Chronic Illness

Chronic Illness

From Experience to Policy
Edited by S. Kay Toombs, David Barnard, and Ronald Carson
Distribution: World
Publication date: 8/1/1995
ISBN: 978-0-253-11355-9
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“…excellent…” —Choices - Choice on Dying Newsletter

“Toombs, Barnard, and Carson have organized and edited a valuable series of papers that provide a rare perspective on the impact of chronic illness. Beginning with the person who is experiencing the chronic condition, they are able to weave an important blend of personal, social, and policy themes.” —Choice

“This volume of collected essays is a solid contribution to the medical humanities literature on chronic illness . . . the contributors have produced a cohesive, systematic, and sensitive examination of issues in chronic illness and disability.” —Medical Humanities Review

“Although it may seem to be intended largely for health care providers, this thought-provoking volume has much that will interest a wider lay audience.” —Medical and Health Annual

An often moving exploration of the human, moral, and policy aspects of a health issue that affects each of us. Through first-person accounts and the perspectives of literature, medicine, philosophy, and religion, this book explores what it means to live with chronic illness and the implications of this experience for social policy, health care, bioethics, and the professions.

Author Bio

S. KAY TOOMBS is Assistant Professor of Philosophy at Baylor University and author of The Meaning of Illness. DAVID BARNARD is Professor and Chairman of the Department of Humanities at the Pennsylvania State University College of Medicine. He is the co-editor (with William R. Rogers) of Nourishing the Humanistic in Medicine: Interactions with the Social Sciences. RONALD A. CARSON is Harris L. Kempner Professor of Medical Humanities and Director of the Institute for the Medical Humanities, The University of Texas Medical Branch at Galveston. He is co-editor of Medical Humanities Review.

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Table of Contents


Part One

1. Sufficient Unto the Day: A Life with Multiple Sclerosis
S. Kay Toombs

2. The Exceptional Family: Walking the Edge of Tragedy and Transformation
Ruthanne L. Curry

3. Chronic Illness and the Dynamics of Hoping
David Barnard

4. Rage and Grief: Another Look at Dax’s Case
Lonnie D. Kliever

5. Whose Story Is It Anyway? Authority, Voice, and Responsibility in Narratives of Chronic Illness
Sue E. Estroff

Part Two

6. Beyond Respect to Recognition and Due Regard
Ronald A. Carson

7. Chronic Illness and Freedom
George J. Agich

8. Disability and the Persistence of the “Normal”
John W. Douard

9. The Social Course of Chronic Illness: Delegitimation, Resistance, and Transformation in North American and Chinese Societies
Arthur Kleinman

10. The Role of the Rules: The Impact of the Bureaucratization of Long-Term Care
Muriel R. Gillick