Unfitting Stories: Narrative Approaches to Disease, Disability, and Trauma

Making Sense of Disease, Disability,and Trauma: Normative and Disruptive Stories

Whereas there were relatively few published stories of ill health or suffering twenty-five years ago, in English or other languages, a person visiting any library or bookstore today will discover a wide range of narratives that can be divided into several categories, including accounts of disease, disability, and trauma. These accounts have attracted attention from a wide range of professional and disciplinary perspectives. In the health sciences , such stories are used by practitioners and researchers who wish to go beyond biomedical perceptions of disease in order to understand the patient’s experience of illness. Bioethicists invoke personal stories as an alternative to universal principles in their attempts to understand ethical dilemmas from the perspective of patients and their families. Adopting a broader focus, qualitative researchers in the social sciences solicit and analyze oral stories in order to document the social determinants of health, and to provide data that will influence policy making in the health care system . Therapists use storytelling as a healing tool in private, one-on-one encounters with patients. In the humanities, both written and visual representations of disease, disability, and trauma have been analyzed by literary scholars and historians, as well as by researchers in cultural studies and gender studies who are interested in how artistic expression and form relate to the body that produces those representations. “Narrative” is used as an object or means of inquiry, from political science to psychology, from social work to applied ethics,1 yet the ways in which we receive, produce, analyze, and deploy the term, as well as the stories involved, vary considerably from one discipline to another. This is an area which demands multidisciplinary , cross-disciplinary, transdisciplinary, or interdisciplinary 3 the editors Making Sense of Disease, Disability, and Trauma Normative and Disruptive Stories collaboration to enable a sharing of perspectives that can lead to new insights. Like experiences of disease, disability, and trauma, this type of inquiry challenges our assumptions about what can or should be studied, how, and by whom. It forces us, literally, to think of our research in new terms, and to assess where our approach is situated in relation to debates about research between and across the disciplines. Such a dialogue (or “polylogue”) takes place in this collection of essays, which brings together work by academics, health professionals, and authors of narratives of disease, disability, and trauma. Many of the individual contributions illustrate or question particular disciplinary approaches, and their juxtaposition with other contributions provides a collage of multi-, cross-, or trans-perspectives. A broader discussion of the issues raised by this juxtaposition provides a frame for these contributions, reflecting the debates that took place in the course of our collaboration. This book is a product of a self-consciously interdisciplinary research project, entitled An Interdisciplinary Inquiry into Narratives of Disease, Disability, and Trauma, often referred to as the Wall project, conducted at the University of British Columbia, and funded with a major thematic grant by the Peter Wall Institute for Advanced Studies. The initial team from ubc was composed of scholars from the health sciences, social sciences, and humanities, and our activities over five years included an international conference, at which some of these papers were first presented, held at ubc in May 2002. The entire project, which is still on-going in various forms, resulted in far more material than could be contained in one book. In order to convey the variety of approaches considered and issues raised, we have included a broad sample of essays, many in abbreviated form, that represent relevant research. Research that crosses disciplinary boundaries is often assumed to be problem-based, occurring when specialists from different fields pool their resources to address a specific (often urgent) issue. In our case, however, what brought us together was not a specific problem but an interest in “narrative” as an object and means of inquiry, with different connotations, aims, and results, in various disciplinary and professional contexts. All the people engaged in this project shared a concern with the effects and implications of narratives in relation to experiences of ill health and health care delivery. Stories of illness and treatment emerge in very different contexts, and range from published autobiographies or novels to case notes and therapy sessions. In spite of these significant differences, they raise common issues regarding their status as sources of knowledge, and the ways in which we can or should analyze and interpret them. 4 narrative frames [18.222.69.152] Project MUSE (2024-04...