The Autoimmune Library: An Arts-Based Approach to Women of Color’s (Counter)Narratives of Chronic Illness

Abstract

ABSTRACT Guided by critical race theorizing (CRT) and arts-based methodologies (i.e., metaphor and pictorial narrative mapping [PNM]), the present study analyzed the healthcare (counter)narratives of 150 United States (U.S.) women of color (i.e., Black/African American, Hispanic/Latina, Native American/Alaska Native, and Multiracial) who have autoimmune disease. Sensitized by the metaphor of a library book, participants were asked to story their healthcare journey through identification of a title, chapters, genre, and book cover description (i.e., [Illness] Storybook Survey). Using critical thematic analysis, we first identified dominant and counter-narratives present in participant storybooks, categorized by literary supra-themes of characters (i.e., dominant narrative of me versus my body, counter-narratives of me versus the system and illness as lineal), plot (i.e., dominant narrative of a hero’s journey, counter-narrative of chaos), and tone (i.e., dominant narrative of inspiration, counter-narratives of tangible self-help and humor). Next, guided by PNM, a data visualization technique, each author illustrated one counter-narrative within each literary supra-theme. Our analysis interrogates how participants’ stories both reify and resist ideological and structural power at the intersections of their racial, gender, and illness identities. Collectively, this study offers unique contributions to critical, intersectional, and arts-based approaches to communication research, and forwards new methods for studying health narratives historically located in the margins.