Disability and Illness in Arts-Informed Research: Moving Toward Postconventional Representations

by Nancy Viva Davis Halifax


Disability and illness are not easy subjects to write about in a direct manner. These are, however, the domains that most of us will eventually inhabit. It is a simple fact that our bodies fail, though our culture protests this at every occasion. The bodies of disabled people have been deemed unworthy of textual representation beyond the texts of medicine. The life stories of those who are suffering are seen as tragic, fodder for stories of what happens to the “other.”

The author posits that the sociopolitical structures of our culture limit the range of disabled people’s positions in the world; their absence in books and other cultural products points to the absence of social equity. The subjective experience of illness, impairment, and disability is poorly reflected in most current models of health and disease used in the practices and policies of medical and health institutions. Those with illness, impairment, and disability see this deficiency as a serious problem. This type of work that is called into creation by its subjects exemplifies the notion that writers are ethically preoccupied with telling stories, not only for oneself, but also for others.

This book defies and celebrates academic writing; it presents a story of illness and disability, experiences that collectively enrich and challenge our understandings of embodiment, narrative, social structures, identity, and politics—the full continuum of what it means and has meant, to be human.

The phenomenon of disability exists between and in people and social structures; as a category, “disability” is filled with multiple sites and meanings and resists reduction. It encompasses the visible and the invisible of bodily experiences and social systems along numerous and varied axes of difference. Conceptually, disability is a site of oppression, an axis of identity, and a call for human rights and social justice.

Stories like these move through our bodies, culture, and politics. As readers and writers, we are increasingly interested in how we can tell stories, what stories are telling, and from whose perspective the story is being told. The importance of language to describe, to witness lives, cannot be underestimated. The inclusion of photographs of illness and disability are also noteworthy in this writing and mark its value.

Artful texts represent our changed understanding of the world—through our relationships with art and texts and ourselves, we perceive our sense-making as we create what has not previously existed.

Conventional writing has been disciplined to inhabit particular kinds of space, a space of logic and the rational. This book allows us to meet with the intimate ephemerality of life through its allegiance to imagination. Its contribution lies also in its poeticizing of theory, the embodied manner of the writing, and its capacity as a text to reunite us with the life world.

Writing toward a culture embodying principles of social justice occurs in many forms, and part of what this text does is draw us toward an aesthetics of awareness, a profoundly subversive, relational, and social position. Social justice is an embodied concept, lived on a daily basis, in the commonplace of our lives. Social justice is implicit in this text and the imagery, and may be represented through (although not exclusively) a scar, a tale of a body oppressed by a group embedded in a medical hierarchy, people who do not want us to know or to question their knowing. The goals of the book include the cultivation of imagination, empathy, compassion, and awareness in the reader/viewer.

This is a remarkable and important book for both arts-informed researchers and educators and non-arts-informed researchers and educators in cultural studies, critical disability studies, education, health, and qualitative research.


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