“Nothing about us without us”: The ideals and realities of participatory action research with people with an intellectual disability

Abstract

Undertaking participatory research with people with intellectual disabilities is becoming a much-discussed issue. Some researchers and self-advocates argue strongly that only participatory research can produce useful, honest research which assists people with intellectual disabilities to attain their rights. Others question whether such research is possible or indeed desirable. This paper describes a three-year action research project which sought to carry out participatory research on the sensitive issue of sexuality. The research grew partly from concerns of people with intellectual disabilities about this issue and involved them in its management and implementation as well as in developing workshops and publications arising from the research. The research process was consciously self reflective and raised questions about participatory research, representation and difference, and the dialectical relationship between individual life histories and institutional change. This paper discusses these issues and the contribution they make to current methodological debates.