An excerpt from
Living with Polio
The Epidemic and Its Survivors
by Daniel J. Wilson
During the middle decades of the twentieth century, polio, or infantile paralysis, was the most feared disease of childhood and adolescence. Every summer, when the poliovirus circulated most freely, parents warned their children not to drink from public water fountains, to avoid swimming pools and swimming holes in ponds and rivers, and to stay away from movie theaters and other crowded public places. Although polio was sometimes fatal, parents more typically feared the crippling paralysis that was so characteristic of the disease. At a time when American society made few accommodations for the disabled, parents dreaded the potential of polio to cripple young lives full of promise. But, until the development of the Salk and Sabin vaccines, there was little parents could do to protect their children from exposure to the poliovirus.
Polio begins innocently enough with the symptoms of an intestinal virus, fatigue, nausea, and a fever. In more than 90 percent of the infections, the virus remains in the alimentary and intestinal tract, does no permanent damage, and conveys lifelong immunity to that type of polio virus. However, in less than 2 percent of the cases, the virus invades the nervous system, where it damages or destroys the anterior horn cells of the spinal cord. These spinal cord cells are part of the motor neuron system, and their damage or destruction produces the paralysis associated with polio. Because polio is highly contagious, children, adolescents, and adults diagnosed with polio were usually quickly whisked away to the isolation wards of the nearest hospital accepting polio patients. Here, separated from the support of parents and family, these patients endured creeping paralysis as doctors and nurses stood by unable to do more than make them comfortable while the disease ran its course. Only when the acute infection waned could patients and doctors begin to assess how much paralysis had resulted from the damage done by the virus. Polio patients whose muscles were paralyzed faced months, perhaps years, of arduous physical therapy to strengthen weakened muscles and to compensate for those atrophied because their motor neurons had been destroyed. In addition, many polio survivors would undergo repeated surgeries to fuse bones or to transplant ligaments and muscles in an effort to improve function.
In spite of the best efforts of the patients, their therapists and surgeons, many survivors ended rehabilitation still significantly disabled by their paralyzed muscles. At that point, polio survivors confronted the challenge of reconstructing lives so abruptly altered by the disease and of finding ways to live, to succeed in school and work, and to have a family in spite of their disabilities. And then, after having lived with their familiar impairments for decades, polio survivors discovered to their dismay that their bodies were failing them once again. After pushing their bodies for two to three decades, many began to experience new pain, fatigue, and muscle weakness with what came to be called post-polio syndrome. Many survivors came to view post-polio syndrome as a second disability. Paralytic polio was thus a disease whose physical and emotional consequences shadowed the entire lives of those who had contracted it.
Although polio is associated in the public mind with the period from 1930 to 1960, when epidemics occurred every summer somewhere in the United States, poliomyelitis is actually a very old disease. There is some visual evidence of the crippling typical of polio in ancient Egypt and other evidence suggestive of the disease in the classical world. Until the advent of modern sanitation in Europe and North America in the late nineteenth century, polio was apparently endemic, and most individuals were exposed to the virus as young children when they possessed some protection through maternal antibodies. The poliovirus is an intestinal virus that is spread largely through contaminated fecal material. The mouth is the normal entry portal for the virus, which in the vast majority of infections causes only a minor case of stomach flu. Ninety to ninety-five percent of infections are “completely inapparent.” Four to eight percent produce “abortive” cases of “minor illness” and only one to two percent produce a major illness and paralysis. Poliomyelitis became epidemic in Northern Europe and in the United States in the late nineteen and early twentieth centuries when modern sanitation practices increasingly kept children from coming into contact with the poliovirus. This meant the development of a population of older children, no longer protected by maternal antibodies, who were vulnerable to the virus. When the virus appeared in a community where it had been absent for some time, the result was an epidemic among those born since the previous epidemic and thus susceptible to the disease.
In addition to becoming epidemic, poliomyelitis was changing in other significant ways in the twentieth century. The age distribution of those who contracted the disease was shifting and becoming older. Whereas the vast majority of cases in the great 1916 epidemic had been under the age of four, by the 1940s and 1950s a significant number of cases were between five and nine or older than ten. This was significant because there was good evidence that the older one contracted the disease, the more likely it was to be paralytic. The rate of polio also increased in the 1940s and 1950s. While the 1916 epidemic remained the most severe in American history, the years from 1944 to 1955 recorded ten of the worst epidemic years in the United States between 1912 and 1970, and the 1952 epidemic was second only to 1916 in severity. From 1937 to 1955 there were 415,624 reported cases and 361,555 (87 percent) of these occurred from 1944 to 1955. Thus, although the rates of poliomyelitis remained well below those of such diseases as tuberculosis, scarlet fever, whooping cough, and measles, the increase in the number and severity of cases was real in the 1940s and 1950s and gave Americans considerable reason to fear the disease.
I focus on the polio epidemics that occurred between 1930 and 1960 because I have found few narratives from the earlier epidemics and because the polio experience changed in the middle decades of the twentieth century. Two things, in particular, altered the experience after about 1930. First, Franklin D. Roosevelt, whose legs had been paralyzed by polio in 1921 when he was thirty-nine, entered the national political stage first as governor of New York in 1929 and after 1933 as president of the United States. Roosevelt, who always portrayed himself as having recovered from polio, gave the disease new prominence and served as a role model for the many thousands who contracted the disease every year. In addition, by establishing a polio rehabilitation facility at a run-down resort in Warm Springs, Georgia, Roosevelt helped initiate a new approach in which restoring the confidence and determination of the survivors was as important as rehabilitating their bodies.
The second development that changed the polio experience was the establishment of the National Foundation for Infantile Paralysis (NFIP) under Roosevelt’s sponsorship in 1938. Through the fund-raising efforts of the March of Dimes, the NFIP under the leadership of Basil O’Connor sponsored and funded scientific and medical research to understand the virus and its actions in the body and to develop a vaccine to prevent the disease. In addition, the NFIP spent substantial sums every year to pay for the care of the children, adolescents, and adults who developed paralytic polio. The publicity machine of the NFIP—with its March of Dimes posters, newsreels, and magazine and newspaper articles describing the latest scientific discoveries and offering advice on how to protect children against polio and what to do if the disease struck—soon made infantile paralysis both widely known and widely feared. Although polio treatment and rehabilitation were never fully standardized, the national and local efforts of the NFIP clearly shaped the way polio was experienced from the early 1940s to the end of the epidemics. Mothers learned the warning signs of polio, children learned to avoid water fountains and swimming pools, and adolescents with a summer flu feared the worst. Beginning in the early 1940s, the NFIP tried to ensure that the medical community was informed of the best methods of treating polio. In addition, by paying much of the cost of treatment the NFIP tried to guarantee that polio patients received proper care and appropriate rehabilitation. While the amount and quality of care during both the acute and rehabilitative phases of the disease still varied widely from place to place, the efforts of the NFIP nonetheless established a kind of template for the polio experience, even though every patient’s experience had its unique aspects. The implications of the Roosevelt model for what was expected of polio patients and the work of the NFIP to fight polio and care for its victims meant that the polio experience from 1930 to 1960 was different from that in the earlier epidemics.
This book is an exploration of lives altered by their encounter with the poliovirus. It tells the story of polio from the perspective of the polio patient and polio survivor. The book is organized around the experience of having polio, recovering from the disease, and living with a disability in the second half of the twentieth century. The separate chapters deal with the phases of the polio experience from the diagnosis and acute illness through recovery and rehabilitation; reentry into the worlds of home, school, and work; life with a permanent disability; and the physical and emotional consequences of the late effects of polio. I have sought to portray the range of experiences of polio patients and polio survivors as they have moved through the stages of the disease and its consequences. I have not tried to construct a typical polio experience because I don’t think there was one. Some cases were quickly diagnosed and sent to isolation hospitals. For others, there was a considerable delay in diagnosing the disease. And some polio patients were treated at home and never hospitalized. Many polio patients experienced recovery and rehabilitation in large wards segregated by age and gender, but others had private or semiprivate rooms or recovered at home using a mixture of orthodox and unorthodox treatments. Some polio survivors were welcomed back to schools or jobs, while others experienced prejudice in school and discrimination seeking work. Many polio survivors, but not all, succeeded in finishing their educations, having careers, marrying, and raising families. And while many survivors have experienced the distressing symptoms of post-polio syndrome, others have thus far escaped. Each polio experience was, to some extent, unique, but elements of the experience were shared, and I have tried to bring out the central characteristics of each phase of living with this disease and its crippling aftermath.
Living with Polio is based on over 150 polio narratives. The narratives are almost evenly divided between men and women. These narratives take many forms. Some are full-scale autobiographies that treat the life before and after polio. Most book-length narratives, however, begin with polio and take the story forward to cover the disease, recovery, and rehabilitation. Many of the longer narratives written during and immediately after the period of the epidemics, which ended in the early 1960s, concluded with rehabilitation and the return to home, school, and work. However, narratives written in the 1980s and after usually continue the account through the writer’s development of post-polio syndrome. These book-length polio narratives vary widely in literary quality, tone, and openness to discussing difficult and often painful issues involving treatment and mistreatment and feelings of shame, anger, fear, and resentment. The earlier narratives tend to be narratives of triumph with an uplifting account of how the author overcame polio through hard work, a strong will, and determination. The latter narratives are more likely to be forthcoming about the powerful emotions engendered by polio, the pain and difficulty of polio rehabilitation, anger at treatment and mistreatment by medical personnel, and the shame of living with a disabled body caused by a highly feared disease. I have also relied on shorter narratives and articles published in popular magazines such as the Saturday Evening Post, Life, and Reader’s Digest, and in newspapers such as the Los Angeles Times and the Philadelphia Inquirer. Other sources include short essays reflecting on the author’s experience and the recollections of polio survivors published in the newsletters of post-polio support groups. Oral histories of polio survivors constitute an additional source as do two documentary films. And, finally, I have used the Internet, where polio survivors on discussion lists carry on threads reminiscing about the hospitals, pranks on the rehabilitation wards, the smell of hot, wet wool, and nurses to hate or love. While some of these narratives are carefully crafted autobiographies or reflective essays by professional writers, the oral histories, support group newsletters, and Internet sources give voice to the experiences of men and women who would have been unlikely to write a formal autobiography. I have also drawn on my own experience of having polio in 1955 when I was five, undergoing a spinal fusion in 1960, and developing post-polio symptoms in the mid-1980s.
By relying on these varied narrative sources I have sought to give voice to the polio patients and the polio survivors. Scholars of illness narratives have argued that such narratives allow us to get inside the experience of illness and the rigorous rehabilitation that followed. As Anne Hunsaker Hawkins has observed about what she calls “pathographies,” illness narratives “show us the drastic interruption of a life of meaning and purpose by an illness that often seems arbitrary, cruel, and senseless; and by treatment procedures that too often can appear as likewise arbitrary, cruel, and senseless—especially to the person undergoing them.” Hawkins argues, however, that the task of the pathographer is not simply to describe but also “to restore to reality its lost coherence and to discover, or create, a meaning that can bind it together again.” Illness narrative restores “the person ignored or canceled out in the medical enterprise and it places that person at the very center.” In a very real way, pathography “gives that ill person a voice.” Likewise, Arthur Frank, in The Wounded Storyteller, suggests that “the ill person who turns illness into story transforms fate into experience.” Stories, he writes, “have to repair the damage that illness has done to the ill person’s sense of where she is in life, and where she may be going. Stories are a way of redrawing maps and finding new destinations.” And, finally, G. Thomas Couser has noted that “one of the most fundamental functions of the illness narrative…is to validate the experience of illness—to put it on record, to exemplify living with bodily dysfunction, to offer lasting testimony.” Relying on polio narratives, then, provides a way to understand what it was like to contract a greatly feared disease in mid-twentieth-century America, to undergo polio recovery and rehabilitation largely isolated from friends, family, and all that was familiar, and to live with a significant disability in the decades before and after the Americans with Disabilities Act of 1990.
Although these narratives allow us to see and understand the lived experience of polio in the mid-twentieth century, as sources they also have some limitations. The vast majority of narratives that I have found and used are by polio survivors who are white. There are a handful of brief accounts from African Americans, but none from Hispanics. Most of the writers were at least middle class in terms of their economic and social positions at the time of writing. Their middle-class standing is consistent with what other scholars who have used illness narratives have discovered. Both Anne Hawkins and Thomas Couser have noted the predominance of middle-class writers among the authors of illness narratives because they are more likely to have the education and opportunity to write and publish. This is less true of some of the narratives, the oral histories, and the Internet sources. Many of these reveal a background that was distinctly limited in its pre-polio economic status and social aspiration. In fact, the disabilities of polio, by forcing young men and women to focus their energies on their educations, enabled some polio survivors to improve their social and economic status.
The narratives also slight the experience of polio patients who died during the acute phase of the illness or who failed to work hard to recreate life after polio. There are suggestive comments in these narratives about fellow patients or survivors who died early or simply gave up and withdrew into their own private worlds. Although not all the narratives I have used are explicitly “overcoming narratives,” they at the very least reflect the experiences of men and women who in some sense came through their polio experience and gained sufficient critical distance to be able to be able to write about it. As Harlan Hahn has observed about the autobiographies of physically disabled individuals, “Few autobiographies are written by persons who consider themselves a failure in life, and the disabled men and women portrayed in these works seemed to be especially assertive, determined, and capable of getting what they wanted in life.” Nonetheless, a few sources discuss fellow patients who died early in the illness or who were unable or unwilling to strive to fight and overcome their illness and disability, and I have tried to encompass this aspect of the polio experience as well.
One of the challenges to relying on published polio narratives is that in some measure the earliest narratives shape those that follow. Published narratives, whether book length or article length, can help those who had polio understand their experience, but they can also influence the way in which readers of these narratives begin to mold the memories of their own experience. As Arthur Frank observes, “Published stories also have a particular influence; they affect how others tell their stories, creating a social rhetoric of illness.” He notes that “a published narrative of an illness is not the illness itself, but it can become the experience of an illness.” Accordingly, certain aspects of the polio experience become almost set pieces in the narratives—getting sick, finding out you had polio, being separated from parents and family, enduring the hot wool treatments—and most writers of polio narratives incorporate their own experience into the expected elements of a polio story. These narrative patterns make it possible to generalize about the experience of having polio, but there are also enough variations in the experiences and published memories to keep a reader’s interest. For all their similarities, no polio experiences were ever the same. In addition, as Amy Fairchild has pointed out, the narrative patterns of polio memoirs changed over time because of the aging of the polio cohorts, changing social and cultural attitudes about medicine, and evolving social expectations regarding revealing in print powerful emotions such as anger, fear, and shame. She argues that early polio narratives, those written in the 1940s and 1950s shortly after the disease struck, were often accounts of the “acute, painful stages of the disease,” with some going on “to tell stories of either full or substantial recovery.” The narratives written after the mid-1950s more often “reflect a lifetime of coping with chronic disability.” The perspective of these later writers was often influenced by social and political developments such as the civil rights movement or the struggles for women’s rights, patients’ rights, and disability rights. In addition, “polio’s second wave of narrators were part of a culture in which it became increasingly acceptable to express sadness, discontent, and even resentment.” These later narratives are less triumphal and more complexly nuanced regarding the lifelong struggle of living with a permanent disability. Thus, literary, social, and cultural influences have helped create the distinct style and tone of the polio narratives and, in turn, the published memoirs have helped fashion both individual and collective memories of polio.
There is also the question of the truth of these stories and the reliability of these narratives. In one sense, these narratives cannot be literally true. Almost all of them include significant quoted dialogue recalled several years or even several decades after the conversations took place. Polio patients and survivors did not have tape recorders available to record conversations with parents, spouses, doctors, and nurses. Clearly the dialogue is a reconstruction based on their memories of the incidents being described. However, if the words quoted in the narratives are not precisely the same as the ones uttered at a polio bedside, I am convinced that they generally reflect the tenor and meaning of those remembered conversations. Scholars of illness narratives have acknowledged the impossibility of literal truthfulness in these stories, but they have also argued that in an important sense we can regard them as true nonetheless. Anne Hawkins, for example has argued that “pathographies may indeed be read as 'true stories,’ but the emphasis must be as much on the word 'stories’ as the word 'true.’ For these books cannot be taken as accurate records of experience: they are too highly charged, as the ambivalence and prosaic quality of everyday living is resolved into sharp contrasts and clear-cut issues.” She also notes that “the narrative description of illness is both less and more than the actual experience: less, in that remembering and writing are selective processes—certain facts are dropped because they are forgotten or because they do not fit the author’s narrative design; and more, in that the act of committing experience to narrative form inevitably confers upon it a particular sequence of events and endows it with a significance that was probably only latent in the original experience.” She acknowledges that “writing about an experience—any experience—inevitably changes it.” Arthur Frank also acknowledges that the truth of illness narratives does not lie in a literal fidelity to the actual experience. “The truth of stories,” he writes, “is not only what was experienced, but equally what becomes experience in the telling and its reception. The stories we tell about our lives are not necessarily those lives as they were lived, but these stories become our experience of those lives.” I have tried to be sensitive to the reconstructed nature of these accounts of polio and have sought to emphasize patterns, themes, and shared or similar experiences remembered by the authors of these narratives. While the details described and the conversations recounted may not fully or completely accurately replicate the actual lived experience of polio, these narratives nonetheless offer reliable testimony about what it was like to be a polio patient and polio survivor in the last two-thirds of the twentieth century.
Let me note several subjects Living with Polio addresses only tangentially. First, I don’t take up the case of the most famous American polio survivor, Franklin D. Roosevelt. Roosevelt’s case differed so significantly from the experience of the vast majority of polio patients that it is not an appropriate model of the polio experience in America. Roosevelt’s wealth and later his position as governor of New York and president of the United States provided him with a level of support and care impossible for ordinary citizens with the disease to emulate. There are in addition, a number of good accounts of Roosevelt’s illness and recovery. I have tried to focus, instead, on the range of experiences of individuals lacking Roosevelt’s advantages of wealth and power. Second, the polio rehabilitation facility Roosevelt established at Warm Springs, Georgia, is treated only as another facility where polio patients might seek rehabilitation. There is no doubt that Warm Springs was unusual for the time in its approach to rehabilitation, and that it served as a model for what polio rehabilitation could achieve. However, the capacity of Warm Springs was very limited, and only a small portion of polio survivors were ever treated at the facility. Most polio survivors underwent rehabilitation in facilities less well endowed, furnished, and staffed than Warm Springs. Third, I address the work of the National Foundation for Infantile Paralysis (NFIP) and the March of Dimes only through the perceptions of polio patients and their families. A history of NFIP, the March of Dimes, and the work of Basil O’Connor is needed, but that is another book entirely. Finally, the long effort of scientists and physicians to understand the workings of the poliovirus and to develop the ultimately successful Salk and Sabin vaccines plays little role in Living with Polio. John R. Paul’s A History of Poliomyelitis remains the standard source on the scientific and medical aspects of polio, and several other recent books have also traced the work of Jonas Salk and Albert Sabin in developing their vaccines. The vaccines, after all, came too late for the men and women who wrote the polio narratives.
In Living with Polio, then, the focus is squarely on the experiences of the men and women who remembered and recorded memories of being diagnosed with the most feared childhood disease, of their hospitalization and long, painful rehabilitation, of their struggle to rebuild lives painfully interrupted by disease, and, in some cases, of their dismay at acquiring a second polio-related disability late in life. Paralytic polio is not a disease that one recovered from easily. Its physical and emotional consequences were long-lasting and profound, even when polio survivors appeared to have overcome their disability, reconstructed their lives, and entered the American cultural and social mainstream. Accepting the cultural value of individual willpower, hard work, and determination, many polio survivors appeared to have triumphed over the disease that had weakened and paralyzed their muscles. And by the conventional markers of education, careers, marriage, and children, polio survivors were remarkably successful considering the severity of many of their disabilities and the social impediments they faced. That March of Dimes image of the little girl rising out of her wheelchair to walk once again was only part of the story, but it is the part that has dominated the history of polio patients and survivors to date. The public story has emphasized the drama of Franklin Roosevelt’s political success in spite of his paralyzed legs, the miracles of rehabilitation wrought at Warm Springs, the fund-raising efforts of the March of Dimes, the NFIP’s support for research and polio care, and the excitement of Jonas Salk and Albert Sabin developing and proving the success of their vaccines. In Living with Polio those undeniably dramatic events fade and the attention shifts to the children, adolescents, and adults whose bodies were paralyzed by the virus and who slowly, painfully, and determinedly rebuilt lives shattered by polio. It is their story, the story of ordinary Americans in their encounter with a feared disease, that is the subject of this book.