Leprosy and Stigma in the South Pacific: A Region-By-Region History with First Person Accounts by Dorothy McMenamin (review)

More even than AIDS today, or venereal disease through the centuries, leprosy is a disease that is defined by social stigma, perfectly reflected in the title and content of an article in the New York Times (Sharon Lerner, “Leprosy, a Synonym for Stigma, Returns,” New York Times, February 18, 2003, accessed June 2, 2013, http://www.nytimes.com/2003/02/18/health/leprosy-a-synonym-for-a-stigma-returns.html). In another Times article, this one on June 19, 1995, Rick Bragg included a story of some residents of Carville Leprosarium in Louisiana enjoying a 1937 World Series game. “A delicious escape, Sister Hilary Ross recalled in her diary at Carville,” until the announcer called the umpire the leper of the game for making a bad call. “Everybody despises him, but nobody touches him,” the announcer said. Sister Ross wrote, “You could see the joy drain from their faces” (“The Last Lepers,” accessed June 2, 2013, http://www.nytimes.com/1995/06/19/us/the-last-lepers-a-special-report-lives-stolen-by-treatment-not-by-disease.html?pagewanted=all&src=pm). In Leprosy and Stigma in the South Pacific, Dorothy McMenamin says she hopes the use of oral histories “provides another step towards hastening a transformation in attitude towards the victims of leprosy” (v).

The author interviewed former patients to collect archival material for the International Leprosy Association Global Project on the History of Leprosy in the South Pacific. This project has encouraged an interest in the historiography of leprosy worldwide. The oral history project endeavors to record the voices and history of people who have had leprosy. The author specifically focused on the experiences of leprosy suffers and their caregivers.

Investigating stigma was not McMenamin’s intention or the focus of her research originally. But the theme of stigma was so prevalent she decided to examine the conditions that cause it through the oral histories of patients.

Focusing on five far-flung areas in the Pacific in which leprosy is endemic (Fiji, New Caledonia, Samoa, Tonga, and Vanuatu), McMenamin uses a history of leprosy in those areas, the treatment of patients, and oral histories to understand the stigma attached to it. Dense with references, McMenamin’s writing employed her own New Zealand–based English, which made the book feel denser and somewhat difficult to navigate. But I learned a lot about the history, historiography, and treatment of leprosy in the South Pacific, and I greatly appreciate the opportunity to develop such a clear and balanced view of this mysterious disease.

Malicious misperceptions about leprosy have abounded through the years. Older misperceptions include its being highly contagious and that sufferers have limbs and other body parts simply decay and fall off. McMenamin cites three specific factors as the causes of stigma: texts and teachings that aligned leprosy with Christian ideas of sin and uncleanliness; fear of contagion, mutilation, and disfigurement; and fear caused by twentieth-century medical practices that advocated isolation.

In fact, the disease mentioned in the Old Testament is probably a type of psoriasis, mistranslated, since leprosy was not known in the Middle East before 600 BCE. The disease offers a very low level of infection. Since Gerhard Hansen’s work in 1873 isolated the bacterium, later research found that 95 percent of populations have a natural immunity to the disease. The mechanism of transmittal of leprosy has not been determined, although droplet and airborne infection may be the cause. Rod Edmond (Leprosy and Empire [Cambridge: Cambridge University Press, 2006]) suggests that Britain and its colonies reacted to leprosy’s perceived contagiousness by isolating sufferers in off-shore colonies in the nineteenth century, a practice that was later included in medical treatment of leprosy. He suggests that the Catholic sisters, who were among the few who were willing to work with leprosy sufferers and offer them care, consistently reinforced some of the...