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

Launch of ‘No Longer Shut Up’ – a celebration of the life of Mabel Cooper (1944-2013)

by Liz Tilley

On Friday 20th November 2015, members of the SHLD group attended the launch of the film of Mabel Cooper’s life, ‘No Longer Shut Up’. The event was hosted by Access All Areas, an inclusive theatre group who produced the film. It was held in the Barbican, London, a venue that held special meaning for Mabel and her friends.

Mabel Cooper receiving her honorary degree in 2010

Mabel Cooper, pictured with Professor Dorothy Atkinson, receiving her honorary degree from The Open University in 2010

Mabel Cooper was a truly inspiring woman, who was a key figure in the SHLD group and a self-advocate who made waves across the world. She championed the rights of people with learning disabilities, and was determined that others should not have to endure what she had experienced, incarcerated at St Lawrence’s Hospital, Catheram, for 20 years. In her words, people with learning disabilities should never again be ‘shut up’. She was passionate about the power of research and education to help society change, and upon her release from the institution in the 1970s, Mabel worked tirelessly to share her own story and advocate through People First.

Mabel had never known why she had been placed in an institution, and it was only through very careful archival work with her friend Dorothy Atkinson, that she was able to track down her notes and piece the story together. Mabel discovered that her own mother had been on the streets and unable to care for her. Her mother was put in an institution and they never met again. After a series of moves around various children’s homes, Mabel was assigned the label of ‘feeble-minded’ and was transferred to St Lawrence’s as a teenager, which she found terrifying.

While the trauma of those years never left her, Mabel embraced life in the community. She learned how to read and to travel independently, supported by her long-term friend, and fellow resident at St Lawrence’s, Gloria Ferris. Mabel gradually found the confidence to speak out about her experiences, presenting at academic conferences, and visiting schools to talk to young people. She was quite clear that real change could only occur when the hearts and minds of the next generation had been won.

Mabel sadly died in 2013. Very generously, she left some money to help continue her work. Mabel requested that her long-term supporter Jane Abraham and the SHLD group at the OU come up with a plan to support her legacy. After much thought, we decided to use the funds to make a film of Mabel’s life that could be accessed by everyone. Access all Areas were commissioned to make the film, and people with learning disabilities were employed as actors on the project. It is a powerful piece, and can be viewed on YouTube.

It was terrific that the film premiered at the Barbican because that was where, in 2010, Mabel was awarded an Honorary Degree by the Open University for her services to the community, and for the unique contribution she made to the OU’s Social History of Learning Disability Group. We all miss Mabel greatly and our annual SHLD conferences are not the same without her. She was an amazing advocate for the social history of learning disability, for inclusive research and for using life stories to inspire change. She was forthright and didn’t pull any punches! But she was also warm, funny and caring, and always helped others whenever she could.

Finally, I think it’s important to quote Jan Walmsley, who wrote:

“The fact that Mabel’s launch was in the same week as the All Party Parliamentary Group on Learning Disability discussed Transforming Care, the challenge of bringing the 3000 or so people in institutions back to their communities, reminds us that her work is not finished. And maybe she is right, we really must start telling young people about this Hidden History, those Forgotten Lives, and reassert her determination, to be No Longer Shut Up”.