in a crisis to focus on how to get the best outcome out of the available resources, in this case, that will always be at the expense of others. There are also no guarantees that an elderly patient or disabled patient would not recover form COVID-19 compared to somebody younger. And no guarantees that a disabled person is less healthier than somebody able-bodied.
For me, these decisions are being made without any input nor consent from the patient, nor the patients family. They are also being made without the input from organisations concerned with the both protecting and advancing the human rights of elderly people and disabled people. Decisions that are judged entirely upon age, disability or perceived 'frailty' - and very little else. Medics across the world have indeed been using the concept of 'frailty for decades, developing 'frailty' scales or values in order to identify those who may suffer increased vulnerability to external stressors because of age or disability, and who therefore may need targeted support. GP's in the UK saw a similar system introduced in 2017/18. However, since the start of the 2020 COVID-19 pandemic, it is clear that such scales are now being suggested as a tool in order to aid treatment decisions for front-line clinicians. Thereby, reducing individuals down into numbers or values that subsequently determine their level of treatment (or not).
Certainly for me, the main concern in establishing such a pecking order for the rationing of treatment is the concern centred around the risk that clinicians may be influenced by the value that society itself places upon the age of individuals and perceptions of disability. So much so, here in the UK, campaign groups threatened legal action after the health care watchdog, the National Institute for Health and Care Excellence (NICE) indeed advised medics that they should assess patients with learning disabilities, autism and other conditions for 'frailty' when deciding who receives health care or not. Shockingly, when you also factor in that some Brits over the age of 65 were reported as having been sent texts at the time from their GP clinics, warning them that they were no longer going to be treated by the NHS. With some elderly people in care homes also complaining about being pressurised into signing 'Do not resuscitate' orders, by their own doctors. A perceived blanket withdrawal of treatment from anybody who would be considered as scoring a high value for 'frailty'.
Of course, all this is now denied. As is government talk of simply letting the virus rip though communities in order to return us all to some level of economic normality as quickly as possible. Whatever is the truth, many of us were at the very least uncomfortable with an administration that seemed almost comatose to the fast flowing situation that was unfolding across the world. It was as if we were somehow immune to the virus. Sure, these may have been the actions of human beings under immense emotional and psychological pressure at the time and unsure really how to react. Particularly a 'Conservative' administration who traditionally baulk at any government intervention in the affairs of the individual. However, the fabric of British society is glaringly exposed as woefully thin if some of us can even dare to think about withdrawing health care from vulnerable people purely on the basis of age, physical or intellectual disability. Whatever way we justify it. It is also illegal, something seemingly forgotten in the public panic over a shortage of ICU beds, a shortage of PPE and and a shortage of test kits.
Ironically, we hadn't even reached a crisis moment in the provision of COVID-19 care at the point when these issues were being discussed. At least in Italy, they were discussing the possible rationing of care in the heat of battle - so to speak. Here, we were barely at the beginning of our crisis, with a total death toll of just over 200 when NICE seemed to have looked at the developing situation and decided that some people indeed needed to be sacrificed for the general good of the rest. Or at best, deciding to leave some British citizens to their own devices. So, are these errant behaviours of our institutions simply blips of human judgement, misunderstandings and misinterpretations of the science or the law - or a symptom of something much, much darker and deep-rooted? Clearly, when the poop really did look like hitting the fan and the ship deemed in danger of capsizing, our captain(s) first thoughts were of who they should throw out of the lifeboat first? A hierarchy and pecking order seemingly decided by age and disability.
Certainly, months down the line when the makeshift emergency hospitals stood unused and the NHS survived the first wave of the virus pretty much intact, we didn't see much evidence that either elderly or disabled people where being deliberately left in their droves to die. The hero's stuck on the NHS front line battled for every life they could save, regardless of age or disability. Or at least, that is the impression we have. So, any criticism presented here is not aimed at medics on the front-line of the crisis, it is aimed at their leadership. Or rather, a lack of it. In the early days of the pandemic, we can't ignore the fact that there was indeed talk and suggestions over the rationing of health care that was seemingly based on little more than bias and prejudice. Prejudice in terms of how valuable (or not) we as a society perceive differing age groups to be and differing levels of 'ability' to be. A value that is arguably generated primarily in terms of economic productivity. Or in other words, you are a burden to society if you are not capable of fulfilling some kind of economic role within society due to old age and/or disability. And you are therefore expendable because of it.
If we didn't actually see masses of elderly people and disabled people 'culled' for the benefit of the rest, we certainly did witness some level of expendability in the way UK care homes were treated by our government during this crisis. For example, a report by Amnesty International released in October 2020 criticised the government for what it called 'seriously irresponsible' decisions that put tens of thousands of elderly lives at risk. Decisions that also lead to human rights violations of care home residents themselves. Between the 2nd March and 12th June this year 28,186 excess deaths were recorded in care homes in England, with over 18,500 of those residents confirmed to have died with COVID-19. That was more than a third of England's total death toll due to COVID at the time. And no real surprise really when it was discovered sometime later that government had actively discharged around 25,000 elderly patients from hospitals into care homes, including those already infected with COVID-19 or possibly infected. It is therefore a death toll that was entirely avoidable. But it's an expendability also witnessed with disabled people themselves, who were not only failed to be protected from COVID-19 but put at heightened risk. A report by Public Health England published in November 2020 highlighted that people with learning disabilities were more than 6 times more likely to die from COVID-19 than the rest of the population. In addition, only a few months previously, a consortium of some of the major disability charities in the UK argued that 14 million disabled people had been 'forgotten by the Government' during the pandemic and 'allowed to fall through the cracks'. Arguably, not simply falling through the cracks but actively pushed into them by an uncaring, bigoted and highly chaotic administration.
But am I being too harsh? These were of course, difficult times requiring difficult decisions and we are not the only country in the world to make 'mistakes'. Surprisingly, Sweden didn't exactly play a blinder in protecting their elderly people from COVID-19 either. I say surprisingly, because while our own government may have a reputation amongst some of us of being simply a bunch of glorified pirates and scallywags, many take a different view of Sweden and one primarily as a democratic, free, happy and progressive society. Not a country you would immediately mark down as one willing to push it's most vulnerable off a cliff edge. Yet from the the off, Sweden seemed to pick up on our barely disguised leanings towards herd immunity and ran off with it completely, shunning national lock downs and face masks, while leaving schools, restaurants and businesses largely open - and simply appealing to it's citizens to socially distance and maintain good hygiene. In fact, Anders Tegnell, Sweden's state epidemiologist, was decidedly miffed that we didn't do the same here in the UK, especially after sending out early signals that we would. However, the Swedes are a much more socially aware group of people, Anders told us in a BBC interview at the time and apparently don't send their kids to school when sick, while Swedish workers are not forced into work by employers when full of a cold or vomiting all over the place. Or at least that's what I gather from Mr Tegnell.
Despite the hype from Anders, the results indicate something different. Sweden has a COVID-19 death toll way higher than it's neighbours, nearly half of which are made up of care home residents. While the Swedish government continues to vigorously defend it's policy, various inquiries found serious failures in also protecting it's elderly from the pandemic. Policy that even earned a recent rebuke from Sweden's King Carl XVI Gustaf. While it is hard to get an official account of how disabled people have actually fared during Sweden's rather laissez-faire approach to COVID-19, studies show that prior to the COVID-19 pandemic, disabled people in Sweden had been struggling to access adequate support and services, as well as fighting against state imposed, austerity measures. A story we know only too well here in the UK. However, the Swedish Public Health Agency did issue intensive care guidelines early on in the crisis that primarily focused COVID care on only treating those who had the greatest chance of survival. So, another country at least with a clearly worrying attitude regarding the right to equal health care for those perceived as being elderly, sick or disabled.
Certainly, listen to reports coming out of the COVID-19 Disability Rights Monitor, a global survey of the experiences of disabled people, many nations around the world have 'overwhelmingly failed' to protect disabled people's rights in responding to the global pandemic. Leading to disabled people being disproportionately effected. Interestingly, disabled people have equally been failed by wealthy nations and not only those perceived as being poor. Failures that indeed include discrimination during triage and the denial of life saving treatments, an inability to leave the home to access healthcare and medications, plus serious breakdowns in community support.
Of course, it was pretty much guaranteed that disabled people would be disproportionately effected by the pandemic, right across the world. That said, nations such as the UK build their reputation upon being 'tolerant' of race, religion, sexuality and disability, as well as being the promoters of freedom, equality and democracy. It's an identity that is perhaps a rather narcissistic one, creating a false image of superiority and godliness, while in reality, pretty much treating all and sundry like....rubbish. It undoubtedly also creates a tension between what is basically a false sense of identity and of superior values or beliefs, and the reality of not actually being very pleasant at all.
As the UK faces a second wave of the virus, if not a third wave, medics in the UK will undoubtedly be faced with the dilemma of who to save and who not to. While many nations have signalled that they will certainly ration health care based upon 'frailty' of some type, is this actually legal? As far as the UK is concerned, lawyers still argue that any denial of treatment based upon disability, including chronic illness or age, most certainly violates the Equalities Act 2010. In addition, there are apparently any number of scenarios where doctors could be directly liable under British criminal law for charges such as gross negligence, manslaughter, criminal battery or wilful neglect. The UK government could also be in direct violation of its obligations under Article 8 of the European Convention on Human Rights.
We have all heard from our institutions, 'suggestions' and 'recommendations' about how health care should be rationed during the pandemic, but those solutions are also arguably illegal. However, they don't just actively discriminate against age and disability, but also place medics in an intolerable position. Leaving them completely to carry the can for the clinical decisions they may make. Up to November 2020, medical organisations in the UK were still calling for emergency legislation to prevent medics from facing criminal prosecution when rationing resources due to the pandemic. Certainly, such protections won't do anything to protect elderly or disabled patients from being discriminated against, in what are still existential arguments of who should live and who should be left to die. But it highlights that while state institutions seem to be wholeheartedly pushing medics into taking decisions based primarily upon age and disability, these decisions may not be actually legal under either British or international law. And government arguably also know it. In reality, what it's institutions are pushing for is a form of utilitarianism, perceiving the benefits to society to be greater by giving some people extra years of life - while taking it off others (and primarily those are deemed to be less valuable, of course).
As a minimum, groups and organisations who look towards protecting the human rights of elderly people or disabled people need to be consulted before faceless institutions issue 'suggestions' and 'recommendations' over clinical practice. But even more importantly, such decisions perhaps need to be discussed with the patients involved and/or their relatives. While these are indeed difficult times, the right thing to do is not to undermine the human rights of one person by simply 'sacrificing' them without their knowledge nor permission. Of course, the UK government could argue that medics are making rationing decisions on who receives treatment and who doesn't, all the time (but one based upon funding constraints). Just that we never actually acknowledge it. And in the middle of a global pandemic, all nations are being forced to make difficult choices between who gets treatment and who doesn't. It is therefore nothing to do with social values, nothing to do with employment or workers and certainly nothing to do with discrimination. But should institutions be made much more transparent and made much more accountable than simply issuing suggestions that come across as orders or instructions to medics? For me, government may simply be denying it's role, responsibility and accountability in the death of British citizens, both at present and in the future. Particularly when we consider that the UK already had a chronic shortage of ICU beds as well as a shortage of ICU staff, well before the pandemic kicked in. And while the UK has built a number of emergency hospitals, it is argued that there will never be enough doctors and nurses available to staff them.
But even when the UK was in the middle of it's first wave of the crisis and while ICU beds were still available, it was reported by Britain's media that some patients aged over 80 and some in their 60s, were not being given life-saving treatment at the time. And simply because health officials were concerned not to tie up those resources for younger age groups. So, even when there wasn't actually a shortage of resources, officials were accused of holding back treatments and primarily based upon 'frailty' scores and values. Of course, NHS chiefs hit back claiming that such reports were not just false but 'deeply offensive'. However, once again, whatever the truth of these reports, British institutions need to be seen to be both transparent and accountable for their actions - or inactions. But I'm going around in ever decreasing circles now.
The next few months will be an extremely trying time for British medics. Hospital admissions are going through the roof and more people are lying in a hospital bed with COVID-19 today, than were during the peak of our first wave of the crisis. Those hospital admissions are also including younger age groups. So, the combination of a faster circulating version of this virus, together with the winter weather and a bungling incompetent government, will certainly put us all under strain. My gut instinct is that we are actually heading towards a disaster in Britain, and certainly one that I've not seen in my lifetime. And if there is indeed rationing of health care to be done, you can be pretty much guarantee that our government will throw itself wholeheartedly into the exercise. The signs have been there for decades.
- 1: For the Love of Babies : Elizabeth Gwilliam (2014/05/09)
- 2: What 2020 Taught Me About Disability in the UK : Paul Dodenhoff (2021/01/04)
- 3: Stop Therapy Doll Shaming - A Personal Plea : Thecla (2020/12/25)
- 4: How Much of Life is in a Man's Hands? : Downs Designs Dreams (2015/11/11)
- 5: Toxic Mattress Chemicals Can Make You Sick : The Futon Shop (2012/01/16)
- 6: Most US Presidents Forgotten Within 50 - 100 Years : Washington University in St. Louis (2014/11/28)
- 7: Adaptive Clothing for People with Down Syndrome by Ashley : Disabled World (2013/09/14)
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