Carville: Remembering Leprosy in America

1. Carville, Leprosy, and Real People: An Introduction to a Culture Apart

{ 3 } Carville, Leprosy, and Real People AN INTRODUCTION TO A CULTURE APART We tell stories because, in order to cope with the present and to face the future, we have to create the past, both as time and space, through narrating it. —W. F. H. Nicolaisen Carville, Louisiana, has been associated with the care and treatment of leprosy patients for over a century. From 1894 to 1999, it was the site of the only in-patient hospital in the continental United States for the treatment of Hansen’s disease, the preferred designation for the disease historically called leprosy. Until the 1960s, patients diagnosed in the United States were legally quarantined at Carville. Many never left. { 1 } { 4 } Carville, Leprosy, and Real People The story of Carville and the patients who were exiled there—for treatment and for separation from the rest of society—is a story of survival and a quest for dignity. It is the story of the place itself and of its former residents who, against many odds, were able to survive the devastating assault that the diagnosis of leprosy brought to their personal identity. When patients entered Carville, they typically left everything behind, including their identities , their legal names, and their hopes for the future. Of all illnesses, leprosy is probably the one historically most burdened with meanings. Those meanings can range from judgmental and stigmatizing to metaphorical and humorous. Susan Sontag refers to leprosy as “one of the most meaning-laden of diseases” (1989: 92). Like other “meaning-laden” diseases, such as AIDS, it was both a serious illness and a moralistic marker. In the late nineteenth and early twentieth centuries, the highest incidence of leprosy in the United States was in southern Louisiana. To the Cajuns and Creoles in Louisiana, leprosy was la maladie que tu nommes pas (the disease you do not name). A person with a suspected case of leprosy was sometimes hidden and protected by the family. Others were banished by their families when their leprosy was diagnosed. By the mid1840s , isolation had become an accepted practice in the United States for dealing with leprosy patients. Fear of leprosy was an unquestioned physical reality in Western culture, an accepted fiction based on biblical associations with “lepers.” In speaking of the reaction to cancer as a “demonic enemy” Sontag says in Illness as Metaphor, “Any disease that is treated as a mystery and acutely enough feared will be felt to be morally, if not literally, contagious ” (1978: 6). She further says: “Leprosy in its heyday aroused a similarly disproportionate sense of horror. In the Middle Ages, the leper was a social text in which corruption was made visible; an exemplum, an emblem of decay. Nothing is more punitive than to give a disease a meaning—that meaning being invariably a moralistic one. Any important disease whose causality is murky, and for which treatment is ineffectual, tends to be awash with significance” (1978: 58). Untreated leprosy is a serious illness, a disease “written on the skin.” As Sander Gilman points out, “all illnesses written on the skin, following the medieval understanding of leprosy as a sexually transmitted disease , are always understood as deforming but also as making one’s stigma visible” (Gilman 1988: 76). At least some of the beliefs, laws, and practices from medieval times in regard to leprosy1 were still haunting patients in the nineteenth century and the first half of the twentieth century. The fear of leprosy in the United States led to the isolation of its victims and eventually to the establishment of Carville. Carville, Leprosy, and Real People { 5 } Carville, as the center was typically called, was established in 1894, a time when leprosy was endemic in certain areas of Louisiana, on a site leased by the Louisiana legislature. It occupied the abandoned slave cabins and plantation home of Indian Camp Plantation, a 395-acre plantation located along the banks of the Mississippi River in Iberville Parish, between New Orleans and Baton Rouge. The action of the legislature to establish a place for both the isolation and humane care of leprosy patients was spurred by New Orleans physician Dr. Isadore Dyer, a dermatologist at Tulane Medical School, who was { 6 } Carville, Leprosy, and Real People Indian Camp Plantation House. Courtesy of National Hansen’s Disease Program. aware of leprosy cases in New Orleans. Dr. Dyer’s efforts were assisted by the New Orleans Picayune reporter John...