Launch of Learning Disability England, June 14th 2016

by Jan Walmsley

It was an exceptionally showery June day in London when Learning Disability England was launched in the House of Lords. And what a tremendous event it was. Chaired by the inimitable Gary Bourlet, and attended by a fantastic number of self advocates (and others) from across the country. The message – we – self advocates, families and service providers – are stronger together. And boy, do we need that voice now. Gary Bourlet puts it well here http://peoplefirstengland.org.uk/gary-bourlet/were-launching-learning-disability-england/

Our host was Baroness Sheila Hollins, and she was joined on the platform by another redoubtable House of Lords campaigner, Jane Campbell. Jane’s speech was especially memorable, on an exceptionally memorable day. I liked ‘We are not vulnerable, we just find ourselves in vulnerable situations’. And, momentously, she acknowledged something people associated with self advocacy have been saying and thinking for many years, that the early disabled people’s movement, of which she was a leading light, failed to acknowledge the voice and different experiences of people with learning disabilities. She promised this will change.

A minute’s silence for all those who have died in Assessment and Treatment Units was incredibly moving. And, personally, I was delighted that my dear old friend Jackie Downer was one of a number of self advocates who were awarded lifetime membership of LDE.

As ever, I was prompted to thnk about the historical context. A united voice for people with learning disabilities in England (unlike Scotland and Wales which both have national People Firsts) has been a very long time coming – and, although I hope to be proved wrong, I am not sure it is here yet. I remembered a conference back in 1994 which sought to set up a national People First in England. Held in an anonymous hotel in Daventry, of all places, one man and one woman from every town or county was invited. Many places responded. Some delegates had never been out of their home towns before, let alone to a national conference, whilst others, like Lloyd Page, Nigel Lott and Ian Davies were experienced campaigners. Another amazing time observing self advocacy at work, one of so many I’ve been privileged to experience in my life. It was a harmonious occasion, and was crowned with a visit from John Bowis, then a minister (in a Tory Government) who offered £50,000 (as I recall) to set up a national organisation. Hard to believe it, but I saw and heard this. Unfortunately, there was one large and well established self advocacy organisation who refused to play ball. And the initiative foundered. Until today, that was as near as we have come to a united voice for self advocacy in England.

But there were significant absences yesterday too. Mencap, the self proclaimed ‘Voice’ of learning disability, was not represented. And I saw few National Forum members, although leading members of the National Valuing Families Forum were there. Is this ominous? I really hope not. As I said, this united voice really is needed, and it is to the credit of all involved that it has got this far, with many well wishers. If you agree with me then do join. LDE will need all our help and support as it seeks to establish itself. I really wish us luck.

Life stories in East Kent

by Jan Walmsley

More than 20 people with learning disabilities and their supporters came to learn about recording their life stories at Canterbury Christ Church University’s Broadstairs Campus on a wonderfully sunny day in March. The workshop was led by Jan Walmsley and Sue Ledger, members of the Open University’s Social History of Learning Disabilities Research Group.

People came from all over East Kent, from Folkestone to Canterbury, Dover to Margate. On arrival, everyone looked at examples of life stories by people with learning disabilities, going back as far as Joey Deacon’s back in the 1970s. And met Joyce Marsh, who, with the help of Mencap volunteer Linda Smith, actually published her life story in 2015. It was inspiring to everyone to meet someone who had actually done it.

We then viewed a film, No Longer Shut Up, which tells the life story of the late Mabel Cooper. Mabel was taken into Children’s Homes, and later into a huge institution in Surrey called St Lawrence’s. After she left St Lawrence’s she campaigned for the rights of people with learning disabilities, and told her life story wherever she could so that people are ‘No Longer Shut Up’. No one in the audience had lived in a long stay hospital, thankfully, but most people could relate to Mabel’s story – being moved around, being bullied, not having a say in your life, these experiences were shared by many of the people who came.

We then got around to discussing how many people wanted to tell their stories. Everyone did. Lots of people shared bits of their lives to explain why it was important that their stories are recorded.

After an excellent lunch we thought about the practicalities, how people actually tell their stories. Joyce and Linda explained that they had had lots of conversations which Linda had written down. That is how they made their book. We watched videos of interviews, and thought about what makes a good interview. Everyone then practised asking and responding to questions. Some people were quite brilliant at doing this.

We talked about ethics – making sure people know what they are agreeing to; rules about using photos which show people; and thinking about other people whose stories are part of our own lives. Do they have a say in what people record?

Finally, we got around to discussing what to do next. Make a book of people’s lives like Joyce Marsh? Other people liked the idea of making a film about the lives of people with learning disabilities in East Kent. Everyone agreed that these life stories need to be on a website and that professionals need to know about people’s past, as well as their present, and to learn what makes for a good life – and how they can help.

East Kent Mencap, East Kent NHS Hospitals Trust and Canterbury Christ Church University, who sponsored the workshop, are now discussing how to raise money to make the dream of recording the lives of people with learning disabilities in East Kent a reality.

a picture of someone holding up an A3 piece of paper on which are written ideas for a film

Ideas for a film about the lives of people with disabilities in East Kent