Life Writing and Life-Altering Disease: Engendering Counternarratives of Chronic Illness
The aim throughout this research-creation project is to disrupt conventional expectations of illness narratives—specifically that they end in triumph or death—and to instead set the foundation for a piece of life writing that explores neither of these realities. Thus, while Emilia continues to research the scholarly literature on chronic illness, she is simultaneously engaged in writing her own illness narrative chronicling a four-year period of being diagnosed and treated for an autoimmune disease. In resisting the narrative arc towards triumph over disease, this project explores the ongoing impact of biomedical treatments and seeks not only to navigate place and time, but also the normative logics of home and family. This narrative focuses on “living with” chronic illness as a means of imparting personal knowledge and creative expression. This narrative works in the mode of “auto-theory” where queer personal reflection is held in tension with theoretical insight.
Moreover, as a project that aims to share its scholarly and creative findings in a highly accessible way, Emilia is also acting as Executive Producer and Host on the podcast, On Being Ill. This podcast aims to engage a robust public conversation on illness in order to better understand the diversity of patient experience.
Project funded by a 2020-2022 SSHRC Insight Development Grant
Chronically Ill Research-Creation: Engendering Experimentations in Form and Content
Illness narratives present a challenge to readers when they are championed primarily for what they can teach us about a patient’s experience (Woods, 2011). Such personal stories, when written in a linear narrative form, unwittingly become entangled in larger issues with which all life writing projects must contend: questions about the veracity of memory, representation of self and responsibility to community (Bolaki, 2016; Jurecic, 2012). Too often, those outside the disabled and chronically ill communities judge these same illness narratives strictly along the lines of factual accuracy or inaccuracy; a memoir of illness can be invalidated if its author misrepresents or misremembers the minutiae of their diagnosis, treatment, convalescence, or rehabilitation. This research-creation project will use experiential knowledge, critical theory, and creativity to address complex questions of truth-value, form and structure, as well as the personal politics at the heart of researching and writing compelling illness narratives.
Project funded by a 2024-2027 SSHRC Insight Grant
Dissonant Disability Poetry and Poetics in Canada
This ongoing scholarly project explores why chronic illnesses can be understood as “dissonant disabilities” by turning to contemporary autobiographical writing published by women in Canada. The central argument is that scholarship in cultural studies should turn attention to the gendered and racialized realities of living with unpredictable bodies and minds. Emilia has published on this topic in Disability Studies Quarterly; a revised version of this critical-creative article appears in Still Living the Edges: A Disabled Women’s Reader. She has also explored this topic in the special issue of Canadian Literature on “Pandemics.” And representations of gender, race, sexuality, and mental illness in postcolonial fiction are investigated as part of a special section in the journal Studies in Canadian Literature.
Disruptive Breast Cancer Narratives: Shaping Cultural Politics, Informing Feminist Bioethics, and Performing Repair
The foundation for Emilia’s ongoing research projects was set through her doctoral research, which was supported by a Joseph-Armand Bombardier SSHRC CGS Doctoral Award. This research—revised, updated, and published in book-length form—appears in Disrupting Breast Cancer Narratives: Stories of Rage and Repair (University of Toronto Press, 2019). By refuting the notion that personal narratives inherently enable the cultural production of ignorance, this work clarifies that restrictive cultural politics engender standardized stories of breast cancer. These stories resist the optimism of pink ribbon culture with its primary focus on raising awareness of cancer and the promotion of early detection. Instead, they deploy anger to reframe cancer as a collective rather than individual problem, and in refusing the identity of survivor, such narratives query what it means to live with and die from cancer. Breast cancer stories can function as important counternarratives challenging normative expressions of gender, sexuality, and emotion. In examining the power of experiential stories in relation to mainstream breast cancer culture, this research uncovered a subgenre of illness narratives called “disruptive breast cancer narrative.” This book contributes to the fields of health and medical humanities, women’s and gender studies, as well as studies in autobiography and life writing.
Emilia has published on this topic in a range of journal articles and has given numerous conference talks on the subject. Most recently, she was invited by CMAJ (Canadian Medical Association Journal) to contribute to the humanities section of its feature on medicine and society. Through this knowledge mobilization initiative—a short piece and podcast interview—her argument on the problem of standardized breast cancer narratives was able to reach numerous primary care physicians in Canada.