In the first half of the last century, institutions in the state of Illinois implemented a policy of “lethal neglect” as a way of dealing with people with learning disabilities. At a time when the eugenic movement was at its most popular and when the world economy was in crisis, people with learning disabilities were seen as not properly human, a burden, and as a waste of resources. And across the world politicians looked for a range of ways to save resources and to deal with the what they saw as the problem of learning disabled people. The practices of the Nazi Euthanisia programme are well known, but the seemingly less draconian measures adopted by other countries are less well documented and the thing that many of them have in common is the role that neglect and inaction plays as an expression of a government policy.
The policy of “lethal neglect” practiced in Illinois involved deliberately infecting people with the tuberculosis virus and then failing to treat them for the disease when they became ill. So, in this form of “euthanasia” the deliberate act of infecting people with learning disabilities was coupled with a deliberate act of neglect, hence the reason that it is seen as one of the most active forms of lethal neglect and it is unsurprising that the death rate in these institutions rose to between 30 and 40%.
A less obvious form of lethal neglect was practised in England between 1914 and 1918. Shortly after the outbreak of the First World War, many of the England’s asylums were cleared so that they could be converted in hospitals for wounded soldiers. It is not totally clear where all of the people who had lived in the asylums went, however it seems that the majority were simply crammed into the remaining asylums. The resulting over-crowding and deliberate reductions in the amount of food being given to patients meant that the people living in the asylums were far more prone to infectious diseases and by the end of the war over 17,000 people are estimated to have died from a policy of deliberate overcrowding and malnourishment. Whilst this policy was more passive than the lethal neglect practised in Illinois, in that it didn’t involve the deliberate infection of patients, it did lead to a massive increase in the death rate from around 10% before the war to 20% in 1918 and whilst influenza did play a small role in that increase most of the additional deaths were from tuberculosis.
During the Second World War in occupied France, malnourishment and starvation played a role in the deaths of over 40,000 people in psychiatric hospitals. There has been a significant amount of debate in France as to whether or not these deaths amounted to what Max Lafont described as “A gentle extermination” and an act of deliberate policy on the part of the Vichy government, or whether they were simply an inevitable result of the German occupation. The differing death rates in some other occupied countries would indicate that this latter cause is unlikely to be case and that if the deaths in France were not a kind of “gentle extermination” they were at least another form of a policy of lethal neglect. But these stark expressions of neglect are not the only forms of lethal neglect that can prove fatal to people with a learning disability.
In England in 2007 Mencap published a report written by Beverley Dawkins entitled Death by Indifference, it told the stories of six people who had died as a result of what Mencap claimed was institutional discrimination. These claims would be investigated by the Health and Parliamentary Ombudsmen whose findings would be published in Six lives: the provision of public services to people with learning disabilities.
The Six lives report would not uphold Mencap’s claim that Mark Cannon, Warren Cox, Emma Kemp, Edward Hughes, Martin Ryan and Tom Wakefield had died as a result of institutional discrimination, it did however state:
Our investigation reports illustrate some significant and distressing failures in service across both health and social care, leading to situations in which people with learning disabilities experienced prolonged suffering and inappropriate care.
Our investigations found maladministration, service failure and un-remedied injustice in relation to a number, but not all, of the NHS bodies and local councils involved. In some cases we concluded that there had been maladministration and service failure for disability related reasons. We also found in some cases that the public bodies concerned had failed to live up to human rights principles, especially those of dignity and equality.
These findings mirrored those of the Sir Jonathon Michael Inquiry into the issue of access to healthcare for people with learning disabilities, which published its findings in July 2008. It found that “people with learning disabilities have higher levels of unmet need and receive less effective treatment” (Healthcare for All, p.7) than other people, despite the fact that a range of legislative safeguards were in place that should have prevented this.
So just to clarify the timeline on this. The issue of premature deaths in the UK was raised by Mencap in 2007. The government’s first response to this was Healthcare for All (July 2008). Which was then followed by the Six Lives Report in 2009. The findings of all three of these reports then led to the establishment of the Confidential Inquiry into the Premature deaths of People with Learning Disabilities which reported its findings in March 2013 – between 8 and 10 years after the deaths of Mark Cannon, Warren Cox, Emma Kemp, Edward Hughes, Martin Ryan and Tom Wakefield.
The Confidential Inquiry’s remit was to explore the extent to which the findings of Death by Indifference and the Six Lives Report were replicated on a larger scale and when it reported in 2013 its own findings were stark:
Of the 238 deaths of people with learning disabilities for which agreement was reached by the Overview Panel, 42% were assessed as being premature. The most common reasons for deaths being assessed as premature were: delays or problems with diagnosis or treatment; and problems with identifying needs and providing appropriate care in response to changing needs
The Confidential Inquiry should have led to concrete action that would have made a difference to the lives of people with learning disabilities. It didn’t but what it did lead to – was more research in the form of the Learning Disabilities Mortality Review Programme or LeDeR and yesterday the programme published its findings for the year 2016/17. In it stated that 28% of people with learning disabilities would die before they are fifty and from other data published in a blog by Chris Hatton we know “that people with learning disabilities live, on average, lives 15-20 years shorter than other people”.
Perhaps the most significant revelation from the LeDeR Report was how little of it will really have surprised anybody who had read any of the earlier reports. The data was perhaps slightly more depressing than we might have hoped for but as Sara Ryan put it in her interview on BBC Breakfast –
My anger is about the fact that we know this happens, we’ve known that this has happened for a long time now and nothing is changing and what we are effectively saying now is that the label of learning disability for any kid is the equivalent of a life limiting illness. And learning disability isn’t a medical condition. The kids aren’t sick.
Sara Ryan 2018
The truth of it is that the five years between 2013 and 2018 have been a missed opportunity on the part of the last two governments. Commissioning yet more kick it down the road research, at a time when it was clear that what was needed were greater rights to equality of access to healthcare, greater investment in-order to deliver those rights and as Sara pointed out the implementation of recommendation 18 of the CIPOLD Report and the establishment of a National Learning Disability Mortality Review Body. But that didn’t happen and instead the government implemented a policy of active inaction – the appearance of doing something about a problem – knowing full well that it wouldn’t change a thing. And because of that quite deliberate policy choice, in those 5 years; hundreds, perhaps thousands of people with learning disabilities will have died as a result of what is effectively – a subtle form of lethal neglect.
People have accused this government of organisational discrimination toward people with learning disabilities, perhaps it is, but personally I think it’s far worse than that.