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No Longer Researching About Us Without Us: a researcher’s reflection on rights and inclusive research in Ireland

74 citations0/0 files storedBritish Journal of Learning Disabilities

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Disability Rights and Representation Down syndrome and intellectual disability research Mental Health and Patient Involvement

Abstract

Accessible summary • There is now a statement from the United Nations that sets out rights for disabled people. One of their rights is to participate in their communities. • One way of participating is when people with intellectual disabilities do research on issues that are of concern to them. This is called inclusive research. • No Longer Researching About Us Without Us was a national project to support people with intellectual disabilities and support workers to do inclusive research. It went on for 18 months. • This paper tells about two of the projects that were done by getting people in some services together to talk about what they wanted to do. One of the projects was about a coffee shop and its place in a small town. The second was about how to stop bullying. • We found that doing the projects led some people with intellectual disabilities to become stronger self advocates. We also found that the projects raised important issues about their lives that other people had not thought of and that people began to work together in groups to do their own research and to make change happen. Summary No Longer Researching About Us Without Us was an innovative national project which aimed to develop inclusive research with people with intellectual disabilities in the Republic of Ireland. This paper is my personal reflection as co-ordinator of this project on work undertaken by and with people with intellectual disabilities during its 18-month life. Using examples from the project, this paper explores links between the inclusive research aspect of project and the rights of people with intellectual disabilities to participate in their communities. As a result of the project we found that people with intellectual disabilities began to initiate and take action on some issues that were important to them and that this resulted in the development of longer term changes in their role within one service in Ireland.

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References

1996Discipline and Punish: The Birth of the Prison.1992Changing the Social Relations of Research Production?1972Education: domestication or liberation?2005Emancipatory research and disabled people: some observations and questions 1999Researching Together

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