And why confusing mental health and learning disability is fatal
This is a story about two young women: my daughter, who is 30, and a young woman called Bethany (whom I have never met although I follow her dad, Jeremy, on Twitter) who lives, locked in a hospital seclusion cell.
My daughter has autism and learning difficulties, severe enough to require support in most things she does. Left alone she would end up with malnutrition. Left alone long enough, she would die. She’s chatty and funny. She throws the occasional wobbler when things get too much, like Bethany, (or displays, in that shallow description, ‘challenging behaviour’). Both young women are immensely vulnerable and deserving of the respect accorded to any citizen.
My daughter lives in a Camphill community (one of over 100 in 20 countries) in a house with people of differing abilities where there is no ‘them and us’: in other words people, like her, who need support, and others (co-workers) who share their lives with residents while providing that support. She works on-site, she shops, goes to the pub and the movies. She’s happy.
In contrast Bethany, along with 3000+ other young people with autism, is locked up in an Assessment and Treatment Unit (ATU) – some for years- either because their families can’t cope or because the authorities don’t know what else to do with them. Or both. Youngsters like Bethany are restrained, drugged, sometimes fed through a hatch in their cell. Bethany’s dad Jeremy has been fighting with great dignity and tenacity to have his daughter moved in the face of an obdurate and inflexible system. I can’t imagine what he goes through.
The contrasting stories of Bethany and my daughter raises two key issues for me that go to the heart of the care crisis we face. The first issue is choice; the second is the toxic conflation of mental illness and learning disability.
A parliamentary lobbyist for a big learning disability charity told me not long ago that, no matter how complex their needs or how vulnerable they may be, people with a learning difficulty should be living in a ‘normal house, in a normal street, in a normal suburb’ with care workers coming in to give them the support they need to lead that ‘normal’ life. Anything else, like Camphill, is a betrayal of their human rights and the struggle for inclusion.
For some the ‘normal’ works. It might for Bethany. But my daughter would, literally, be on life-support, dependent on (often agency) care workers never there long enough to get to know her. Perversely the very freedom intended for her would be severely limited.
They could not be her friends because, in the after-shock of the Winterbourne View scandal that led to the jailing of support workers in 2011 for the horrendous abuse of patients, workers must maintain an arms-lengths relationship with people they support. A hug is a risk to be calculated, not a natural response to another human being’s need for solace. She would become lonely, depressed and resume self-harming.
An ideology that insists on a single definition of independent living comes from a good place – the desire for inclusion after decades of prejudice and institutional abuse. But it contributes to the erosion of the very thing it is meant to protect: treating people, irrespective of their abilities, as citizens with a free will and free choice. It also raises the questions: Who decides what is ‘normal’?
This one-size-fits-all approach of course has a backstory that partly explains it. Up to the middle of the 20th century people with a learning disability – rich and poor, commoners and royals- were locked up or hidden away because society was ashamed of them. (Nerissa and Katherine Bowes-Lyon – nieces of the Queen Mother and first cousins to the Queen – were incarcerated since 1941 in the Royal Earlswood ‘Asylum for Mental Defectives’, at Redhill in Surrey).
But the most harmful misconception is not being clear about the fundamental differences between a mental health problem and a learning disability. Sometimes they overlap. But they are not the same. Someone with a mental health problem has an illness which may or may not be long-term. Someone with a learning disability on the other hand is not ill. You can’t cure autism or the effects of cerebral palsy. These are life-long conditions that require a quite different, essentially social approach, training and skills. We are woefully ill-equipped to provide this.
All this may sound obvious, but it isn’t reflected in how we do things. One of the biggest strategic mistakes this government has made is to fold care (and therefore disability) into a giant Ministry of Health.
Supporting people with complex learning difficulties, or certain kinds of autism, is not easy. Especially for families confronted with behaviour they don’t understand and often can only manage at great personal cost.
There was a time when my daughter would scream or throw herself to the floor or hurl a plate of food across the room. Faced with situations they can’t deal with some people with autism can be violent especially in crowded or noisy places. They are trapped in a world of emotional overload, fear and pain. But their behaviour is not an illness. It is their response to the world around them. You can’t change them; you need to change the world they inhabit.
Locking people up, restraining them or using drugs can end in tragedy, as in the case of Bristol teenager Oliver McGowan who died in 2016 after being given anti-psychotic drugs in hospital to control his seizures. They thought he was manic not autistic. Since 2016, the same year that Oliver died, the Mersey Care NHS Trust has recorded no less than 3,369 cases of physical restraint in its ATUs. When challenged, the Chief Executive said that while this wasn’t good enough, they were on a ‘journey’. This suggests to me that she doesn’t understand that the trust is travelling in the wrong direction.
Inclusion is paramount. The world must change so that people with a disability can live on a level playing field. But this is a work in progress. In the here and now we must give people like Bethany and my daughter the support they need to live the life they want in whatever setting suits them best. Finding ways of supporting them is challenging enough. Doing in a culture that fails to confront the essence of the challenge feels like climbing Everest without oxygen.
It’s time for a radical overhaul. A good place to start would be for Labour to appoint a Shadow Cabinet Minister for Disability, like France, with the remit to reinvent a care system fit for the 21st century.
Alain Catzeflis is a parent of a young woman with autism and campaigns for the right to choose how people with a learning disability live.