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Two very different gatherings this month have got me thinking.
The first was this year’s Byline Festival, which hosted a series of wide-ranging debates about the huge challenges facing the country today: above all, the future of the NHS, the reality of climate change, and Britain’s troubled relationship with the European Union.
The festival took place at Dartington Hall in Devon, where the 1945 Labour Party manifesto was written. “Who”, the festival asked, was “prepared to face up to today’s challenges?” In other words, “is this a 1945 moment?”
The election of Attlee’s Government saw the creation of the NHS and the welfare state. It is, by any standards, an historic achievement, and deserves our thanks and admiration.
History, however, is contradictory.
For the truth is that, for all the talk of comprehensive support ‘from cradle to grave’, the 1945 reforms left behind a group of particularly vulnerable people – those whom we would today describe as learning disabled.
We take pride in the defeat of fascism and despise the lies and cruelty on which it was built. But the pseudo-science of eugenics, used to justify many of the worst atrocities, remained alive and well in post-war Britain.
Indeed, William Beveridge, the revered architect of the welfare state, slipped out of the gallery of the House of Commons the day it debated his report to reassure the ladies and gentlemen of the Eugenics Society that his report was “eugenic in intent and would prove so in effect”.
Then, in 1946, John Maynard Keynes – director of the Eugenics Society through much of the war – described eugenics as “the most important and significant branch of sociology”, and the renowned evolutionist Julian Huxley insisted on its value in his manifesto for UNESCO.
Meanwhile, the senior psychiatrist and neurologist Dr Alfred Tredgold updated his influential Textbook of Mental Deficiency to recommend euthanasia for the “80,000 or so more idiots and imbeciles” whose “care and support, whether in their own homes or in institutions, absorb a large amount of time, energy and money of the normal population which could be utilised to better purpose”.
Dr Tredgold’s conclusions were as monstrous as anything uttered by the Nazis: “Many of the defectives are utterly helpless, repulsive in appearance and revolting in their manners. Their existence is a perpetual source of sorrow and unhappiness to their parents. In my opinion it would be an economical and humane procedure were their very existence to be painlessly terminated.”
Tragically, something of this contempt was hard-wired into the 1946 National Health Service Act, which took more than 100 “mental defect” asylums into public ownership and turned them into long-stay hospitals.
Astonishingly, the new NHS defined a hospital as an institution for the “reception and treatment of persons suffering from illness or mental defectiveness”. By 1957, 125,000 people lived in such dreadful places, deprived of dignity, freedom and the most rudimentary human rights. These institutions were soon starved of funds, resulting in the neglect, abuse and cruelty that followed.
Meanwhile, learning disabled children were written off as “educationally subnormal” and placed in segregated schools, dismissed as being “ineducable” with the popular belief that it was a waste of public money to give them anything beyond the bare minimum.
‘All Our Lives are Impoverished by the Exclusion’
The evening before the Byline Festival, I attended a very different event – hosted by the Learning Disability Network London at the Canal Museum behind King’s Cross. This aimed to shine a spotlight on the abuse of people in NHS-run assessment and treatment units (ATUs).
ATUs are supposed to offer short-term residential help to learning disabled and autistic people when, for whatever reason, their support package breaks down. Tragically, they tend to provide neither ‘assessment’ nor ‘treatment’ and have become the worst kinds of long-stay prisons. ‘Inmates’ and their families fight bitterly to get their loved ones released. They very rarely succeed.
The event started with the autistic activist Alexis Quinn speaking harrowingly of how she had been treated in several ATUs, and gave graphic descriptions of the manhandling, neglect and abuse that she experienced (and her eventual escape).
The journalist and activist George Julian then told us that thousands of learning disabled and/or autistic people are still incarcerated under the Mental Health Act in unsafe, inappropriate and punitive ATUs across the country, while many others live in substandard residential homes and supported living units.
She explained that, when the decision was taken to close the ATUs, they held 2,600 people; five years later there are 2,580. She also said that, of the remaining inpatients, 215 have been detained for between five and 10 years, and a staggering 135 for more than 10 years. And this for no crime other than being autistic or having learning disabilities.
For all the reports and talk of ‘lessons learned’, however, little progress has been made in resolving this ongoing scandal.
But it was Sara Ryan’s quietly spoken account of the death of her gorgeous son, Connor Sparrowhawk, who drowned in a bath while having a seizure in an ATU in Oxford 10 years ago, that reduced the assembly to tears of grief, tears of rage. She described unimaginable levels of neglect leading up to Connor’s death, and a desperate process of passing the buck and avoiding responsibility in the long fight for justice that followed.
She concluded with words that should shake us all: “All our lives are impoverished by the exclusion of a proportion of the population, and the way in which we, as a society, are failing people is something we should all take responsibility for. None of what we are talking about this evening is fine. None of it. Stop pretending it apparently is.”
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Abandoned in a Wasteland of Our Own Making
These, however, are just the worst aspects of an entire system which consistently fails the 1.5 million learning disabled people in Britain.
Coronavirus mortality rates for learning disabled young people with no significant comorbidities were six times worse than the average, according to Public Health England in 2020.
The provision of annual health checks is sporadic and life expectancy for learning disabled males is 22 years shorter than for the rest of the population, while for females the figure is a staggering 26 years less. Every month brings another premature, preventable death. It’s as if such lives were disposable.
The fact is that no one ever died of a learning disability and this dreadful discrepancy is a direct consequence of how our society – and, I’m afraid, the NHS and social care – fails them so abysmally.
After a decade of disinvestment, special education is creaking badly, and learning-disabled people and their families face continuous battles simply to secure their basic human rights. Every family is different, just as every learning disabled person is different. But they’re united in their frustration and fury at a system which is not fit for purpose.
The struggles never end.
Even problems that could be easily resolved are left unattended. Thus, almost £60 million of state and private investments are locked up in child trust funds which cannot be accessed by their beneficiaries because they lack ‘capacity’. A simple adjustment in the process could sort this out. But nothing ever happens.
The dreadful fact is that, for far too long, a group of our fellow humans has been abandoned in a wasteland of our own making. Of course, we should celebrate the birth of the NHS and the welfare state, but we should also acknowledge that it has too often let learning disabled people down in the worst way imaginable.
Is it too much to hope that we are finally learning our lesson and are prepared to hear their voices, and that of their champions, and bring about dramatic and serious change?
Sadly, many of us are unconvinced. And we are left grateful to people like Sara Ryan for reminding us of what she, and by extension all of us, have lost – and continue to lose.
Stephen Unwin is a theatre and opera director, writer and teacher