Animals would not be treated this badly
Published by The i paper (22nd October, 2018)
Stephanie Bincliffe left school at 16 and lived for two years on her own with help of a full-time carer. Then she was sectioned for aggressive behaviour. This teenage girl was locked up in a private mental health unit and stuffed in a padded room almost one hundred miles from her Nottingham home. Her family say that for two years she was not even given access to a bath or shower, forced to clean herself with wet wipes while trapped in her lonely hell of seclusion.
No wonder she was distressed, compounding anxiety and loss of control that fuelled her panic attacks. Despite huge sums of public money spent to place her in a supposed safe space, her weight was allowed to soar. Staff said they tried to encourage her to eat well – yet one week, she ate nothing but ice cream. Stephanie was 13 stone when shut away. Seven years later, her weight had doubled – and she was dead. She died from heart failure and sleep apnoea caused by obesity.
This young woman’s life was cut short by systemic failures that left her locked up. The cause of her fatality was not really the calories served three times a day that caused her body to swell as she was fed to death. She died because she was disabled. Stephanie had a form of autism called Pathological Demand Avoidance (PDA) and the misfortune to live in a nation that imprisons people with learning disabilities, treating them in ways that should have been banished to the dark past.
Her death was four years ago. Yet it could have been last century or last week. Her story has hideous echoes of a case I wrote about a fortnight ago and has since sparked national outrage – that of Beth, another teenager with the same condition, stuck in a secure hospital’s isolation cell and fed through the hatch in a metal door. My angry article, sparked by a radio documentary, was raised in the House of Commons last week by shadow health minister Barbara Keeley and acknowledged by health secretary Matt Hancock as he pledged to resolve her plight.
But this is not enough. Beth and her family may now, thankfully, see an end to their shocking situation after some publicity. But these are not unusual cases. Many more humans are being crushed, families forced to watch in helpless despair as arrogant officials brush aside concerns. Politicians must act to stop the abuse. We know the problems and we know the solutions. So how about they unite to stop the suffering being inflicted on their fellow citizens?
People with PDA, like other forms of autism and learning disabilities, need support. Instead they are being caged like deranged criminals. Yet they can live a contented life in the community with trained carers and careful management – although when placed under stress, which can arise from simple tasks, they may panic into fight or flight response. But decent care costs money. And there are suspicions cash-strapped local authorities prefer to dump people such as Beth and Stephanie on the health service – although this can cost far more for taxpayers and intensifies their problems.
This is state-sanctioned barbarity that shames society and destroys families. Two teenagers with PDA were left so depressed they have killed themselves in the last two years. Or take the case of a young man I will call Eddie. He stopped school at eight due to poor state provision. When his desperate parents sought help six years later, he was sent to an assessment and treatment unit (ATU). It should have been a short stay but he has spent ten lonely years in seclusion. Five years were in a room about ten foot square, with no toilet or washbasin so he often urinated on the floor when staff were slow to answer his call. Now he is five hours travel from his family, sometimes sleeping 15 hours a day due to a regime of powerful drugs.
Like Beth, Eddie has been fed through a hatch. Like Stephanie, his body has blown up, adding at least ten stone. His father told me Eddie is ‘the loveliest lad with the funniest personality’ and plaintively asks why people are left to rot in such ways? Sadly, this is ‘care’ in our twisted system. We saw the legacy with abuse exposed at Winterbourne View in 2011. Since then there have been reviews, promises to free trapped people, talk of transforming care. But 2,375 people with learning disabilities are still stuck in ATUs and almost two-thirds have been there at least two years.
The Rightful Lives lobby group wants action from the Equalities and Human Rights Commission. For this is a human rights scandal going far beyond spending cuts, jostling public services, profiteering firms and chronic political failure. Note also how a recent review exposing early and needless deaths in the health system was largely ignored on release. There is a debate in parliament on Monday over better training, thanks to a campaigning mother who lost her son. But the root cause of these problems is far more disturbing: a horrific lack of humanity towards people with autism, learning disabilities and their families.
How else could Walsall Council think the right response to Beth’s father’s concern was an attempt to silence him with a gagging order, thrown out in High Court last week? Yet such grotesque behaviour, increasing family stress, is far from unusual. ‘I was too scared to speak,’ said one distraught mother, whose child was also fed through a hatch yet silenced by court order. Another knows of four gagged families desperate to champion their children’s plight. Such are the circles of hell within this contemptuous system, which treats some citizens worse than animals while society looks away.