Reflections on doing inclusive research in the “Making Life Good in the Community” study

Abstract

Background The involvement of people with intellectual disability in research is framed as inclusive, denoting their active participation in its processes. However, questions are raised about ownership and control, genuineness of involvement, and the need for honest accounts to develop practice. Such issues are particularly pressing in Australia, where there is the absence of a strong self-advocacy movement to partner with academics or hold them to account.

Method Action research was used to reflect on and progressively refine the support provided by a research mentor to a co-researcher with intellectual disability employed on a large multimethod study.

Results and Conclusions Accepting the co-researcher's strengths and designing support on the job rather than teaching them to “pass” before venturing out in the field are important in ceding control. Support required for a co-researcher is more than practical and involves developing a relationship that can actively challenge views and foster reflection. Ownership of questions and disseminating of outcomes are hampered by contextual factors such as tender processes, short-term positions, and a failure to acknowledge the support required to present findings.

Keywords:

• inclusive research
• participatory research
• self-advocacy

Acknowledgements

This project was funded by the Department of Human Services in Victoria, Australia, and the Helen McPherson Smith Trust.

Notes

1. The seven reports associated with this project can be downloaded from http://www.dhs.vic.gov.au/disability/improving_supports/kew_redevelopment/evaluation_of_community_living and http://www.latrobe.edu.au/socialwork/schoolstaff/chris.htm

2. We have used the term “co-researcher” to refer to the researcher with intellectual disability, as we used this in the original proposal and throughout the project and use it now for clarity.

3. We used the term “research mentor” to refer to the researcher employed to support the co-researcher.

4. From this point in the paper, to avoid objectifying Alan we use his name rather than referring to him as the co-researcher.