A dialogic approach to working inclusively in a Research Reference Committee

Abstract

Accessible summary People with intellectual disability do not often take part in research. We wanted to include people with intellectual disability on our research committee. We worked with two people with intellectual disability to help with their roles on the research committee. We talk about some ideas that made this work well. Two people with intellectual disability share their ideas on being a part of a Research Reference Committee. Abstract This paper reports the use of a dialogic approach to working inclusively with two young people with intellectual disability as part of a Research Reference Committee for a project that examined how adults with intellectual disability and their families plan for their future. The paper begins with an overview of the role of the Research Reference Committee written by the research team to provide the context for reporting. We then discuss and reflect on how we used mediated talk to working with the young people with intellectual disability to develop strategies for enabling them to actively contribute to the reference committee. The third section of the paper was co‐written with authors 3 and 4. The structure follows their decisions about how they wanted to write this section in ways that allowed them to tell their stories of participation as narratives, using their own words. In the discussion, we acknowledge the challenges of co‐authorship and consider the benefits of using an iterative dialogical approach to enable the active participation of these young people in a reference committee, and as a method of co‐authoring that allows a broader dissemination the voices of the young people with intellectual disability in research outputs.

Cooperation with Persons with Intellectual Disabilities: Reflections of Co-Researchers Associated with Conducting Inclusive Research

“…Just as other researchers (e.g., Björnsdóttir and Svensdóttir 2008;Lloyd et al 2019), we also found it challenging to empower co-researchers with intellectual disabilities to exercise control over the research process and the reporting of findings. To ensure that control, we sought to comply with the interests and choices of co-researchers with intellectual disabilities (regarding research problems, research participants, and research location).…”

“…Inclusive research may be an answer to the social exclusion experienced by such individuals and the lack of their full participation in different spheres of life (Kramer et al 2011). It has been noted that this type of research enables persons with intellectual disabilities to be empowered, to step out of the role of research subjects, and to assume the valued social roles of leaders and research experts (Walmsley 2001;Lloyd et al 2019;Aubrecht et al 2021). By being both research participants and co-researchers, persons with intellectual disabilities feel valued and included, experience equality, and improve their selfesteem.…”

“…This changes the nature of the relationship between researchers without disabilities and persons with intellectual disabilities. They become more democratic, relying on respect and partnership (Lloyd et al 2019).…”