OU joins forces to launch hub to collate stories of people with learning disabilities through the pandemic

The Open University has partnered with Three Ways School, learning disability charity, Generate and independent consultant and researcher, Dr Nicola Grove to launch a project to collect and archive the stories of people with learning disabilities through the pandemic. Surviving Through Story content hub 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.

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. Funded by the OU, the site has been crafted with specialist support to ensure that it is fully accessible to all

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. In addition to the site, the team will be hosting a conference next year on bereavement and loss to further support this community.

Academic lead, Senior Lecturer in HWSC at The Open University and Co-Chair of the OU’s Social History of Learning Disability Research Group, Dr Elizabeth Tilley said: “It’s crucial that the stories, memories and experiences of people with learning disabilities 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.”

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 site, the team will be hosting an online event on Thursday 24 September at 14:00-15:00, with discussions led by Baroness Shelia 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.

To register, please visit: https://www.eventbrite.co.uk/e/surviving-through-story-changing-our-lives-in-a-global-crisis-tickets-121217429595

^*https://www.homecareinsight.co.uk/higher-proportion-of-people-with-a-learning-disability-dying-of-covid-19-than-in-care-homes-mencap-warns/ (Accessed on 21 September 2020)

^*https://www.cqc.org.uk/news/stories/cqc-publishes-data-deaths-people-learning-disability (Accessed on 21 September 2020)