Surviving through story: Experiences of people with learning disabilities in the covid19 pandemic 2020–2021

Abstract

Background

History starts from where we are now - it is not just things that happened a long time ago. The global pandemic began in 2019. It has changed the lives of people with learning disabilities. We began our project during the first lockdown in April 2020. We came together to set up a website to collect stories and support and learn from each other about how to survive and keep strong. Storytelling is very important because it helps us understand what is going on. It is also a way to capture the history of people with learning disabilities at a very difficult time. We know that thousands of people with learning disabilities became ill and died in the flu epidemic of 1918. But nobody recorded their stories in their own words. We want to make sure this does not happen again, so we created an archive to help us remember.

Methods

The project was managed with an advisory group of people with and without learning disabilities who met monthly to monitor the collection and analysis of stories on the site. A site audit was performed regularly to determine the themes in the stories and who had submitted. The article describes the progress of the project, the stories we have shared, and the challenges we have faced.

Conclusions

We discuss how people with learning disabilities have been presented in the media and our views about the way we are not heard, or always shown as vulnerable victims. We have found many sad stories, but also positive ones about people being creative and supportive. We look forward to the future and share our ideas about how society could be different and more inclusive. Being part of this project has given us confidence to know we are not alone, and shown us how we can help with the recovery.