Leprosy versus Hansen’s disease. The conscientious motivations behind the name change have largely failed.

Leprosy Mailing List,
June 20th, 2009
Ref.: Leprosy versus Hansen’s disease. The conscientious motivations behind the name change have largely failed.
From: Poorman E., Boston, MA, USA

Dear Dr. Noto,

I thank Drs. Booth and Manimozhi for their inquiries into my article. I refer them to the explanation offered there as to why I use the word "leper." Simply put, I NEVER call a person a leper (though occasionally this is done by patients themselves amongst trusted friends), and I use the term leper colonies as I find the notion of "Hansen's colony" anachronistic and revisionist. There would never have been colonies for a disease as little contagious as Hansen's were it not known as leprosy, and to use that term in connection with isolation is to misunderstand the whole of the disease's history. If this is not clear from the entirety of my article, and not simply the abstract, I apologize.

"Currently, leprosy is more or less equated with Hansen’s disease. But the former is as much a social condition as a bacterial disease, while the latter is a highly medicalized affliction in which the bacteria is considered far more important than the experience of the disease.¬ To state it more simply, to call oneself a “Hansen’s patient” (hanseniano, in Portuguese) is to talk about the presence of an invading bacterium, while to call oneself a “leper” (leproso, in Portuguese) is to subjugate the biological definition to the social experience of the disease.

Historiography and the process of translation and interpretation have caused several historical diseases to be known as “leprosy.” Therefore, it is not that leprosy was consistently believed to be repulsive, but that repulsive diseases were consistently given the name of “leprosy.” Renaming leprosy “Hansen’s disease” is as much a reflection of the shifting view of disease, in which the causal agent is paramount, as an attempt to conquer the disease’s stigma. The conscientious motivations behind the name change have largely failed because there is little clarity on this concept, both among academics and the general public....

In a leper colony outside of Rio de Janeiro, Curupaiti, where I worked for seven months during 2007, residents occasionally counsel those who are recently diagnosed with Hansen’s disease. “You have Hansen’s disease,” I heard one resident say to a young man, who had come to have his bandages changed. “But take care of yourself, or you’ll get leprosy.” The interaction became an oft-repeated joke among employees of the hospital, who considered the explanation to be more evidence of the residents’ deep-seated ignorance about their own disease. I did too. But in the time that I have had since to reflect on this peculiar community, I believe that this resident demonstrated more astuteness about his disease than I had. He had lived his life with leprosy. He had been officially sanctioned a leper by the Brazilian government. He had been forced to give up his family outside the colony, and—because “healthy” children were removed from their “sick” parents—all hopes of creating one within. By contrast, the younger man had Hansen’s disease, which could be treated with antibiotics and controlled through diligent hygiene. Though he may have suffered discrimination, he could come and go to the colony as he pleased. As long as he did not develop the visible disabilities associated with Hansen’s disease, he could conceal it from the world."

All the best,

Elisabeth Poorman