The scandal of needless incarceration
Published by The i paper (20th May, 2019)
In 1964 a Canadian philosophy teacher called Jean Vanier bought a dilapidated house in a French village and invited two young men with learning disabilities to share it with him. They had no families and were living in a grim asylum, one of the huge hospitals that detained such people, pumping them full of drugs then leaving them to sit around all day in listless boredom. One of the men had few words and often erupted in anger; the other struggled with mobility. But he saw them as human beings and believed, like all of us, they needed friendship, support and a sense of real community. So they cooked together, cleaned together and lived together.
Such a beautiful idea, born from religious belief. It was based on the simple idea that we can all learn from each other since everyone has value, regardless of their abilities, so the weak should not be shut away in institutions but placed at the core of society. This inspirational man died earlier this month from cancer, leaving behind L’Arche movement with 150 similar communities in 38 countries from India to Britain, supporting 3,500 people. ‘I had no plan,’ he once said. ‘I just met people, and people with disabilities awoke my heart.’
How sad that despite such noble examples, we still live in a society that thinks it acceptable to lock up people who are different. How tragic that for all the talk of diversity, of human rights, of inclusion, we still live in a world in which ‘care’ of people with autism and learning disabilities can mean incarceration in secretive institutions that leave bodies bruised and minds broken. And how disturbing that there is not a massive political and public outcry over the terrors being inflicted on some of our fellow citizens as despairing families are ripped apart by the state when they seek help in challenging situations.
There is largely agreement that people with autism and learning disabilities should not be treated this way: imprisoned for years, pumped full of drugs, transported in cages, handcuffed, held alone in bare cells, fed through hatches on the floor and even teenage girls brutally restrained by teams of adults. We know community care is often cheaper, kinder and far more effective. Yet a Care Quality Commission report this week reveals one man was kept in solitary confinement for almost a decade and a child locked up alone for more than two years. Another by the Children’s Commissioner discloses the number of youngsters being locked up is surging.
Pause for a moment to ponder that fact: a person who committed no crime has been detained on their own for almost 10 years, with fewer human rights than a child killer. Consider also how thousands of people who are merely different, not necessarily suffering mental illness, are being sectioned behind the closed doors of chaotic psychiatric units, often owned by private firms creaming off millions while paying frontline staff peanuts.
The CQC report talks of a ‘punitive culture of care’ in a system not fit for purpose filled with untrained staff. It says people end up in these places due to lack of community support, then families see health deteriorate. Maybe it would be different if these were dogs being mistreated, not people with autism and learning disabilities in a nation that seems not to care.
These places cost up to £730,000 per bed annually, yet such is the dehumanisation some patients are not even given a table, forced to eat meals from plastic containers on laps. Just imagine how you would feel to see your daughter slammed on the floor by five burly men, or your doped-up son so drugged he could barely speak.
The CQC has done a decent job in its review of restraint and seclusion, seeing a human rights issue and accepting its own monitoring needs improvement. Yet there is a pile of reports on this failed care system dating back to the last century. It is eight years since a BBC Panorama programme revealed criminal abuse at Winterbourne View, sparking promises to empty such places of people with autism and learning disabilities.
This week the programme will show another undercover investigation with patients being mocked, taunted and intimidated at another unit for people with learning disabilities. Last month, there was a gruelling exposé on ITV of another dismal mental health unit, with staff ignoring an autistic girl banging her head on the wall. I have told the stories of so many traumatised families and individuals.
Yet still the cruelty continues. And still so little is done to stop this national shame. When I wrote a furious piece about a teenage girl called Beth here last October, it provoked discussion in Parliament and the Health Secretary Matt Hancock promised to help. She remains in miserable captivity. But at least Beth has a family fighting for her freedom, unlike many others stuffed in these hellholes.
This scandal shows up related issues from a crumbling care system and dire child mental health services through to under-diagnosis of girls with autism, which may be fuelling a surge in self-harm. Yet the silence from professional bodies for doctors and social workers and nurses and teachers, so ready to fight for their own rights, is thundering.
Hancock says he is determined not to ‘over-promise’ as he sets up a new body to fix the system and orders reviews of the 120 worst cases. Yet this does not need more technocratic tinkering, just a dose of determined leadership. There have been endless exposés of barbarity, pledges of political action, waves of fine words, so much talk of transforming care. Another report will highlight needless deaths of people with autism and learning disabilities in the NHS. We know the problems. We know the solutions. So why does this nation allow the suffering to carry on?