Fumblings and faux pas: Reflections on attempting to engage in participatory research with people with an intellectual disability

Abstract

Background Reflexivity is fundamental to developing methodologically and ethically sound research and is particularly important for researchers exploring experiences of oppression.Method We offer reflections on the process of engaging in participatory research with people with an intellectual disability (ID). A reflexive journal was maintained throughout the duration of a research project that used photovoice and conversational interviewing to explore the identities and social roles of 18 members of an advocacy agency for people with ID.Results Challenges and tensions arose throughout the research process, including difficulties reproducing “ideal” participatory research, issues of informed consent, and tensions surrounding the beneficiaries of the research. Broader social processes were mirrored in interactions with the members, and damaging stereotyped identities were unknowingly imposed.Conclusions Self-awareness and critical reflection is necessary to ensure that the existing power relations in traditional disability research (and wider society) are not replicated during the research process.

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