The Bleeding Disease: Hemophilia and the Unintended Consequences of Medical Progress

4 Normality within Limits

115 chapter four Normality within Limits In 1955 the producers of the early television medical drama Medic devoted an entire half-hour episode to the story of Davey Stinson, an eleven-year-old hemophiliac who had cut himself badly after landing on a glass of milk that he inadvertently knocked from his bedside table. At the hospital, the doctors eventually stop Davey’s bleeding with the help of a hematologist and three transfusions. As Dr. Styner informs Davey’s parents that their son has pulled through, the father asks about his son’s future. dr. styner: Your boy’s alive, Mr. Stinson. Twenty years ago, he would have been dead. mr. stinson: Alive? Alive for what, so he can spend his life in hospital beds with braces and wheelchairs? Sensing that Davey is waking and conscious of their conversation, Styner asks the parents to step outside, so that he can tell them “the truth.” dr. styner: There’s a man in Michigan, and another one back in Massachusetts. They’ve isolated the normal protein in the blood that your son lacks. There are a lot of problems with it. It may be months or even years before it can be used clinically. But there it is. Somebody’s doing something about David’s trouble. . . . You’ve got a sick boy, but you are not alone with him. . . . Tomorrow, maybe a year from tomorrow , the man in Michigan or maybe the man back in Massachusetts, maybe they’ll finally hit on the right answer. . . . Kids like Davey can jump on their bikes and not worry about bumps, bruises. 116 the bleeding disease But unlike Mr. Stinson and Dr. Styner, the scientific men in Michigan and Massachusetts were real. As Medic portrayed in surprising detail, the hemophilia patient’s future lay in the hard work and continued progress of experimental hematology. When Mr. Stinson pressed Dr. Styner on whether Davey would live another five years, melodramatic music cued, and Styner responded: “maybe five, maybe fifty.” Like most popular accounts of hemophilia in the 1950s, this episode of Medic, revealingly titled “A Time to Be Alive,” highlighted the new hope and inspiration that the present and future held for hemophilia patients and their families even as it reminded viewers that the natural course of hemophilia remained grim. Most boys and men with hemophilia still faced dismal prospects. Yet the story suggested that changes in postwar medicine and society were transforming the expectations of and for people with hemophilia.1 The message was clear. Something like a normal life would one day soon be possible for the hemophiliac in postwar America. But was this true? Beginning in the 1950s, the improving fitness of the “hemophiliac” in the United States was often judged in terms of idealized visions of American boyhood and manhood, mirroring the therapeutic focus on a predominantly male, pediatric population. Simply put, the goal of postwar hemophilia management was oriented toward transforming sickly boys into men who were capable of leading productive and fulfilling lives. Talk of normality served this goal. Professional writings about hemophilia in the first half of the twentieth century mentioned the word normal only in terms of what physicians judged typical of the malady. Journalists and other popular writers seem not to have used the concept of normality at all when speaking of hemophilia before this point. Beginning in the 1950s, however, Americans in the emergent hemophilia community began invoking the word normal when imagining the prospects of the hemophiliac. Normal became an expression of the ideal as well as the typical. The word—along with its linguistic kin normality and normalcy—provided advocates of hemophilia management with convenient shorthand for expressing a diverse range of goals, most of which were unprecedented in their optimism. Yet the goal of a normal life was a largely unexamined ideal in the 1950s and 1960s. Patients, parents, and their physicians did not usually say what they meant when they invoked the idea of normal. Nevertheless, whatever it was that patients, their parents, and their physicians sought by invoking Normality within Limits 117 the idea, it was undoubtedly critical to how advocates of hemophilia management believed the life of the hemophiliac should be governed. The life experience of Americans with hemophilia changed significantly in the 1950s. A recognizable hemophilia community emerged within the United States and other developed nations as medical efforts to manage the disease progressed...