Translating Leprosy: The Expert and the Public in Stanley Stein's Anti-stigmatization Campaigns, 1931–60

This article examines three campaigns through which patient activist Stanley Stein sought to combat the stigmatized connotations of the word “leprosy.” In 1931, soon after starting the first patient newspaper at the U.S. national leprosy hospital at Carville, Stein became convinced of the necessity of finding an alternative to “leprosy.” His ensuing campaign to promote the use of the words “Hansen's Disease” to describe the condition from which he and fellow Carville patients suffered became his most passionate and life-long project. In the 1950s, Stein became involved in efforts to change the translation of “leprosy” in the Bible. Finally, in 1960, he waged a campaign to de-stigmatize encyclopedia entries on leprosy. These campaigns illustrate how even elevation of the medical expert and a seeming disdain for the public can function as a protest of medical authority and reveal a presumption that a significant degree of authority actually resides with the public.