Cripping the Ethics of Disability Arts Research
The use of multimedia story-making and narrative-based drama in disability research raises conventional ethical issues of informed consent, anonymity, and confidentiality. In this chapter, we explore unique issues that arise when working with non-normatively embodied/enminded participants in a collaborative way, using arts-based mediums that transgress boundaries of anonymity and privacy, and call for difference-tailored consent processes. We identify unique ethical issues/practices arising out of our research with Re•Vision, a research-creation centre that uses the power of the arts to dismantle stereotypical understandings of mind-body difference that create barriers to healthcare. Drawing on Re•Vision’s arts research, we map ethical conditions under which participants/collaborators/artists create their stories, and how curation of multimedia stories and drama gives rise to an ethics of voice and bearing witness.
We thank our funding organisations, the Canadian Institutes of Health Research (CIHR) and the Canadian Foundation for Innovation (CFI) for supporting this research. We also acknowledge the School of Disability Studies at Ryerson University for the generous donation of accessible workshop space and Tangled Art + Disability, whose funding assisted us in pushing the boundaries of the multimedia storytelling genre. We also thank the artists and storytellers who participated in our many workshops and performances held throughout the province of Ontario.
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