Perspectives and power dynamics in inclusive research: experiences from an Irish context

Introduction: The United Nations Convention on the Rights of Persons with Disabilities (CRPD) (United Nations 2006) outlines the accountability that state parties have to involve people with disabilities in research that affects their lives. Inclusive research has developed to move people with intellectual disabilities away from the traditional role of a research subject, towards a more power-balanced research collaboration that can create individual and societal change. Method: This study adopted a qualitative methodology guided by critical disability theory. Semi-structured interviews and one focus group were carried out with seven individuals with intellectual disabilities, two supporters, and five academics, to explore their experiences of engaging in inclusive research in Ireland. Thematic analysis using Atlas.ti software was used to interpret the data. Findings: Three key themes emerged: „Meanings of inclusive research‟, „Importance of inclusive research‟ and „Power relations within inclusive research‟. The findings revealed a range of definitions of inclusive research. Advocating for change at policy level was a common motivator for participants to engage in the process. Experiences of power imbalances were highlighted, in particular barriers created by academic standards. Conclusion: Definitions of inclusive research in Ireland can be seen to occur along a continuum. An inherent power imbalance exists between expectations of inclusive projects, and academic research standards across all disciplines, that can prevent the participation of people with intellectual disabilities in research. Occupational therapists are well-positioned to address the recommendations of the CRPD by supporting self-advocates to engage in inclusive research, which can enable them to create change in their lives.