Cripping the Ethics of Disability Arts Research

Abstract

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.

Difference Within and Without: Health Care Providers’ Engagement With Disability Arts

“…Art can serve as a problem-solving medium in animating and addressing injustices (MacDonnell & MacDonald, 2011). In particular, disability arts, an emergent arts sector in Canada that jointly cultivates art created by disabled people and works to establish disability cultural practices to make culture more inclusive, can trouble liberal notions of “human-ness” and re-imagine what it means to be human (Chandler, Changfoot, Rice, LaMarre, & Mykitiuk, 2018; Changfoot & Rice, in press; Rice et al, 2017; Rice, LaMarre, & Mykitiuk, 2018).…”

“…Disabled and nondisabled researchers received immersive training in video-making prior to co-leading the workshops. As part of this process, many made their own self-reflective videos (Rice, LaMarre, Changfoot, & Douglas, 2018; Rice & Mundel, 2018) and some also identified as members of disability arts communities beyond the project (Chandler et al, 2018; Rice, LaMarre, & Mykitiuk, 2018; Rice & Mundel, in press).…”

“…The workshops also featured small group and individual tutorials on creative writing and using audio, video, and editing software and equipment, and full technical, writing, and conceptual support assisted participants’ move from reflection to script development to finished video. As this research progressed, the workshops became vibrant spaces for incubating disability arts practices and community (Chandler et al, 2018; Rice, LaMarre, & Mykitiuk, 2018; Rice & Mundel, in press). Such cultural production moves beyond a social model of disability, which advocates primarily for the removal of barriers, by advancing disability culture through cultivating art-making practices of disabled people as creators, leaders, and participants in artistic work.…”

Co-emergence: an art-full dance of inquiry into artists’ experiences of making art

“…In the end, the theme of carefully bringing forth with others predominated in artist transcripts. Boydell (2011) comments on how performers may experience the emotional ramifications of engaging with challenging subject matter; in Small Acts, however, rather than those without lived experience vicariously performing disability, performers with situated realities and lived experiences were re-exploring and re-presenting their own experiences and emotions (Rice, LaMarre, and Mykitiuk 2018). Reconciling performerparticipants' various physical/emotional accessibility requirements and often powerful affective responses to the personal material being mined was further complicated by the some-times conflicting research, aesthetic, and political aims.…”

Healthcare providers’ engagement with eating disorder recovery narratives: opening to complexity and diversity

“…54. Carla Rice, Andrea LaMarre, and Roxanne Mykitiuk (2018), “Cripping the Ethics of Disability Arts Research,” in Handbook of Ethics in Critical Research: Stories From the Field , ed. Catriona Macleod, J. Marx, P. Mnyaka, and G. Treharne (London: Palgrave), 257–72.…”