Polio Wars
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NFIP officials recognized that their work shaped the public’s views of disability. While they did little to counter popular misconceptions about polio and did not lobby for greater access for the disabled to the working world, some chapters did use polio survivors as volunteers. The NFIP’s New York office employed a few survivors on the staff, although with no fanfare.53 The NFIP defined polio rehabilitation in strictly medical terms, boasting of the myriad crutches, braces, and other equipment it provided, a view reinforced by the orthopedic surgeons on its medical advisory committees. Indeed, officials were suspicious of all recovery tropes, whether by Kenny or anyone else. When a young man in a wheelchair was featured on a page of the National Foundation News, one Minnesota donor asked “what courage and hope any afflicted person can get from viewing a crippled-for-life person” compared to a fully recovered patient like a girl recently discharged from the Kenny Institute? “Now that would be a real example to hold out to others, but not if she would have come out crippled for life.”54 Attention to the disabled was as legitimate as extolling the recovered, Don Gudakunst replied. “Do not forget that the National Foundation holds forth a great deal of hope even for those who are permanently crippled by the disease,” and “even those who have been so severely crippled can have and are entitled to have our help.” While Gudakunst continued to believe that Kenny’s work offered the greatest possibility of recovery, he also tried to distinguish the serious work of medical science from the unrealistic optimism of her supporters. “There is no cure and there are no miracles that will completely restore loss of function when large amounts of the central nervous system have been destroyed.”55
One rare example of an explicit programmatic effort by the NFIP to promote new ways of thinking about disability appeared in 1943. “Infantile Paralysis Patient,” a poem published in the National Foundation News and widely reprinted, presented 3 ages of attitudes toward the disease: the dark ages of revulsion; the recent past of scorn; and today’s era of medical intervention and recovery. In grandfather’s day, a polio survivor was mocked and pitied: “poor wretch,” he was a “neighborhood curiosity,” “his crippled bones barred him from ‘polite’ society,’ ” and it was seen as a waste of time and money to educate him. In father’s day, the “poor fellow” was seen by his family as a burden, by his community as a necessary evil, “society tolerated him with ill-concealed disfavor,” schoolteachers “humored” and sometimes “abused” him, while girls “tittered” and boys “jeered.” Today, experts recognize the first symptoms of polio, “modern surgery performs miracles on his distorted limbs,” “hot baths and X-ray treatments revitalize his tortured body,” “psychologists brighten his future and broaden his outlook,” “his mother and father weep with joy, his friends cheer him on,” and “at last through God’s mercy and Man’s skill he is cured.” Instead of pity, “We HELPED. Lucky Boy! He HAD infantile paralysis.”56 Here, starkly, the polio survivor is fully medicalized, as the work of medical and psychological experts help him overcome his disability so that society will not discriminate against him. And as a result, his family and friends can joyfully welcome a survivor whose body is no longer marked by the disease.
PATIENTS AND PARENTS
The public had always had a say in polio therapy: whether to take a paralyzed child to a hospital or clinic, whether to follow the advice of the doctor or nurse, whether to remove braces and other apparatus after the child had been released from the hospital, and whether to take the child to follow-up orthopedic visits and allow orthopedic surgery. Family resistance had long been reviled by professionals and explained as the result of ignorance. When polio expert Robert Lovett argued for the necessity of rest, he admitted “in nothing is it harder to secure the cooperation of the parents.” So firm were these refusals to cooperate that Lovett saw these other children as useful trial subjects. To assess his methods he had “a fair number of controls in the children of unintelligent parents who have refused to follow the prescription of rest.”57 In his view, only the children treated by his prescription of rest and splinting were able to recover to the fullest possible extent.
Kenny’s work, recognized by physicians and sponsored by the NFIP, offered a respectable way to counter a doctor’s advice. When one young man who was paralyzed in both legs was told he needed a plaster cast, his father refused, telling the doctors “no son of mine will ever be put in plaster to make him a cripple for life.” The parents then contacted Kenny who sent one of her technicians.58 Similarly, 2 tenacious, “hard-to-convince” parents were outraged when a neurologist told them that their son “would never walk again,” a comment “that, in our opinion, was merely his opinion.” They insisted that the hospital call a consultant who advised “using the Kenny treatment for which the hospital had to order packs and other equipment.” After a month the parents agreed to move their son to another hospital but found it provided only “stringent, run-of-the-mill, assembly-line treatment” that they believed “did our boy more harm than good.” Finally the specialist “admitted he had made a great mistake,” and the parents took their son to the Kenny Institute in Minneapolis.59 Unfortunately we have no record of whether he was ever able to walk.
From the outset Kenny’s work demanded a major role for her patients’ family caregivers, which in most cases meant the mother.60 In 1943 Georgia Fischer came to Minneapolis from her home in New Orleans to learn “the treatment” for her son Phil who was a patient at the Institute. After they returned home, the mother was “besieged with telephone calls and letters” from other parents with paralyzed children. “We will ever sing your praises,” Mrs. Fischer assured Kenny, and “it is a great satisfaction to be able to continue his treatments.”61 Kenny’s publicized experience with improving the lot of chronic patients left many families determined to continue her methods for years. In 1941 Mr. and Mrs. Howard Allen of Glencoe, Minnesota, had talked with Kenny and had their son examined by Pohl. Two years later they were still “putting on hot packs and doing correction exercises daily” but wanted to bring him to the Institute to be sure that they were “doing the exercises etc in the correct manner so that they will really do him some good.”62 Involving parents in this physically demanding work was difficult, especially since most assumed that doing it properly would ensure a full recovery.
Kenny’s textbooks left a certain ambiguity about the level of professional training necessary for her work. Although her training courses were targeted to professionals, polio survivors and their families saw them as a potential resource. In January 1943 when newspapers announced that Kenny was coming to teach a course to physical therapists at New York University, letters from parents with disabled children flooded in asking to take it as well.63 Although Kenny stressed the professional nature of her technicians when talking with doctors and physical therapists and bemoaned the level of teaching at centers other than the Institute, she did not discourage members of the public from thinking they could apply her treatment at home. When she visited Los Angeles in 1943, for example, she not only met with physicians and nurses at local hospitals but also gave a public lecture illustrated with projected pictures and answered questions from mothers.64 The problem of the improper use of the Kenny method was as much a “result of popularization through Kenny’s own publicity as anything else,” a NFIP publicist commented. Kenny did not stress properly “WHO gives treatment … how can she blame people from thinking anybody can do it, and that doctors aren’t necessary?”65 Journalists also featured success stories of parents who used the Kenny method without specialized training. In its February 7 1944 issue Newsweek ran a story about a mother of 8 from Warrenville, Illinois, who heard about Kenny’s methods and took them into her own hands. She “prepared steaming, sterilized packs” and after 3 months her son Dwight could do farm chores.66
When Kenny decided to dedicate her autobiography to “The Mothers of Mankind” she was characterizing patients with polio as children and their mothers as their primary caregivers. Her emphasis on mothers
also reflected her tendency to sentimentalize her work, ignoring the fact that she and her technicians worked almost exclusively in institutions and that she believed hospitals were the best places to provide both acute and rehabilitative polio care. By the mid-1940s Kenny talked more often about teaching mothers to continue the exercises and hot packs she recommended after the child had left the hospital.
In their search for the best care for their child, parent after parent wrote to Kenny, telling her how they had disregarded the doctor’s orders, and all reported that they were glad they had. One 4-year-old girl had spent 2 years in the Eastern New York State Orthopedic Hospital in Schenectady. When she was discharged in 1942 her doctors told the parents that her muscles had improved as much as possible and advised an operation to stabilize her ankles and then a spinal fusion when she was older. She came home wearing a body corset and 2 full-length braces, unable to sit up without support and allowed only a half an hour each day to try. After 3 months without much improvement the parents “disregarded the doctor’s orders, took her braces off during the day, and let her play on the floor as long as she wished.” Before each day’s exercises they gave her a hot bath followed by a cold shower. Now, the parents reported proudly, with casts only on her feet to keep them from turning inward, she was crawling and pulling herself up by holding onto a chair.67
BODIES ANEW
The promise of functionality and the hope of counteracting the psychological and social trials of living with a disability attracted teenage and adult survivors and their families. Paralyzed by polio in 1931 Betty Adler was treated at the Baltimore Children’s Hospital-School and then at Warm Springs. Adler wondered whether Kenny’s methods would give her “the possibility of recovering sufficient muscular power to enable me to again walk and resume a normal existence.” She had “read almost everything by and about you, I have so much hope in what you have to offer.”68 A Jersey City woman requested treatment for her 22- year-old son who had both hands paralyzed because he was “so sensitive about his condition—especially when friends about his age visit him for while and then leave hurriedly for a dance, date or other social activities.”69
A determination to conquer paralysis and to ignore the pessimism of doctors pervaded the letters Kenny received. In 1934 doctors had told Dorothy Meissner that she was a hopeless case and would never walk again. Eleven years later Meissner, now a high school student in Morristown, New Jersey, wrote to Kenny. After the doctors gave up on her, she and her mother had devised special exercises even though “the hospital which I attended every day did not know I was doing this.” She then demonstrated her new-found strength to the hospital staff who “were greatly pleased and thought it wonderful but warned me not to try and stand.” She ignored this advice, “thinking that if I did not ever walk again I would not want to live.” After a year and a half Meissner walked into the hospital “and all the doctors gathered around and, Sister, they couldn’t believe their own eyes.” Her picture and story were in the newspapers. She was now one of the best tennis players in her school, and could also swim, ice skate, roller skate, and ride horses.70
Others wrote asking advice after they listed in detail what they had done for themselves. Charlotte Birch, a 23- year-old woman from Brooklyn, had spent almost 2 weeks when she was 19 years old in the Kings County Hospital with the left side of her body paralyzed. “I begged to be taken home and at home my parents had a nurse give me massage and hot applications to my hand and foot.” She also “practiced walking when no one was watching.” Within a year she had been able to return to work and was satisfied that now “few people can tell that there is anything wrong with any part of my body,” although her hand was “still not right.” For Birch, her search for therapeutic help made Kenny’s expertise crucial. “I was determined to walk and I did and I have the same determination for my hand but I can’t remedy it with just determination.”71
A DIFFERENT KIND OF POLIO
Kenny’s version of polio care—with cheerful, comfortable and active patients—was an inversion of standard institutional care. It also challenged the pervasive fear of polio infection. In dramatic stances she stood next to her patients, usually without any mask, touching their bodies, completely unafraid.72 Patients with polio and their families were used to being stigmatized. Some neighbors were so frightened that they would not raise the windows on the side of their house next to the home of a stricken patient; people living in the same block would walk on the other side of street to avoid passing close to a patient’s house, even after the patient had been taken to the hospital. Many rooming houses and hotels refused to rent rooms to anyone who had been exposed to polio.73 “Years after I had polio,” a survivor recalled, “when adults saw me coming they would say out loud to their children to stay away from me because they could ‘catch’ it.”74
Inside hospitals the staff also stayed away from those who worked with polio patients. One hot packer learned she was “in the ‘dread ward’ ” when she went into the hospital’s kitchen and “the negro woman almost swooned in terror, saying that so long as I wore that robe, I mustn’t go near anyone, nor into any part of the hospital, other than the rooms where the polio was confined.”75 During an epidemic in Florence, Alabama, polio nurses at the Eliza Coffee Memorial Hospital, sitting in the hospital’s dining hall, were shunned initially, and “ate hurriedly feeling as miserable as a person who has failed to don a conspicuously necessary article of wearing apparel.”76 By the late 1940s, however, the courage of Kenny technicians as well as a substantial increase in the numbers of patients led to a decline in such strict contagion rules, and even masks were not used on many polio services.
Kenny’s work, unlike standard care, made much of the pain of polio—its clinical significance as well as its emotional toll, and the relief that hot packs could provide. For Kenny pain was central to the disease, not an unfortunate side effect of best care, and she spoke of the “tragedy” of orthodox care that left patients with “a look of pain and fear.”77 This pain, which she argued most doctors could not explain, suggested to her that supposedly normal muscles were in fact directly affected by the polio virus and must be treated. For her pain was a diagnostic sign. She began treatment almost at once “while the patient was still in great pain,” arguing that if technicians waited until the end of the 3-week isolation period, stiffness would have started, “deformities have begun to develop, [and] precious time has been lost.”78 Skeptical orthopedists mocked her highlighting of this symptom, arguing that this was the kind of thing an emotional, poorly trained woman would do.79
The popular press loved this debate. The “old treatment” was “painful” and “produced miserable results,” Colliers reported, but with Kenny’s methods, “pain disappeared in two to three days—instead of lingering for as many weeks.”80 A Buffalo supporter described the faces of the children: “I saw no eyes deeply gouged with pain; I saw no foreheads lined with agony; I saw no lips thinned with suffering. Everywhere was a spirit of optimism, confidence, cheerfulness.”81
Some physicians, such as the editor of the British Medical Journal, admitted that they had frequently denied the significance of pain in polio, and it was a “matter of reproach that we have so long evaded the questions raised by this striking symptom.”82 Those physicians who already disliked Kenny and her claims to have transformed the management of polio, however, discounted this emphasis on pain. “In spite of the fact that Sister Kenny harps on the idea that the disease is accompanied by excruciating muscle pain, this has never in the experience of most of us been an outstanding symptom,” Virginia orthopedist Robert Funsten declared in 1944. Pain was usually present only “when movement is a factor” and was always relieved by immobilization.83
Kenny and her patients saw the neglect of polio pain as a sign that physicians did not listen to their patients. Many of her medical opponents, Kenny argued, believed that “pain is not an important feature of the disease [but] … this is not the opinion of the patients.”84 Mary Lou
Drosten, who “endured four weeks of hell on earth” during her hospital stay, recalled that the staff did nothing to relieve her “pain and discomfort.” She had “no hope in my heart until I learned of the Kenny treatment.”85 William Foote Whyte recalled his “constant and intense pain” in his paralyzed legs in the early 1940s, and the hot packs used at the Massachusetts General Hospital, which “relieved my pain and helped me relax, at least temporarily.”86
Doctors, nurses, and physical therapists found that the use of Kenny methods made the task of maintaining their patients’ morale much easier. Kenny’s attention to ameliorating pain also led patients to be more cooperative in muscle training. Indeed many child patients saw muscle reeducation as a game. If Kenny’s methods were more “generally employed,” one New York physician argued, “there will not occur so many of the emotional and physical wrecks that we see even now, in spite of much of the expensive orthodox treatment.”87 Kenny’s focus on alleviating physical pain was also linked to physiological health. Patients who had not had Kenny treatment, according to Ethel Calhoun, a Michigan physician who was a strong Kenny ally, “had severe atrophy and impaired circulation, with blue extremities, dripping with perspiration, and often with ulcers present,” while the skin of Kenny-treated patients was “soft and pliable” with good circulation and “very little atrophy.” Such clinical signs meant that patients could hope for a kind of visible normality. “These patients often remark that they are very thankful they do not look deformed.”88