Diane Driedger and Michelle Owen's anthology of personal narratives and research papers candidly examines the gendered experience of women living with chronic illnesses — myalgic encephalomyelitis, fibromyalgia, depression, non-malignant chronic pain, musculoskeletal conditions, and cancer among others — is a valuable addition to a growing body of scholarship within disability studies. Lauded by the authors as the first compilation of its kind in Canada, the United States, and Britain, (p. 2), the book is an accessible and appealing text that brings the voices of women with chronic illness out of their traditionally marginalized locations in both feminist and disability studies.
Stressing the import of theorizing chronic illness through personal experience (p. 10), the book is uniquely framed around the notion of "dissonance" or the discord between how women embody chronic illness-related disabilities in their everyday lives versus the ways illness and disability are socially constructed and interpreted in society. The book, divided across five sections and 18 essays, is informed by a feminist and social model of disability as exemplified by an impressive array of themes including disability as a shameful construction, the negotiation of power and knowledge within patriarchal institutions such as medicine and the academy, the uncertainty of fluctuating illness, idealized bodies, stigma, social exclusion, and oppression, the discrediting of ill bodies, issues of self-identity, the organization of work arrangements, caring relationships, and struggles for equity and accessibility.
These varied contributions compellingly engage the reader to entertain a more complex understanding of chronic illness in relation to socio-political structures enveloping lives in context. Particularly poignant and skilfully written contributions that captured my attention include Swoboda's "Listening to the Body: Women with Chronic Fatigue Syndrome, Fibromyalgia, and Multiple Chemical Sensitivities Talk about Illness and the Body" which introduces the idea of "contested illness" and the struggles women encounter in crediting their bodily knowledge against medical interpretations of disease. Arguing a related tack, Grills and Grills' "The Social Construction of Doubt: Women's Accounts of Uncertainty and Chronic Illness" describes how the patriarchal organization of medicine engenders authoritatively static constructions of women's bodily experiences that are not always indicative of their lived realities. Similarly, in "Working Together: Women with Musculoskeletal Illness Interacting with Health Care Providers," S. Michelle Driedger and colleagues convey the linguistic tension between the legitimacy of objective, "hard diagnostic evidence" and the scepticism characterizing the subjective, "soft evidence" of women's experiential wisdom in the communication of bodies as healthy or ill.
Despite its ambitious agenda, the text disappoints in any rigorous analysis of how the social, historical, and political influences and reproduces the conditions structuring women's lives. Three outstanding exceptions rival this limitation. Teghtsoonian and Moss's "Signalling Invisibility, Risking Careers? Caucusing as an SOS" portrays the effectiveness of a university caucus as a political strategy in advocating for issues of equity including a barrier-free work environment for faculty with disabilities. Devaney's incisive narrative "There Always Seems to Be Excuses: A Grad Student's Narrative of Autoimmunity" accentuates the attitudinal and systemic barriers she experiences in being "not disabled enough" to secure accommodations as a graduate student. Wendell's cogently argued "Notes from Bed: Learning from Chronic Illness," considers the human and political value of suffering and the difficulties a "disabled identity" presents to the philosophical and practical tenets of feminism.
A brief afterword forfeiting any in-depth commentary on the far-reaching health, social, policy and civil rights implications of this book for disability studies, feminist scholarship, and health disciplines is its second pitfall. This lacklustre ending leaves the reader adrift in a problematic silence wanting more. While the editors allude in the introduction to a more complex theory of chronic illness in their critique of the social model stating, "no amount of social transformation will eradicate the pain and fatigue of those with chronic illness" (p. 8), an expanded discussion of the reciprocity between the corporeal and the political would make the text substantively richer. Finally, although this collection reflects diverse voices across ethnic, sexual orientation, age, relational, and life perspectives, many voices remain missing since contributors are academics and educated women who have the opportunities, energy, skills, and language to write and publicly share their stories.
Despite this critique, the book is an illuminative read for anyone interested in the intersections between women's health and disability issues. Since writing is a political act, the authors succeed in raising consciousness of the larger landscape of women's embodied experience and cultivate an understanding of chronic illness as part of the wider spectrum of human embodiment.
