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 manuscript 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. As a published book, Wayfinding: On Illness and Identity, will add to the small but growing terrain of autobiographical writing on chronic illness with the goal of making a positive contribution to health and medical humanities scholarship. 

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.

Official banner for the Social Sciences and Research Humanities Research Council of Canada.

Project funded by a 2020-2022 SSHRC Insight Development Grant

Tributary Health

Having previously employed an ecocritical approach in exploring remote island communities in her first book of poetry, Surge Narrows (Leaf Press, 2013), a finalist for the Gerald Lampert Memorial Award, moving from coastal British Columbia to the aspen parkland of Alberta initially provided the impetus to undertake this new work of research-creation focused on the complex health of tributaries in prairie watersheds. At present, Emilia continues to engage in fieldwork trips to the Mill Creek Ravine in Amiskwacîwâskahikan (Edmonton). As an exploratory project, it seeks to foreground settler responsibility in connection to the precarious nature of freshwater ecosystems for the health of both human and non-human species. River tributary systems provide a departure point to explore how writing a sense of place can lead to decolonizing understandings of land. Emilia has recently completed a third collection of poetry, funded by a project grant from the Canada Council for the Arts, with the working title of Ravine.

Official banner for the Canada Council for the Arts

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.