Social researchers and participants with intellectual disabilities and complex communication (access) needs. Whose capacity? Whose competence?

Abstract

Despite the evolution of inclusive research and augmentative and alternative communication, there is an ongoing absence of people with intellectual disabilities and complex communication (access) needs from sociological cohorts. In an in-depth study of 10 individuals with complex communication access needs, the involvement of three participants with intellectual disabilities was highlighted. The purpose of this article is to describe how the investigation was conceptualised, designed, and adapted to maximise the participation of adults with intellectual disabilities and complex communication access needs. Revealed are the adaptations and approaches made to the core elements of the study: communication access, research design, consent-to-research, and methods. Also described are subsequent participant insights on the topic of inclusion of people with complex communication access needs in research. The investigation contributes to an evolving body of literature on inclusive research, highlighting tensions of competence and capacity, as well as capacity-building challenges more broadly.

Keywords:

• Intellectual disability
• ethics
• inclusion
• complex communication access needs
• augmentative and alternative communication
• research inclusion

Acknowledgements

Deep gratitude is extended to the participants of this research for their generosity, patience, and willingness to go the extra mile to get their messages understood (for the benefit of the study). Heartfelt appreciation to Associate Professor Kathy Arthurson and Associate Professor Lorna Hallahan from Flinders University for their wisdom and humanity, and to the Southgate Institute for Health, Society and Equity, Flinders University. Thank you also to the exceptional journal reviewers who challenged and encouraged this work in equal measure. Finally, gratitude is extended to Max Saul—the best of teachers.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes

1 Bliss Symbols are a constructed symbolic language consisting of several hundred basic symbols that can be used alone or in combination to form new words.