Surviving Through Story: living through the pandemic with learning disabilities

A new project, led by the Social History of Learning Disability (SHLD) Research Group, launched last week.  Surviving Through Story will collect and archive the stories of people with learning disabilities through the pandemic.

Delivered in partnership with Three Ways School, learning disability charity Generate and independent consultant and researcher Dr Nicola Grove, the project will gather stories, artwork, video, photos and tributes to better reflect the experiences of one of the hardest effected groups of COVID-19, as well as building a safe space for people with learning disabilities to voice and share their thoughts and feelings.

Academic lead, Senior Lecturer in the School of Health, Wellbeing and Social Care (HWSC) and Chair of the OU’s SHLD Research Group, Dr Elizabeth Tilley said: “It’s crucial that the stories, memories and experiences of people with learning disabilities and autism are not forgotten when the history books about the pandemic are written. It’s important we have a record of how people’s lives have been affected by COVID-19.”
Dr Tilley is supported in the project by OU Visiting Research Fellow Dr Sue Ledger, and Craig Hart, a self-advocate and long-term member of the SHLD group, who co-chairs the annual SHLD conference.

We know that people with learning disabilities have been disproportionately affected by COVID-19; but the stories of people with learning disabilities have remained hidden during the pandemic, with very little reported on their experiences. The team hope that Surviving Through Story will raise awareness of this often-forgotten group and unite people with learning disabilities and their carers to share both positive and negative experiences of the past six months.

The team decided to launch the project after starting a Facebook page, which reached over 219,000 people in just 10 weeks. They also ran a number of webinars on different ways of telling and sharing stories that engaged large audiences of over 90 people each time. Funded by the OU, the site has been crafted with specialist support to ensure that it is fully accessible to all. In addition to the website, the team will be hosting a conference next year on bereavement and loss, to further support this community.

A contributor to the site commented: “For me, lockdown was a lonely time as my husband died at the beginning. I wanted to share my story as it helps me talking about him. Telling my story was also a way of helping other people. People like me who might have lost someone.”

Another contributor to the site added: “For people with severe and multiple learning disabilities, it’s a way to capture what’s going on, because it’s our history – this is a very hard time for people. It’s also a really good way of showing how capable people with learning disabilities can be.”

To launch the website, the team held an online event, with discussions led by Baroness Sheila Hollins; Pat Charlesworth from the Foundation for People with Learning Disabilities and Hackney People First; Dr Simon Jarrett, historian and Editor of Community Living magazine; and Dr Jan Walmsley, independent researcher. You can view a recording of the launch event on the Surviving Through Story website.

Find out more

About Surviving Through Story, please visit: https://www.survivingthroughstory.com/ or follow on Twitter and Facebook

About Dr Nicola Grove, Generate and Three Ways School