Polio Wars (46 page)

“Crippled children” looking adorable and pathetic never left center stage in polio philanthropy. But letters from hopeful and sometimes angry teenagers and adults struck by polio found that Kenny's methods fit their identities well as they confronted a world that rejected them in their efforts to gain economic independence and personal happiness. Adjustment was considered their task, not the responsibility of those who made them feel inferior and unwelcome. Buildings were impossible to enter, schools unwilling to accept them, employers unwilling to hire them, and “shut-ins” seen as a legitimate role.
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In December 1943, for example, 54-year-old Phil McGrath, a basket-chair maker, celebrated his fiftieth Christmas at the Home for Incurables in Washington, D.C., where he had been brought as a 4-year-old child with polio and “never since left.”
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An identity as a disabled activist was possible, but it was a heavily constrained role. In the early and mid-twentieth century the adult Helen Keller fought for the rights of those who were blind and deaf, but, as her biographer Kim Nielsen has shown, whenever Keller ventured to discuss topics outside disability, she found able-bodied audiences suspicious, convinced that those speeches were written by others because she, as a disabled woman, was easily manipulated and politically naive.
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The NFIP made much of polio survivors who surpassed the ordinary. The January 1942 March of Dimes campaign featured Nancy Merki and Jean White, “two girls who
fought their way back from infantile paralysis affliction.” Merki, 15, from Portland, Oregon, had won the world freestyle record, and was later an Olympic swimmer; White, 19, from New York, was a roller skating champion.
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But the NFIP seems to have been unclear about how these examples related to the majority of survivors whose recovery was less complete. At a reception at the Waldorf Hotel reporters were shown “a 5-year-old boy, hobbling along merrily on crutches” and behind him “tall, strong, good looking Nancy Merki” who looked “like the popular conception of the American high school girl.” “Someday, if all goes well and money keeps coming into the great fight against this bone-wrecking disease,” NFIP officials explained, “Jerry and kids like him will be as straight and as strong as Nancy.”
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But the discrepancy was not explained. Was it the right therapy? Or luck? Or hard work?

Like many adult survivors, Marjorie Lawrence discovered that, despite her celebrity reputation, her disability left her unemployed. In what newspapers called a “poignant scene,” Lawrence returned to the stage of the Metropolitan Opera to sing at a special testimonial concert “in tribute to the courageous spirit of Marjorie Lawrence.”
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Reporters described the “steps” she was taking and her belief that “I will walk again,” but this story of “a dramatic and successful ‘come back' ” was never achieved.
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Once it became clear that she would be unable to walk, Lawrence lost her position at the Metropolitan although she continued to sing in concerts and on the radio. She entertained troops during World War II, and later taught opera at Southern Illinois University and the University of Arkansas at Little Rock, but she never again appeared in an opera.
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Neither the director of the Metropolitan Opera nor of any other opera company believed audiences would be comfortable with her visible disability.

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.
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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.”
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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.”
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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.”
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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.

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.”
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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.
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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.
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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.
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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.”
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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.”
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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.
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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.
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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?”
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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.
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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.
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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.”
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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.”
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