A grotesque denial of human rights is dragging on

Published by The Times (7th August, 2023)

When Franco Basaglia took over a huge asylum in Trieste in 1971, the charismatic psychiatrist found a place that felt like the prison where he had been jailed for anti-fascist activities during the Second World War. It was filled with shaven-headed inmates stripped of dignity, humanity or rights and frequently subjected to abuse. Some of the 1,200 patients crammed into a cluster of buildings above the coastal city were held in cages, tied to beds or routinely dunked in cold water. Yet within six years, this remarkable reformer had liberated them all.

Basaglia’s legacy lives on today. The Italian government passed a law named after him to block admissions to public mental health units, replacing such asylums with general hospitals and community facilities, then eight years ago went further to phase out forensic psychiatric hospitals. Trieste, with emphatic rejection of restraint, offers some of the world’s best mental health care.

I found it inspiring to visit, seeing community care that lived up to its name — especially coming from Britain, with our shameful reliance on stuffing people with psychiatric disorders, autism and learning disabilities behind locked doors.

Trieste’s model is based on respect rather than fear and one story I heard on that visit five years ago stuck in my mind. Roberto Mezzina, the former director, told me that after arriving as a young psychiatrist he was tasked to fix the final secure ward, which held the 30 most institutionalised patients. His team gave them their own clothes and keys for lockers holding their possessions, then took them for a holiday in nearby mountains. The patients improved; most ended up back in the community. Intriguingly, the impact on nurses was similarly profound.

They had behaved badly, stealing things and abusing their captives, but this changed when they were forced to treat the patients with respect. Suddenly they saw them as fellow human beings and some of the worst bullies ended up as highly caring community nurses. “I call this parallel empowerment — power should be bottom up and challenge everyone,” said Mezzina. “There is nothing positive about coercion.”

His anecdote was illuminating about an issue that has long troubled me as the father of a woman with learning and physical disabilities who is dependent on care. Why do we keep hearing horror stories about abuse of such citizens, especially inside supposed sanctuaries and by people meant to be providing support?

This newspaper carried two such cases on a single day last month. The first detailed how a woman and a live-in carer were given long jail sentences after enslaving her husband, who had cerebral palsy, leaving him in filth and isolation as they used his money. The second involved two carers handed suspended sentences for tormenting a student with severe learning disabilities over several months by repeatedly pausing films he was watching at a residential college.

These were different degrees of cruelty. Yet they emerge from the same mindset. Sadly, such incidents are not unusual, although we glimpse only a fraction of them. Three months ago, four men were convicted for mistreatment of people with autism and learning disabilities at Whorlton Hall  in County Durham. Once again, this case of disturbing abuse only emerged because a journalist went undercover — and once again, it later emerged that there were regulatory failures of a fat-cat private provider and whistleblowers were ignored.

Whorlton Hall has been shut down, like Winterbourne View, Mendip House and all the other places hastily closed after their failings were exposed. Each time, there are earnest inquiries and pledges to learn lessons. Last month another government review, an 86-page report on home care safety, confessed to “limited” understanding of “the prevalence and nature of abuse”, although it accepted that the raising of 541,535 concerns in less than one year indicated a significant problem.

Meanwhile, people with autism, physical and learning disabilities all too often face abuse and hostility on the streets, which at its most extreme tips into kidnap, rape and sometimes even murder. Yet our society fails to look into its soul to ask why there is such aggression and outbursts of hate towards these citizens, whether by carers, people posing as friends or strangers.

The answer, I believe, can be explained by those nurses in Trieste. For despite some advances, these are still our most disempowered, impoverished and least appreciated minorities, struggling to access education, transport and workplaces.

Exclusion fuels fear and fosters uncertainty among other people, which can too easily tip into contempt and dehumanisation. This is especially true when one group in particular — people with autism and learning disabilities — suffer state-sanctioned discrimination from before birth through to their often-premature deaths.

The lives of most people are protected after 24 weeks in the womb yet those with even minor disabilities can be eliminated up to birth. The biggest justification is Down’s syndrome, although studies indicate these folks are happier than the rest of us. A legal challenge failed two years ago, the bench displaying bigotry by saying women might be “compelled to give birth to children who will not be loved”.

The philosopher Peter Singer even suggested infanticide of babies with disabilities could be justified, stoking fires of intolerance, yet he is still admired in liberal circles for his advocacy of animal rights.

Our sacred health service incarcerates hundreds of people with autism and learning disabilities in psychiatric hellholes due to a dearth of communal care, locking even teenagers in solitary confinement and feeding them through hatches like wild animals. This costs a fortune and, accompanied by the overuse of physical and pharmaceutical restraint, intensifies mental distress. Almost everyone accepts it is medically and morally wrong. Yet a grotesque denial of human rights drags on.

Is it surprising there is so little impetus for reform, however, when societal attitudes were exposed in the pandemic with the imposition of blanket “do not resuscitate” notices on people with learning disabilities? Or, indeed, in the lack of real action to salvage the shattered social care sector, let alone ensure decent wages for those entrusted to support citizens in need of some assistance to live fulfilling lives?

Such is the prejudice that an official study published the year before the pandemic estimated that 1,200 people with learning disabilities die avoidable deaths in the NHS each year. So much for embracing shared humanity, let alone equality. Yet consider what it says about a society that eliminates, locks up, fails to support and then allows a marginalised slice of the population to die at least two decades earlier than other citizens. Then ask how far we have really moved on from those dark days of dehumanising asylums.

Categorised in: Disability, Health, home page, Public policy, Social care