In 1984 I left home and went to live in a L’Arche community in South London.
In 1984 I left home and went to live in a L’Arche community in South London.
L’Arche is an international organisation that supports people with learning disabilities to live in their local communities. Although this is common practice now, in 1984, it was still a revolutionary idea. As a live in house assistant I provided emotional and practical support to my learning disabled house mates to enable them to live the life of their choosing. And it was a transformative experience.
It was in L’Arche that I first learnt of the major injustices suffered by people with learning disabilities in the UK. For most of the twentieth century the main support provision for learning disabled people were so-called ‘mentally handicapped’ hospitals.
These appalling institutions deprived people of rights, freedom and autonomy and were often ridden with emotional and physical abuse. Two of my friends, John and Doris, would tell me stories of living with no possessions, denied access to their families, called by a number rather than a name. They both took great delight in the fact they had escaped and simple things, like sitting on the wall talking to neighbours, were hugely important to them.
I left L’Arche to become a student, which was when I first visited one of these places for myself. Claypenny Hospital in North Yorkshire was as awful as I’d imagined. It was full of long wards, with shabby curtains and tiny lockers, with up to twenty people sharing. The staff were at best patronising and at worst completely dismissive of the idea that the people they supported were capable of taking control of their lives. I needed no further convincing that such places should be closed down.
This view was confirmed when I returned to London and became a support worker. I worked with four people who’d recently moved out of a hospital in Lewisham. Like John and Doris, their experiences had been extremely unhappy. They all often needed one-to-one support, and yet had lived in wards where there was usually only one staff member to ten people. One man I worked with had had difficulty digesting food which he often regurgitated. Instead of trying to work out what was causing the problem the hospital solution was to tie his hands behind his back, feed everyone else and then let him eat raw Weetabix afterwards. It still chills me now that anyone could work in such an environment and consider themselves humane.
As a result of these experiences I spent the next twenty five years contributing to the closure of hospitals and the resettling of people back in their home communities. Some of these resettlements worked well, some didn’t. But the rise of self advocacy (people speaking for themselves), person- centred planning (finding ways to ensure support planning put people in control) and supported living (which enabled people to live in their own tenancies and receive support from a different provider), meant more and more learning disabled people were able to take control of their lives.
Things have been far from perfect, but I’ve seen massive improvements since 1984. The long stay hospitals have all gone. People with learning disabilities have jobs, are actors, own their own homes. Thanks to my friend Simon Duffy, of the Centre for Welfare Reform, self-directed support, where people can choose how to spend the funding for their services, is now mainstream. Naively, I thought things could only get better.
Sadly, the experience of five years of cuts to social care and welfare has set this progress back. I reported earlier in the year how members of the Learning Disability Alliance had rated the government a shocking 2/10 for their approach to services. And that was before changes to Disability Living Allowance and the closure of the Independent Living Fund restricted people’s support funding further.
So I was delighted this week to see that Gary Bourlet and Kaliya Franklin of People First England, the national self advocacy organisation for learning disabled people) are calling for a new Magna Carta for people with learning disabilities.
Their powerful paper cites the cases of Kerry Robertson, denied the right to parent, and Stephanie Bincliffe who died in an Assessment and Treatment Centre after years of mistreatment, as examples of why such a document is necessary. And I welcome their bid to enshrine in law the rights of learning disabled people to live in “a world where you wake up in a comfortable home and go to work being safe and valued.”
I have never forgotten the terrible horrors that John and Doris and so many others had to endure before they were free to live the life of their choosing. I don’t want us to go back there, but I fear the brutality of austerity is pushing us in that direction.
Which is why enshrining the rights of learning disabled people in the law, is not just a nice thought. It’s the only way we can ensure the past is never repeated.
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© Virginia Moffatt is the Chief Operating Officer of Ekklesia.