Carville: Remembering Leprosy in America

4. Telling It Slant: Personal Narratives, Tall Tales, and the Reality of Leprosy

{ 88 } Telling It Slant PERSONAL NARRATIVES, TALL TALES, AND THE REALITY OF LEPROSY Tell all the truth but tell it slant— Success in Circuit lies Too bright for our infirm Delight The Truth’s superb surprise. —Emily Dickinson Humankind cannot bear very much reality. —T. S. Eliot Murder in the Cathedral For most people, the truth’s “superb surprise” of having someone say to them “I have leprosy” is more reality than they can accept or even fathom. Some people may not even be aware that Hansen’s disease still exists in { 4 } Telling It Slant { 89 } the United States or that there is even a possibility that former leprosy patients might be sitting next to them. In fact, it is so unreal to most people that references to leprosy are almost always regarded as a joke. The possibility that someone is telling the truth when saying, “I have leprosy,” seems to be frightening and threatening to people whose only associations with leprosy may be from the Bible and Ben Hur. Images of the hooded person carrying a bell and shouting “Unclean, unclean” when anyone approaches quickly come to mind. Because of this, people who have this disease learn that it is much more adaptive to “slant” the truth in dealing with the realities of leprosy. In an article on leprosy and stigma, Philip Kalisch notes: “About 95 percent of the patients outside Carville leprosarium concealed the nature of their illness from all but very close family and friends since they knew from their own and others’ experience that they would not be hired by a prospective employer if it was known that they had or did have leprosy” (1973: 531, note 125). Kalisch further says: “There has almost always been a deep primitive fear of leprosy in men—a fear often times reinforced and overladen by religious fear. . . . But unlike other social stigmas of mankind (racial, for example) Americans did not think leprophobia incompatible with Christianity. On the contrary, such a view, in loyal union with the supreme code of Leviticus, only strengthened { 90 } Telling It Slant the incarceration movement. It made possible the cleansing from society of an evil force” (1973: 524–25). While some former patients, like Johnny Harmon, did speak openly about their illness, in general, most patients and former patients could only hope that their “secret” was not discovered. In a 1975 article in The Star, Julia Elwood describes the trauma experienced not only by herself and her husband but by her children as well as a result of “rumors” in the neighborhood that they had leprosy. She says: “What happens when this piece of news gets to the persons who delight in spreading garbage? Besides the fact that damaging news travels with ultra-sonic speed, it invariably hurts innocent bystanders. Take, for instance, children of patients. They go to school along with the rest, at the same level, but only until that fateful day when someone utters in a miasmic whisper, ‘My parents say I can’t go to your house because your daddy has leprosy’” (1975: 6). She then asks the question, “Are these children outcasts? Why?” (6). Hansen’s disease is a real illness, but leprosy is a term that historically has maintained metaphorical meanings inspired by medieval beliefs, which cause emotional responses far out of proportion to any threat or danger. In Illness as Metaphor, Susan Sontag discusses how a disease, such as leprosy, takes on metaphorical meaning, particularly if it was historically an incurable disease whose cause was unclear. She says: First, the subjects of deepest dread (corruption, decay, pollution, anomie, weakness) are identified with the disease. The disease itself becomes a metaphor. Then in the name of the disease (that is, using it as a metaphor) that horror is imposed on other things. The disease becomes adjectival. Something is said to be diseaselike , meaning that it is disgusting or ugly. In French, a moldering stone façade is still lepreuse. . . . Feelings about evil are projected onto a disease. And the disease (so enriched with meanings) is projected onto the world. (1978: 58) Speaking of the context of disgust in the high Middle Ages, William Ian Miller says, “Lepers were the most polluting of beings; unlike Jews, who could pass unless identified with special badges and apparel, they disgusted on sight. Even high rank did not save the leper. . . . they were banned from all company...