Leprosy, Domesticity, and Patient Protest: The Social Context of a Patients' Rights Movement in Mid-Century America
Fairchild, Amy L., Journal of Social History
Historians typically regard the patient's rights movement as a product of a host of social and political changes in the 1960s, including the civil rights and other movements centered on individual rights. But in fact, the social context and broader political ideas of the 1940s and 1950s that gave rise to, shaped, and constrained the civil rights movement also influenced the patient experience. (1) During this period, patients with leprosy confined at the United States Public Health Service (PHS) Hospital No. 66 in Carville, Louisiana twice challenged and changed the terms of their confinement. (2) They did so at the apex of medical authority in America. (3) Recounting the all but forgotten history of these events provides an opportunity for deepening our understanding of the far broader challenges to medical power and authority that would occur decades later.
Leprosy--a highly stigmatized disease that patients preferred to refer to by its more technical nomenclature, Hansen's disease, or, more cryptically, as "this package" or, in Cajun, as la maladie que tu nom pas (the disease you do not name)-- (4) affected only an estimated 1,500 to 5,000 people in the US. The patient census at Carville ranged between 200 and 400 individuals from the 1920s through the 1960s. (5) On the surface, leprosy was a disease touching few, Carville a small and seemingly unimportant institution that stood apart from any broader story about America in the war and postwar period. But those confined created a community in which they articled their own version of American political, suburban, and domestic culture as they sought to gain control over the private sphere. A major societal change revolving around suburban domestic life was expressed in this unlikely setting controlled by science and the State. Through the lens of Carville, we can elaborate on the social and political changes that gave rise to and shaped patient resistance to scientific authority in an unlikely place and time.
I focus in this paper on the conflict between patients and hospital administrators over the organization and control of institutional life in the 1950s. But this analysis must be set against the backdrop of how the institution was organized and administered from the 1920s to the 1930s, which I describe in the first section of the paper. Carville stood at the crossroads of subjugation and freedom: despite the existence of institutionally unprecedented housing arrangements, because of the reality of compulsory confinement it was too hospital-like to be a home; despite its penal features, because of the unusual autonomy the patients enjoyed, it was too home-like to be a hospital. (6)
In the second section, I discuss the ways in which the therapeutic advances achieved during the 1940s prompted the PHS hospital administration to press for a stricter institutional culture and the ways in which broader societal changes enabled the patients not only to push back but also to build more of a private home life within the institution. This, then, sets the stage for the third section of the paper, where I analyze the PHS attempt to swing the pendulum decisively toward institutionalization in the 1950s. As it fought to reassert control over the patient population, it attacked the domestic life that patients had constructed within the confines of Carville. In this final, pitched battle, the private suburban home and the freedom from the State that it symbolized became the battleground for the struggle between patients and medical administrators.
The Institutional Context: Carville in the 1920s and 1930s
Like many "modern" sanitariums, the Carville leprosarium was constructed on a plan in which 12 patient dormitory buildings surrounded a nucleus of hospital, dining, and administration buildings, all overseen by a Medical Officer in Charge (MOC) and his staff of physicians, civil servants, and employees from local communities. …