C. Macleod, J. Marx, P. Mnyaka & G. Treharne (eds.). The Palgrave Handbook of Ethics in Critical Research. Switzerland: Palgrave MacMillan Press (2018) 257-272
The use of multimedia story making and drama based narrative in disability health research raises conventional ethical issues of informed consent, anonymity and confidentiality. In this chapter we explore unique ethical issues that arise when working with non-normatively embodied research participants in a highly collaborative way, using arts based mediums that transgress boundaries of anonymity and privacy, and call for difference-tailored processes of consent. People with disabilities have long been the object of medical and health research and the subjects of biomedical ethical transgressions, giving rise to the need for stricter human subject protocols about consent, confidentiality and anonymity. However, recent research collaborations with people with disabilities, where the participant’s role as research subject and artist become blurred present an opportunity to investigate the specificity of embodied ethical issues. Embedded in institutional histories in which disabled bodies have been put on display or hidden away, ethical conundrums arise in the context of doing arts based research with people with disabilities where anonymity and confidentiality may not be desired by research participants and where contingent processes of consent (in which participants co-determine the timeframe, space, and audience for their art) may be greatly preferred. These are some of the ethical issues and practices arising out of our research with Re•Vision, a research centre for art and social justice, that uses the power of arts based methods to dismantle stereotypical understandings of disability and difference that create barriers to healthcare. Through Re•Vision’s critical and participatory arts research processes, disability-identified and non-disabled researchers working to re-story disability and difference have come to be alive to the ethical conditions under which research participants/collaborators/artists wish to be identified and heard; with whom and under what conditions they are prepared to create and tell their stories; and how the curation of digital stories and narrative based drama gives rise to an ethics of voice and bearing witness.
Mykitiuk, Roxanne; LaMarre, Andrea; and Rice, Carla, "Cripping the Ethics of Disability Arts Research" (2018). Articles & Book Chapters. 2711.