Abstract:My name is Paul Christian. I am a Black British man with learning disabilities. The lives and experiences of Black people with learning disabilities are under ‐ represented in the UK history of learning disability. This article explains my involvement in activism to change this and shares the learning from these projects. It discusses the process of co‐writing and why research is needed to record and share the experiences of Black people admitted to the former institutions and the importance of accessible info… Show more
“…One Black self-advocacy expert reminded the group that everybody else in the team was White and that a lot of research about people with learning disabilities focuses upon White people [ 32 ]. They said they would have especially liked to interview Black people with learning disabilities: “Actually ask people from Black and ethnic minorities because they don’t get asked questions or if they do it’s not from somebody who knows what it’s like.” …”
While much attention and emphasis have been given to the role and value of advisory groups in social science research, less has been published on the experiences of those involved in such collaborative efforts. This article reflects on the experiences of academics, collaborators and self-advocacy experts who formed an advisory group for a research project focused on people with learning disabilities’ experiences of renting their own homes. Our paper describes the collaboration, how it changed because of Covid and because of changing relationships, and what worked well and what was challenging. This is in part because these more transparent accounts of working together are sometimes missing from research. We discuss issues relating to bureaucratic research systems which are largely inaccessible to people with learning disabilities and how we approached these. We also highlight the joys and benefits of the research approach that we adopted as well as the challenging and more difficult aspects.
“…One Black self-advocacy expert reminded the group that everybody else in the team was White and that a lot of research about people with learning disabilities focuses upon White people [ 32 ]. They said they would have especially liked to interview Black people with learning disabilities: “Actually ask people from Black and ethnic minorities because they don’t get asked questions or if they do it’s not from somebody who knows what it’s like.” …”
While much attention and emphasis have been given to the role and value of advisory groups in social science research, less has been published on the experiences of those involved in such collaborative efforts. This article reflects on the experiences of academics, collaborators and self-advocacy experts who formed an advisory group for a research project focused on people with learning disabilities’ experiences of renting their own homes. Our paper describes the collaboration, how it changed because of Covid and because of changing relationships, and what worked well and what was challenging. This is in part because these more transparent accounts of working together are sometimes missing from research. We discuss issues relating to bureaucratic research systems which are largely inaccessible to people with learning disabilities and how we approached these. We also highlight the joys and benefits of the research approach that we adopted as well as the challenging and more difficult aspects.
“…Here Paul Christian explains to Sue in a recorded online interview, how the killing of George Floyd inspired him to join the advisory group, to speak out against racism as a black person with learning disabilities. As explained in more detail in their article for this edition (Christian & Ledger, 2022), Paul and Sue worked in collaboration to research and write these pieces. Paul said: After the killing of George Floyd I felt passionate about speaking up for black people.…”
Section: Our Storiesmentioning
confidence: 99%
“…Ideas for new collaborations were suggested and followed up. The team worked hard to ensure that the experiences and contributions of people with learning disabilities, including people from Black British, African, Caribbean and Asian heritage (Christian & Ledger, 2022; Christian, 2021), were shared.…”
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.
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