Chapter 1 Legacies of Leprosy The world’s “seven billion human beings are all equal,” asserted the Dalai Lama on his March 2014 visit to the Tahirpur Leprosy Complex in the megacity of New Delhi. He continued, “People should not look down on others. It is totally wrong. Discrimination is a sin” (“Condemning Discrimination” 2014). And yet, as a longtime resident of the Tahirpur complex declared, echoing the senti- ments of people living with Hansen’s disease in many parts of the world, “We face a thousand indignities every day” (“Stigma Hinders” 2014).1 Four thousand miles away, on a remote island in Japan’s Inland Sea, Tomita Mikio, a healthy, middle-aged resident of the Ōshima National Sanitarium (国立療養所大島 青松園, Kokuritsu Ryōyōjo Ōshima Seishōen), lamented that he had attempt- ed many times to live outside the sanitarium but was unable to do so. He had not even been able to obtain a driver’s license, having been dismissed from driving school when the staff learned he was from Ōshima and therefore had been treated for leprosy. And so, he says, “I was lucky that I had a place to come back to [i.e., Ōshima] … a place where I felt at home and normal” (Sims 2001).2 Caused by the bacterium Mycobacterium leprae, leprosy, also known as Han- sen’s disease, is a chronic infectious condition that often first manifests with spots on the skin or numbness in a finger or toe.3 Although greatly feared be- cause of how drastically it can alter physical appearance and cause physical impairment, Hansen’s disease is one of the least contagious of the contagious diseases, since the vast majority of the world’s population has natural immu- nity. Hansen’s disease has been readily treatable since the 1940s, in the last few decades with multidrug therapy, but if left unaddressed it can permanently 1 India imposes severe penalties on individuals with leprosy, including forbidding them from working and traveling in public. The nation is home to about 700 leprosaria (Mandavilli 2019). 2 Ōshima was home for seven decades to acclaimed Japanese poet Tō Kazuko (塔和子, 1929– 2014). Tō was diagnosed with Hansen’s disease as a young teenager. Fearing for their reputa- tion, her siblings moved away from their hometown of Seiyo (on Shikoku) and did not inform their spouses about her. But after her death, one of her brothers insisted that her ashes be buried in the family grave, which remains unusual for people with leprosy, whose pseud- onyms, which they are forced to take when entering leprosaria, frequently remain intact (Takaki 2014). 3 Some individuals with this condition prefer the term Hansen’s disease while others prefer the term leprosy (Eunjung Kim 2017: 167–168). I use the terms interchangeably, except when re- flecting historical or contemporary usage. © koninklijke brill nv, leiden, ���� | doi:10.1163/97890044�018�_004 Karen Laura Thornber - 9789004420182 Downloaded from Brill.com10/02/2021 11:08:24AM via free access <UN> 44 Chapter 1 damage the skin, nerves, limbs, and eyes, causing blindness, crippling, and de- formity (Covey 1998: 89–90).4 As recently as the 1980s, millions of people lived with Hansen’s disease. The World Health Organization achieved its stated goal of “eliminating” the disease at the global level in 2000 (i.e., disease prevalence reached <1 case per 10,000 people), and by 2005, with a few exceptions, all the world’s countries had reached the goal of elimination at the national level. But elimination is not eradication, and in several regions leprosy still exists as a public health problem. New cases continue to be diagnosed, with more than 155,000 in Asia, 33,000 in the Americas, and 20,000 in Africa in 2013 (World Health Organization 2014: 389–395).5 These figures stem partly from the con- siderable stigmas that continue to surround leprosy, despite the disease having long been curable. People so fear social ostracism that they delay seeking med- ical care and thereby increase the risk of infecting others. In many communi- ties, even those people who have been cured continue to be stigmatized, their healing impeded and wellbeing imperiled. And even when external stigmas are ameliorated, self-stigma can remain powerful, people having internalized the negative attitudes and behaviors to which they were subjected.6 In fact, no health condition has a longer continuous history of stigmatiza- tion and social and physical segregation than leprosy. For millennia, those with this disease and similar skin conditions have been shunned on all the world’s 4 See also World Health Organization (2019d) and American Leprosy Missions (2019). Lepro- matous Hansen’s Disease takes the form of numerous nodules and lesions on the skin, while neural leprosy can result in facial paralysis. Multidrug therapy includes dapsone, rifampicin, and clofazimine. 5 India alone accounts for nearly 60 percent of global Hansen’s disease cases; India, Brazil, and Indonesia are the most highly endemic countries for the disease (World Health Organization 2014: 391, 400). Although India declared in 2005 that leprosy had ceased to be a problem in the country, according to the who, more than 100,000 new diagnoses are made each year. To be sure, by 2005, symptomatic cases of leprosy in India had dropped to fewer than 1 case per 10,000 people, which meets who standards of the disease being “eliminated as a public health problem.” But resources then were redirected to aids and tuberculosis, public aware- ness of leprosy fell rapidly, stigmas proliferated, and numbers of Indians infected by the dis- ease rose quickly (Mandavilli 2019). In 2014, new cases of leprosy were reported in 121 countries, including the United States. See American Leprosy Missions (2019). In some parts of the world animals carry leprosy, in- cluding in the United Kingdom, where red squirrels have been found to be infected with Mycobacterium lepra (McNeil 2016a). 6 Internalized stigma is common among persons with leprosy, impacting their quality of life in ways similar to stigma experienced as discrimination (Van Brakel 2014: 146). See also Nicholls et al. (2005), Rensen et al. (2011), and Stevelink (2012). Karen Laura Thornber - 9789004420182 Downloaded from Brill.com10/02/2021 11:08:24AM via free access <UN> Legacies of Leprosy 45 inhabited continents.7 The severe stereotypes and stigmas, and especially the considerable fears surrounding leprosy that these attitudes have stoked, have long shaped public policy (Covey 1998: 91). Most notable has been the tenden- cy across the globe to quarantine people living with Hansen’s disease in lepro- saria, permanently separating affected individuals from their families and home communities.8 As Mr. Tomita’s comments above suggest, leprosaria have provided welcome retreats from social hostility. They also have been sites of unfathomable abuse.9 This chapter first outlines the history of leprosy and social responses to the disease in early Christian societies and then in Europe and the United States; the kingdom (1795–1893), republic (1894–1898), and territory of Hawai‘i (1898– 1959); and Nigeria, Japan, and Korea. I follow with several examples of how literature from around the world has been used to amplify stigmas toward the disease, before turning to select writings from Hawai‘i, Japan, Korea, Nigeria and other sites that condemn these stigmas, depicting social attitudes and be- haviors surrounding leprosy as causing greater anguish than the physical symptoms of the disease itself and in so doing, advocating for meaningful change. Special attention is paid to the impact of Western and Japanese impe- rialism on attitudes toward leprosy and to how those with this disease are treated in both imperial and colonial societies. 1 Leprosy, Christianity, Europe Christians for many centuries tended to regard leprosy and similar skin condi- tions more as divine retribution than as diseases, outward manifestations of an individual’s aberrant character, moral corruption, and frequently depraved sexual desire (Covey 1998: 91–94).10 The Bible refers to those with disfiguring 7 As Leung points out, the problem of identifying leprosy in early China is similar to that in much of the ancient world. Leprosy was long associated with the disease şāra‘at, from the famous passage in Leviticus discussed below. Yet recent research suggests that the biblical term actually refers to a variety of skin diseases (2009: 4). See also York (2012: 115). 8 Quarantine sites for leprosy patients have gone by a variety of names; in English alone they have been called leper/leprosy colonies, leper/leprosy hospitals, leper/leprosy hous- es, leper/leprosy settlements, leprosaria, and lazar houses among other names. 9 Most extant leprosaria are in Asia and Africa. One exception is Tichileşti, in a remote corner of Romania, which houses Europe’s last leprosy colony. The fewer than two dozen residents are free to leave, but they do not, given that “in the past too many lepers have been stoned, burnt, and beaten by panicked peasants shouting, ‘Unclean, unclean!’” (Boy- es 2003). 10 See also Brody (2005). Karen Laura Thornber - 9789004420182 Downloaded from Brill.com10/02/2021 11:08:24AM via free access <UN> 46 Chapter 1 skin conditions as dirty, unclean, and impure, and many took seriously the mandate set forth in the Old Testament that “the leper who has the disease shall wear torn clothes and let the hair of his head hang loose, and he shall cover his upper lip and cry, ‘Unclean, unclean.’ He shall remain unclean as long as he has the disease; he is unclean; he shall dwell alone in a habitation outside the camp” (Leviticus 13: 45–46) (May and Metzger 1962: 138). But in the New Testament Jesus Christ is depicted as readily healing a man “full of leprosy” (Luke 5: 12), while the desperate beggar Lazarus, who in life is “full of sores,” in death is seated beside Abraham at the “feast in heaven” (Luke 16: 19–31).