I’ve previously written in Community Living about how people with learning disabilities are routinely shut out of research and rarely decide what research should be done.
The good news is that there are more projects around the UK where people with learning disabilities are central in deciding what gets researched and also doing the research.
In this column, I want to talk about one project I have been part of to share what we’re doing and how we’ve worked together.
My research colleagues and I got funding from the National Institute of Health and Care Research to start a Learning Disabilities Knowledge Partnership. Researchers with and without learning disabilities from four community organisations and five universities worked together.
Belonging wasn’t just about being out with others – it could be in online communities, in welcoming places, at home, with pets and in nature
Big questions
Our job was to come up with the most important questions for research into the social determinants of health. These are the things that matter for people’s health which are not about health services or medicines.
We spent time getting to know each other, finding out about the social determinants of health, and producing a plan of action.
We asked groups of people with learning disabilities around the country what was important for their health, then together we decided what the most important issues for research might be.
Three issues came up a lot as being important for people’s health: belonging; feeling safe; and the neighbourhoods where people lived.
We looked at what research had already been done about belonging, feeling safe and neighbourhoods, and we decided to work on a project about belonging.
Existing research on belonging had largely ignored how different groups of people with learning disabilities experience belonging. We decided we wanted to learn more about this.
We focused on LGBTQ+ people, women and people from minority ethnic communities.
We decided we wanted to do the research by holding focus groups and spending time with people in places where they felt they belonged.
It took 12 months of hard work for us to get to this point, and we managed to get more funding to carry out the research over the next 18 months.
This project is called Show Me How and Where you Belong: Belonging and Difference for People with Learning Disabilities.
We’ve listened to over 40 people around the country, and we’re nearly at the end of the project. We are still analysing the information together, but some main themes have arisen which we’re thinking about.
First, everyone said that a feeling of belonging was important for their mental health and that being in better health helped people seek places and people where they belong.
Online, off line
Belonging wasn’t just about being out of the house with other people – it could be in online communities, in places that were welcoming, at home, and with pets and in nature.
Technology helped people stay connected and feel as if they belonged.
Where and how people felt a sense of belonging depended a lot on aspects of their identities. Sometimes people had to manage how they shared various aspects of their identities with different groups of people.
Ableism, sexism and racism are barriers to belonging. People’s past experiences of discrimination had an impact on how they felt about new places and people.
Advocacy groups were important spaces for belonging.
Many people said they needed support to help them get involved with the people and places that gave them a sense of belonging. This support, whether from friends, family or support workers, could really help or could be an active barrier.
We’ll be sharing the findings of this project in all sorts of places soon – including in Community Living – watch this space.
