Inclusive Research: Is the Road More or Less Well Travelled?

Dear Colleagues,

In this Special Issue how far have we come in terms of living up to the principles of inclusive research captured in the disability slogan, “Nothing about us without us”, or more pithily, “No researching about us without us” will be explored. The foundational principles of inclusive research were introduced in 2003 by Walmsley and Johnson with outcomes aimed at people with intellectual disability having ownership over the “what” and the “how “of the research agenda. The purpose of this Special Issue on inclusive research is to capture internationally, “Where have we come to?” and “Where do we need to go?” Such questions are relevant now that it has been 18 years since Johnson and Walmsley (2003) first introduced the inclusive research paradigm in their text, Inclusive research with people with learning disabilities: past present and future.

While there has been much growth in people with intellectual disability becoming visible and vocal as researchers across a range of content and methodologies (Jones et al, 2020).

there has also been ongoing debate and development associated with Johnson and Walmsley’s foundational principles. Bigby and Frawley (2014a, 2014b) illustrated a three-component framework of inclusive research which ranged from an advisory role, to that of collaboration between co-researchers with intellectual disability and those without, to that of researchers with intellectual disability leading and controlling the research process. Whereas Nind and Vinha (2014) and Riches et al (2017) identified a less divided landscape placing importance on inclusive research being characterised by shared learning, mutuality, and reciprocity.    Riches et al heightened the value of such characteristics by reporting a sense of belonging that came from being a member of an inclusive research team.

Johnson and Walmsley re-joined the debate in 2017 updating their original definition

to additionally guide a second generation of inclusive researchers to work towards social change, campaigning for others, as well as standing with others on issues important to them (Walmsley, Strnadova & Johnson, 2018). Beyond the characteristics of the second-generation Milner and Frawley (2019) have called for space for a third wave of inclusive research where the focus is placed on research praxis that is self-directed by the researcher with the lived experience of disability. Such methodology aims to circumvent “othering” that can come from the unquestioned expectation that co-researchers with intellectual disability will fit into the mode of traditional research data collection methods.

The Special Issue will promote inclusive research as a paradigm that has continued to promote transfer of power from those that were once the "researched" to being and becoming the "researchers". This issue will draw upon the work of researchers who have adopted this paradigm to redress the exclusion of people with intellectual disability as partners in the research process.  Apart from contributing to the journal in an area of their own interest they will also be asked to reflect as research practitioners on how their involvement in inclusive research has developed over the years.  Also, this issue will provide opportunities for all members of inclusive research teams to co-author articles through use of accessible innovative contributions. Publishing for authors with intellectual disability has proved challenging (Riches et al, 2020) and this Special Issue will support digital contribution such as, video abstracts, video interviews, power point slide sets and photographs.  Technical support and guidelines for use of video extracts will be made available from MDPI.  Such innovation is aimed at bridging the divide between those inclusive research team members that publish and those who do not. Further all articles would be cost neutral to bridge the economic gap between salaried and non-salaried researchers

Articles are welcomed across a range of topics including but not limited to:

• The changing and evolving principles and practice of inclusive research;
• The growing global nature of the use of inclusive research;
• Emerging new models of inclusive research;
• Advances in the how people with intellectual disability have increased their agency within the inclusive research process;
• Facilitators and barriers of inclusive research;
• Equity in publishing inclusively;
• Accessible methodologies;
• Inclusive research and advocacy;
• Story telling;
• On being and becoming an inclusive researcher. 

References

Bigby, C., Frawley, P., & Ramcharan, P. (2014a). Conceptualizing inclusive research with people with intellectual disability. Journal of Applied Research in Intellectual Disabilities, 27(1),3–12. doi:10.1111/jar.12083

Bigby, C., Frawley, P., & Ramcharan, P. (2014b). A collaborative group method of inclusive research. Journal of Applied Research in Intellectual Disabilities, 27(1), 54–64. doi:10.1111/jar.12082

Johnson, K., & Walmsley, J. (2003). Inclusive research with people with learning disabilities: Past, present and futures. London: Jessica Kingsley Publishers.

Jones, K. J. Ben-David, S., & Hole, R. (2020). Are individuals with intellectual and developmental disabilities included in research? A review of the literature. Research and Practice in Intellectual and Developmental Disabilities, 7(2), 99-119.

Milner, P., & Frawley, P. (2019). From ‘on’ to ‘with’ to ‘by’; people with a learning     disability creating a space for the third wave of Inclusive Research. Qualitative Research, 19(4) 382-398  

Nind, M., & Vinha, H. (2014). Doing research inclusively: Bridges to multiple possibilities in inclusive research. British Journal of Learning Disabilities, 42(2), 102–109.

Riches, T., O'Brien, P., & The CDS Inclusive Research Network (2017). Togetherness, teamwork and challenges: “Reflections on building an inclusive research network”. British Journal of Learning Disabilities, 45(4), 274–281. https://doi.org/10.1111/bld.12199

Riches T.N., O'Brien P.M.; The CDS Inclusive Research Network. Can we publish inclusive research inclusively? Researchers with intellectual disabilities interview authors of inclusive studies. British Journal of Learning Disabilities. 2020; 00:1–9. https://doi.org/10.1111/bld.12324

Walmsley, J., Strnadova, I., & Johnson, K.( 2017). The added value of inclusive research. Journal of Applied Research in Intellectual Disabilities, 31(5), 751-759.  https://doi.org/10.1111/jar.12431

Emerita Prof. Patricia O’Brien
Guest Editor

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