People with Disability as Researchers

The importance of participatory research methodologies in which people with an intellectual disability are interviewed about outcomes and quality of life is now widely recognized. (Cambridge, P and Forrester-Jones, 2003; Butler, 2006). There is more limited research (Perry and Felce, 2004) on the opportunities and challenges presented from involving people with an intellectual disability in interviewing their peers about quality of life. There is a distinction between ‘participatory’ research in which people with an intellectual disability act as respondents and ‘emancipatory’ or ‘participatory action research’ in which people with an intellectual disability are actively involved throughout the entire research process including discussions on funding, research design, conducting the research and analysis of results. Clearly, conducting research is one aspect that can readily undertaken by people with an intellectual disability – at least with those who are verbal and have the cognitive capacity to respond. The evidence of Perry and Felce (2004) demonstrates that people with an intellectual disability can be trained and supported to be competent data collectors and hold positions of responsibility in the research process.

In addition, this approach challenges the type of conference that is ‘about us, but without us’ and strives to make this a truly inclusive approach. (Frawly, Bigby and Forsyth, 2006). As Gary, a young man with an intellectual disability says: ‘People were always talking about me, rather than to me’ (Butler, 2006). We chose this research method in keeping with our commitment to social inclusion and facilitating valued roles for the people we support.

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2. The Housing Connection