Improving understanding of service-user involvement and identity: collaborative research traversing disability, activism and the academy

Abstract

This article focuses on collaborative research traversing disability, activism and the academy to improve understanding of service-user involvement and identity. The project was undertaken by an organisation of disabled people, some of whom are, and some of whom are not, employed by academic institutions. It is an example of research fusion between disabled people’s activism and their work within the academy. The project aimed to identify meaningful ways of promoting involvement in the development of public services. Power relationships which shape the reality of disabled people’s participation in decision-making processes within services are critiqued. We explore ways in which disabled service users and our representative organisations can drive a form of political activism within services and through the academy to improve the lives of disabled people according to the priorities of disabled people themselves. This is not simply an academic project; we identify strategies for activism and change.

Keywords:

• Disability
• research
• access
• service users
• user-led research
• disabled people’s organisations
• participation

Acknowledgements

Patricia Chambers, a prominent member of the black and minority ethnic mental health user/survivor movement and a dear friend and colleague, passed away in May 2016. For over 25 years, Patricia worked tirelessly to address issues at the intersections of race/culture and madness, within services, within the wider user/survivor movement and within research and policy. In 2009, Patricia took over as the Network Manager of Catch-a-Fiya, the only (and now defunct) national network for people from black communities. It is impossible to list all of the places and platforms she contributed to/through – BUGS, the Afiya Trust, Shaping Our Lives, Black Women’s Mental Health Project, The Forward Project, the DRE Ambassadors programme, NIMHE’s Making a Real Difference programme, the Count Me In census, Dancing to Our Own Tunes and so forth – and the many local/informal user groups where she acted as an advocate and friend to people who needed that. The authors developed this project from an interest Patricia had in the conflicts for people who use services and who also work to improve them. The authors would like to thank the National Lottery through the Big Lottery Fund for providing funding for this project, the 22 people who took part in the research and the four disabled researchers who collected the evidence.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

National Lottery Big Lottery Fund