Dissonant Disabilities: Women with Chronic Illnesses Explore their Lives (review)

The development of the contemporary disability-rights movement has been both driven and shaped by the refusal of the medical model of disability. In seeking to define ourselves and claim our rights to political and personal self-determination, disability advocates and scholars have had to deconstruct, dispute, and displace illness-based views of our bodies.

Unfortunately, rejecting the medical model has too often meant rejecting the views and stories of people with ongoing medical needs, and even minimizing our own health concerns. The disability-rights movement’s “repeated assertion that ‘we’re not sick’ contributes to the alienation of people who are sick but still require access to society and their human rights,” writes Julie Devaney in Diane Driedger and Michelle Owen’s collection of essays, Dissonant Disabilities (“There Always Seems to Be Excuses: A Grad Student’s Narrative of Autoimmunity,” 124). As a result, disability-related texts—scholarly, theoretical, and literary—have often left out the perspectives of people with chronic illnesses.

As its subtitle indicates, this volume brings forward some of those voices—particularly the voices of women with chronic illnesses. The authors and subjects of these essays must navigate both gender-based and health-based social expectations and constraints. They illuminate, to a greater or lesser extent, the experience of living with a wide range of conditions, including multiple sclerosis, bipolar disorder, chronic fatigue syndrome, cancer, depression, and anorexia.

The essays vary in approach, scope, focus, and quality. Several present sociological studies involving questionnaires and interviews, while others are primarily personal narratives. The editors and many of the authors are Canadian, and Canada’s legal and cultural environment is the book’s primary contextual framework. Women of colour are underrepresented, as are working-class women. The editors acknowledge this, pointing out that “writing our lives and our illnesses demands a certain amount of privilege ... time to think, the ability to write, the confidence to submit an abstract, and the energy to produce an edited final submission” (Introduction, 10). There is more diversity in terms of disease type, age, and sexual orientation (both heterosexual and lesbian women appear, though no transgendered women).

A common theme is the way that women’s experiences of chronic illness set them apart from their well peers, from conventional workplaces, and from the medical practitioners whose care they need. Many speak of being judged for their failure to keep up with their personal, professional, and political obligations. Susan Wendell, for instance, probes her sense of guilt about not being a “Good Feminist,” as defined by enthusiastic participation in “meetings, parties, phone calls, and marches in the streets” (“Notes from Bed: Learning from Chronic Illness,” 213), when she both needed and preferred to stay in bed, reading, writing, and resting. Other authors and informants describe how friends, fellow students, and even family members have disbelieved the reality of the limitations arising from chronic illness, regarding the ill woman as lazy or hypochondriacal.

When encountered in the workplace, such attitudes can imperil a woman’s economic survival. Several chapters relate women’s struggles to secure necessary job accommodations in order to continue employment while tending to personal health needs. Even with Canada’s relatively strong human-rights code protecting workers with disabilities, the invisibility and misconceptions that surround chronic illness—in some cases compounded by workplace gender politics—have thwarted some of the women’s efforts to assert their rights. Others find strength by ‘caucusing,’ risking disclosure and coming together in solidarity to improve the working environment for all chronically ill and disabled employees in a workplace.

The medical profession itself is a site of conflict and change for many of the women profiled in the book. Doctors often doubt the women’s self-reported symptoms, or blame them for failing to fit into clear definitions of well-understood illnesses and recovery trajectories. One study of women with...