HEALTHCARE
Out of the lung
SEAMUS SWEENEY
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Wilson succeeds admirably on his own terms — taking ownership of the disease from medics ... and giving it back to the patients who actually experienced it.
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Living with Polio: The Epidemic and its Survivors, Daniel J. Wilson, University of Chicago Press, p.299, $29. 0 226 90103 3
OF the many ways in which the American cultural landscape has changed since the 1950s, the disappearance of polio from the national consciousness may not immediately loom large in one's mind. However, the disease was associated with a range of potent images — rows of iron lungs with their distinctive mirrors above, the photogenic children of the March of Dimes posters — that still reverberate for the baby-boom generation. From the 1930s to the 60s, but particularly in the 50s, the fear of polio was an acute one, comparable to the contemporary fear of Communist infiltration, with healthy young Americans struck down by an invisible enemy. Now the adorable little patients featured on those posters seem as dated as the idea of dedicated Marxists working their way through America's institutions. Not only, though, are these images well within living memory, but what they represent has been part of the experience of thousands of Americans today. Daniel J. Wilson, the author of Living with Polio, is himself a polio survivor.
In 1955, Jonas Salk developed the polio vaccine, which led to new cases becoming virtually unknown in the West. Now polio is, according to the World Health Organisation, nearly eradicated — though the WHO had previously promised this, in their rather grandiloquent way, for the end of 2000. While the anniversary of Salk's breakthrough will rightfully be celebrated, Wilson worries that a note of medical triumphalism could be struck. This would obscure what, for him, was the central aspect of the illness — the experience of the patient.
Based on personal narratives, the book follows the experience of having polio chronologically from diagnosis — one which doctors were often understandably reluctant to make, and rarely seemed to handle well — through the acute crisis, the gradual process of rehabilitation, all the way to the patient's return home and subsequent life. The earlier narratives, contemporaneous to or from just after the epidemic years, tend to focus on triumph over adversity, the importance of "fighting spirit", and providing an inspiring example. Later narratives began to acknowledge the very mixed emotions associated with the disease and its treatment, and a wide range of issues — frustration with the hospital regimen, sexuality, the sudden infantilisation of patients (not all of whom were children) — not before discussed. Wilson refers to the stories of scores of individual patients, hoping to give a broad portrait of every phase of the illness. But this approach dilutes the emotional impact of the individual stories, and gives parts of the text an over-academic air.
There is much uneasy reading here for health-care professionals. Incidents of cruelty and thoughtlessness abounded. It is difficult to read accounts of sadism associated with the terrifying transition away from dependence on the iron lung for breathing. Patients were often publicly humiliated by loud enquiries about their bowel motions. Hospitals could be pointlessly officious on such matters as visiting rights for parents. In a country as vast as the United States, many patients were hospitalised huge distances from their homes. Many patients buried their emotions, utterly helpless and dependent as they were, for the sake of peace, maintaining an outer stoicism they did not feel. In one of the cruel ironies of the disease, post-polio syndrome later afflicted those who had thought they had polio "licked". Wilson writes of how precisely those virtues associated with a good recovery — which he relates to the American, Protestant work ethic — such as persistent activity, helped contribute to the post-polio syndrome.
Overall, Wilson succeeds admirably on his own terms — taking ownership of the disease from medics (and from academics and theoreticians) and giving it back to the patients who actually experienced it. His book is not a history of polio, or an account of its treatment and epidemiology — although it is a valuable source of information on how the various treatments were experienced by patients. Some practitioners may take exception to the quite critical tone Wilson adopts towards treatment and conditions in the polio hospitals. Although kind and caring nurses, doctors and physical therapists do receive credit, it seems that the petty tyrants and sadists who existed (and exist) in healthcare professions loomed larger in the consciousness of the patients than what must have been the great majority of professional and conscientious staff. No doubt there is an element of displacement to this; nevertheless, Daniel Wilson's book is a sobering indictment of the treatment of disabled people in mid-century America that can be read with profit, and, it is to be hoped, without complacency, by any practitioner today.
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