Living Dis/Artfully with and in Illness

Abstract

This article experiments with multimedia storytelling to re-vision difference outside biomedical and humanistic frames by generating new understandings of living dis/artfully with illness. We present and analyze seven short videos created by women and trans people living with illness as part of an arts-based research project that aimed to speak back to hegemonic concepts of disability that create barriers to healthcare. We call for a welcoming in of disability studies' disruptive and re-imaginative orientations to bodily difference to unsettle medicine's humanistic accounts. In turn, we advance medical post-humanistic approaches that call on disability studies to re-embody its theories and approaches.

Elements of a counter‐exhibition: Excavating and countering a Canadian history and legacy of eugenics

“…Anxieties rise, according to feminist bioethicist Scully (2008), when bodies leak outside the frame of prescriptive, or normative, narration. For example, leaders in twentieth‐century eugenics presumed disability was unwanted, pathological, and something to overcome, improve upon, and eliminate, thereby ignoring and marginalizing the actual experiences of people living with difference, impairment, and/or disability (Douglas et al 2020). As ITL showed, eugenicists and euthenicists extended this master narrative of pathology onto other groups, including Indigenous, racialized, and poor people, and worked to frame and contain them as “the tragic victim, the overcoming hero, the sweet angel, the contaminant, the burden to society and family, the evil or obsessive avenger and, psychologically or morally warped by impairment” (Scully, 2008, p. 117).…”

“…As ITL showed, eugenicists and euthenicists extended this master narrative of pathology onto other groups, including Indigenous, racialized, and poor people, and worked to frame and contain them as “the tragic victim, the overcoming hero, the sweet angel, the contaminant, the burden to society and family, the evil or obsessive avenger and, psychologically or morally warped by impairment” (Scully, 2008, p. 117). For scholars of story, such as Frank and Scully, and disability scholars Douglas et al (2020), this approach to narrative is dangerous because it forecloses a proliferation of stories (Frank, 1995) and the tellers' sense of self and moral agency because it creates a disjuncture between the expectations established by master narratives and actual lived experience.…”

“…Such decentering through counter‐stories disrupts the consensus created by master narratives by suggesting other ways of being (Boivin, 2015). Drawing from disability studies scholars who are re‐thinking narrative to include nonlinguistic and affective forms of storytelling, as a way to reimagine what it means to be human (Douglas et al, 2020; Kokanović & Stone, 2018), ITL enacted stories in multisensory, affective, text/nontext, nonlinear, and multimedia ways. At times, ITL intentionally chose not to depend on text‐based methods (such as information panels) to explain, or express, ideas and experience.…”

Fat Studies and Arts-Based Approaches: Positioning the Need for “Movement”

“…Using multimedia storytelling, Douglas et al (2020) highlights that to live in ways that are embodying fatness or illness while resisting medical intervention is often categorized as undesirable. Douglas et al describe their use of multimedia storytelling to include a variety of visual media forms that emphasize the raw experience of participants who craft their stories (2020).…”

Difference-attuned witnessing: Risks and potentialities of arts-based research

“…This methodology was developed by the Re•Vision Centre for Art and Social Justice, a research creation centre that investigates the power of the arts to influence decision-makers and imagine more just futures (Rice, 2020;Rice et al, 2017Rice, LaMarre et al, 2020). Across research projects, we work to create spaces in which interchange about difference, power, and oppression becomes possible, by bringing together minoritized and majoritized storytellers, including those located in systems (education, healthcare) implicated in minoritized groups' alienation and suffering (Douglas et al, 2020;Rice & Mu¨ndel, 2018). This approach responds to the urgent need for new kinds of social science methods to address persistent, deepening social inequities; we hold that in our neoliberal, hyper-individual, and highly polarized world, arts and storytelling methods hold potential for making dialogue across social problems and uneven power relations possible, but do this in ways that do not erase power, collapse difference or ignore the psychic and material effects of systemic harms (Douglas et al, 2019;Rice, Dion et al, 2020;Rice & Mu¨ndel, 2019).…”