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Living with Polio

The Epidemic and Its Survivors

Polio was the most dreaded childhood disease of twentieth-century America. Every summer during the 1940s and 1950s, parents were terrorized by the thought that polio might cripple their children. They warned their children not to drink from public fountains, to avoid swimming pools, and to stay away from movie theaters and other crowded places. Whenever and wherever polio struck, hospitals filled with victims of the virus. Many experienced only temporary paralysis, but others faced a lifetime of disability.

Living with Polio is the first book to focus primarily on the personal stories of the men and women who had acute polio and lived with its crippling consequences. Writing from personal experience, polio survivor Daniel J. Wilson shapes this impassioned book with the testimonials of more than one hundred polio victims, focusing on the years between 1930 and 1960. He traces the entire life experience of the survivors—from the alarming diagnosis all the way to the recent development of post-polio syndrome, a condition in which the symptoms of the disease may return two or three decades after they originally surfaced.

Living with Polio follows every physical and emotional stage of the disease: the loneliness of long separations from family and friends suffered by hospitalized victims; the rehabilitation facilitieswhere survivors spent a full year or more painfully trying to regain the use of their paralyzed muscles; and then the return home, where they were faced with readjusting to school or work with the aid of braces, crutches, or wheelchairs while their families faced the difficult responsibilities of caring for and supporting a child or spouse with a disability.

Poignant and gripping, Living with Polio is a compelling history of the enduring physical and psychological experience of polio straight from the rarely heard voices of its survivors.

Read an excerpt.


312 pages | 20 halftones, 1 line art | 6 x 9 x 9 | © 2005

Culture Studies

History: American History

History of Science

Medicine

Social Work

Reviews

"A polio survivor himself, Daniel Wilson has scoured America’s polio narratives in order to distill the essential polio experience from the onset of the disease through to the late effects. In focusing on those individuals who have felt driven to recount their experiences of coming to terms with differing degrees of disability, he provides valuable insights into the history, not just of a disease, but of a generation-those postwar, pre-Salk vaccine babyboomers who succumbed to the annual epidemics of what was still sometimes called ’infantile paralysis.’"

Tony Gould | Tony Gould

"Daniel Wilson’s Living with Polio is an excellent history of this important disease. Wilson’s scholarship is evident, as is his personal polio story, which makes this book one of a kind and truly worth reading. This book will appeal to scholars, health care providers, polio survivors, and anyone interested in history. It is a remarkable book that gives the real story of what happened during those frightening years in the first half of the twentieth century when polio ran rampant."

Julie K. Silver | Julie K. Silver

"Moving and informative, personal and universal-a highly readable account of the plague of poliomyelitis by a fine writer who has experienced the illness himself."

Richard Selzer | Richard Selzer

"If you were an American child in the 1940s and early ’50s and contracted a ’summer flu,’ there was real cause for worry—because the initial signs of polio resembled flu symptoms. More than 400,000 American children in those years did get polio, and many of them survived—including [Daniel] Wilson, a professor of history at Muhlenberg College. This volume. . . tells the survivors’ stories: the difficult, painful journey from diagnosis to recovery, including paralysis, hospital isolation wards, grueling physical therapy, living with disability and, most recently, the emergence of postpolio syndrome, the recurrence of symptoms decades after recovery from the disease. Wilson’s account, drawn from more than 150 polio narratives, is perhaps most affecting in highlighting the less well-known moments and facts: a doctor’s futile attempt to downplay the harshness of the diagnosis; the double burden on African-Americans when hospitals would not admit them; and children being children even in the hospital wards, as they have spitball fights and play pranks. Wilson’s account is a fitting testimony to the survivors’ suffering and courage."

Publishers Weekly | Publishers Weekly

"Polio survivor Daniel J. Wilson takes a different and frequently poignant approach by recounting the experiences of the sufferers and their families. Head of the history department at Muhlenburg College, Wilson spends little time on the background of polio and the vaccine program, devoting most of his book to its victims. . . . While Jonas Salk and, to a lesser extent, Albert Sabin are seen as ’conquerors,’ it’s the survivors who proved to be the real heroes."

Bob Hoover | Pittsburgh Post-Gazette

"This book captures the nightmare of polio and its aftermath through the experiences of its victims. A polio survivor himself, Wilson has drawn on 150 personal narratives, published and unpublished, weaving quotes from those accounts with historical information on polio treatment and rehabilitation. The result is a vivid portrait of a devastating disease and its repercussions, as well as a glimpse into the physical, social, and psychological challenges of being physically disabled in mid-20th century America. For readers who did not experience the polio epidemic firsthand, this book dramatically demonstrates why the polio vaccine is such a significant milestone in modern medical history."

Janet A. Crum | Library Journal

"Mr. Wilson, a history professor at Muhlenberg College and a polio survivor himself, has done an admirable job of assembling more than 150 first-person accounts into a coherent narrative. He recounts every stage of the disease, including a chapter on ’post-polio syndrome,’ a mysterious resurgence of muscle weakness that assails many polio victims decades after they have accepted--and often overcome--their disabilities. . . . In the America of 2005, new cases of polio are extraordinarily rare; the World Health Organization hopes to eradicate it completely by 2008. But Mr. Wilson reminds us that more than half a million Americans are still living with its consequences."

Gordon Haber | New York Sun

"Living with Polio joins a growing list of books in which patients tell their own illness narratives. It gains authority because Wilson himself is a polio survivor, and his presentation of his own diagnosis at age 5, lengthy treatment, gradual recovery and relapse into postpolio syndrome, forms the core from which the others’ stories emanate. Because the tale of polio’s conquest is so dramatic, and the public presence of its famous participants so familiar, it has been easy to lose sight of polio’s everyday, private victims. Wilson shows us ’the range of experiences of individuals lacking Roosevelt’s advantages of wealth and power.’ It is a bracing approach. Wilson spent nearly a quarter century completing the book, which ’is based on over 150 polio narratives.’ Many poignant moments bring the polio experience to life. . . . For its abundant humanity and its rescuing of so many otherwise lost individual stories, Wilson’s Living with Polio is an important book."

Floyd Skloot | Chicago Tribune

"Wilson goes beyond the superficial images of polio wards, iron lungs, braces and crutches. His book presents in vivid detail the history of the disease and its impact on its victims and their families. A polio survivor himself, he skillfully draws on more than 100 personal narratives to present the varied chronologies of lives affected by the disease. No two experiences with polio are alike, but they all follow the same progression: diagnosis, acute symptoms, rehabilitation, life on the polio ward, going home, resuming life, living with limitations, and facing post-polio syndrome. Though Wilson is clearly a biased observer, his research benefits from asking questions that could only come from one who has lived through the disease."

Fred Bortz | Arkansas Democrat-Gazette

"Daniel Wilson. . . pieces together the experiences of 150 patients into a moving picture of the disease, from early symptoms to the alarming emergence of post-polio syndrome, a sort of neuronal exhaustion which sets in decades after the original episode. The pain, fear, guilt, isolation and tenacity of polio’s victims, and their families, are powerfully described and are in many ways reminiscent of the latest greatest plague, AIDS. Like today’s AIDS patients, polio survivors had a significant impact on attitudes towards illness; as Mr Wilson explains, the determination of polio survivors helped break down barriers for the handicapped, spurring ’a civil rights movement to free people with disabilities from cultural assumptions, from medical control...and to make their own decisions about how they would lead their lives.’"

Economist

"No one has heretofore offered as thorough description of polio’s victims and how their lives were transformed by their disabilities as Wilson. . . . No graduate reading list in the history of medicine or disability studies can afford to omit it. Scholars listening closely to patients’ voices will find it most satisfying."

Alan M. Kraut | American Historical Review

"A powerful study of the lived experience of those who experienced the ravages of polio. . . .  While the accounts of patients confronting the acute phase of the disease are riveting, the strength of this book lies with Wilson’s explanation of how polio survivors learned to cope with their long-term disabilities. . . .  An engrossing book that should get wide readership."

Charlotte G. Borst | Journal of American History

Table of Contents

Acknowledgments
1. Introduction
2. "I’m Afraid It’s Polio"
3. The Crisis of Acute Poliomyelitis
4. Covenants of Work: Recovery and the Rehabilitation Hospital
5. Straws on the Ceiling: Life on the Polio Wards
6. Going Home to a Long Recovery
7. Resuming Life after Polio
8. Living with Polio
9. An Old Foe Returns: Post-Polio Syndrome
10. Epilogue
Notes
Index

Awards

Library Journal: Best Consumer Health Book
Honorable Mention

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