The shame of imprisoning people for autism
Published by the i paper (29th October, 2018)
Imagine that it was your son, your daughter, your sister, your brother. Taken away by the state against their will to be locked in an institution hours from home. Forced to take drugs they do not need, turning them catatonic, unable to stop dribbling – and if they resist, held down by six guards, stripped and injected with strong sedatives. Stuffed in a tiny cell with just a mattress on the floor, fed through a hatch like a wild animal. Sometimes with no shower, no sink, no toilet paper – and always with no dignity.
Your relative, of course, has rights as a citizen. Even if they carry out evil crimes, they are protected by rigorous laws. Yet such actions are being inflicted on innocent young people with autism and learning disabilities. They are being handcuffed, bruised, restrained face down by teams of adults, even having their spectacles removed. They must obey orders to access books, television, even fresh air. Some slump into depression and shed weight, others swell up through over-eating. Yet if families protest, they can be legally removed as protectors and publicly silenced with court orders that threaten to seize all assets.
These stories sound Dickensian. They remind us of pitiful footage from foreign orphanages or places where people with mental illness are chained to trees. Yet this is happening right here in our country. It is happening right now in secretive psychiatric institutions – both private and state-owned. These practices are a flagrant denial of the most basic human rights for British citizens – but they are permitted by politicians, sanctioned by doctors and funded at huge expense by taxpayers.
Three weeks ago, I wrote an angry article here about Beth, a teenager with autism held in seclusion in a Northampton hospital. She had been there for 21 months and was self-harming, hatch-fed and growing obese. I questioned whether we had really moved on far from Bedlam – and my piece, thankfully, prompted instant action from the Health Secretary, Matt Hancock. Last week, in proof that these situations can be rapidly resolved, Beth was freed from solitary into a three-room unit, and introduced to a therapy dog. Her father tells me that they are making plans for her to return nearer home.
Politicians need to get hundreds more people like Beth out of these hellholes. Many have been seized from distraught families, often after a simple request for brief respite care or a brief burst of challenging behaviour. People such as Tony Hickmott, held in captivity for almost 18 years. Or Eddie Green, taken in aged 13 and still inside six years later. Or Chris Duck, whose mother found him “dirty, drugged and depressed” and who shed 36kg in one unit. Then there are those I cannot name because of legal gagging orders. The young woman who fled in fear to Africa. Or the tragedies such as Stephanie Bincliffe, who died from obesity after her body ballooned while she was in seclusion.
None of these people should be interned in hospital. They are not sick. They have autism and learning disabilities, conditions made far worse by stressful confinement and inept treatment away from their loving families. They should not be pumped full of strong anti-psychotic drugs and kept in seclusion. Yet Eddie, that teenage boy who loved sport and street dancing, was viewed with such fear that staff in one place remotely locked him in a toilet before dumping a tray of food on the floor. Such inhumanity is beyond belief.
Scandal is an over-used word. But how could a ‘care’ system become such a poisonous place that it locks vulnerable teenagers in the most chilling conditions, abuses young adults and betrays desperate families asking for help? How could doctors sanction such things, knowing that root problems revolve around inadequate care and support in local communities? How could politicians turn away, aware that such actions are not only desperately cruel but also far more costly in most cases?
These issues exploded in public when the BBC exposed abuse at the Winterbourne View care home in Hambrook, Gloucestershire, in 2011. Politicians responded with pledges to empty assessment and treatment units of people with learning disabilities and autism. It was hollow talk: 2,375 people remain trapped in these supposedly short-stay institutions, more than half for more than two years and costing the health service £477.4m in 2016. Some units may be good, but they are not long-term places for such people.
As one mother said, a twisted care system has ended up creating the most vicious circle, since these hospitals become the cause of continued detention by worsening the stresses and anxieties that fuelled the original sectioning. And where is the accountability when providers – some owned by US hedge funds and charging up to £13,000 a week – are allowed to be the ones to judge in confidence whether the people in their beds should stay under their control?
The failures are shameful. It is fair to blame them on a lethal fusion of callousness and incompetence at both local and national level. We can point the finger at bureaucrats, commissioning groups, the health service, private firms, town halls and Westminster. We can bemoan silos in the public sector and power abuses. And we can seethe over inequality that pays carers £8.10 an hour while their bosses take home fortunes. Yet they reveal again something far more disturbing: a corrosive view in our society that people with autism and learning disabilities are not quite human.
Just like the abuse on streets, the hate crimes, the school exclusions, the social ostracisation, the lack of jobs, the cuts, the needless early deaths in healthcare. As Mark Neary, a campaigner who fought in court to get his son with autism returned to his care, said to me: ‘If they are not quite human it becomes easy to legitimise doing not quite human things to them.’ Once again, we see this exposed in the starkest light.